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#205870 - 09/03/05 11:23 AM No/Low Starch Diet Success Stories
Dotyisle Offline


Registered: 03/07/02
Posts: 9381
Loc: Rosario, Argentina
Many an individual has come to Kickas looking for answers to their or loved ones AS demon and found an answer by changing their diet to the No/Low Starch Diet (NSD/LSD) advocated by Professor Ebringer.

The diet requires a good deal of discipline and there is a learning process before becoming totally comfortable with the diet, but the benefits if you do respond are immeasurable. Of the numerous success stories here, many different avenues have been explored, so there is much to be learned from the individuals within this forum concerning diet.

There is one side effect of this diet that may be its own worst enemy. Many individuals come here, learn of the diet, have success with the diet and then leave due to their improvement. A sense of normalcy returns and they almost forget they have AS.

This thread was created to capture their stories long after they have left so others may be encouraged from their success with changing their diet. So if you have had success with changing your diet, please add it to this thread so others may be encouraged from your story.

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#205871 - 09/18/05 07:11 PM Hi my name is Tim and I am a NSD success story [Re: Dotyisle]
Dotyisle Offline


Registered: 03/07/02
Posts: 9381
Loc: Rosario, Argentina
Dotyisle’s AS story

I was diagnosed with AS in 1996 after a year of considerable pain, I had right SI pain that made walking and sleeping difficult… actually any time I slept in a position for more than ½ hour that was not to the liking of my right SI the next morning I could not get out of bed. I can still recall the first day I called in sick to work because I could not walk… I never called in sick and my manager was so worried he drove over to my apartment.

Following proper diagnosis I took various medications that typically kept AS at bay. The key med was either sulfasalazine or the enteric coated equivalent (azulfadine). I always had a NSAID on the side as well. I was on the meds for six years… interrupted at times when liver enzymes exceeded tolerable thresholds for my rheumy.

Three times in the six years I had to discontinue my meds for anywhere from 4-6 weeks as my rheumy tried to understand the issues with my liver. Each time I came off the meds my AS pain got considerably worse… right SI pain made walking upstairs impossible, could only sleep on left side and many times had to sleep in a recliner. Low and mid back pain was also fairly bad, good deal of the time it felt like a bat was swung across my back.

Each time I went back on the azulfadine my AS calmed back down… so I managed my AS fairly well over the six years except for the times when I came off azulfadine. Consequently I became fairly anxious about side effects from my medications.

In Nov. 2001 I moved to Phoenix, AZ. Blood tests showed that my liver enzymes again were elevated. This is when I began searching for some answers on the web and came across Kickas. In early March 2002 I made my first post… a question of what med I could take to combat my liver issues. Ironic for me now looking back that I was looking for more meds to control the meds I was taking.

My liver issues did not improve so continued to look for answers on the web and at Kickas. About this time I decided it was time to give the No Starch Diet a try. Can not say that it was something that I was excited about, my bachelor nature meant I did not enjoy cooking and meals were whatever was easy… breakfast cereal and dinners a Lean Cuisine and snacked on pretzels and licorice throughout the day. This was going to a be a major adjustment in my dietary habits. However, a quote at the Kickas website from a seasoned dieter inspired me… it stated, “Eat to live, not live to eat”.

I discussed the diet with rheumy and Primary Care Physician. My rheumy stated there was no evidence that supported the diet… my Primary Care Physician stated it could not hurt, so why not try the diet, he saw no medical concerns surrounding the diet. Everyone is different, therefore anyone contemplating a diet change should discuss with their doctor in my opinion so they are aware of any complications it may present with other medical issues they may have.

I commenced the No Starch Diet in late March 2002… I was very strict at first with my meals having much of the same food over and over since I wanted to know that the diet would work for me. My early diet was much of the following:

Breakfast: Eggs, bowl of frozen fruit (typically mixed berries of blue/ras/black) and some raw veggies… broccoli, celery or carrorts.

Snacks: Carrots, celery, apples, pears

Lunch: Always a salad with tuna

Dinner: Chicken or beef with non-starchy veggies

I responded fairly well to the diet, within a week I was nearly pain free, exception was in mornings had some minor stiffness that relented after a hot shower and stretching exercises. Today I believe it worked so quickly since I was on azulfadine prior to starting diet and this med has antibiotic properties. Within a months time I tossed aside my NSAID (naproxen) and I was living med free.

The diet took extreme discipline for me, resisting all my comfort foods for the first several months was difficult, but living without AS pain was all the reward I needed to continue on with the diet. At times I ran into issues not correctly discerning which foods had starch and which did not… I thought corn and bananas would be safe, but obviously I know today they are starchy. Also learned that many sausage makers add modified starch fillers the hard way, that is to say having AS rear its ugly head. Although I know of the iodine test, I do not test my food… my test is listening to my body afterwards.

Allow I responded well to the diet, I did struggle in one area…. That was finding enough energy. I would could home from work pain free, but zapped and had to eat quite often to function. This I did not understand since others at Kickas did not have the same issue. If you read posts from spring of 2002 you can find numerous posts from I made concerning energy and the diet.

Due to changing my diet and struggling with energy I really questioned if this diet was the right choice for me for me long term, so I decided to read all I could about alternative cures to arthritis, diets, nutrition, supplementing, herbs… anything I thought may help. In all I must have purchased 30 books and read religiously in my free time. From that I learned quite a bit and gave me direction I would use later on that I would benefit from. The books that I believed helped me the most are the following:

IBS Starch Free Diet – Carol Sinclair
Breaking the Vicious Cycle – Elaine Gottschell
Alternative Medicine Definitive Guide to Arthritis – Eugene Zampieron
Probiotics – Natures Internal Healers – Natasha Trenev
Natural Ways to Digestive Health – Stephan Holt
Going Against the Grain – Melissa Dinae Smith
Paleo Diet – Loren Cordain

Despite all the learning, I still struggled with energy. To assist with my issues I began juicing and this did help. However, I found my true answer to my energy issues in the fall, nearly ½ yr after starting diet.

An apple a day keeps the doctor away… but Dragonslayer posted of Edgar Cayce’s 3 days of apples and olive oil to bring you out of an AS flare. Fasting or eating apples for three days was a big hurdle for me mentally, why would I want to restrict food for several days, this is something tree huggers did, not an accountant.

Well, I read up on fasting, asked numerous questions at the site and decided in October of 2002 to give the three days of apples a go. It was not much fun with headaches, an awfully white tongue and some aches and pains, but I made it through the three days successfully and thankful now that I had the courage to attempt. This process improved my energy and I continue to perform apple diets for maintenance issues every several months to maintain my energy. I attribute the improvement in energy to the pectin in the apples, they help to clean out the intestines and I believe allow for better assimilation of what we need to function.

After a half year, the diet was very natural to me now. No longer did I crave my old comfort foods, my taste buds seemed to change their mind what was delicious.

In February 2005 I decided to take my supplementing seriously, putting to work what I had learned early on in my reading. My only regret today is that I did not start this sooner since I have reaped dividends already.

I began taking L-glutamine and probiotic supplements. I take l-glutamine to repair the intestinal wall and probiotic for same reason and also to compete with the Klebsiella bacteria. Although somewhat expensive I have seen the benefits. I believe in the leaky gut theory and that it proliferates AS… healing the gut and correcting dysbiosis have allowed me to eat fringe foods again daily… fringe foods being those that would cause me stiffness if I ate more than once a week… like almonds, yogurt with live cultures, cheese curds… now I can eat these without issue.

Future goals of mine:
- Continue to improve GI repair lining so I can eat easily digested starches (whole grains like brown rice, quinoa etc..)
- Kayak, canoe and camp on regular basis… something I gave up due to AS, have already started kayaking again.
- Continue to improve my energy so I can bike very long distances, there are a lot of great trails in Wisconsin that go on for miles upon miles
- Stay active at Kickas and continue to promote NSD, it saved me

Current Diet:
Breakfast:
- Stoneyfield Farms yogurt on top of thawed frozen fruit, steamed non-starch veggy and sometimes eggs or turkey patty
- Apple juice
Lunch:
- Salad with either tuna, salmon or pan fried chicken, turkey on top. Olive oil dressing or salsa sauce. Salad may include the following: lettuce, red cabbage, red peppers, black olives, collard greens, kale, celery, carrots, alfalfa sprouts, broccoli sprouts, radishes
- Leftovers from dinner
Dinner (can be some of the following… not typically this is lite.. sometimes just veggy and some fruit… other times larger meal)
- Chicken, turkey or fish… sometimes beef or lamb
- Steamed veggy of some sort… broccoli, kale, collard greens, zucchini, yellow squash
- Pineapple, cantaloupe, honeydew, watermelon

Snacks – dried cranberries, raisons, pepitas, walnuts, almonds, brazil nuts, apples, pears, grapes, cherries, carrots, celery, cheese curds

Current supplements:
- L-glutamine
- Natrens Healthy Trinity (probiotic)
- Enzymatic Therapy (probiotic)
- Calcium (Natures Way or Solgars)
- Vit C (Natures Way or Solgars)
- B-Complex vitamin (Natures Way or Solgars)
- Multi vitamin (Centrum)
- Digestive Enzymes (American Health)

That is my AS journey to date.

The No Starch Diet has saved me from a life of pain, meds caused liver complications and the new biologicals were not available at the time I needed answers. I honestly believe diet is the best measure to control AS if you respond. As for my anxiety over side affects, well that has disappeared naturally.

My advice to anyone with AS, “Eat to Live, Not Live to Eat” and “Keep on kicking!”

Tim 9/18/2005

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#205872 - 09/18/05 08:39 PM Jon's NSD Success Story [Re: Dotyisle]
Kiwi Offline


Registered: 07/26/04
Posts: 1932
Loc: Auckland, New Zealand
Jon's NSD Success Story

Hi my name is Chelsea and my husband Jon has AS. He was diagnosed at age 28 within about 8 months of his symptoms beginning. It all started with just some lower back pain in August 2003 but by November 2003 the pain was spreading to other parts of his body. He made repeated visits to the doctor and physiotherapist trying to get to the bottom of it as he knew it wasn't just a pulled muscle. He started taking the anti-inflammatory Votaren to try and help but it didn't really even touch the pain. In the end it was the physiotherapist that realised it must be some kind of arthritis and so we booked in to see a rheumatologist in April. By February 2004 the AS went full blown and this was really scary for us both. He was diagnosed in April 2005 by the rheumatologist and was given a prescription for Bextra and told to come back in June.

Jon's symptoms were very severe and aggressive and soon he could hardly walk. He had severe pain in his middle and lower back. He had pain and swelling in his heels, ankles, knee, elbow, shoulder, and a couple of toes. When I would ask him his pain level he would say 8 or 9 out of 10. At this stage he began wheeling himself around the house on his computer chair to avoid walking. Needless to say we were both getting very worried as he runs his own painting business which requires him to be on his feet all day. This was pretty much impossible and our finances weren't looking too hot as we can't survive on my salary alone. Seeing Jon like this really broke my heart and we were both falling to pieces.

I began desperately reading up on AS on the internet, trying to find what treatment would help him but all I could find was drugs drugs drugs and none of them promised much either. All the websites I read presented no hope for the future - just a slow and painful worsening until he would be crippled. The more I read about AS the more terrified and heartbroken I became imagining what Jon's future held. I would cry all the way to work and all the way home but then put on a happy face for Jon and try to be strong and supportive for him until bedtime when I would cry and cry. Here in New Zealand the biological meds were not available (cost too much anyway) and the side effects of all the other drugs were terrifying to us both and Jon wanted to avoid them as long as possible. I tried researching diets for arthritis but they were mostly for rheumatoid arthritis and were all very vague and offered no logical reasons for why not eating certain foods would help. There seemed to be no pattern to what was being eliminated and no scientific reasoning to back it up. I was skeptical of "natural remedies" and wary of quackery.

Then one day I stumbled onto KickAS and found out about the No Starch Diet. I went home that day so excited after reading of other's success with the diet. When I read the techincal papers by Prof Ebringer explaining how the diet worked, it all really made sense to me and gave me so much hope. I presented the idea to Jon and expected him to say "No way" as he really loved his food (especially junk food), but he said yes straight away. I guess he was desperate enough to try anything to escape this pain.

He started the diet in June 2004 and went very strict straight away as he really wanted to get better as soon as possible so he could go back to work. He noticed a small reduction in swelling within the first week which gave him hope that it was working. At the end of that week we went to see the rheumatologist and he scoffed at the idea of a diet helping. He gave Jon a prescription for Sulphasalasine and said come back in 2 months. We never did go back and Jon never took the sulphasalazine because the diet DID work.

Jon began to improve slowly within 1 week of starting the diet. It took us about 3 months to get the diet straight and figure out exactly what he could eat. He didn't really improve much until he also eliminated dairy products and that's when his improvement really leapt ahead. What helped us get it right (besides coming here to KickAS) was the book "The IBS Low Starch Diet" by Carol Sinclair. That helped us get started by spelling out exactly what is starchy and what is not. It also explained how to test food for starch using iodine, which has proved to be very helpful.

He continued to make slow and steady progress. After 9 months on the diet he didn't have to take pain or inflammation medication anymore. He has no swelling anywhere and only some minor residual lower back pain (level 1 to 2 out of 10). He now works fulltime again and stills runs his own business. If he strays from the diet his symptoms begin to return. So the diet keeps his AS suppressed. He seems to be quite sensitive to starch and cannot stray from the diet at all but he has only been on it for 16 months so far and we are hopeful that in the future he will continue to improve and may be able to experiment a bit more with "fringe" foods. But he is not rushing anything as he is just so grateful to have found a way to help himself and be in control of his illness.

We have just started supplementing with Natren's Healthy Trinity Probiotics and hope that these may also help fight the klebsiella bacteria. He also takes starch free supplements every day: cacium with magnesium and boron, a men's multivitamin, a high potency B vitamin complex, and aloe vera juice.

Like Tim, he has also found the 3 day apple diet to be very helpful. When he was still having bad flare ups (mostly due to accidently eating starch) he would do the apple diet and it was the best and quickest way he could get out of the flare.

So now, thanks to KickAS (and especially Tim and John - you guys are my heroes ), I have my husband back and our future is full of hope not dread.

My advice to anyone contemplating the diet is - just do it. It takes discipline but the results are worth it.

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#205873 - 09/29/05 01:21 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
Dakotadan Offline
Gold AS Kicker

Registered: 07/16/01
Posts: 3451
Loc: Tucson, Arizona, USA
Hi all,

My success story is a short one.

At the KA party in Las Vegas, July of '99, I finally had time to sit and talk to Dragonslayer about the diet. By the time I got home my mind was made up and so was my determination. It was either bite the bullet and throw starch out of my life or eat a bullet and throw my life away. Not much of a choice so I went into my kitchen and threw away everything. Then I spent most of the day walking isles, reading labels and testing food at my local supermarket. I found that starch was everywhere I looked. I had no idea that starch could be hidden in so many foods. Pretty discouraging but I didn't give up. Since I grew up eating healthy rather than tasty foods and less rather than more, I decided on a simple diet...meat, salads, almonds, cheese were pretty much it. Within 30 days I felt wonderful. No more flares that had my crying for release...none.

I remained on the strict NSD for 1 full year, then I added just a bit of starch...I added rice to my dinner menu three time a week. No problem. Then I added a bit more one slice of teast when I had eggs. Still no problem. I remained on the LSD for another year and remained flare free. On my third year, I ate anything I wanted but, being used to a diet low in starch, I pretty much remained SLSD (Somewhat Low Starch Diet)and I remained flare free. Today, after 6 years, I'm healthy, symptom free and rarely even think about how much pain I was in before the diet.

I know my degree of success is rare, but not out of reach. After telling my life story to Dragonslayer, I learned that I had three things going for me.

1. I was raised by a mother who taught home economics in high school and was very controling when it came to my diet. No candy, few starchy fillers like potatos, bread, dinner rolls, etc. Birthdays were the only time cake was served and there was NO eating between meals. In fact, the kitchen was off limits when my parents weren't home. I didn't know it at the time but my father was too sick to work much and school teachers weren't well paid so our's was a poor home. When we got hungry, we filled up on fruit...our after school snacks were fruit, breakfasts were mostly oatmeal and fruit, most deserts were fruit in some form or another. I grew up in Orange County, CA where fruit was just a tree away. Oranges mostly but when is season, peaches, loquats, aprocots, lemons, Grapefruit and Persimmons were always available in someone's backyard

2. When I was 13, my family moved from Orange county to the lower desert town of Palm springs, CA. For about 8 months of the year the temepratures were in the mid 80's to over 110 degrees. This was in the late 50's so instead of sun block, we poured on a mixture of baby oil and iodine. Our afterschool uniform was a pair of cutoff levis. Most of the time we didn't wear shirts. After growing up, becoming a firefighter and retiring because of AS, I returned to Palm Springs and started a swimming pool service and repair business. Once again I spent my days in the sun wearing only shorts and no sun block. All this meant an overload of sunshine Vitimin D, which was another plus for my fight with AS.

And 3. My father broke his back in the late '30's. This kicked his AS into gear and in a very short time he was completely fused with only a few degrees of motion in his neck. Back then the doctors were about as unprepared to treat AS as they are today except the only drugs used were NSAIDs. At at end of my father's shortened life he suffered, not from the pain of AS as much as the damage those [**BLEEP**] NSAID's caused. I watched as, one by one, his organs failed until, finally there was nothing left and he died. When I was diagnosed with AS it was the first time I had ever heard the words Ankylosing Spondylitis (My dad had Marie Strumples Disease:) or had the disease explained to me. I remember two thoughts that kept running through my head...I'm going to die like my dad and I'll NEVER take those drugs. But I did...for a year. No help, never took them again. Because I refused to take NSAID's, my gut remained intact so the invasion of Klebsella was weak at the start.

That's it. Good luck and good eating

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#205874 - 10/03/05 05:49 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
wind_rider Offline
Iron_AS_Kicker

Registered: 11/12/02
Posts: 1039
Hi. I have been remiss in not posting on this thread. I think the problem is I now have part of my life back and am not chained to the restroom wondering what is going to happen next. Oh, and I can move better.

I've not left the websight, I still come here all the time to stay motivated and to try to let people know there is life after wheat.

Before this websight, I just accepted the fact that I was some sort of biological weirdo with a bad neck, bad kidneys, a perpetually achey lower back, and a terrible digestive system. I was dianosed in the '80's. I had repeated kidney infections and ended up with arthritis in my neck. As if that makes any sense to an outsider. The little research I had done suggested that I was even the wrong sex for the disease.

Then came computers. The internet. The google search engine. One day on a whim, I tried typing in "spondylitis" in the box and hit return, because on another, non related board, a poster mentioned her SISTER had it and when she strayed off her diet she had problems. Odd, I thought, I can't eat some things either. I ought to check this out and see if I find anything.

One of the websites it picked up was Kickas.

The rest, as they say, is history. I kept reading thru post after post after post on the entire websight and I absolutely could not believe what I was reading. People with the same whacko set of symptoms, out of the same northern european and native american backgrounds, altho there are others. Then the diet section. I don't know how far back I went, but it was far, far back. These are my people! They get sick on too much modified food starch! They wanna die if they eat breaded, fried things! They get weird rashes! Have horrible spines! They love to wear sunglasses outside! Perpetual indigestion on the high carb diet. Down with the wretched food pyramid !!!

As a happy coincidence, I had been battling with a recalcitrant HMO for over 3 years at that point trying to get SOMEBODY there to acknowlege I at least had the disease because sometimes, as we all do, we get complications that have to be handled differently than with a normal person. I had a horrible, horrible flare up while in their "care." I had several infections, my knee siezed up, my back was killing me, I had some ferocious bouts of dizzyness. My rib cage felt like cement. All they would do is try to get me to take anti inflammatories I could not take anyway because I have very sensitive kidneys. Now at last I had a resource. And a chart I printed off that had a list of things I should really try to avoid, and the things I should try to eat instead. It took me a while to get up enough nerve to actually post on the websight but this was not my imagination...eating certain things influenced my health dramatically.

It was not a question of "if" it was going to work, it was a given, the question was how well. It worked well enough that when I finally got my wish and got better insurance, the doctors will not believe I have anything wrong with me solely on the basis of a visual examination. I have to practically force them to scan me where I know I have damage that is blatant. I still have pain but I have function, and I do not take any drugs regularly.(if I woke up and didn't feel anything with this neck I'd think I'd died overnight... ) I do not think the diet cures the disease, I do think the diet dramatically influences the outcome.

I've always exercised so this helped. I have horses I take care of on a farm, and they motivate me to try to stay as active as possible. I still do some limited riding, at a walk. I know if I give in and not move, and start fusing, I won't be able to do that at all, it would be too dangerous,so I try to keep moving and coax another month or another year out of it. It's not easy, but nothing really is, and it beats the alternative that was originally forcast for me.

I'm now, after several years, probably one of the more liberal eaters on here, as at first I wouldn't dream of going near something like a banana or some rice, and now sometimes I do. The main thing for me seems to be staying away from bread (except almond bread), cereals, wheat and other starch derivatives. And I always let my gut tell me what I should do. I eat taco fillings all the time from this one restaurant- BUT NOT THE SHELLS. I never react to their food. I've tried it at other places and it doesn't work so well. I've learned the hard way that the "low-fat" craze means that some joker has mutilated a perfectly good food product by sneaking some starch filler in it. Do not put that low fat crap sour cream in my food!!!!! Why does tuna fish juice have to have mystery vegetable broth in it now? At times it really does seem like the ag industry in this country is determined to turn us all into a bunch of feeder cows at a grain trough.

I hope that if the lower and no starch diets could help someone, that they will read this and give it a try. I wish to thank all the posters on this site who persevere and write about their experiences.

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#205875 - 10/04/05 03:02 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
bilko Offline
Colonel_AS_Kicker

Registered: 09/05/01
Posts: 2354
Loc: London
It started with my brother. He is a few years younger than me and when I was away at college I was told he had been taken into hospital. He had had severe pain all over his body and just lay on his bed at home, unable to move or sleep. After a week of this he was totally exhausted and his doctor called the ambulance and off he went. This happened twice to him and I thought poor sod . . . Then a few years later I woke up one morning and when I tried to get out of bed I had this incredible pain in my hip and I thought oh . . . four years later I finally got the diagnosis too. Well it gradually progressed up my spine in 'classic' fashion, and when it reached my neck in 1977 I was desperate for proper help. I finally got a referral to a proper rheumy clinic and while I was there the doctor asked if I would like to attend a new AS research clinic at another hospital, and so my treatment passed to the doctor there, Alan Ebringer.

He had started the clinic with the hypothesis that the cause of AS was molecular mimicry between HLA B27 and some bacteria or other in the bowel. But which one? Klebsiella soon came under suspicion and we patients would turn up at the clinic with some of our faeces in sample pots, our blood was analysed in four different labs and then came the dietary trials . . . the first one was three months low fibre (and constipation!) and next came the low starch . . . so here we are.

I took NSAID's for over twenty years, sulphasalazine as well, but now I follow the diet I don't need anything. And my brother? He eats a low starch diet but cannot resist a small potato and a small piece of cake. But when his iritis or pain becomes troublesome he follows the diet more strictly.
_________________________
'Then you should say what you mean,' the March Hare went on. 'I do,' Alice hastily replied; 'at least - at least I mean what I say - that's the same thing , you know.' 'Not the same thing a bit!' said the Hatter.

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#205876 - 10/04/05 03:28 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
PaulaZU Offline
Master_Sergeant_AS_Kicker

Registered: 08/09/04
Posts: 636
Loc: Indiana, U.S.A.
I've debated about whether to post or not, because I'm not quite where I really want to be, yet. But, I can unequivocally say that the diet does make a difference. Until yesterday, I have not been on medication (except for an occassional naproxen) for the past year, and if I had not been attempting the diet, I know that I would have been a mess -- with difficulty walking, bouts of iritis, etc.

I think my AS was triggered by a bout of salmonella food poisoning between my pregnancies -- so about 15 years ago. I say that because, in retrospect, I realize that I was beginning to have symptoms in my SI/hip area when I was pregnant with my daughter who will be 13 this month. My symptoms were intermittent for a long time --until about two years ago when I had my first of several bouts of iritis in a 6 month period, was having constant arrhythmia (which seems to go hand in hand with inflammation for me), was having excruciating pain in my SI/hip area, and was beginning to have more pain in my lumbar area as well. Since that bad year, I realize that the disease is no longer intermittent, and it effects all areas of my spine (although not usually all at once), and various peripheral joints (sometimes my toes, sometimes my heel and ankle, etc.) I know that because I have problems in those places whenever I get sloppy with the diet.

Soooooo, finally, after years of going to the doctor for horrible hip pain that occurred now and then, and beging treated as if it was a one time situation; and after wondering ALOUD several times to my doctor if I might have something related to my brother's reactive arthritis (a related spondylarthropathy), I was diagnosed with AS in March 2004. Then all the puzzle pieces fit together -- my two maternal uncles (and even a great uncle that I don't remember) with the stereotypical AS posture.

I found KickAS in July or Aug. 2004, and started the diet in Sept. So it's been a little over a year. After several months on the diet, I began to feel terrific -- except for being on a long course of topical treatment for the chronic iritis, I wasn't on any medication, and wasn't having any arthritic symptoms at all. I felt so great, that I began to cheat on the diet. And at first, nothing happened. But eventually, by early summer, I was in a full-fledged flare. I've been working on the diet since, and haven't quite gotten back to that wonderful, completely pain free state. It feels as if I have a low level of inflammation going on a lot of the time.

I've finally decided to combine the diet with sulfasalazine which has an antibiotic effect. I'm hoping that each will complement the other, and that I'll be able to stay on a low dose of the medication, and perhaps go off of it at some point. I really dislike the idea of being on medications for the rest of my life (I'm 44) -- all of them have side effects. I also feel so angry and frustrated with my rheumatologist. It was no problem to walk into her office yesterday and ask for medication. She gave it to me without blinking an eye. But to ask for a wholistic approach -- one that is healing -- was really not supported by her.

So, even though I am going to try a medication, I still plan to be proactive about the disease. I realize that the medication ALONE will not take care of my symptoms (look on the main forum and you will hear lots of people discussing extreme pain or problems that they are having while taking meds at the same time), and I'm hoping that its antibiotic effect will help control or get rid of the remnants of kleb that aren't being annihilated by diet alone.

The diet makes a difference. I'd be in a wheelchair or be using a cane right now if it didn't.

Paula
_________________________
Meanwhile I live and move and I am glad, enjoy this life and all its interweaving. Each given day, as I take up the thread, let love suggest my mode,my mood of living. (Fred Kaan, 1975)

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#205877 - 10/25/05 12:08 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
PaulS Offline
Active_Member

Registered: 03/24/02
Posts: 74
Loc: Seattle, Washington. USA
10-25-2005

I am 46 years old. I’ve had AS since 1993. My pain and stiffness increased over the years from a mild annoyance to a disturbing level of daily pain. I was working up to being on pain suppressants constantly. By 2001 there was a growing list of things I could not or simply did not want to do. I looked gaunt and sickly.

In October 2001 I started a low starch diet. I didn’t make significant progress reducing pain and inflammation until I took a course of anti-biotics to fight off pneumonia in February of 2002. By this time I was NSD and began to experience very little pain and inflammation.

I was able to stop taking NSAID’s by March of 2002. My diet became full NSD as of June 2002.

When I began my LSD I found I just didn’t have enough foods in my repertoire to replace the ones I was giving up. It took a few weeks of searching and experimenting to compile my new stable of meals and snacks. I found it more realistic for me to take it slowly in the beginning, rather than rush in only to spend my days hungry or bored. (I’m 5’ 9” and 138lbs)

I also found it helpful to focus my attention on the foods I could eat rather than the ones I had to give up. I kept lists of eatables and added to it as I thought of new things. I bought recklessly. Frozen fruit, fresh fruit, dried fruit, nuts. Chocolate became an emotional survival staple; still is.

In my years of not eating starch I’ve continued to experience about a 90% reduction of pain and inflammation compared my pre-diet years. I still have some stiffness and lack of mobility in the neck. I partially blame this on my inability to find the time to really work on exercises to get my neck muscles back into a healthy state.

My energy is back, I look healthy, and I’ve returned to backpacking in the mountains. I can lift my kayak with ease and turn my head to back up the car instead of just relying on the mirrors. It doesn’t hurt to wrestle with my daughter.

I have found the diet relatively easy to stay on, still enjoying mostly meat-and-veggie meals. I also rely heavily on fruit and never venture far from home without some dried-fruit and nut mix to snack on throughout the day. I’ve always been the grazing type, never had any fat reserves to rely on.

My initial drop in weight on the diet has stabilized, and now I stay at my normal weight without any extra effort.

Fats, I firmly believe, are essential for my energy and well-being. I indulge in fresh sausages, and include fish oil as well as coconut oil in my diet. Nuts are also a source of excellent fats for me. Since beginning the diet my cholesterol has dropped 15 points.

Through years of searching I’ve managed to find plenty of recipes that provide a wide variety of delicious no starch meals. The American magazine: “Cooking Light” is usually packed with no starch, quick recipes.

This site and the work of Prof. Ebringer have given me back a full life that I cherish. I wish you all equal success.

Victory or Fuse!

Paul

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#205878 - 11/07/05 01:38 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
sundar Offline
New_Member

Registered: 10/03/05
Posts: 12
Loc: Seattle, WA - USA
Hi all,
This is Sundar....i have been on NSD for 2.5 months now..only it took me 1.5 months to get the DIET RIGHT ... this forum is a life saver and so are u guys...i have come to believe "HOPE NEVER DIES"..."IT LIES WITHIN EACH OF US"...."WE HAVE TO FINDIT" never let it die...my NSD was working well..i lost the pain in my hip but i still had acute pain in my left toe till last week..was not able to walk..had to take a NSAID ever day...then for the last 1 week (after i finished a apple fast) i have not taken a NSAID and have absolutely ZERO pain any where ...NOT EVEN MY TOE iam able to walk ..wear shoes and probably even JOG ...there is just minor stiffness in the mornings..that too is reducing slowly
PAULA ..asked me to write a SUCCESS STORY..i told her..i will when i feel better...
i am letting you all know..i am just 24 and and a few weeks before i felt 55..now i feel 20:)...believe me this diet thing is great...dont loose hope just make sure that u are doing the right diet...ask, check(iodine) before u eat till u get this thing right..be healthy...be AS FREE ...better BE "AS KICKIN"


Wid Love
Sundar

By the way i am happy..i got a promotion.. a payhike so i am getting a NEW LEXUS..to celebrate everything...including the AS KICKIN........

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#205879 - 11/07/05 09:37 AM SUCCESS [Re: Dotyisle]
la_monty Offline
Steel_AS_Kicker

Registered: 07/08/02
Posts: 1198
Loc: Perth, Western Australia
Early symptoms of occasional lower back pain, but after serious bouts of reactive arthritis RA, i developed full-blown AS. RA symptoms were regular periodic inflammation of either knee - major event, totally painful, huge swelling, destroyed employment, relationships and left me with restricted range of movement in right knee.
Previously i'd had four major gastric and two urethral infections.
Had some excellent medicos for early diagnosis and correlation for my first iritis event. What to expect later was always advised.
However, when i asked the "top" Rheumy for a medication to treat RA only at the time of flare i was told no way, must have a pill every day or none at all. I chose none and toughed out each event with occasional pain-killers and rest - used up all sick leave and took many days off without pay - every bloody fouteen days...
Prednisolone did stop the knee inflam once i got a better Rheumy, but i suffered knee damage from the many severe inflammations.
I took no meds or very light meds for years and gradually increased dose, especially if pain woke me at nite. Took NSAIDs, naproxen or ibuprofen, so i could exercise - prednisolone only if a knee flared.
Played with the London Diet when i heard about it (1995 or so) but loved cakes and pizza and noodles so it had little effect.
Eventually i found myself not sleeping well and needing to increase my naproxen dose - i was ready for a change as i could feel kyphosis creeping up, i was always stiff and could not escape pain to freely enjoy sex, running, sport etc. and was feeling ten year's older than my age. Sneezing and coughing were horrendous pain events in my chest.
Unlimited internet time let me read every KAS diet post over a period of three months (on light duties) so i started NSD, cold turkey on meds and regular exercises. My first exercise class on a mat had me in agony and frustration trying to roll over in total body pain, but i knew i needed the bodywork. Four days of NSD saw a reduction in pain, then a gradual build up again.
I decided to take one NSAID pill, the pain went for four days, then slowly rebuilt. This continued for 6-8 weeks - the pain dwindled to an inconvenience mainly around my neck when i ceased meds and apple fasted a few times.
Success!
I researched food, tropical fruit, digestion and inflammation, physilogy, genetic markers, metabolism and eskimos for months, years. Still going.
My remnant pain was annoying so i eventually found dairy to be the main reason and it seems to show up as neck inflammation. Even yoghurt affects me and i have discovered i do not tolerate dairy protein - casein.
I lived for months on simple foods - chicken and cabbage, fish and coconut milk, lots of ginger lots of greens. It worked, i eat fats of almost any type and spurn any starch or dairy.
Another success.

The absolute best thing i did was to take control, be proactive and own my disease. No-one else was in the position to sort it out so i did. I discovered many things about the human body, many more things about my own and regained ten years of apparent degeneration.
The main thing i learnt and emphasise is that AS is a disease of the digestive tract. We have GIT damage. Bacteria, enzymes, sensitivities, nutrients, physiology and the humble glucose ring control our quality of life - learn a little about it, get on board.
Thanks for all those old posts - John, Arjan, Gerard and others, even JCW .
Thanks everyone for continuing the input.
For those who have only minor success, i'd suggest an austere and simple diet for a few weeks to minimize errant starch. Any success even a small one brings a major boost to dietary motivation.
_________________________
Ted


One cannot believe all one reads on the Internet...
Abraham Lincoln

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#205880 - 11/08/05 01:35 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
phil28 Offline
Apprentice_AS_Kicker

Registered: 11/08/05
Posts: 95
Loc: London UK
I have had various gut issues with Candida, blastocystis and klebsiella. I have no idea whats there right now but my symptoms of fatigue, back pain and brain fog etc have disappeared completely. This took 4 weeks for me to have improvement, then 8 weeks to have complete relief after starting the diet. Things I seem to still have an issue with in addition to starch are fruits and vitamin b (which I think I have isolated to inositol) they cause me to suffer from fatigue (no pain though). My weight has stabilised and the only real remaining thing I have which I am unsure about is a slightly coated tongue, but if I also avoid carrots that starts to disappear (Thats the only root veg I eat). If anyone has any info on that please let me know. I hope at some point I will tolerate fruit but for the moment it seems to make me slightly fatigued, even low sugar berries. Again any ideas or information would be appreciated.

Supplements are fish oil and vitamin e. With 30hr yogurt and acidophilus probiotics. All once in the morning and again in the evening.

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#205881 - 11/09/05 07:38 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
wishing_well Offline
Magical_AS_Kicker

Registered: 05/16/02
Posts: 783
Loc: Netherlands Rijswijk Den Haag
Ok, here comes my story:
It was some 22 years ago that a rheumy said to me that I had Bechterew’s disease or even more frightening “Morbus Bechterew” as he called it, known in English as Ankylosing Spondylitis. I was in a shock, I considered myself an athlete, an avid rower training up to six times a week and just wanting to get a prescription for fysiotherapy for my lower back pain and certainly not wanting to hear that I was chronically ill. Instead of fysiotherapy I had to stop rowing and got a prescription for Surgam an Ibuprofen like NSAID which did help in the beginning. After a year however I took the maximum dose and soon even that didn’t help anymore. The next NSAID was Fenylbutazon or Butazolidine. By taking two or three times 200mg I was able to keep the disease profile pretty low and I was able to have a pretty normal life only at a bit lower pace. In order not to stop my training too abruptly I had started running and a physiotherapist helped to regularly loosen my back an ribcage. Though this all helped me I couldn’t help but notice that in a very gradual manner things were getting worse. About four years ago I realised that something had to change or better I should take thing into my own hands. The death of my father also around that time made me realise that doctors not always have time and means to do the best for one individual patient in a certain situation. Everyone has his own responsibilities too, especially when educated enough to sort things out. So I started searching first in medical databases and later further on the internet and discovered kick as (thanks to the also Dutch Arjan by the way). The more I read the more excited I became: there really was research that was not practiced in the medical world but that do was easy to follow and about which a lot of people were very enthusiastic. So I read about the whole site (not true) ordered the Carol Sinclair book and then started well prepared with the diet. I cannot say anything else then that the first two weeks were the best I ever had spoken AS-wise. I remember sitting in my bed one morning and using my whole ribcage for breathing for the first time in years. My physiotherapist was pretty flabbergasted and said “whatever you’re doing at the moment please go on with it”. My chest expansion which had gone down through the years to 3 cm doubled to 7 cm and my position became so much more upright that I had to adjust the mirror in my car several times in one week. If I had gone on turning back the clock I would now be symptom free but of course there was an endpoint: those things that really got fused stayed fused and especially the neck area was and stays troublesome for me. So after those first months progression stopped and since that time I have my good and my bad times but the baseline stays better then my starting point and my quality of life is pretty good, good enough for an active life and even to run and train for a half marathon once a year. I have not succeeded in stopping my medicines. I did some attempts but maybe the damage from 22 years of AS is just too big so I still use fenylbutazon be it in a reduced dose compared to earlier in my disease.

Like most of us here I believe that the origin of our disease lies in the gut, it’s condition and it’s bacterial flora. Above that I believe that many of the short time effects can also be explained as the result of changes in metabolism caused by eating starches and sugar which fuel our immune system causing pain within hours of eating the starches. Therefore it is useful to train our metabolism to be more economic and to use fats instead of overloading our system with easy energy foods. The apple fast is very useful for that and it is a good clean up of course. I hope in the future to learn and experiment a little further and to be able tone down my disease enough to be able to stop NSAID’s altogether. Thanks everyone for all the input here, the experienced and the new people here altogether and especially John, Bilko, Tim, Ted, Arjan, PattyG, JanandthePmirabilisthing, Codias, Zark, Pello, Evelyn and even more especially the one that expects his name here but doesn’t see it.
Gerard

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#205882 - 11/19/05 01:01 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
charlieportugal Offline
New_Member

Registered: 11/17/05
Posts: 6
I used to be a regular poster on this board a few years ago and to my shame, I have stopped visiting, but for the best of reasons - I no longer suffer from AS symptoms!

I am now 31 years old: I started having lower back pain in my mid teens, which I attributed to playing rugby. By the age of 25 I was walking with a stick and had regular severe flares in joints all over my body. I also had horrific night sweats, and constant lower back pain.

I started the diet out of desperation and within a month the constant back pain decreased and the night sweats stopped. At first I cheated a bit on the diet, but as I saw some real improvement I becane more strict. I began to walk normally again and the flares became minor and very occasional. After a few years on the diet (essentially I excluded all the major starch groups, but didn't worry about foods with low quantities of starch), I realised that I was flaring slightly after drinking beer and since I gave up drinking beer in 2004 I have not had a flare or any other symptom of AS. [It is worth noting that I can drink wine and other forms of alcohol and that other NSDers can tolerate beer with no problem.]

In 2006 I will be riding a stage of the Tour de France (they allow non-pros to ride a stage each year), which would have been an absurd idea just a few years ago. The future for me, will almost certainly be that I will never eat starchy foods for the rest of my life - the risk of returning to my previous state is too frightening now that I am completely symptom free.

My advice to anyone considering the diet or trialling it, is to stick at it, even if you do not have such immediate results as I had, because many people have only had results after more persistence.

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#205883 - 11/19/05 09:03 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
MNAnn Offline
Warrior_AS_Kicker

Registered: 03/11/04
Posts: 490
Loc: SC
Lower back aches nagged me from my late teens on and off. Iritis hit in my mid-20s and came back 3 times in the next ten years. Finally, a doctor ordered the HLA-B27 test in late 2003 and I found this place shortly after by searching "iritis and HLA-B27." Thank goodness! At my first visit to a rheumatologist in early 2004, I was diagnosed with "Spondylarthropy probably Ankylosing spondylitis." That day, I joined and posted here.

Being trained as a pharmacist, I know all the side effects of medications and didn't like the future of being constantly on drugs with serious adverse effects. So I looked into alternatives. The diet sounded reasonable, but I read some non-AS books and tried vegetarian and gluten-free diets first. GF helped (mostly with migraines), but not nearly enough. So 8/04 I began the NSD with an apple fast. It hasn't been easy, but BOY is it worth it! When I stay away from starch, I have essentially no lower back/SI pain. When I cheat too much it comes roaring back worse than before I started the diet.

If I have to stay away from starch for the rest of my life, I think it is worth it. I am on no medication at this time and use supplements like probiotics, l-glutamine, MSM, vitamins and minerals. I visit a chiropractor weekly who adjusts using an activator and not twisting.

It is not an exaggeration to say that this website and this diet have changed my life for the better. I owe a debt of gratitude to those who came before me and made the information available and helped me "get it." To those considering trying I'd suggest, just do it, you won't regret it.
_________________________
Ann
mom to three boys 10, 12, 14
Diagnosed with spondylitis in 2004
pharmacist who now seeks natural therapies including NSD & essential oils


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#205884 - 12/09/05 08:24 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
EricW Offline
Third_Degree_AS_Kicker

Registered: 01/22/04
Posts: 296
Loc: Asan City, South Korea
80 % success. Almost there.

In high school, cycling was my passion. However, I would often get sick before every ride, no matter the importance. When I was in my early 20s I had to quit cycling because of my stomach and my left knee, which started to hurt. The doctor said that I had worn it out, I couldn't believe it. I then started working out at the gym, but everytime I went my stomach would get upset, somtimes in the middle of a workout.
When I was 24 I moved to Korea and fell in love with the spicy food. A few years later my stomach decided that it had had enough and was rejecting almost everything I ate. I lost over 20 pounds to the toilet in just over a month. I couldn't go out without having to run to the toilet. It was affecting my work and every aspect of my life. I went to about 10 doctors and they all said it was stress. The most stress I had was from the doctors. I had a camera down the throat, had terrible chinese medicine, and even electrical therepy, but nothing worked. I decided to stop eating spicy food and focused on bland food; tuna sandwiches every day. I ate a ton of bread and rice. My stomach only got worse. Eventually I decided not to eat very much and my stomach started to get better, but I still had frequent bouts of IBS.
When I was 30, back pain started to kick in. I could only sleep for a few hours then I would wake up in severe pain. It took me forever to put on my socks. Eventually this would subside and then come back again. Other joints would also hurt. Carrying grocery bags was too difficult, let alone working out. I went to many doctors, but got no answers. Then one day I had a cramp in my butt. I told a doctor about this and she ran some tests. Low and behold, I had AS and RA. I was actually relieved; I knew what was wrong with me. She put me on Sulf and Celebrex and told me to exercise. I stared swimming and took the pills religously. The doctor then told me that I should find some way to get off the medicine, as they are only a temporary soloution. They were starting not to work anyway, and swimming was only giving me back pain.
That was when I discovered this site. I decided to go LSD and I found that my pain and stomach problems were greatly reduced. About two months in, I did the apple diet. After that I felt amazing, but still had some pain. At this time I stopped taking my meds and discovered I didn't need them. At times my stomach would flare up, so I decided to go NSD, and dairy free. To help my stomach heal, I quit eating disaccharides and drinking. I still have an occassional beer, cofffee, ice cream, piece of cheese, or piece of dark chocolate, and I do fry up bacon and eggs almost every morning. Other than that, I adhere to the diet strictly.
I am also supplementing. I take clacium, multi-minerals, multi-vitamins, L-glutamine and probiotics (all liquids or gel caps). However, I am not consistant. I may go days without one or another. I am also on steroids. I was going through the day with no energy and thought I would have to come off the diet. The doctor said that it was because of my out-of-wack prostate, not the AS, but that the steroids would help with the energy and the AS in the long run. The steroids and supplements are all starch free. She also said there is someting wrong with my liver, but it is not serious at this point. The reason I am not religious with the supplements is because I don't want to tax my liver or kidneys. I also have allergies to a million different things, which the doctor said is related to the AS. I am contemplating immuno therepy, but I am worried the monthly shots for 3 three years will trigger my AS.
Currently, because of the diet, I have very little pain. Once in a while my back will get tired or my foot will ache. My most common enemy is itchy, sore eyes and other effects from allergies. I almost never have a bad stomach now, although it is not perfect. Before the diet I would get headaches 2 or three times a week. Now I get them maybe 5 times a year, and it is usally because of a cold or I cheated on the diet. I am going to the gym 3 time a week. I started 2 months ago and was doing very little weight. Now, however, I am starting to lift heavy weights. The best thing is that I am feeling great. After I work out I feel wonderful. I am not sore at all. I am still not doing stomach exercises for fear up waking a sleeping giant, but I am planning to add them to my regiment soon.
I can't say that I am cured, but I can say that I am a million times better than I was. I am definetly heading in the direction of a cure rather than the toilet or wheelchair. While the diet is hard and sometimes depressing, the alternatives are much worse.
To those who discovered the diet and all those who promote it, I thank you. You really saved my life.
_________________________
A Rolling Stone Gathers No Moss, Hopefully!

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#205885 - 01/12/06 04:15 PM Re: No/Low Starch Diet Success Stories [Re: EricW]
alicia Offline
Apprentice_AS_Kicker

Registered: 09/29/04
Posts: 79
I’m in my twenty-first year and I was diagnosed with A.S in March 2004. I started the no starch diet about six months later.

I remember I first started experiencing pain in my hips and legs when I was about 12 years old. It wasn’t too bad, but it was always there, and whenever I told anyone they just said it was growing pains. Even the doctor. So I left it at that and hoped it would go away soon. But as I got older, it got worse. At high-school, my hips and legs got worse. I’d dread having to get up when the bell rang, because it was so difficult to change position, stand up, etc. with an un-pained expression on my face, or without crying out. But still, “it’s just growing pains”. My first real crippling time was when I was about 15. My neck suddenly became so incredibly sore that I literally couldn’t move it. If I wanted to lie down, I needed someone to hold my head and lower it onto the pillow, because I couldn’t use any muscles at all because it was so painful. I truly thought it was just going to snap. That would last about 3-4 days, and then slowly go away, until a few weeks later it would all start again. I went to the doctor again, he just gave me painkillers, which didn’t really work. But I started feeling like I was crazy. Maybe everybody felt this pain, and it was just me that couldn’t handle it…? Maybe it was all in my head, if the doctor couldn’t even realise how extreme the pain was. Then in late 2003, the pain spread and increased much more. It was all through my legs, hips, knees. I coped with it as best I could, and tried to keep exercising, because I like to jog and walk a lot, etc. But in the end, I just couldn’t. I couldn’t even walk. Walking to the toilet was the most I could handle at a time, and it would take me ages to get there. I started getting really depressed. Sitting, doing nothing is something I abhor. I went to the doctor at the beginning of 2004, and finally he realised there was something truly wrong. He guessed it was A.S, and did blood tests and a few days later I was in the hospital with a specialist. And I was told I had A.S, and it was incurable…maybe I’d end up in a wheelchair, it just depended on how extreme my case was. They gave me exercises to do to keep my bones straight, etc. and put me on medication, which I’d have to be on the rest of my life. And I did my exercises religiously, hated being on medication, and thought “there must be another way!”

About six months later a friend told me about an interview they had heard on the radio with a lady called Carol Sinclair, etc. and I went out and bought the book. That day I started the no starch diet and stopped my medication, even though the pain was still there, but I wanted to be able to assess my pain levels. Well it took a while. At first I didn’t cut out dairy, and I had a lot of trouble with hidden starches, but after about 3-4 months, with the help of this wonderful forum, three-day apple fasts, cutting out ALL starch and dairy, I managed to reach a level of very little pain, or none at all. I became very underweight, I lived very unhealthily for a time I guess, but for a while I just didn’t know what to eat. I just ate salmon and things that would heal my gut. My main aim now was just to heal up my gut. I ate hardly any vegetables or fruit, cos tested, they’d come out starchy. But at least it kept my pain levels down. After a while I started adding more foods; all vegetables (except potatoes and kumara, etc.), fruit (except bananas), and then later, dairy. I must have healed up my gut, because these foods, even if I tested for starch and they were positive, didn’t affect me. Recently I slowly introduced rice. I could tolerate little amounts at first, but now I can eat as much as I want. Things like rice flour and rice flakes I can eat in small amounts, but not often. I can also eat chocolate, which I don’t eat much, but is so lovely when I do. Now I live completely pain-free, unless I eat something wrong, where I do get pain, but so little I hardly notice now, especially compared to what it was.

It took a while of getting used to, and perfecting, but it sure is the best thing I’ve ever done! To think I could still be taking those terrible pills, and slowly crippling up without knowing, and not being able to tell how the A.S was progressing inside me, underneath the veil of the medication, and worried that maybe I’d be in a wheelchair when I was older.

But nothing of that now. The best thing about the diet is that we can FEEL how we are getting better! No pain means no stiffening, because it means there really is no inflammation inside us; it’s not just being masked by medication. And if there is any pain, just keep moving and monitor what you’re eating a little closer until it goes away again. Don’t lose hope, because no matter how long it takes, it does help so incredibly in the end.
_________________________
...i've got opium in my chimney, no other life to choose, nightmare made of hashdreams, got the devil in my shoes. tell me, tell me, what have i done wrong, ain't nothing go right with me, must be i've been smoking too long...

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#205886 - 01/21/06 01:58 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
chpritz Offline
Journeyman_AS_Kicker

Registered: 01/08/06
Posts: 111
Loc: Vienna, Austria
Hi, my name is Christina and this is my NSD success story.

I am now 34 years old and live in London. I was born and raised in Austria until I decided to move to England when I was 24.

My AS started when I was 17-18. After 1 year of pain from my lower back over my buttocks into my legs I decided to see a doctor. No result. Then flare ups started. I would get a lot of pain in my lower back, sometimes I could not walk, I could not sleep, or would wake up in the middle of the night because of the pain. I had all the usual symptoms. Unbelievably I went through this time of most of my major flare-ups without any painkillers. I just had no idea pain killers existed. I tried to see yet another doctor during a particular bad episode. I was diagnosed with a kidney infection. Which resulted in me spending two weeks in bed (which is probably responsible for my quite immobile very lower back), a lot of antibiotics and an Ultra scan of my kidneys. Which showed that my kidneys were in perfect health, but that something was wrong with my sacroiliac joints. At that point I knew I was not imagining things and half a year later finally found a specialist (thanks god for the Austrian health system!) who finally diagnosed my AS. Again a very typical story. I was given a prescription for Voltarol, send to an exercise class and told that I would probably be disabled with a fused spine by 40 and no, there was nothing that could be done. By that time I was 24 and somewhat depressed.

Luckily by then I did not have too many major flare-ups and only took medication and painkillers occasionally, however, there was always pain. When I was 30 I suddenly had a really bad flare up. This time (and for the first time) my neck area was affected. I went through two weeks of absolutely excruciating pain, bad side effects with meds, meds not working etc. Hell. That was the first time I started checking out the Internet regarding AS thinking there must be something else. By that time I was on 24h slow release Voltarol and I did not like the idea that my life was regulated by medication. I was very lucky and found the KickAS site and info regarding the no starch diet very quickly. I decided to give it a try straight away, as I had nothing to lose. Until then my diet was really starch heavy (being a student I had not much money and pasta, potatoes and similar were cheap and filling).

I stopped the medication the day I started with the diet to see if it would work. After a couple of days the pain levels dropped considerably. As most people I was very strict at the beginning. After a while I would eat starchy food when I felt I couldn’t resist. But I would always get pain. If I only had a little starch (particularly flour) I would feel it in the neck, prolonged binging would affect my lower back and hips. Temptation and a very odd feeling of deprivation are still very difficult for me to deal with. And now I have a new battle at my hands: Iritis. This started in October 2005 and made me come back to the KickASforum. And now I have realised how much more there is to learn and that I could feel even better!

Overall I can say that my diet really keeps my AS in check. I don’t feel it has progressed much since I’ve started with the diet. I see my rheumatologist (who does not believe in the diet but tells to me to continue if it makes me happy…) once a year. Last time I saw her assistant and she was amazed how mobile I still was. I am pretty sure this is down to the diet.

Yes, it is hard. No doubt about that and I am fighting against the little devil in my ear every day (one little biscuit is ok…) but I know I must be very careful, especially now that I am starting to get Iritis too.

I would say to everyone with AS, at least give it a try! Carol Sinclair’s book is great and the AS diet primer or also called the London AS diet food list really helps to get started.

Hope I can inspire you to get started!

My goal is now to be even better to myself, find fantastic new recipes and learn more about supplements. And keeping in contact with KickAS!

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#205887 - 01/22/06 11:47 PM Re: No/Low Starch Diet Success Stories [Re: chpritz]
sink_painter Offline
New_Member

Registered: 11/02/05
Posts: 4
Hi Christina and everyone else out there! This is my first post, so I hope I do it correctly....

In september of 2005 my 16 yr old son was finally diagnosed with AS. For about 18 months of chasing various aches and pains and even shoulder surgery. During a follow up to the shoulder surgery we were expressing our concerns about Drew's "pulled groin" he had obtained during a wrestling tournament 6 months earlier. They checked him 3 times for a hurnia thinking that was the problem. After I instisted our family doctor order an mri of the pelvic and groin area, the surgeon felt we needed to see an arthritis doctor to "rule out" his suspicions of AS.
Short version - they tested him and yes indeed he had all indictions of AS. He was already taking Mobic, so they increased the dosage. In the meantime, I did what many people do, I got on the internet and spent hours and hours reading up on AS. Drew's symptoms were getting worse with rib pain, ankle swelling, foot pain, jaw pain and horrible hip and lower back pain. He was walking like a little old man. It was awful to watch. When we went back to the doctor he put him on Prednesone and Sulfazine in addition to the Mobic.

In the research we found the no starch diet information and decided it was worth a try! Drew made a decision to follow the no starch to the T. We tested everything! Within 3 days the swelling in his ankle was gone and he wasn't hurting as bad. In 5 days the pain was nearly gone. Shortly after than he was pain free and to this day about 2 months later he is completely pain free.

I would like to see him go off the medicine, but he is not sure if that is the best thing to do. Drew gets up at 4:30 every morning and heads off to the gym to lift weights. He has high school wrestling practice after school for a couple of hours. He is now doing very very well and hopes to make it to the state tournament in February. He wants to wait until after that time to cut back on the meds and test adding or re-introducing some foods. His 1 slip up was eating a brownie about 2 weeks ago. He had some discomfort for about 3 days.......

If anyone is thinking about trying the no starch diet, I feel it is the most wonderful thing we have found thus far. I can't tell you as a mother how greatful I am to see him bounce out of bed and participate in the sport of his dreams. Best of luck to anyone who tries this way of life.

I would love to hear from those who have cut back on meds and how it went.....

Cheryl

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#205888 - 01/23/06 02:56 PM Re: No/Low Starch Diet Success Stories [Re: sink_painter]
wind_rider Offline
Iron_AS_Kicker

Registered: 11/12/02
Posts: 1039
You did it just fine! Welcome to you and your son!
I've cut back dramatically on meds to about one over the counter pill a week, maybe 2, like a single ibuprofen or aleve (naprosen), when I am doing something physical on weekends that is going to challenge my right knee. This keeps it from getting wobbly as fast. For instance, last week we went skiing (at age 50, I am a very green run skiier at this point ) and I can ski mostly turning and edging on my left knee but sometimes the right needs to carry some of the load and it gives out much more quickly if it's not, unfortunately, medicated. I've tried tylenol and it does absolutely nothing so why bother. It's not a pain thing, both knees feel about the same, it's a function thing.
When I was in my twenties and first flaring up badly I took a lot of NSAIDS. I was on the prescription merry-go-round as I got older, and had to stop as my kidneys just absolutely cannot tolerate processing prescription strength NSAIDS. Go to the doctor and complain. What do they do? Just give me another NSAID. Bleep that. Crappy family history, vulnerability to infection, and some other neuro things going on with me make me a poor candidate for the newer biologicals.
I feel better off the meds than I did on them, they were making me feel very sick and were giving me balance issues, which I cannot tolerate. Because I have been physically active all of my life (read that "have done many fun but dumb **** things with horses") I cannot tell at this point how much of my basic creakiness is just old age, AS damage, and how much is injury and wear and tear. (except that right knee. that is definitely HORSE related ) All of my adult life I've woken up stiffer than a normal person and taken longer to loosen up, so I don't have a comparison. My husband is the same age as I and does not have it and he's feeling pretty creaky some days too, he's getting regular osteoarthritis in his shoulder, I'm pretty sure.

I don't know what to say. Ideally we all want to be off of all meds. Meds do damage the stomach, intestines, kidneys, liver. I know the side effects from the drugs are as bad as the disease sometimes, but I also know that feeling of immortality as younger person, and that feeling that taking something temporarily that might harm us is worth it to do something that we love and that keeps us mobile.

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#205889 - 03/23/06 08:14 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
oms Offline
Active_Member

Registered: 03/22/06
Posts: 53
Loc: Canada
My mornings were hell. It took me about 20-45 minutes of lying there stiff like a board just to prepare myself for a thrust upward into a pool of pain. I had trouble getting up stairs. Walking to the can only 30 feet away was a journey. I have been dealing with this pain for a few years in total denial."It's just a stiff back" I couldn't turn my neck. lane changes were not that fun. I got sandals because tying my shoes .....I got sandals. Droping stuff in the mornings became a joke because I would laugh and say "That's the way she goes, I'll get it later." I have a dog so I walked no matter how bad I felt. I found this site and almost laughed at the Idea that starch was contributing to the way I felt. I was in so much pain that I gave it a shot. I went 3 weeks, My mood swings were not that pretty. It was tough, I was hungy and grumpy. Wow what a combo. I ate some perogies, bread, and other things that night. I was hit with a huge flare up. After that I stopped eating Starch in a very strict manner. I use Iodine. When it turns black I won't touch it. orange is alright. I was in so much pain a while ago. I was really depressed. I had to leave my job. Now things are looking up. I feel way less pain. It's always there but I can get up when I want and walk when I want. Some days are still a little tough but not close to what I was going through before. I also do physio everyday and have dropped the anti-inflammitories. I can't say that this will work for all. Everyone's so different. I have to thank all the people here for the great info. The Starch cravings are gone and I lost 40 lbs which helped with my hips, spine, neck and ankles. By the way I love pizza, Bread, Potatoes, etc. If you love something sometimes you gotta set it free. There are some other good alternatives on this site though. WOOT!!!!WOOT!!!

Amendment 5/9/06

I have too add to my NSD story, It's been working for me but people should be very careful about this diet. I think We're all really different and It takes a while to taylor a diet that will work for you. I might suggest starting with the Low Starch Diet and see how you feel. Also consulting a nutritionist might help. Take it slow. There is tons of info here. Read as much as you can before starting a NSD. When I hear of people having trouble with blood sugar and passing out ,that's just Is not cool and very scary. Anyways, all the best to all of you and good luck.

-Oliver


Edited by Dotyisle (05/09/06 12:34 PM)

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#205890 - 04/29/06 04:50 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
gingann Offline
Journeyman_AS_Kicker

Registered: 03/06/06
Posts: 123
Loc: Charlotte, NC, US
(copied from general NSD forum in case I neglect to give my full NSD success story, which I intend to do when I have more time)

Hi all,

Just wanted to express my appreciation for the supportive, informative, and pro-active posts in the NSD forum. I am 8 weeks into the diet and it's working wonderfully.

I just spoke with my mom, who is highly skeptical and disbelieving of any alternative treatments...even after hearing me tell her that this diet is working for me. She said "so, are you still on that bonzo diet?" I know she was trying to be funny, but the underlying skepticism is still there. And I have to say that without the NSD forum, I might have believed the skeptics and may not have stuck with it long enough to see results.

Thanks everyone!!

Warm regards,
Ginger

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#205891 - 07/03/06 03:29 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
peter_randall Offline
Lurker

Registered: 06/22/06
Posts: 1
Loc: London, UK
Hi, I am 52 and have had AS since I was 27. Like so many others I was not diaqnosed until a bout of Iritis 11 years later and an optician informed me of my plight! I found this website only 2 weeks ago and find it an absolute fantastic source of inspiration. I came looking for help as I have been able to endure the years of back/hip pain but now its at my neck..well you know. I immediately tried the apples diet for 3 days and it and my flare up just dissapeared. I am now a week into the NSD and am starting to feel so much better. I didnt think I could exist without my bread, potatoes and especially rice when eating a lovely curry but I have and will not give in. Early days yet but thankyou so much to everyone who has posted their success stories. Hopefully one more to add to the list.
Happy days

Peter

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#205892 - 09/04/06 10:13 PM Re: Hi my name is Tim and I am a NSD success story [Re: Dotyisle]
JimR Offline
New_Member

Registered: 04/20/06
Posts: 3
Hello my name is Jim and I live in Michigan, USA. I was diagnosed with AS and was told there was nothing for me but anti-inflammatories, pain killers, and muscle relaxers. I asked three doctors if there was any exercises or diets I could do to help, they all said no. I discovered the AS site "surfing" the net and tried the no starch diet to the best of my ability. I am still learning what products do or don't have starch in them. It has been about 5 months now and I have discontinued 3 different medicines and take only muscle relaxers on an as needed basis. My As was pretty well advanced). There have been complaints on the site about people who read the site and never post so I thought I would post another success story. I was taking the $1,200 a shot latest stuff and it didn't help but starch free diet did.

I have also had some healthy weight loss. I attribute it to avoiding products with "high fructose corn syrup", "corn syrup" and "corn starch" in them. This is just about everything in America these days so I have gone very natural which has also turned out to be a good thing. I live on a farm and one doesn't have to spend much time in the country to know if you want to fatten an animal up feed it corn. Perhaps that is why so many people are obese these days. Cheers Jim R

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#205893 - 09/18/06 03:25 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
DragonSlayer Offline
AS Czar

Registered: 09/05/01
Posts: 5989
Loc: Reno or SFLU Philippines
[ed note: This is George McCaffery’s success story, excerpted from Carol Sinclair’s “The New IBS Low Starch Diet” at Geroge’s request to be added to the NSD Forum]

George McCaffery: From Despair to Success Story

George first contacted me in 1999, to tell me that the Low Starch Diet worked for AS. Without George, I would probably never have heard the name Ankylosing Spondylitis, or discovered that I also have the disease. George has been on the diet almost as long as I have. He calls it the ‘secret’ diet because, in his own words, ‘doctors keep it a secret.’ His story is remarkable, and an inspiration to us all:

Around the age of twenty-six I began to experience what I believed to be groin strains and thigh strains. My GP gave me pain killers/anti-inflammatory drugs and told me to rest. I eventually persuaded my GP to refer me to a specialist, as these apparent injuries persisted and worsened. At age 28 I was seen by an orthopedic specialist in Newcastle, who diagnosed a spinal instability needing a bone graft from my pelvis on to my spine.

I was admitted to the Freeman Hospital in Newcastle around 1978. I was prepared for theatre, ie shaved from toenails to ears—and starved. The morning of the operation the surgeon came to see me and asked how I was. He couldn’t believe it when I said I was feeling great. He lifted one leg at a time and dropped them—no problem. The stiffness had disappeared. He asked me to get out of bed and touch my toes—no problem! He then decided not to operate. Boy, am I pleased he called it off! Strange! I crawled into that bed and jumped out!


After this George went through a number of years sometimes feeling OK, sometimes feeling terrible. In 1982 he went to live in Singapore, and began experiencing worsening pain and stiffness. His doctor in Singapore prescribed anti-inflammatory tablets, which George describes as ‘great big pink things, as big as a doorstop.’ As well as the drugs, Geroge was trying anything and everything. During this period I tried physiotherapy, a sports physician in Guildford who injected a solution radially through the muscles on either side of my spine (this is more painful than having AS but doesn’t last as long), a blind mystic healer in Indonesia, acupuncture, massage…’ You name it, George tried it.

Around 1986 my GP in Singapore had some more X-rays taken and blood tests. He then told me I probably had something called ankylosing spondylitis, a progressive bone disease which had no cure, but which could burn itself out. I should continue to take the anti-inflammatories. But I was having major problems with my stomach. At times I couldn’t tell if the pain was from my stomach or back (sounds crazy doesn’t it?).

Still in search of a cure, George visited Guy’s Hospital in London. Someone had told me that a hospital in London was the place for AS, and Guy’s was the only one I had heard of. I met a really good rheumatologist there, who told me the recommended treatment for AS was NSAIDs (Non-Steroidal Anti-Inflammatory Drugs) and, for longer-term results, sulfasalazine. He also mentioned that there was a school of thought that said diet may come into it. Of course I thought nothing of this. I had a bone disease, and what could diet have to do with it?

Around 1988 someone told me they had read that a doctor at the Middlesex Hospital was doing research into AS. I phoned the Middlesex from Singapore. I was desperate at this time, in a lot of pain and contemplating having to give up work. I was told by a nurse in rheumatology, “Oh, that will be Doctor Ebringer.” Eventually I was able to speak to Dr. Ebringer and told him of my situation, and asked if there were any research programmes I could be part of. I persuaded him to see me and came across in February of 1988.

Doctor Ebringer examined me (I crawled on to the table). He looked at my X-rays and sent me for blood tests. In March of 1988 I went back and he told me “You have AS. You are HLA B27 positive and your ESR is ninety-eight.” I said ‘that’s just great, doc, I’ve already been told the first bit. I don’t know what the other numbers mean. Just don’t tell me you can’t do anything for me and to keep on taking the tablets!’

He said “Not exactly, but I will tell you—you can help yourself.” He then explained the Low-Starch Diet/Klebsiella theory and gave me the Middlesex sheet of what to eat and what not to eat.

I have to say at this point I was thinking, ‘Oh, no—a bloody quack!’ However, I said ‘Ok, you tell me my problem is starch. Not another bit of starch will pass my lips!’ (Probably a threat to expose his stupid theory). I went on a bacon and egg diet as this was the only thing I could think of that didn’t have starch in it.

Three days later I woke up, (I can remember exactly where I was, the Grand Hotel in, Brighton) feeling great! I phoned Ebringer, elated, and told him what was happening. He said “Good. Stick with it.”

GOOD! I couldn’t believe it was that simple! Why had no one told me before?

The rest is history. Once I found the problem, I could control it—look carefully at the contents of the things I ate. The psoriasis I had on my elbow and in my ears cleared up in a week or so. I kept on visiting Dr. Ebringer’s clinic in London whenever I passed through the country, and at the last count my ESR was eighteen [ed note: Even as low as 7].

I now have lots of friends with AS through a website at www.kickas.org, which as a NSD (no-starch diet) site with a lot of people with similar experiences to mine from going on a low-starch diet.


[ed note: George and a former member of kickas—Vance—found Carol Sinclair’s original book and contacted her, introducing Carol to Ebringer’s work and she subsequently tested positive for the B27 antigen. Her ‘IBS diet’ is much more strict than Ebringer’s.

George is directly responsible for making kickAS aware of the diet and Ebringer’s work in the first place, and he has personally sponsored lectures for our group, held in both San Antonio and Las Vegas, with presentations by Professor Ebringer and Carol Sinclair.

He credits, in great portion, his considerable business success to the LSD and NSD, and continues to do very well on the diet, travelling extensively for his business interests—and plays golf every chance he gets].

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#205894 - 09/18/06 08:16 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
gingann Offline
Journeyman_AS_Kicker

Registered: 03/06/06
Posts: 123
Loc: Charlotte, NC, US
My NSD success story:

I'll give you the entire story from beginning to end because I feel that it sheds light on the disease process.

I started feeling pain initially during December of 2004. I was taking Accutane (for acne) at the time. I awoke a few times due to severe back pain during my 5 months of Accutane treatment. I told my doctor about the pain, because I thought it might be a side effect of the medication, but she said not to worry about the pain.

Then, in July of 2005, I started feeling the severe back pain (in my middle to upper back) each and every night. It was waking me up after 3-6 hours of sleep.

I saw a few doctors and went through physical therapy. They all thought that I had pulled a muscle, and their treatments did nothing. In January 2006, I finally realized that I have AS....my dad has AS and my symptoms matched the symptoms listed online. I self-diagnosed AS in January 2006 before having a rheumotologist's confirmation of the AS diagnosis in May 2006.

In the meantime, at the end of February 2006, I found the NSD and started to try it out. I was a little skeptical at first, and I felt guilty/embarassed that I might have fallen prey to an internet scheme because my initial knowledge of the NSD came from Joel Godin's e-book, which I had purchased online. And I was scared because he instructed to eat salads and that was about it!! I wasn't sure how I could manage this for the long term.

Anyway, soon after starting the diet, I found this website and it offered much needed advice during the first few weeks of the NSD. I started by eliminating both starch and dairy. I saw 95-100% reduction in pain levels by week 6. (but, mind you, eating over at friends' houses or eating out at restaurants sometimes caused a relapse with significant pain)

Now, after 7 months on the diet, my current pain levels are reduced by 95-100% if I avoid starch and dairy and 80-85% if I avoid starch only. I'm so happy with these results. When I saw the rheumatologist, he did give me the AS diagnosis, but he did not feel the need to prescribe any medication. After being on the strong medicine Accutane, I was hesitant to be on heavy drugs again. PLUS, I really feel that being on a heavy medication (Accutane) contributed to my development of AS because it acted as a toxin. I believe this toxin (along with high levels of stress during the past couple of years) overwhelmed my immune system which then initiated my disease process.

I'm still trying to find better and better ways to live on this diet. There are peaks of extreme hope, such as, I've found that I can tolerate Indian/Nepalese food from a certain restaurant (I avoid the rice, of course). I never would have imagined that I could eat this food 4 months ago. However, I would be just a happy not eating the scrumptious Indian food for the rest of my life if avoiding it allowed me to live normally without pain and medication.

I recommend that anyone trying this diet buy Carol Sinclair's book (which can only be purchased in the US online), the Specific Carbohydrate Diet book by Elaine Gottschall, and the Alternative Medicine Definitive Guide to Arthritis by Zampieron.

I do have a significant piece of advice, now that I think of it. Elaine Gottschall mentions in her book that one must follow the diet prescribed in her book with fanaticism. And it's true. I have followed the NSD with fanaticism, which has yielded great results. I don't miss bread or pasta or any other starch because I feel as if a huge weight has been lifted from my shoulders, and I feel as if my current actions are making me healthier in the long run. I don't dread going to sleep anymore because of fear of the AS monster hitting me at 3am. And, another piece of advice, be very careful with the supplements that you buy. It would be a shame to mask the good results of the diet by taking a starchy supplement.

Please ask lots of questions, and feel free to send me a personal message if you have any questions. I don't check my inbox all of the time, but I do check it periodically.

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#205895 - 10/04/06 04:30 PM Re: No/Low Starch Diet Success Stories [Re: gingann]
Flasharry Offline
New_Member

Registered: 10/11/04
Posts: 12
Loc: London. UK.
A brief history: Aged 35, I was diagnosed with AS, after a couple of years of gradually worsening back and joint pain until, finally I couldn't get out of bed in the morning. I now know this was linked to the 'growing pains' (doctors diagnosis, not mine) I used to suffer from the age of about 11, and the various, sometimes incapacitating, unexplainable hip and shoulder joint pains I used to get on a more and more, regular basis.

After my initial diagnosis and medication, which seemed to be having little effect, I went into a bit of a panic/depression, searched the web, found this site and tried some of the diets to see if they helped.

I tried the 3-day apple diet, which appeared to have absolutely no effect at all, apart from putting me off apples for a few months. I tried an exclusion diet for two weeks, where I ate nothing but chicken and broccoli, again nothing.

I then went onto the No Starch Diet. After a couple of false starts, finally, after a good six weeks on the proper regime, I started to feel a slight easing of the pain and I was gradually able to reduce my intake of Vioxx from the maximum dose. Two weeks later I had a day with No Meds, then I used them on and off for the next couple of weeks until I was able to stop all together…Wonderfull!!

I remained pain free for about 10 months, in fact I was so pain free I convinced myself the doctors diagnosis was wrong and there was nothing wrong with me, so I gradually gave up the diet (I guess I was in denial).

After a few months I was up to the maximum dose of Celebrex (Vioxx had been banned), which was having little effect so, no problem, time to go back on the diet I thought…

Well getting back into the pain free zone proved a lot more difficult than last time (perhaps the apple and exclusion diets had helped after all) and I came very close to asking for anti TNF drugs.
In fact, if I hadn’t been pain free before, I would definitely have given up.
I think it took about 4 months to get any noticeable improvement this time, as I seemed to be much more sensitive to certain food groups,

On top of the No Starch rule, the almond cakes I enjoyed so much first time round went out the window, so for that matter did, sugar, honey (deserts in general), almonds in any quantity and dairy (except butter). I think the bacteria had learned to live off dairy and sugar instead of starch. I also got caught out by silly things like instant coffee and tomato ketchup.

Anyway, finally after eliminating all these things I managed to get back into the zone again and have been pain and drug free for the last 7 months. I won’t be giving up the diet again in a hurry.

True to the theory of an indirect allergy to the aforementioned food groups via the Kelebsa bacteria, I now find I can tolerate moderate amounts of these foods as long as I don’t make a regular habit of it, i.e. if there is no bacteria in your stomach to eat the starch/dairy/sugar, you won’t have a problem, so I can go out for a curry now and again and eat everything, but if I eat a tiny bit of what I shouldn’t, often, the colony soon builds up and the problems start again.
I would say my pain levels vary from nothing to minor back pain or odd joint pain, having to take 1 Celebrex once in the last 7 months, which can’t be bad.
I do have a legacy from the times when I had the disease properly though, and that is shoulder joints that are pretty wrecked and strangely, ribs that click when I breath, which is annoying but, so far no problems with my once very painful hips.

My advice for anyone starting out on the diet is, keep it simple, test everything with iodine, if it goes black don’t touch it and keep off the sugar and dairy as well. It’s hard, but surely not as hard as not being able to move in the morning and feeling the damage this thing does to your joints…..
Also, take a good multi vitamin, Calcium citrate, vitamin C and a highly purified fish oil (not the cheap supermarket ones).

Give it time. If some people’s symptoms improve after a few days, mine improved after initially after six weeks, second time round it was 4 months. It must take others even longer to find out exactly what they need to avoid. Just don't give up. Once you get used to the diet, it's not actually that difficult to stick to either (maybe I have an unfair advantage because I work from home). The only problem is now I am a fussy eater when I go out, something I've never been or ever wanted to be as I've always enjoyed trying /eating new and unusual things.

Tips, if I can offer any, would be:

Coconut cakes. In the beginning, I had terrible trouble giving up the bread type starches as I felt I needed some type of stodge inside me, almond cakes (reduced sugar or honey) fitted the bill perfectly and I ate loads of them, I would substitute these for coconut cakes now, as they don’t contain any starch, unlike almonds.

Iodine. Essential. Someone has very kindly printed a list of foods and their starch content on this site and it's an excellent base to work from but, on testing some of the low or no starch foodstuffs with Iodine they show large amounts of starch i.e. cooked carrots and cabbage, which I personally didn't eat in the beginning, but now have little or no problem with.

Ginger. Many people here swear by it (I'm sure it works well for them). I took loads of it when I was on my exclusion diet and during the first attempts at the NSD diet. It did nothing for me, it may even have had a detrimental effect as it's is very starchy indeed. I now don't take any.

Finally Carol Sinclair’s book I found very useful as it gave me the will power to keep going with the diet (well reasoned arguments and her example to follow), it also gave me a more structured way of looking at foods, making lists of eat / don't eat etc...

Exercise…..ha! The mark one standby for the doctor who doesn’t have any decent alternatives, tell him to try swimming when it’s not possible to raise your arm because the pain is so bad in your collar bone, or you can’t even walk to the changing room because of the pain in your hip…..Don’t get me wrong exorcise is good for everyone, but in that state it’s almost impossible. It didn’t improve my symptoms as far as I can tell, although it may have lifted my mood, unless I couldn’t exorcise in which case it would be worse.

Anyway, at the start of all this, when I was feeling trapped and depressed at home, I promised myself that, when I got better, I would grab every opportunity to be active and outside in the fresh air as much as possible, and to that end, I bought some second-hand kite surfing equipment and a paramotor which I would learn to fly once I was able to pick it up and run with it.

Well, I have to admit, the kite surfing has not really happened (UK weather being what it is and being so far from the sea), but I have been flying the Paramotor, all over the country, since February and love every minute of it.

For those who don’t know what a paramotor is have a look at my Flickr site
http://www.flickr.com/photos/bedsheetflyer/
and click on one of the 3 small sets of photos on the right hand side.

Oh, and we start a new family in April.

Best of luck to you all.
Stuart.

PS. To George and all the regulars here, thanks for the excellent website, it has changed my life.

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#205896 - 11/18/06 04:24 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
Jeff_1027 Offline
Apprentice_AS_Kicker

Registered: 11/11/06
Posts: 84
Loc: Littleton, CO
Sorry for writing a book I just learned some stuff and wanted to share it. Please feel free to let me know if you see any errors with what I wrote. Also I kind of wanted to do this for myself so I could explain it to my family and friends easier. I tried to break it down into sections to make it easier to read.

The Science behind AS:

Ankylosing Spondylitis or AS is caused by a bacteria caused Klebsiella pneumoniae which is closely related to cells in our body. More specifically they mimic a gene called HLA-B27. As the immune system attempts to destroy the klabsiella, it also destroys the B27 cells causing the inflammatory progress of AS. The two major areas AS cause’s problems are the joints and the gut.

The thing that I find kind of strange is people that are HLA-B27 negative (like me) are also seeing successful results of the Low/No Starch Diet and I'm not the only one. Trust me I'm not complaining though. I think the reason I'm HLA-B27 negative is because I have Ulcerative Colitis which is a type of IBD. Their are only 2 types of IBD, Crohns and Ulcerative Colitis and I guess for some reason Carol said people with Crohns and AS are more likely to be HLA-B27 negative. I'm thinking that maybe since I have the only other type of IBD that maybe that's why I'm HLA-B27 negative but who knows. I've also been told that some people find out they are negative just to find out with another test they are positive. If they let your blood sit too long before they test it they can get a false negative. Also the reason they tell you to get this checked is because people with this gene react better to this diet. Basically I don't really care as long as this diet works for me which it seems to be working already and I'm only on day 9 of the diet today.


How the Low Starch (No Starch) Diet was discovered:

Basically the Low Starch Diet was discovered by luck by Carol Sinclair and Professor Alan Ebringer (separately). The way Carol discovered it was she was diagnosed with IBS and started actually adding more starchy foods as recommended by her doctor which made things worse. Then she said in 1986 she was "at my wits' end" and she decided to try eliminating wheat from her diet after watching a TV documentary about food allergies with wheat. She saw results right away. After testing all different foods she found out it was actually starch that caused her problems and if she eliminated it she could keep her IBS under control. Later Carol found out she also has AS and tested positive for HLA-B27 (a marker in your blood that most AS patients have except most of them with Crohn's disease and AS which for some reason test negative for HLA-B27). Professor Alan Ebringer who is a Professor in Immunology and also specializes in the field of rheumatology figured out that a bacteria called Klebsiella pneumoniae was the cause of AS which in turn caused other problems like IBS, IBD, Iritis etc. The thing the professor couldn't figure out was how to treat patients infected with these bacteria. One day one of his AS patients asked him to devise a weight-loss diet. The professor recommended that he eat as much steak and as many tomatoes as he wanted, and drink a bottle of red wine daily. His patient did this and told the professor not only did he lose weight but his joint and back pains went away. After hearing this, the professor came to the conclusion that the bacteria must live on the undigested starch in the gut and eliminating starch from the diet must have starved them. Further research confirmed the bacteria did in fact live in the gut and grow on remnants of the starch in our diet. That professor is a smart guy. He put his patients on a low-starch diet and his patients reported amazing relief from symptoms.

How I became diagnosed with AS:

I started to have back problems about my junior year of High School. Then one day I woke up with hip pain in my left hip so bad I couldn't walk and my mom had to call me in sick to school. I think she thought I was faking it. She set up an appointment with our doctor and of course at that time the pain went away and my doctor told me it was just growing pains. This made it even worse as I think my mom now definitely thought I was faking it and I felt like a wimp even though I know the pain almost brought me to tears. Then it happened again and my mom took me immediately to the doctor who had me lie down and try to lift my legs one at a time. I lifted my right leg no problem then when I tried to lift my left leg (the leg I had the hip pain) I couldn't lift it at all. At this point the doctor referred me to an arthritis doctor. The arthritis doctor diagnosed me with AS. Then did my blood test and said I was HLA-B27 negative. He then put me on Sulphasalazine which didn't really seem to do much for me but make me tired all the time and cause Jaundice (yellow) around my eyes. When I met my wife in 2001 (her background is in health care) she was the one that noticed the Jaundice and said I should probably get off the Sulphasalazine. Then she said she knew a chiropractor I could go to. Not knowing about Chiropractic care I decided to try it out. After meeting with the Chiropractor he did x-rays and said I have scoliosis. I thought the arthritis doctor must have been wrong with the AS diagnosis and my problem must just be scoliosis since I wasn't HLA-B27 positive and from what I read like 1% of people with AS are HLA-B27 negative. I continued to get adjusted once every couple weeks which seemed to help but I still had flare ups where my hip started bothering me to the point I was limping. I was convinced this was because my spine was pinching nerves that caused muscle spasms in my leg. Then I developed IBD (Ulcerative Colitis) and thought great I am falling apart at the age of 26. The doctors put me on Asacol starting with 3 pills a day. This increased to 6 pills a day, then to 9 pills a day and I was still having uncontrollable bowel movements. I was so frustrated with these doctors just feeding me pills and NSAIDS which I found out I shouldn't be taking because NSAIDS cause problems with people that have IBD. A couple weeks ago my wife and my mom (also with scoliosis) said I should go to a spine doctor. I was so frustrated and felt I have to figure out what the heck is wrong with me. After all I am only 28 years old and I feel like an old man with back, neck and hip problems and uncontrolled bowel movements. After going to the spine doctor she asked me if I ever heard of Ankylosing Spondylitis. I couldn't believe I was hearing that again! I said yes they diagnosed me with that before but I was HLA-B27 negative and also found out I had scoliosis which I thought was the problem. The doctor said my scoliosis was very minor and I had all the symptoms of AS. I have problems breathing (basically I breath with my diaphragm and my chest doesn't expand), when I bend over to touch my toes my hips do not rotate, my cartilage in my upper left hip was completely gone and my bones were fused and where my ball socket connected to my hip there was very little cartilage and I had a cyst (hole) in my cartilage. My right hip was also very thin with cartilage. Also IBD is a symptom of AS which I didn't know. The doctor said there is nothing I can do except for physical therapy and keep as mobile as possible and in about 5 to 10 years I will probably have to have my hip replaced. That was probably the most helpless feeling I felt in my life. I decided to get on the internet that night and research everything I could about AS and if there was any breakthroughs or anything people were doing other then taking pain pills. Then I came across kickas.org and found the London diet. I started reading every post I could and decided to try the No Starch diet the next day. Thank god for the invention of the internet.

My experience so far with the No Starch diet:

Day 1 was pretty hard. Luckily my first day was on a Saturday and it was a holiday weekend so I could start this diet at home and not have to worry about lunch while at work. I decided to only eat stuff I knew didn't have any starch. Eggs and oven cooked fish with olive oil. I cut back my IBD prescription from 9 pills to 6 pills and I could tell results even my first day.

Day 2 I decided to cut back my IBD pills to 3 and add broccoli, red grapes, pears and apples. Then I started having bowel problems again. I thought it was maybe because I was cutting back on my IBD pills.

Day 3 I still had problems and thought I'd research some more on kickas.org. While reading more on kickas.org I found out pears and apples have starch. The starch in pears and apples is dependent upon time of the season and how ripe they are. Sometimes I guess they don't have starch at all. Iodine test will tell you. Take a small piece of the food and drop iodine on it and if it turns dark blue or black it has starch if it stays the red/orange color it doesn't have starch. I didn't have any iodine so I just decided to eliminate pears and apples for the fourth day. This helped tremendously.

Day 4 I was able to completely get off my IBD pills and was able to control my bowel movements. This alone is enough reason to stick with this diet even if I don't have any improvements with my joint pain. At this point my stomach was getting very sensitive and I was able to tell immediately if a food bothered me. Broccoli seemed to make me gassy and burp a lot and red grapes gave me a little upset stomach. I wasn't surprised to find out later that the skin on "red" grapes has some starch and bothers some people. I also found out coconut was safe but couldn't find unsweetened coconut in the grocery store so I decided to get a whole coconut and cut it open. This was definitely a task but worth it because coconut didn't seem to bother my stomach. I also got some pineapple and found out that bothered my stomach (pineapple has a little starch). I also got strawberries and blueberries which didn't bother my stomach at all. I tried hamburger and it seemed to bother my stomach for some reason. I got online and found out other people are also affected by hamburger. I thought maybe it was just the additives in the meat so I went to an organic store and got buffalo burgers which also bothered my stomach. I'm not giving up on this one; I also got turkey burgers (I'll let you know how they go).

Day 5 was really good. I found out about coconut flour and made some bread and brownies with coconut flour. The brownies made my stomach upset a little but the bread didn't seem that bad. The bread was actually cranberry walnut bread which I put too much flour in because the mix looked runny and it came out real rich and a lot like cake. I made it again with what the recipe called for and it came out soggy but still bothers my stomach a little if I eat too much. I also made it with clarified butter instead of coconut oil. I made my own clarified butter (which "Kiwi" on the forum recommended) by cooking it on low heat until it bubbled white foam which I removed and then ran it through a strainer (the same strainer I used to sift the coconut flour). I think it's bothering my stomach a little because the recipe calls for sugar. I just found another coconut flour bread recipe which doesn't call for sugar and I'm going to try that one today. I'll let you know how it turns out.

Day 6 I decided to add some dairy by trying some hard cheese (recommended by the forum). The cheddar cheese and gouda cheese upset my stomach a little but wasn't that bad. I also tried a couple almond slices which didn't seem that bad. Then I tried a pickle and an olive (pickle has vinegar and the olives have Guar Gum which has starch). The vinegar from the pickle bothered my stomach a lot and the olives bothered my stomach a little.

Day 7 I added cheddar cheese to my eggs and it bothered my stomach a little (and eggs never bothered my stomach so it had to be the cheese). I'm also wondering if it made a difference that the cheese was cooked as I've heard starch is pulled out of some food like vegetables when cooked. I'm still trying this one. I also added ham and oranges which didn't seem to give me a problem. I then decided to try a burrito bowl at my favorite Mexican restaurant which I have been craving. It tasted great but tore up my stomach. It had white rice (which strangely enough is the one starch that doesn't affect a lot of people with AS), steak, cheese, lettuce, mild salsa and sour cream. I'm going to try them separately to see how they affect me.

Day 8 I decided to take it easy and eat what I knew didn't bother me. My stomach immediately healed and I went back to normal. I then tried some turkey pepperoni which didn't seem to bother my stomach, and then I tried soy milk which tore up my stomach. I found out later Soy has starch in it (imagine that).

Day 9 (today) I decided to try some orange juice which bothered my stomach. I've read the white part from the orange has some starch and sometimes orange juice can cause problems with IBD. I guess that's true for me. I'm going to try some cranberry juice as most berries I seem to have no problem with although I haven't tried cranberries yet (that's next). Also like I said I'm making that new coconut flour bread recipe today so wish me luck. I think I might try the almond flour too for a couple recipes to see if it bothers me. I also just read that goat cheese doesn't bother people with IBD but I haven't tried this yet. Also buffalo milk (which I've never seen before is supposed to be good). I'm going to go to the organic store to see if I can find this. As you can see it seems like there are some definite safe foods but you also have to find what works for you on this diet.

My lists so far:


Bad foods:

Haven’t yet tried bread or pasta but I'm guessing bad since that's the basis of this whole diet
Walnuts
Vinegar
Pickles (vinegar)
Orange juice


Moderate foods (in moderation not that bad but still bother my stomach a little):

Almonds
Sugar
Coconut (mild upset stomach if I eat too much)
Apples
Pears
Olives
Pineapple
Red grapes (mild upset stomach)
Oranges (mild upset stomach)
Cheese (gouda and cheddar tested so far) - I think worse when cooked, still testing this
Pepper


Safe foods:

Fish
Chicken
Ham
Pork
Eggs
Blueberries
Strawberries
Green grapes
Iceberg lettuce
Mixed greens
Olive oil
Salt
Raisins

Don't know yet about turkey pepperoni or turkey bacon. I tried these but I also had orange juice with these which I pinpointed caused me problems.
_________________________
"Happiness is a journey, not a destination; happiness is to be found along the way not at the end of the road, for then the journey is over and it's too late. The time for happiness is today not tomorrow." ~ Quoted by Paul H Dunn

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#205897 - 01/08/07 02:59 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
Chimike Offline
Member

Registered: 12/30/06
Posts: 28
Loc: Illinois, USA
It was after a 1989 trip to Cancun and a severe case of Montezuma’s Revenge that I began having recurring bouts of power diarrhea followed by horrible cramps and crippling pain in my lower back and hips, plus occasional pain in my rib cage. I sought medical help from my GP who subjected me to numerous tests and x-rays, but could never find a specific cause for my symptoms. He referred me to a Gastroenterologist who chalked up my problems to Gastritis (although at one examination he did notice some inflammation in my rib cage and a short term prescription for an anti-inflammatory helped a bit).

I was finally diagnosed in 1994 after my Ophthalmologist tipped me off that my case of acute iritis could be associated with Ankylosing Spondylitis. I was dumbfounded when he described all my symptoms! Sure enough, a blood test revealed that I’m HLA-B27 positive and x-rays showed deterioration of my Sacroiliac joints. I had very mixed feelings at the time. I was at once relieved to finally have a diagnosis, after suffering unbelievable joint pain for about 5 years, and depressed to have an incurable condition. Then when my Rheumatologist prescribed Flurbiprofen (NSAID), which relieved my excruciating joint pain for long periods of time, I was thrilled and considered flurbiprofen to be a miracle drug! Additionally, my Gastroenterologist prescribed Metronidazole (Flagyl) as a maintenance drug and Prednisone for severe flares, which further reduced my GI symptoms. For the next 10 years I was content to keep popping pills every day, which kept me relatively pain free and experiencing only occasional flares.

Then a few years ago, the flares started coming more frequently and I became impatient with my doctors and frustrated that the drugs weren’t 100% effective in relieving my symptoms. I had always felt that what I ate had a lot to do with the onset of my flares but, whenever I suggested it, neither doctor would concede that my food choices could be causing them. It was by searching the Internet for AS and Diet that I came upon the KickAS website almost 2 years ago. This fantastic website and web based community offers the knowledge we all need (especially since it's mainly unavailable in the World at large). I read all the information in the "Diet Centre" and printed out the "AS Food Guide." I then took it to a Nutritionist who came highly recommended to me; one who believes that alteration of diet can help alleviate many medical conditions. She agreed to work with me to fight my AS, reviewed the AS Food Guide and made specific modifications to the no starch diet for me based upon my blood tests and profile. Here’s a synopsis of her recommendations:

>No starch diet (tailored for my specific needs)
>No dairy (from cows)
>No gluten
>No refined sugars
>Supplements: fish oil, cod liver oil, Magnesium Glycinate 400mg/day, Calcium Citrate 1g/day, Ultra Flora Plus-DF (probiotics), Carlson’s Super 2 Daily (vitamins)

I can definitely say that in less than 2 years I've made excellent progress toward living pain free with a lot less medication. So far, I've been able to reduce the amount of Flurbiprofen I’m taking by more than half, have eliminated the Metronidazole and no longer need Prednisone, as my flares are milder and less frequent. I'm convinced that with stricter adherence to my specific diet I should be able to eliminate meds altogether!!

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#205898 - 01/08/07 07:24 PM Re: No/Low Starch Diet Success Stories [Re: Chimike]
JeanneMedina Offline
Iron_AS_Kicker

Registered: 09/12/06
Posts: 1034
Loc: Northern California
I am still a work in progress, but I put together some information about my experience over the past 4 months that may help others as they get started:

http://myankylosingspondylitis.blogspot.com/

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#205899 - 03/13/07 08:54 PM Re: No/Low Starch Diet Success and more question [Re: Dotyisle]
jan_the_man Offline
Active_Member

Registered: 02/14/07
Posts: 63
Loc: Tofino, B.C.,Canada
I did the three day apple fast, then one and a half days water only, then another day and a half of juices. Really didn't feel like eating anymore, but thought I should, so I started today. The months long flare I've been living with has evaporated, I have some residual stiffness through most of my body (nothing like before) the more concentrated pain at old injury site has abated, and I've discovered something very interesting: a "string" of muscles so tight as to be painful that were hidden under all the other acumulated pain of the aforementioned. I recognize tihs "string" or more accurately, remember it dimly from my past, when flares ,generalized stiffness,etc. didn't hide it. I don't remember when or where this originated, NSAIDs I've been taking for most of 15 years have masked it as well. I'll post again when I've got more time logged in on the NSD. I'm going to treat the "string" with massage for now.

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#205900 - 03/18/07 12:07 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
smokin63 Offline
New_Member

Registered: 10/31/06
Posts: 23
Hello
I have suffered from AS for a good 20 years and always thought the pain was a result of the hard work I do ,I figured I had damaged my neck and back.
I was at the point were i was takeing up to 12 Ibprofen + 12 asprin a day and it was only dulling the pain , I also had use sleeping pills to sleep .
The pain progressed and a freind suggested I see a chiropracter . That helped and gave me great temp. releif . It was not unheard of for me to just roll out of bed onto the floor , It was easyer to get up from the floor . at times my wife had to help with my shoes and socks .
Then the morning came that I could not move , the pain was unbearable . With the help of my wife I made it to sitting , I then got to my feet and walked to the end of the bed and had to stop and sit down . I was Done ! I made it down to the chiropracter and at that point was diagnosed with AS . I then needed to eduacte myself on what could/couldnt be done .
I stumbled onto this site and the NSD diet , I have been on the diet for about 4 months and am still modifying it to fit me . I am estimating I have acheived a 80% reduction in pain and now only need to take something for pain an average of 3 times a week instead of 3-4 times a day !

Thanks
Jim

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#205901 - 03/27/07 12:49 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
CathyLynn Offline
Member

Registered: 03/22/07
Posts: 36
Loc: Maine
Thank you for compiling the list of people who are doing the Low/no starch diet.
_________________________
Cathy

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#205902 - 04/19/07 02:50 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
earthbound Offline
Active_Member

Registered: 12/04/06
Posts: 67
Loc: South Korea

I haven't been here for some time. I've had a great deal of success with the no starch diet. I thought I would tell my story in the hopes that someone who may now be going through what I went through can see some hope instead of pain.

About 6 years ago I started showing some symptoms of the disease. I noticed that I wasn't recovering quickly from sports related injuries. I was in my late twenties and I thought it must be aging. I had incredible pain in my feet, in my heels and the balls of me feet. I was in the army and I thought I was going to have to quit because I couldn't march. The pain subsided and I continued my athletic life. The next year I developed incredible leg cramps and shin splints. They were so bad one day I almost couldn't walk home from my run. The shin splints refused to go away; they resisted stretching, medication and rehab. I used to be a runner and now I couldn't run for the bus without feeling pain. I had to quit most sports including downhill mountain biking. I continued to travel, rock climb, and ride my bicycle. I limited the distance I would walk, the steepness of the hill I would ride my bike on and I wouldn't run. Rock climbing seemed to be OK because I was using my arms and I could play hockey once a week (instead of 3). The pain in my feet returned along with cramps in my legs. Then I developed incredible pain in my elbows. I was previously able to support all my body weight with one arm without breaking a sweat, I doubled the grip strength requirements for the military, if I could get my fingers on something (like a door frame) I could pull myself up and over with ease. Suddenly I couldn't hang from my arms or take a slap shot in hockey. I couldn't even pick up my kindergarten students without pain in my arms (I'm a teacher now).

I was terribly confused. I was healthy and athletic, but everything I was good at, every strength was being stolen. There seemed to be no reason, the doctors had no clue. I refused to stop living a healthy life. I continued to commute on my bike.

I once trudged 65 KM through the Canadian shield in two easy days, hiked uphill 8 hours just so I could get one fresh run through pristine snow on my snowboard, took my bike on 5 hour rides through mountain single track just because it was so damned fun. Now I was relegated to flat pavement and short trips. One day on a simple easy little ride on pavement 2 hours from home I noticed something very strange. To this day I can't explain the overwhelming feeling of dread. I felt some pain un my knees, but worse than the pain was the incredible fear I suddenly felt about being 2 hours from my house. I was in the middle of the city, on flat ground with the greatest invention ever beneath my seat. My steed, my mountain bike and I was terrified. I rode home as slowly as I could and attempted to go to sleep.

I woke up the next morning in incredible pain. My hands hurt in very specific places, my knees where swollen and very painful to touch, my feet ached, every old injury seemed to be screaming at me. My head was foggy like I had been drinking, I felt a little dizzy. I had such a hard time getting out of bed, even my warm shower hurt my knees. The warm water seemed to increase the inflammation. I hobbled to work and I could barely walk up the flight of stairs.

I dreaded going out, I dreaded waking up, I dreaded sitting at home alone with my active past floating through my head, tormenting me with every thing I had suddenly lost. I dreaded Saturday the most. What was once my day of action and adventure, was now my day of depression and T.V.

My girlfriend broke up with me because she said I was too negative....Girlfriend number two gone while every sport I loved was being stolen by some unseen menace. My life felt like Hell.

I secretly wished I had cancer so they could cut one of my legs off and I could go on living my life. I could ski with a prosthetic, but as it was I couldn't do anything, shopping was frightening. No one had any sympathy, they would say horrible things like 'You're getting old, live with it' 'It could be worse, it could be cancer' 'Hey, your not dying'.

I wished I would die. I couldn't imagine a life like this. I saw James Brown live in concert the year before he died and he looked so much healthier than I. I struggled to stand and watch him perform. He was 73 and I was 32.

I finally got diagnosed with AS. It turns out I don't have the genetic marker, but my cousin suffers from Rheumatoid Arthritis. My Doctors told me to rest, I bought a motorcycle to replace my bicycle. I had to pull my leg over the seat with my arm and balancing my little 125cc bike at red lights really hurt. They tried various meds until they finally tried Celebrex, Dmards and steroids. I was never happy with the results. I wanted to ski again, but my Doctor just kept telling me that I had a disease and I should accept it. There is no cure he told me, this is the best we have for you. I was furious.

I finally found someone who claimed he cured himself with a non starch diet and he recommended I visit this site. I cut out all starch, all sugar, and limited coffee and alcohol. I ate mostly raw vegetables (lots of them), egg whites, tuna, pork or chicken. I lost a lot of weight (which I honestly didn't need to do). Within a month I no longer had any aches in my hands. I was absolutely religious about the diet and within 4 months I was able to return skiing. The first day I had some pain and I worried that because of the damage done to my joints I would always have some pain. By the fourth time I went skiing I was 100% pain free and skiing on groomed runs at my top speed and intensity. My bike is now fixed up and ready for spring and I have plans to start riding. I'm trying to take it one step at a time, trying to ease back into sports. I hope to be able to return to a complete active lifestyle, complete with treks in Nepal, mountain biking downhill, touring on my motorcycle, and back country skiing. I'm not sure I will take up running again, we'll see.

The diet is free, no meds to buy, no doctor to see and I feel healthier than ever. I suddenly have my life returned to me and I can't express how happy I feel. I suddenly have a future again.....I now rip past those people who told me I was getting old. Don’t' accept this disease and don't accept the comments of any doctor who tells you to accept it. Growl at it and starve the [**BLEEP**] out of it.

Thanks to all the people at Kick AS who gave me advice and let me know they understood my pain. I really needed it, it saved my life. I hope anyone who needs advice from me now will send me a message. There is far more hope available than what doctors can prescribe. Kick AS!

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#205903 - 10/08/07 04:18 AM Re: No/Low Starch Diet Success Stories [Re: earthbound]
earthbound Offline
Active_Member

Registered: 12/04/06
Posts: 67
Loc: South Korea
Continued,

Well it has been some time since I wrote my triumphant success story. Initially I had great success with the diet. If I fell off the diet, the symptoms would usually re-appear. I feel that the diet helped me get better results than only the medication. I cut down the medication dramatically and have actually cut it out all together. I still keep some around for days when I may have eaten too much starch or done too much. I have stalled somewhat and I haven't returned to the level of activity that I had hoped. I have actually started eating starch again. I felt like I was starving myself. I still eat low starch, along with more vegetables, less refined sugar, limited alcohol and reduced acids (I keep antacids around too). I can't seem to shake some of the long term damage caused by the disease and from time to time (very rarely) I suffer from some minor inflammation. I'm still working on getting better and I still feel as if I'm improving. I find some starch is better than others. Starches mixed with rich or oily foods seem to cause the most problems, plain starch (brown rice) seems to be the best.

I'm even going to acupuncture (including the injection of bee's venom) which seems to be reducing some of the aches in my body (I still have persistent morning stiffness and aches that the low starch diet didn't seem to have much effect on).

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#205904 - 11/07/07 11:01 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
jmtk Offline
New_Member

Registered: 10/04/05
Posts: 23
Loc: Utah
I'm guilty of the infraction Tim described in his first post to this thread - discovered the NSD, it worked, so stopped coming here for help. However I felt an obligation to come back and share my experience in the hope that it may help and inspire others.

I was diagnosed with seronegative spondyloarthropathy in the summer of 2004 at the age of 44. My symptoms were comparatively mild - lower back stiffness and pain in the hips, especially when seated too long. My doctor prescribed various NSAIDs, and I eventually settled on diclofenac. For the first half a year, I thought things were pretty well under control, since I could feel fairly good after taking 50 to 100 mg of diclofenac. The routine was that I would take some medication, feel decent for a day, maybe two, then the pain and stiffness would return to the point where I felt I needed to take more pills. During this time I also read a lot on the web about this disease and its treatment, and learned that chronic use of NSAIDs was likely to lead to bleeding ulcers and other problems. Somewhere along the way, I came across KickAS and the no-starch diet. I consider myself a logical, scientific person, not some new-age health-food holistic-healing nut, and scoffed at the notion that a diet could help an auto-immune arthritis. I disregarded the NSD and went back to reading more “scholarly” articles about AS on the web.

Over the next half a year, my symptoms gradually worsened. My hip pain was now chronic, causing pain with each step. I could feel stiffness creeping into my neck and shoulders. Back stiffness was quite pronounced. I had to stand frequently during the day at work to alleviate the pain from sitting. I began to get depressed wondering what I would be like in 5, 10, 20 years.

Within a month of my diagnosis, I began daily charting of my pain levels, medications, exercise habits, anything I could think of that may have had an effect on how I felt. Typically I took diclofenac every day or every other day.

I eventually wandered back to KickAS and the NSD forum and started reading posts. It was such a radical diet, especially since I existed on breads, pasta and cereal, that it took a couple months to convince myself to try it. I gave it a casual one-week shot and proclaimed that it didn't work, not actually sure that I wanted it to since I couldn't imagine giving up all those wonderful, starchy foods.

Another few months passed with continual worsening of my symptoms. I did more reading of NSD posts on this forum, including some of the scientific theory behind it: Klebsiella in my gut feed on the undigested starches. My immune system is confused between klebsiella and my own body's cells due to molecular mimicry. Starve out the klebs via the NSD and the pain and inflammation decreases.

I went back through my year of pain charts and looked at the time that I went the longest without drugs - 6 days - and read in my notes that during that time I'd suffered from a nasty stomach flu that effectively purged my GI tract and prevented me from eating much of anything for several days. But my joints actually felt pretty good. Hmmm, maybe there WAS a connection between the gut and pain...

By now I decided that I needed to give the NSD a real chance. It was September of 2005. I promised myself I would be serious about it for at least 3 months. I would proclaim it successful if I could cut my NSAID use to once a week. I went strict NSD from the beginning. I kept eliminating more and more things from my diet, but still had enough pain to warrant diclofenac every few days. After a month and a half, I eventually hit upon the right combination. I went for a full 2 months without any NSAIDs and felt really pretty good! It was time for some negative reinforcement to prove to myself that this crazy diet was working. A lunchtime trip to the Olive Garden with coworkers for pasta and breadsticks gave me that opportunity. Two days later the pain forced me back on NSAIDs. I've been NSD ever since, for over two years now.

I still keep daily charts of my pain levels, exercise, medications, and now diet. There have been several times when I experienced a return of significant pain and thought the diet wasn't working, only to discover that starch had crept into my diet unknowingly (iodine is a must!) It is a difficult diet to follow and requires a lot of self-discipline. There have been many times when I felt sorry for myself for being deprived of some wonderful foods. I get over my self-pity pretty quickly, though, when I remember that I'm able keep this disease in check. I no longer have chronic pain when I walk. I rarely have to stand during the day anymore to alleviate pain from sitting. My lower back is pretty good in the morning and I can actually bend over the sink to wash my face. I haven't felt any neck or shoulder stiffness in months. I'm not pain-free, but it's very tolerable. I still take diclofenac on occasion, but now measure the time between doses in weeks or months.

Give the NSD an honest try. I’m thankful I did.

Jeanette

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#205905 - 01/19/08 05:47 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
Kaisita Offline
Journeyman_AS_Kicker

Registered: 09/17/06
Posts: 121
Loc: Helsinki, Finland
Hi everybody!

I haven't written my story earlier as I was planning to do that only when I was totally OK again. Well, now I realize that it would be silly to wait until that as my story is a great success already.

My name is Kaisa and I'm 27 years old. I will start from the beginning as I think that explains a lot..

When I was was 14 years old I went vegetarian and never felt healthy again. I had constant stomach ache and all sorts of IBS symptoms for years and years (that time I could not think it was to do with me being vegetarian). In age of 20 I
had a reactive arthiritis for a year on my right leg joints.
And in age of 23 had great SI pain for a few months. Both times walking was really difficult.

And in age of 25 everything just collapsed. AS came suddenly and was very severe. All my big joints were inflammated, I could not walk (basicly stayed in bed for 5 months)or wash my hair etc. And I was told I made it all up because I was so stressed up prior to all this! Finally they agreed to take some blood tests and found out my inflammation markers were really high. They said I probably have RA and put me on methotrexate, oxiklorin, sulfasalazin, NSAIDs and cortisone.

I’ve studied complementary medicine myself and felt really bad about those drugs. I just thought I had no other option. Well, cortisone naturally helped but also gave me osteopenia. Other drugs just caused nausea and other side effects. Only sz had some good effects, but still I was feeling really bad.

I got AS diagnosis when I was 26, found Kickas a few months later and started the diet the day I found it (October 2006). I already then had limited diet due to IBS: I ate no dairy, fruit, rye or wheat. So I needed to cut off mainly rice and starchy vegetables. The morning stiffness vanished right away but it took about a month before I saw any effect in my pain levels.

I needed to be very strict then (and still do), I couldn’t have even the tiniest amount of starch. I felt pretty good for a few months but then I got quite sick with other kind of symptoms: constant fatigue, nausea and IBS again. I believe I waked candida up by adding foods like dried fruit and berries into my diet. (Apple diet was a killer as candida loves apples..)

It has taken a year to fight with this fungus issue (not only candida I think) but finally things are looking better. I had to go even more strict with my diet. I can hardly have any carbs at all at the moment..but that is an other story. Most importantly NSD works, it saved my life!

I want to thank eveyone at KickAS, you people are great! THANK YOU Tim, John, Chelsea, Rita, Jeanne, Charlie, Ted, Gerard and many many others.

Some things I also want to mention:
*
I was avoiding foods containing sulphur as I thought they fed klebsiella but now I believe my symptoms were die-off reactions from fungus dying. Eg cabbage, broccoli and eggs contain sulphur but they are also strong antifungals.
*
If NSD seems not to be enough, I recommend going to http://health.groups.yahoo.com/group/candidasupport/
There is a wonderful program for healing (not just candida but everything else to do with poor immunity too).
*
If someone feels I could be of any help for them, do not hesitate emailing me.

Take care everyone!
Love, Kaisa

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#205906 - 02/18/08 04:18 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
Vima Offline
Member

Registered: 02/16/08
Posts: 47
Loc: Spain
Hello everybody:
I have been with ankylosing spondylitis about 15 years, the last 9 and diagnosed before and after medical treatment have my EA was always for the worse and the pain shoots, anquilosado (fusing), low labor .......... were on the rise .
As in most cases, I went through multiple treatments of anti-inflammatories, rehabilitations, searching for alternative medicine .... and a continuing process of physical and psychological decay hacian (made) me think to obtain a disability pension for the future.
Everything changed the day I found the English page of a sick www.izorrategui.org
I drew attention to the way they deal with the enfermedád (illness) and soon decided to do the diet, resulted in:
In a few days leave 14 pills sulfasalazine, inacit, voltarén ..... I left two weeks inmobilizado bed, I could volvér (return) to work and make life normál. I have not returned to have outbreaks or inflammation. Evan diet, also excluding potatoes, rice and .... I just helped aloe vera (occasionally) própolis, polem ... Fasting apple once a week, one day a month and three days every six months, I consider indispensable.
I continue my treatment without the support of reumatologo to diet, but if I wish to inform you that in my evolution continues with Radiography (X-rays) and confirming the transfer, I have an analysis for endocrine seguridád (safety) have to be doing the right thing and have no deficiencies in iron, Magnesium .....
Actualidád (actually) I have seen in the last visit to reumatologo, that in his opinion the radiography (X-ray) confirmed that I did what my state external tells me every day that I am in remission and my Radiography (X-ray) of 2000 shows a sacroilitis bilateral grade II / IV, similar to 7 years later, thanks to the diet without starch.
Also, after two years of diet, I still have some results in the analysis that is not possible to detect any abnormality in the food, just the "good" cholesterol that is at 70, so I do not think it necessary to take supplements in food my diet, I emphasize that it is always "my diet," possibly in other cases, with a little more power, with little intake of salads, miél (honey), nuts ...... not happen iguál (the same) and needed help, but taking food rich in iron, magnesium ... etc.todo (everything) should go well.
Regards to all and I hope seguír (to follow the) learning here as a starch diet with bringing in a healthy way.
Any information on the evolution will find me here:
Http://elblogdelalmidon.blogspot.com
Vima

Dotyisle edited some of the Spanish words in () - 2/19/08

Perdonád translation.


Edited by Dotyisle (02/19/08 08:12 AM)

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#205907 - 02/19/08 03:53 AM Re: No/Low Starch Diet Success Stories [Re: Vima]
Pello Offline
Fourth_Degree_AS_Kicker

Registered: 09/06/01
Posts: 311
Loc: Basque Country
Hello, Victor. I'm glad to see you here, in Kickas. Fellow kickers must know that Victor or Vima is a expert on NSD and He is one of most dynamics participants in the spanish forum http://foros.espondilitis.info/, having also his own web site about NSD. Welcome, Victor. I'm sending to you one Private Message.

Pello.
_________________________

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#205908 - 02/24/08 02:34 PM Re: No/Low Starch Diet Success Stories [Re: Chimike]
Landis Offline
New_Member

Registered: 02/02/08
Posts: 5
Loc: Minnesota, USA
Chimike,
I read your story with great interest as your story is very
similar to mine. I am doing NSD along with some enzymes, Wobenzyme and some other from Japan as well as regular vitamines and mineral supplements. I have not felt so good for years. I'm 62 and have had AS symptoms ever since I returned from a mission trip to India. My stomach was a mess. I lost weight. But I gradually got better. Then the aches and pains came. My neck went stiff and feet decided to get stiff and sore. I kept getting stiffer shoes which was not smart as my feet got more stiff. Now with PT and execise my feet are getting better. The diet has calmed down my neck. Now it's a slow process of regaining strength lost during 2 years of near immobility. Hope all is going well. Take care.
Landis
_________________________
Newly diagnosed. Exploring options. Collecting info. Asking questions.

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#205909 - 03/06/08 05:20 AM Re: No/Low Starch Diet Success Stories [Re: Flasharry]
Flasharry Offline
New_Member

Registered: 10/11/04
Posts: 12
Loc: London. UK.
OK, so it's been a while since I posted my success story here and everything is going great. I pretty much know what i can and can't eat now so consequently, I am mostly pain free. In order to get fit, I have re-discovered cycling, this time on a recumbent bike (Cruzbike) which is great fun and highly recommended, plus our 11 month old loves it in his seat on the back.

Anyway, the reason for my new post. I have come to realise, in my previous post, I have given some bad advice for those starting the diet, which I feel I must correct, I said, "Take a good multi vitamin, and vitamin C".

This (from my experience) has to be corrected to, "DO NOT TAKE MULTI VITAMINS OR VITAMIN C WHEN YOU ARE STATING ON THE DIET.” Why?

After many months of trying various different ‘multi vitamins’ and ‘vitamin C s’, I have not found a single one I can take without trouble, (including the ones naturally sourced from vegetables). I get a very clear and noticeable reaction within 24hours, lasting for at east 48hours every time I take them. This probably was the reason it took me so long to get the diet to work properly originally.
I have to say, I don’t seem to be suffering from any ill effects through lack of vitamins whilst on this diet and in fact, if anything, my resistance to colds etc, seems to have gone up slightly lately.

Wishing you all the very best.
Stuart.


Edited by Flasharry (03/06/08 05:26 AM)

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#205910 - 08/01/08 07:24 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
hismelt Offline
New_Member

Registered: 07/28/08
Posts: 12
Loc: Perth WA

Heh all,

Well my story so far….

I was diagnosed in 2003 after many many visits to different doctors throughout the years trying to work out where this pain in my Butt came from (SI’s of course)

All through my teens I had lower back pain (lumbar) I thought it was windsurfing. I was always a very active person. Fit. I had no idea. I started taking nsaids – loved it… made me feel normal…I didn’t know what I was doing to myself.

I worked in mining…its what we do over here in nor west Oz.. I grew up in it...born to it..

Doing 12 hour shifts when I was in my mid 20’s running up and down stairs in a processing plant…then it started to really hit…I started to limp… pain in my left hip you see. The guys used to say to me “I’d hate to see you when you are 40” I started getting scared. I couldn’t work HARD like I used to…

Doctor after doctor – checking me for prostate cancer – you boys out there know the test?? Lol. Then I was sent to a rheumy, had a blood test, x-ray… bam…”you’ve got AS my boy…!!!” On your bike and…all you can do about it is take Voltaren…. Nothing else (honestly that’s the feedback/advice I got from the rheumy here in Perth!!! That’s it – no recommendation for a stretching regime or anything) haven’t seen a rheumy since.

So…I took the drugs. I would mark the days on the calendar how many pills I would pop in a day…I was up to four a day and it would fill every day of the month… I have never liked pills of any sort. Even panadol was something I didn’t take.

I had the pains that everyone else here has had I’m sure…couldn’t sleep, couldn’t roll over in bed without screaming out loud – even making it to the loo was just toooo hard.
I kept working somehow… and they closed the plant where I worked. I moved on…got another job in a control room (think Homer Simpson)

Plenty of time to research the net. I came across KickAS and read and read and read. I feel like I know all of you here (in the diet section anyway) I started cutting back on the “problem foods” it worked. Took a while…but it really works!!! I had kinda drawn a connection myself years before. As I had noticed on days that I didn’t eat anything I would feel good – but of course, I had no direction, no explanation.

I’ve been almost in remission this year up till now …then it came back…this is my first day job that I’ve had in more than 10 years (maybe there is a sunlight connection hey Krishna??) So, back to the diet – seeya later AS – I’ve really noticed however that since I’ve started supplementing in the last week its taken off in leaps and bounds – go!!! Home made yogurt/glutamine/fish oil/zinc!!! Supplementing is the other link in the chain – heal that gut!!!

Thank you all here at KickAS…you saved me!!! Thank you.

Geoff

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#205911 - 08/20/08 07:48 PM Re: No/Low Starch Diet Success Stories [Re: gingann]
BillH Offline
Second_Degree_AS_Kicker

Registered: 04/18/08
Posts: 217
I can't believe I didn't post this earlier -

First big flare was 7 years ago - took 9 months to even guess at what it was, but then it went into remission. It slowly started to creep back over the last few years, until this winter it got out of control and I was starting to lose functionality. Everything became very difficult, whether getting out of bed, a chair, a car... Even breathing hurt sometimes. I spent months reading everything I could about AS and the treatments that people have used. I tried all kinds of stuff to no avail, but was aware that the NSD should do some good. Initially I went on NSD with little success because it turned out I was popping all kinds of starchy supplements and didn't know it! Later I doscovered that things like beef and eggs, which I was allergic too as a child, also seemed to set of the AS monster, at least in a mild way. Sooo- 6 months NSD later, with no eggs or beef, very little dairy other than butter, and I am almost pain free!

I have lost weight and am more active than before and honestly feel better physically than before the diet began.

I no longer take any pills at ALL for AS - it was tough but I finally got off NSAIDS which really seem to make the disease worse, IMHO.

I feel lucky to have found this site and the people on it - I have my life back in a big way and I plan on kicking AS for a long time to come. It still lingers in the wings, waiting to bite me if I stray from the diet but I know what to do now.

One piece of advice I can give to people trying the NSD: Be very very strict about it. It may not work at all unless you do - sometimes even small things like spices (most of which are starchy) and garlic can set you off and then it will seem like NSD does you no good. It sounds nuts, but I would suggest trying something like nothing but bacon and eggs(no pepper!) for 2 weeks...And cut out everything else, even supplements! Just drink water. You will get used to the lack of carbs after a few days and it will be a much more fair test of how food affects the AS. (it will also be easy to plan, and even though it seems like its unhealthy, a few weeks wont hurt you) - its important to have some success in the beginning so you will know you are on the right track. Then you can add more to your diet and you will *know* how to get back on track if something goes wrong.

Go out and kick some!
_________________________
**************** Really Feel life. Every second. One breath and one sound at a time. Joy is always there, waiting on the other side of your mind.

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#205912 - 09/16/08 01:54 AM Re: Jon's NSD Success Story [Re: Kiwi]
Jorgensen Offline
Apprentice_AS_Kicker

Registered: 07/01/08
Posts: 78
Loc: Southern California
Very encouraging and very uplifting. Thanks guys and God bless you.
_________________________


"This is the Day the Lord has made, let us rejoice and be glad in it."

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#205913 - 06/08/09 12:36 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
jbirdus Offline
Journeyman_AS_Kicker

Registered: 04/30/08
Posts: 106
Loc: Kentucky, USA
A year and a half ago I was at the end of my rope. Couldn't sleep, couldn't walk straight, mornings were hell. My neck was almost completely immobile, my back spasms were unbearable, my whole body would seize up, I couldn't breathe, life was miserable. I had gained 30 lbs from inactivity, I was popping several Aleve tablets each day just to make it thru the work day. I endured the stupid comments from my co-workers about how old I seemed. I wasted thousands of dollars on chiro visits and physical therapy. I was sinking into depression because no one knew what was wrong with me and I felt helpless.

Finally I went to a new doctor to get some blood work done out of desperation. He took some x-rays and a couple days later I was diagnosed with AS. Reading about spinal fusion scared me to death. I used to be athletic, I raced Mtn bikes, I played basketball and tennis. Now I was overweight and doomed to be on expensive medicine or be crippled.

Then I found this site, I read about the diet, I got Carol Sinclair's book, I had hope! I started the diet, I had some bumps along the way, I had some bad flares and made some stupid decisions, but after a few months I finally got used to my new lifestyle. I started working out EVERY day, whatever I could do. I think weight training is VERY beneficial, especially back exercises. I lost the 30 lbs I had gained by drinking lots of water and avoiding starches and most carbs in general. I took vitamins and fish oil. I started doing yoga in the mornings. I work around the house instead of sitting in front of the tv or computer.

Now, I am pain free. I don't take any meds, not even tylenol. I have packed on a lot of muscle in the gym, I can turn my neck like a normal person, I can do sit ups, I can wrestle with my kid, I can practice martial arts, a couple weeks ago I rode over 50 trail miles on my mtn bike in one day and I am training to start racing again next season. Along with exercise, the No Starch Diet has given me my life back! I miss the junk food and bread, but all I have to do is remember the sad, broken down man I used to be.

I don't post very often on this page but I read every post and I am very grateful for those who take the time to answer questions and help others. If you are reading this and are thinking about trying to diet, I encourage to get a gym membership right away and make that a part of your new lifestyle, anything you can do is better than nothing. Stay in motion, stick to diet for a couple months before you dismiss it. It takes time, but once you have your life back it is totally worth it. Jason M.
_________________________
"Experience: the most brutal of teachers. But you learn, my God do you learn." -CS Lewis

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#205914 - 07/25/09 07:55 AM Re: No/Low Starch Diet Success Stories [Re: Pello]
kbeadle Offline
New_Member

Registered: 07/18/09
Posts: 12
Loc: Alabama
This was very encouraging, thanks.
_________________________
Mac user/ Graphic Designer/Professor

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#205915 - 07/25/09 08:05 AM Re: Jon's NSD Success Story [Re: Jorgensen]
kbeadle Offline
New_Member

Registered: 07/18/09
Posts: 12
Loc: Alabama
Wow, what do you eat, if you are allergic to meat, eggs and dairy? That on top of NSD leaves only leafy veggies!
_________________________
Mac user/ Graphic Designer/Professor

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#205916 - 07/25/09 12:18 PM Re: Hi my name is Tim and I am a NSD success story [Re: Dotyisle]
kbeadle Offline
New_Member

Registered: 07/18/09
Posts: 12
Loc: Alabama
This was most helpful!
_________________________
Mac user/ Graphic Designer/Professor

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#205917 - 07/26/09 03:30 AM Re: No/Low Starch Diet Success Stories [Re: jbirdus]
jay_bharat Online   content
Master_Sergeant_AS_Kicker

Registered: 12/08/08
Posts: 641
Loc: INDIA, Tamil Nadu
Hi,
Good success story.

Jay

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#205918 - 08/06/09 11:51 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
danyhurts Offline
Fourth_Degree_AS_Kicker

Registered: 01/19/09
Posts: 322
Loc: New York, USA
It was February 8, 2006, my daughter Jenny's 13th birthday. My son Danny had been suffering from sciatica, limping and in terrible pain for a few days. It wasn't the first time he had sciatica. He had epidural steroid shots with a pain management doctor, Dr. S, at least 4 times that I can remember. This particular event seemed different. He came home from work and was in unbearable pain. He couldn't walk, sit, or lay down without overwhelming pain. Somehow he managed to go to dinner, as to not spoil his sister's birthday.

That night, there was no relief from the many Advil pills that he popped in his mouth, to try to control the pain. Actually, Advil had become a nightly ritual as well as an all day ritual too. He couldn't cope without it. The next day, we went to the hospital for 4 days. Saw every doctor imaginable. He was given very strong intravenous pain meds, so at least he could sit still without pain. After 4 days, over $4,000.00 of hospital bills {after insurance}, and no diagnosis, we went home.

Danny did go for another epidural steroid, but this time, the doctor gave him the shot, more for his lower back, which was where the pain had now seemed to be concentrated. He recommended he see a sports medicine doctor. So off we went to yet another doctor to see if we could get a diagnosis.

Dr T. examined Danny, and proclaimed, "I think you have Ankylosing Spondylitis". AS is an autoimmune disease for which there is no cure. Thanks doc, we might as well throw in the towel. We came home , looked up AS online, and then really got depressed. When the doctor got the blood tests and the MRI results, he confirmed his diagnosis. He told us we would be better off seeing a Rheumatologist.

With Dr. T's recommendation, we found Dr. A, a Rheumatologist. Wasn't thrilled {understatement},with the lack of personality from this "excellent doctor". Dr. A had no compassion. He was quite dismissive and slightly uninterested in Danny's condition. In a monotone voice, he told Danny that if the pain became unbearable, there were other pain medication choices, but there were very bad side effects to these medications. Otherwise, there is no other treatment. I remember the look on Danny's face. It seemed hopeless. He said to me, "Mom, I can't live with this pain." As a mother, my heart broke. The last thing a parent wants to hear is that their child has an incurable painful disease.

The only way Danny could deal with the pain the following year was to take lots and lots of Advil. He went for his check-ups with the Rheumatalogist. Same disinterested ,emotionally removed interaction with this "excellent doctor". We would ask him the same questions each visit. Is there a cure? Was there an alternative medicine? Is there a special diet? The answer was always NO, NO, NO.

Danny kept refusing the stronger pain medication out of fear of the side effects.

I became obsessed with finding information online that could help him deal with the pain from AS. My search was long and extensive. Then one day, I came across KickAS.org. This is where the clouds parted, and the sun came shinning through!

I am skeptical about forums. I wasn't sure that the information on KickAs was valid, so I read all the information available on this web site, and also read the daily discussions.

No Starch Diet? Why didn't the doctor tell us about that? I called the doctor to ask him about the No Starch Diet. He advised me against it. Even went as far as saying it was dangerous. That the diet lacked an important food group and that Danny would become deficient in many important vitamins and minerals. I continued to read on this new web site KICKAS.org. Dr. A had not offered us any hope, yet I was reading about people who were responding to this diet. And they were still healthy after years of being on this diet. So maybe there was hope?

I told Danny about the web site and the diet. He glanced at the web site, and told me there was NO WAY he would do that diet. I decided not to push the diet on him. I continued to read on and join the free forum, so that I could post our questions. I would say" Danny, I got responses to our questons, do you want to hear what the people on this site are saying?" He would always say, "Sure".Then I would read the responses to our questions, from these incredible, thoughtful, caring, and brilliant people.

Jan 23, 2009 was a very painful day for Danny. He had been suffering for about a week with neck, upper and lower back pain. He was going beyond his pain tolerance level. He said to me, " I want to try that No Starch Diet and I also want to try to eliminate dairy." Wow! He was ready and so was I. We really wanted to believe it would work.

I bought iodine to test all the food. Looked up what foods he could eat on the kickAS web site, and then, we were off and running.

After about 4 days on the diet, Danny became very angry and depressed. He said," There is nothing on this diet to eat. I can even eat in a restaurant. I won't live this way". But some inner voice kept telling him,maybe this diet might work.

No Starch, No Dairy! Lots of cooking and reading on my part. Lots of guidance from the KickAS, support, recipes, alternative medicine, and even jokes.

One week later, Danny says to me,"I THINK THIS DIET IS WORKING. MY PAIN IS WAY DOWN. THIS DIET IS NOT HARD TO FOLLOW. IF MY PAIN GOES AWAY I CAN DO THIS'. What? Did I hear correctly? Are you kidding me? You feel better? You could continue on this diet? What happened to the anger? Were we really onto something here?

The questions started to flow from us on this web site. The people on this site are extraordinary. All of our questions were answered. Although some people had different opinions on their remedies, all had respect for each other's view points. The people on KickAS are so well informed, caring and nurturing. There are many ways that people treat their AS, because not all AS sufferers have the same symptoms. We took from this site what seemed to work for us, AND IT DID! There are many alternative methods that other people have responded to. We wouldn't hesitate to try those ideas if need be.

After 5 months, the pain level had dropped from a 10 to a 3. Still had some light pain with stiffness. Continuing to be encouraged by the wonderful people on KickAS, we knew to forge on. Everyone who had success with this diet, had different time spans of when they got relief.

On this web site I also read about Apple Cider Vinegar/with mother. People reported that it was giving them relief to stiffness and pain. So once again, I approached Danny with this, too simple, idea. How about trying apple cider vinegar in water? His response once again was "NO WAY". Not surprised, I tried it myself. It seemed to immediately relieve my arthritis pain. Was this real? Was I imagining this was helping me? So I insisted that Danny try it once. I showed him that I drank it, and that it wasn't bad tasting. Once again, he thought his mother was crazy, but agreed to try it. That was the first night he slept PAIN FREE. He said, "Could it be the vinegar?". Not yet convinced, he tried it every night for a week. Same reaction. No Pain, No Advil. It seemed to be the ingredient he needed for his stiffness.

It is over 6 months that Danny started the No Starch, No Dairy diet. One month on Apple Cider Vinegar/with mother.

FOR THE LAST WEEK, DANNY HAS BEEN PAIN FREE! YES, I REPEAT, PAIN FREE!

Nothing short of a MIRACLE.

A heartfelt thank you to all the wonderful people at KickAS. You all have made a difference in giving Danny back the quality of life that he and everyone else deserves.

Sincerely,

Laurie

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#205919 - 08/12/09 01:44 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
DragonSlayer Offline
AS Czar

Registered: 09/05/01
Posts: 5989
Loc: Reno or SFLU Philippines
[This story is submitted by Professor Ebringer on behalf of "Mrs B," who's ESR is documented in the paper "The Use of a Low Starch Diet in the Treatment of Patients Suffering from Ankylosing Spondylitis," available online here in the Technical Papers section of KickAS]

Ms. Judy Beard writes:

It still surprises me that when I was told by the consultant rheumatologist at the Middlesex Hospital back in 1969, at the age of 20 that I had ankylosing spondylitis (AS), the news came as a huge relief. I had never heard of the disease but somehow I felt vindicated. The pain I had experienced over the previous five was not down to “growing pains” nor was it a figment of my imagination for I had been told many times that there was nothing wrong with me that exercise could not cure. It had a name and it was treatable.

To be fair to the medics, diagnostic techniques of such conditions in the late 1960’s were not as well advanced as they are now. It was thought in those days that AS was a disease of young men not women. Nevertheless, at 15, I had low backache, more prominent at night and lasting for several hours. By 17, the pain started to travel from my back to my buttocks and thighs and sometimes I felt it on one side and sometimes on the other. At 19, I had developed muscle stiffness which was worse again during the night and I had acquired a slight stoop in my posture. The muscle stiffness eased in the mornings after exercising.

It was after graduating that my two university flatmates ganged up on me and made me promise to do something about myself when I relocated to London. That is how I came to be at the Middlesex Hospital. On diagnosis I was prescribed phenylbutazone to reduce the backache and a course of physiotherapy to improve my mobility.

By the time I was 25 years old, the pains had spread to my shoulders, ribs and hips. It was then that the hospital confirmed that my ESR (erythrocyte sedimentation rate), a measure of inflammation was 55 units which indicated that the disease was very active. The upper normal level of ESR is 20 units.

It was in 1975, that I found out that I was HLA-B27 positive and that I had inherited the gene from one of my parents. This would explain why my mother’s brother also had AS. I was treated with antibiotics, phenylbutazone and other non-steroidal anti-inflammatory drugs or NSAID’s. Sometimes I felt better but at other times the pains came back. I do remember that in 1976 there was an exceptionally hot summer, and I had never experienced so much pain.

Two years later the pains and stiffness reached my neck which meant the whole of my spine was affected by the condition. I could not turn my head and had to rotate my whole body looking to the right and left when I crossed the street. During my driving test, reversing round a corner proved to be the most difficult manoeuvre, but I passed. Nearly thirty years on, I was amused, when I took part in a fundraising day on a driving test site, to discover that I could reverse a medium-sized truck into a designated parking space without difficulty, relying solely on its huge mirrors. The reason that I could do this was simply that I have had to depend heavily on mirrors ever since I passed my test all those years ago.

In 1983, Dr. Ebringer, who was then my consultant, suggested that I should try a “low starch diet”. Initially I had 3 nutritious meals a day with fruit, vegetables, fish or meat but each had very little starch. The term “low starch diet” meant no bread, no potatoes, no cakes, no pasta and no rice. It was not always easy to stick to this regime but it is now a way of life – with the occasional lapse.

I began to feel better and my friends commented that they had noticed me “running upstairs” something which previously I had been unable to do. A year later my ESR was 15 and I had reduced the painkillers I was taking. The closest underground station to the Middlesex Hospital was Goodge Street on the Northern Line and on one visit to the hospital I walked up the 166 steps of the station, when the lifts were not working, rather than going to the next station and taking the escalator. Proud of this achievement, I mentioned it to Dr. Ebringer and it is written in my hospital notes of 1983.

In 1990 I spent three excellent weeks at the Royal National Hospital for Rheumatic Diseases in Bath. Five hours a day of concentrated physiotherapy and hydrotherapy made me much more mobile.

In 2000, I completed 25 years of attendance, every 4 to 6 months at the “Ankylosing Spondylitis Research Clinic” of the Middlesex Hospital. Since embarking on the “low starch diet” my ESR was never above 20 units in 41 outpatient visits. On two other occasions it was 22 and 23 units respectively.

This account is based on my hospital visits which focussed on the pains and discomfort of having this chronic condition. I am now 57. I have had a good career and now have a demanding job as a director of a well known charity. My spine is fused and the changes are irreversible but I am reasonably straight and so far my general health is excellent perhaps because of my healthy diet. My stiffness improves the more exercises I do and as part of my regime I am glad to go
walking every Easter with my local AS group.

I will never know whether anything could have been done to reduce the effects of the disease in its early stages and I don’t dwell on that. Having ankylosing spondylitis has given me a different life from the one I was expecting but I can honestly say that it has never stopped me doing anything that I have wanted to do.

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#205920 - 09/05/09 01:59 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
FormerFoodie Offline
Warrior_AS_Kicker

Registered: 05/09/09
Posts: 491
Loc: SF Bay Area, California, USA
I had placed a long winded post on the "alternative" folder regarding my experience with acupuncture. Someone recommended that I put a link of that post on the success story thread since a strict NSD diet played an integral role in my ability to manage the disease.

I am eternally grateful for the reams of helpful information I learned from this forum. I hope sharing my experiences can be as helpful to others.

http://www.kickas.org/ubbthreads/showthreaded.php?Cat=0&Number=360315&an=0&page=0#360315

Freddie
_________________________
"But I also have to say, for the umpty-umpth time, that life isn't fair. It's just fairer than death, that's all." -- from William Goldman's _Princess Bride_

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#205921 - 10/02/09 09:41 AM Re: No/Low Starch Diet Success Stories [Re: sundar]
jay_bharat Online   content
Master_Sergeant_AS_Kicker

Registered: 12/08/08
Posts: 641
Loc: INDIA, Tamil Nadu
Hi Sundar,
I have sent a PM to you. Kindly go thro and reply.

Jay

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#205922 - 10/07/09 01:54 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
bea_arthur_itis Offline
Fifth_Degree_AS_Kicker

Registered: 09/01/09
Posts: 389
Loc: TX,USA
I thought the diet did not work for me 3 months ago when I "tried" it.I read about it on miscellaneous sites about Dr Ebringer,Carol Sinclair,Kleb and AS.I decided to "try" it. I was subconsciously sabotaging myself (no iodine,eating beans,dipping fruit in sugar-doing things I knew weren't right)because the thought of permanently giving up my favorite Shipley's donut was terrifying!What's there left to enjoy in life without donuts?? LOL I'll tell you what's left to enjoy:WALKING!!!Something I very much took for granted before the dreaded disease struck.

After I decided "it didn't work for me",I started back w/ pizza,donuts,etc,all the delicious things and I was 10X worse.I was crippled! I had to quit my FT job and go PT.I had to quit riding my motorcycle. It was excruciating.I cried.I thought "I'm gonna prove this Dr wrong" I did a culture on myself and I had substantially more Klebs than the general population. I got sad because I knew I had to do the diet.I thought"what's wrong with you?You have a chance to be pain free,to not go on those meds you are so scared of.You should be happy."(I am terrified of TNF blockers because I have a family member with MS-I also work in a lab with blood,spinal fluid,live bacterial cultures-I need all my immunity).

That's when I started.I knew it had to be done.I knew this was not just some experiment.This was a NEW WAY OF LIFE.This is a 100% commitment.1 little wrong thing can cripple you so it is an ALL OR NOTHING thing.

So I started very strict.Within 3 days I was RUNNING in the park.I sobbed with happiness.I tear up as I write this now.My life had hope again.My husband,who acted like his best friend had died when I got diagnosed almost cried,too.He said after diagnosis "now we can't do all the things we planned"It was like it was all given back to us.Thank you JESUS!!!!.I then decided to write Professor Ebringer to let him know what he had done for us.I needed him to know how grateful I am.He is so modest and nice,considering his contributions and who he is. What a wonderful Professor.

The only way this works is to start strict,add one food at a time,write down your pain levels,match them w/ what you're eating(by writing down everything you eat/drink,supplement).It is in this way I found out cream cheese and almonds(yes,WITHOUT skins)crippled me.Now this would lead a person to think the diet didn't work.They might say "almonds are ok"Well the secret is what's "safe" may not be "safe" for you.
In short IT DOES WORK.It takes major dedication and will power.The only way you will know it works is by doing it and doing it 100%.There is no room for "just 1 thing"

My pain levels stay around 0-1.I live a normal life now(walking,playing sports,etc)no meds whatsoever!!! It's wonderful.Having to test everything is a little annoying,but worth it. I'm a "walking" success story!!!!
SHAUNA
_________________________
Trying to keep myself away from me!
On low dose flagyl for over a year,(went on it Jan 2010) found my doc (thanks to John's advice) on roadback.org. I couldn't sustain diet anymore,but thanks to God and flagyl, I forget I have AS most of the time and run every day! smile

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#205923 - 10/10/09 12:54 PM Re: No/Low Starch Diet Success Stories [Re: bea_arthur_itis]
bea_arthur_itis Offline
Fifth_Degree_AS_Kicker

Registered: 09/01/09
Posts: 389
Loc: TX,USA
I also want to add that I have to do all my coconut flour baking w/ honey.Table sugar bothers me, too.Honey is fine!My chocolate cake tastes just as good to me!
I am one of the most sensitive on this diet,I guess, but I don't care.Eat to live!
Shauna
_________________________
Trying to keep myself away from me!
On low dose flagyl for over a year,(went on it Jan 2010) found my doc (thanks to John's advice) on roadback.org. I couldn't sustain diet anymore,but thanks to God and flagyl, I forget I have AS most of the time and run every day! smile

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#205924 - 10/26/09 06:23 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
kyliesmiley Offline
New_Member

Registered: 10/26/07
Posts: 8
Loc: Sydney, Australia
Hi, my name is Kylie and I've been lurking around this forum for too long without giving anything back, which is a travesty given all I have learned from it. I visit now and see people starting out on the diet, filled with doubt, confused, angry and frustrated and I want to scream to them 'DON'T GIVE UP!'. It's a long road, it's a hard road - much harder for some than for others, but if I can do it, you can. For me the diet was not a simple case of 'ditch starches, get better' - but I got there.

I have been diagnosed with AS, well probably. I'm HLA-B27+. I used to be fit, run....you know the story. I'm a bit of a mad researcher, so first week after diagnosis I was here. I was so happy - there was hope. I started right away. No starches, none. Apples apples, fetta cheese where there used to be pasta....and I was crippled. I was sicker than I had ever been. I had chronic diahorrea, lost kilos and kilos. I cried, it wasn't fair, the hope was gone. Then, I read more and saw that some people couldn't eat dairy. Some people couldn't eat much fruit. Perhaps I was like them? Turns out I was and the very things I was binging on were making me worse. I still can't eat any apples or any cow dairy - or any eggs.

My diet is very restricted. People think I'm nuts, or a hypochondriac. I don't tell my doctors, it's not worth patronising. None of this matters one bit to me because it works. It really does. I'm not 100% pain free, and I'm not the 'I stopped eating starches and 3 days later I could run a marathon' success story, but I am far better than I was before I started the diet, I'm on no medication, and I'm in control.

My advice to newcomers is to keep going if at first you don't succeed, keep a food diary and try not to be too put off by the contradictory info around. It's contradictory cause we're all a bit different.

...and lastly, thanks to all the regular contributors here. You guys saved me.
Kylie

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#205925 - 11/07/09 07:08 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
Ted_W Offline
Lurker

Registered: 08/15/09
Posts: 1
You guys saved my life. Ive been undiagnosed for four years with what i believe is AS. My mother has it, it took 5 years for her to get a diagnosis. she is now on enbrel and claims about the relief i recieved by cutting out starch.

You ever here of how they make enbrel? They insert human DNA into a hamster's ovary and harvest the proteins. So you are essentialy injecting yourself with hamsters once a week for $500/week. (google enbrel and hamsters) The side effects include death. I do hear it works real good though.

ive been LSDing since July, this works far better than any other treatment ive tried, and i bounced around from doctor to doctor for around 2 years before i gave up on them. Not one of these "specialists" ever suggested changing my diet for any other purpose besides weight loss. I shouldn't get started on doctors in america...

I can get a good nights sleep without pills now, almost every night, and ive shed ten pounds. I was going to lose my job/insurance because my manager thought my problems were alchohol or drug related. I was pretty much in pain all the time, the longer i sat or laid down the more it hurt.

This web site has given me back my life. I would have never put it together that the wheat and rice was such a major factor in my pain. The diet sucks, i miss a lot of foods i love, but starch=pain. Once you wrap that equasion around your brain the choice is clear.

Thanks again
Ted

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#369782 - 12/22/09 12:35 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
IamGrateful Offline
Active_Member

Registered: 11/04/09
Posts: 53
Loc: San Francisco Bay Area, CA
Success Story and I need to share it... smile

I was in pain and was desperate to try anything.

Well, I read the IBS Low Starch Diet book. I started the diet on November 1st, 2009. Basically, I went super strict. Only ate meat (chicken, fish, beef or lamb) and veggies and fruits. And non lactose milk. No nuts except almonds without the skins, at first.

Well, I was on NSAID's and feared I'd have to get on the biologics but...

I improved after a week. After a couple of weeks or three, I stopped the NSAID's.

It's now December 21st. I have no pain, my colitis symptoms (bleeding) went away finally, no MEDS! My stomach no longer gets bloated after every meal. I lost the pounds I hadnt been able to. I look younger, feel stronger and have waayyy more energy.

Give it a try. How will you know if it works or not if you don't try? YEs, it's a strict diet, but it's better to be able to walk and do anything you want to!!And its a healthy diet because you eat tons of veggies and fruits. Fruits have carbs so you still get your carbs.

The book says some people are able to eat a little starch after a while. I will try to eat some later on.

Oh, and I proved its true, because I had very bad pain for a few days after eating cheesecake one time. And after eating low fat ice cream with maltodextrin; the next day I had diarrhea and had pain in my back for a few days. No more of that for me!!However, I am sure now that in case I eat something I shouldn't have, if I just wait, the pain will go away after a few days.

I have to make time now to go see my rheumy. I cancelled my last appt with him since I felt so great.

Try it. Hope it works for you.
_________________________
Diagnosed with AS in August 2009
AS Finally Resolved! Now working to fix my gut.

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#370178 - 12/24/09 08:21 PM Re: No/Low Starch Diet Success Stories [Re: IamGrateful]
X_R_Size Offline
Lurker

Registered: 12/23/09
Posts: 1
Loc: Victoria, BC, Canada
Profile:
Male (early onset) - Caucasian
Eastern European descent (mostly German)
Arthritis runs in family (dad’s side)
HLA-B27 positive

Long story....

My first memories of pain started when I was 13. Interestingly, I can trace things back to Sept of 1981 after a nasty sickness. I remember it well, severe nausea for 7 days, without relief. I couldn’t eat, sleep, drink or even move without instantly vomiting. I was delirious with fever and by the time I was hyperventilating uncontrollably, was moved to a hospital. Thankfully, I didn’t die. The doctors eventually told my mom I was suffering from Gastritis (an infection of the stomach lining). More on the connection later on...

Shortly after my recovery, my back woes began. I had a hard time sleeping the whole night and would wake up with lower back aches that no amount of twisting, turning, flipping and flopping could alleviate. Yet this pain would manifest itself only in bed, then disappear shortly after I got up. Was it a cheap mattress? Poor sleeping posture? Too many pillows? Not enough pillows? Too many sports? Growing pains? Doctors could never tell me, so I thought it was just a “bad back” and lived with it.

As a youth, I was into athletics: track, soccer, football, golf, road & floor hockey (hey.. I’m Canadian after all) but finally settled into competitive badminton as my sport of choice. I got quite good too - but as the years progressed, so did my aches & pains. Never once did I injure myself, yet I was repeatedly forced to live with sharp pains in my hips. This made me limp periodically (or sometime collapse) throughout high school, always one side at a time, then the other. Classmates thought I was either faking or just plain fragile. Not nice.

Moving into young adulthood, harsh pain came and went - seemingly without rhyme or reason. I soon discovered Ibuprofen, which seemed to work well enough that I could tolerate the pain... most of the time. Sleeping on my back with my head propped up seemed to help quite a bit too, so I took to sleeping on the couch (as habitual stomach sleeper, the couch kept me from rolling over). Although, this tactic took a heavy toll on one of my relationships at the time - she didn’t like the idea, but the pain was too much.

But it wasn’t until I turned 21 that I made a new connection. My long-lost father contacted me (he left when I was 5) and it was obvious that Arthritis ruled his life now. So by genetic predisposition, this could be my fate too, as his symptoms seemed to match mine better than most anything else.

This was my first turning point. I did some library research on arthritis (no internet yet.. lol) which suggested I eliminate nightshade vegetables (potatoes, peppers, tomatoes). I also resolved to start hitting the gym religiously to strengthen supporting muscles to better combat the physical effects on my joints. It didn’t take long for the two changes to start reaping benefits. I was in less pain, way less often. However, I wasn’t in total control of my body yet and still couldn’t predict the flaring.

Between 1990 and 2006 I lived with my “arthritis” having regular periods of intense pain and remission. I kept weight training and watching my diet, loading up on Ibuprofen whenever I flared. Various doctor visits over the years proved nothing, even with advances in medicine. Nobody ever had answers. Especially since I had now built up my body and had a strong, muscular, healthy looking physique. New doctors had a hard time believing my story. And various X-Rays of my spine never showed anything - no discs out of place, no fusing - nothing abnormal at all.

However, I have suffered an occasional super-flare... I’d call them “attacks”. Excruciating pain episodes that are frighteningly debilitating. I literally couldn’t get out of bed. In fact, I couldn’t eat, go to the bathroom or even flinch without breaking into a cold sweat from the sharp stabbing sensations in my groin. So overwhelming, I once screamed off and on for 3 days (laughing at the same time - because the pain was so ridiculous). The poor guy who lived in the condo below me.. well, must’ve thought I was some evil, maniacal whack job.

The final turning point came one morning in 2006 - I woke up unable to move my neck. Eating & driving was instantly a major challenge - I couldn’t even put on my socks or tie my shoes! I lived with the pain for a few weeks (thinking I had slept funny or something), but without relief I finally turned to the internet. Thankfully I stumbled upon the KickAS.org forums, AS and the Low/No Starch Diet connection... everything fit! I immediately tried out a NSD and my neck un-seized within just one day. Wow, and my “bad back” magically disappeared too - I couldn’t believe it. I finally had control.

As of this writing, it’s almost 2010, and I haven’t looked back. I simply don’t (or rarely) eat bread, pasta, rice, flour & potatoes. I eat lots of veggies, meat, fruit, seeds & nuts and can tolerate dairy no problem. This diet, as a great side effect, literally forces me into eating healthy - and if I slip up too often, pain always forces me back in line.

Yes, I have had AS for almost 30 years - and will have to follow a LSD/NSD and go to the gym every day for the rest of my life - a small price to pay. Consider the following as of Dec 24th, 2009:

- 41 Years old
- 5’7” 150 lbs
- Single digit body-fat (year round)
- Sprint: 100m in 15 seconds
- Jog: 6 minute mile
- Bench Press: 300 pounds
- Zero spine calcification (last Xray in 2006)
- 99% Pain free
- Living an “optimal” life!

Having spent the last 20 years in the gym and the last 5 years on a LSD I’m living proof that this can really work for many of us who suffer from AS. I encourage anyone who thinks they even “may” have this disorder to try the diet. Your doctor may scoff, but you know your body better than him/her. A fused spine does not have to be in your future and you have nothing to lose. Kick [*bleep*] (Ankylosing Spondylitis Syndrome) now!

P.S. Interestingly, the gastritis I had as a child can be triggered by many autoimmune diseases (tadah... like AS). I had once thought that the gastritis caused my AS (bacteria introduced into the system), but I now suspect it was the other way around.

Pain Progression (over 25 years):
1) Low Back
2) Hips (side to side)
3) Neck

Treatment:
LSD (switch to NSD if pain flares)
Exercise (weight training 6-7 days/wk)
Ibuprofen 400mg (only if needed during pain flare ups) - very rare now

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#372373 - 01/11/10 12:03 AM Re: No/Low Starch Diet Success Stories [Re: bea_arthur_itis]
bea_arthur_itis Offline
Fifth_Degree_AS_Kicker

Registered: 09/01/09
Posts: 389
Loc: TX,USA
update:table sugar is ok for me!! i was still learning,then.I just can't have dairy and almonds frown
_________________________
Trying to keep myself away from me!
On low dose flagyl for over a year,(went on it Jan 2010) found my doc (thanks to John's advice) on roadback.org. I couldn't sustain diet anymore,but thanks to God and flagyl, I forget I have AS most of the time and run every day! smile

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#373773 - 01/21/10 01:36 PM Re: No/Low Starch Diet Success Stories [Re: bea_arthur_itis]
Beef Offline
Member

Registered: 11/23/09
Posts: 27

Hi,

Another success story. I've been on the diet since November last year thanks to this site.

I still have some symptoms each day but there is a huge difference and I have not been doing the very strict version of the diet where you cut out cooked veg and things like vitamin pills with starch.

I might try it strict for a week to see if it is worth going the whole way.

I have tested the diet on three occasions by returning to some starch. Each time I cannot believe how obvious a difference it makes. Yesterday I had a sandwich for lunch and this morning I was really stiff. The time before that when I ate starch for a couple of days it took about a week to feel all the benefits of the diet again.

After a couple of months on the diet I have been able to sleep on my front again which had become too painful. I'm almost embarressed to go to physiotherpy in case they think I am too well.

Thanks everyone,

Jon

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#374844 - 01/30/10 08:22 PM Re: No/Low Starch Diet Success Stories [Re: Beef]
Shane Offline
Fourth_Degree_AS_Kicker

Registered: 08/22/03
Posts: 308
Loc: Auckland New Zealand (but a Br...
I started in October 09 with a little voice in my head saying "it won't work, of course". I don't know why I was so sceptical, but I've had so many people telling me their different remedies for psoriasis and arthritis that I got to tune them all out eventually.

This NSD worked for me. Like the previous post, I'm not as strict as I could be - I haven't had the iodine out for a while and don't worry about pill coating, for example - but I do follow quite closely.

For some reason, a small amount of bread doesn't seem to have negative effects, but any potato and it starts to kick in again.

I'm just waiting to get better again after having some hot chips on my holiday, and perhaps I'll try a little sushi. I do miss sushi.

Essentially though, the benefits have been great. My stomach trouble subsided greatly. My joint pain improved too - I still have a little, but perhaps that is because I'm not strict enough. It's totally manageable though.
_________________________
_______________________________________________________________________

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#378405 - 02/23/10 12:43 PM Re: Hi my name is Tim and I am a NSD success story [Re: Dotyisle]
manju
Unregistered


Hi,

Thank you so much for your story, it has really inspired me to start all over again. My lower & upper back are fused, i had some paing from when i was 25/26 years and diagonised AS in 2007, since then i left everything infact i stopped coming out of my house and my social life, ever thinking why god gave me this, i never deserved it .... what not.

Then i have started with DMARDS - SAAZ 500 tablet 2 times a day for the last 4 months, but never really thought about my eating habits now realise my eating habbits is like a ocean, i eat evertyhing from rice to chocolates to icecream to very very spicy indian foods to onions and pently of Coffee/TEA (each more than 10 cups per day) .... infact i have allergy for the last 4 years 24/7. Now i understnad that food is what i need to concentrate and test to use.

Anyway thanks a lot for all the information you have provided.

Best Regards
Manju

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#411201 - 09/06/10 02:46 PM Re: No/Low Starch Diet Success Stories [Re: earthbound]
LiteHouse Offline
New_Member

Registered: 08/29/10
Posts: 20
Loc: california
Thanx for your awesome story at kick as. I'm inspired and am also looking to overcome this horrible nightmare. Is there anyway I can email you if ii I have any questions about the NSD.I have started almost two weeks now. Thanx
_________________________
"What is life without the challenge, so bring it on."

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#418984 - 11/08/10 07:48 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
JuliaB Offline
Lurker

Registered: 11/07/10
Posts: 1
Hi Everyone,
I'm brand new here but I wanted to share my story. About 5 years ago I had a problem with my back. During the day while I was moving everything was fine. At night, after about 4 hours of sleep, my back would hurt so bad that I could not remain in bed. I would have to get up out of bed, every night for over a year, and try to prop up sideways on the couch hugging a pillow in order to get back to sleep. I was taking Naproxen and that helped some but never gave me complete relief. When I got up to start my day in the morning, it took me around an hour to finally "loosen up" and feel like a normal person. I was only 32 years old but felt like I was 100. I searched the Internet to see if anyone else had symptoms similar to mine and I stumbled across AS. I thought that sounded like way to serious of a problem for me to have and I wasn't about to go to the doctor to get it checked out (I'm one of those stubborn people who don't go to the doctor unless they are dying).
While I was reading about AS, I realized that the symptoms sounded a lot like mine and I had previously suffered a bout of Salmonella poisoning and I read that sometimes that can cause the AS to show up. I read about the Iritis that often goes with AS and I thought that can't be what I have, I've never had a problem with my eyes. Well, a couple of months later, I had iritis.
I did go to the eye doctor and he diagnosed my iritis but couldn't really tell me why it happened. He put me on steroid drops and the iritis finally cleared up.
I got back on the internet and reread what I had read before about AS and realized that I probably had it. Hating to go to doctors like I do, I thought that I would try to do something myself to see if I could help it. I started the next day on a no starch, no sugar diet. I ate only meat, cheese, eggs, and salad. I was willing to try this diet for a week to see if it helped. After 3 days of this, I slept in my own bed all night long for the first time in over a year. I nearly started crying the first morning when I woke up in my bed. I was so happy. I began to realize that maybe this diet was what my body needed to get all of the "bad" bacteria out of my intestines and let the "good" stuff have a chance. I stayed on this diet strictly for about a year and have never had back trouble or iritis again (knock on wood). Another benefit of this diet was that I lost 35 lbs. smile
Eventually, I started adding back some starches and sugar back to my diet. At first I added only the healthy stuff like whole grains and brown rice. I didn't see any problems after this so I started adding back even more. Today, I eat anything I want and have never had another episode of this and I hope I don't. Every so often, just to be on the safe side, I will go on that same diet for a week or two just to get the "bad" stuff out of my system. I don't know if it helps but I figure it can't hurt anything.
I know my symptoms and story are not as severe as most on this site but I told myself that if I could find something that would help me, that I would pass it along just in case there was someone else out there, scared and looking for answers just as I was. Hope this helps someone out!

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#424380 - 12/13/10 02:19 PM Re: No/Low Starch Diet Success Stories [Re: JuliaB]
goztepe2002 Offline
Active_Member

Registered: 12/13/10
Posts: 70
Loc: Houston, TX
Hello all,

I was recently diagnosed with AS after having years of backpain and pain in my hip (Yes, i avoided going to Doctors)I am 27 but i've had the pain in my back and hip for 6-7 years now. Well before i said "That's it!, I'm going to a Doctor" i had a really bad flare in my groin that pretty much kept me in bed for 4 days. I was floored when i found out what AS was and i am the first one in my family as far as we know.

To my surprise my PCP quickly identified my symptoms (morning stiffness that goes away with exercise, chronic back-pain) and referred me to a rhumy, and acute SI and Early onset AS is what i have.

I am on Naproxen 500mg x2 and i feel a little better but my last visit my Rhumy wanted me to start considering Humira as he saw slight changes in my SI joint from the last xray and blood-work regardless of me feeling better than ever before for the last 5 years. My world again was in dark clouds and all i could see was life long of heavy medicine that will lead to other related problems as Anti-TNFs mess with your immune system.

I had a flare again 2 weeks ago which i had to miss work for 2 days and i knew i didn't want to live this life forever this way. I started searching online relentlessly as i knew there had to be other people looking for a cure without getting sucked into pill popping wars or having to inject yourself with chemicals that cost $20K USD per year. That's when i stumbled across KickAS and my god! I think i found my new favorite site. I learned about the NSD here and i have just started it last week. I am still learning all my foods, keeping a log of what i eat and my pain levels and trying to figure out what's good or not for my system.

I feel better already within a week of No starchy foods but i know that might be psychological. I am committed to sticking with this diet and thanks to the users already posted up a list of foods and all the other priceless information about this nasty disorder. I've learned about the iodine test which i will start conducting my own test next week.

I just want to thank to all who are involved in helping us with nothing asked in return and what an unbelievable community this is.

I can only look forward to getting better reading your success stories and doing the things i love to do with my loved ones!



Edited by goztepe2002 (12/13/10 02:23 PM)

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#425228 - 12/19/10 03:09 PM Re: SUCCESS [Re: la_monty]
Just73 Offline
New_Member

Registered: 10/07/10
Posts: 15
I've just started the NSD so wish me well, any further breakfast Lunch and Dinner suggestions as well as whats in this forum would be really helpful thanks. I will miss my potatos and bread big time but I need to reduce my current inflammation and will do anything as it's been driving me mad!its in my lower neck and shoulder area at the moment...which is new to me.

My wife told me to go for a surf yesterday and I thought I'd never be able to paddle out but I gave it a go and it was the best thing I could have done. I felt the cracks and popping in my shoulders and after 45mins of paddling around I felt loose again and better, not great but better, mixed with this NSD I hope works and my body needs a break from the drugs.

Thanks

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#429290 - 01/20/11 11:07 AM Re: SUCCESS [Re: Just73]
Phil1349 Offline
Member

Registered: 11/08/10
Posts: 41
completely cut out potatoes, limited other starch (breads, pasta, rice, etc)

back pain is 99% gone

still have occassional SI joint discomfort (goes away with a few days of healthy eating)
_________________________
• Diag - USpA/AS JUN-10 // HLA-B27+
• Humira started DEC-10, every 2 weeks
• Started Minocycline antibiotic therapy JAN-11
• no/low starch diet started OCT-10
• Natural Supplements: Super Joint Complex, Omega 3, Vitamin D3, Vitamin C, Milk Thistle, Men's Multi, Probiotic Blend, Zyflamend

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#431100 - 02/04/11 10:02 PM Re: SUCCESS [Re: Phil1349]
Sagar Offline
New_Member

Registered: 01/21/11
Posts: 15
Loc: Nepal
Hello Phil,
I want to know since when you are on NSD to get 99% pain control.
_________________________
Sagar

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#432404 - 02/15/11 09:12 AM Re: No/Low Starch Diet Success Stories [Re: Landis]
Chimike Offline
Member

Registered: 12/30/06
Posts: 28
Loc: Illinois, USA
Landis-
I am totally remiss in not visiting the KickAs site more often. I guess it's a testament to the NSD that I've been mostly symptom free for the past three years!
I'm glad my story resounded with your case and that maybe it helped you in some small way. I also believe that the probiotics helped me the most. Perhaps flooding my gut daily with good microbes has helped keep the klebs down. Anyway, that's what my gut tells me.
I hope you're doing well!
Warmest regards,
Chimike

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#432407 - 02/15/11 09:54 AM Re: SUCCESS [Re: Sagar]
Phil1349 Offline
Member

Registered: 11/08/10
Posts: 41
Originally Posted By: Sagar
Hello Phil,
I want to know since when you are on NSD to get 99% pain control.


I started it back in October I want to say ... however I was also exploring many other things to relieve pain around the same time (started humira, epidurals, natural supplements, antibiotic therapy).

I am not sure 100% now if the LSD is what helped me, but I haven't eaten many potatoes since then and my morning back pain has been gone. If the epidural is what alleviated my pain, then the pain should come back in about 6 months, June of this year. I do not think the humira had anything to do with it because My pain was gone before I started it.

Anyway, my morning back pain and stiffness are gone. I still have some minor joint discomfort in the morning occasionally. I am thankful for every weekend that I can sleep in now. No more waking up at 4:30am and struggling to get to the shower or bath, then back to bed for hopefully an hour more of sleep ... no more 4-5 hours of sleep a night. I now can sleep 10-12 hours on the weekend, and I take full advantage of it ... I love sleep now grin sleep ... I missed out on so much sleep last year and it was making me a miserable person, I am so thankful for the ability to sleep in now, I don't think my wife is so thankful though because I sleep half my weekends away.

I hope everyone with USpA & AS can find relief. This summer was horrible for me, it took many months for me to grasp the thought that I may never be able to rest again like I wanted to for the rest of my life. I feel that the LSD/NSD had some positive affect on my change in well being, but I also think that starting the probiotics had something to do with it too. My gut feels in a much better state now compared to last summer.

So, I urge anyone who is trying the NSD to also take probiotics. Also, if you can find a doctor to perscribe minocin, I recommend that too. I am only a month in to antibiotic therapy, and won't know for many more months if it is working or not, have not had any blood work done yet to show results.
_________________________
• Diag - USpA/AS JUN-10 // HLA-B27+
• Humira started DEC-10, every 2 weeks
• Started Minocycline antibiotic therapy JAN-11
• no/low starch diet started OCT-10
• Natural Supplements: Super Joint Complex, Omega 3, Vitamin D3, Vitamin C, Milk Thistle, Men's Multi, Probiotic Blend, Zyflamend

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#432413 - 02/15/11 10:44 AM Re: SUCCESS [Re: Phil1349]
Phil1349 Offline
Member

Registered: 11/08/10
Posts: 41
Another thing worth mentioning, my back pain and stiffness went away when I STOPPED taking NSAIDs. I think this is another treatment that is mis-perscribed for AS initially. My thoughts are that since AS is so closely related to gut health, and NSAIDs are bad for the GI system, that NSAIDs accelerate progression of the disease. I have taken only a few NSAIDs since October (as in 1 or 2 pills) when needed after injury.

It was very difficult the first few weeks to stop taking them, but I managed with muscle relaxers and pain killers. Once you start to balance out your gut health with NSD/LSD and probiotics, the NSAIDs no longer become necessary in my opinion.
_________________________
• Diag - USpA/AS JUN-10 // HLA-B27+
• Humira started DEC-10, every 2 weeks
• Started Minocycline antibiotic therapy JAN-11
• no/low starch diet started OCT-10
• Natural Supplements: Super Joint Complex, Omega 3, Vitamin D3, Vitamin C, Milk Thistle, Men's Multi, Probiotic Blend, Zyflamend

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#432415 - 02/15/11 11:14 AM Re: SUCCESS [Re: Phil1349]
Phil1349 Offline
Member

Registered: 11/08/10
Posts: 41
and here is how I discovered starches, namely potatoes, were bad news for me and how one days worth of meals changed my life:

One Sunday this summer, I ate the following meals:
breakfast :: eggs, sausage, hash browns
lunch :: cheese burger, fries
dinner :: I was craving breakfast again so I ate more eggs, sausage, and hash browns
snacks :: probably more starches

Monday morning, woke up in the worst pain in my life. I've broken bones before, and been scraped up pretty bad (road rash from falling off a bike at 45 mph) ... and this was nothing compared to it. It was a deep down pain starting in my tailbone and eminating up through my spine, in every single rib. I wanted to be done living.

From that point on I knew I need to make changes in my life. That day I continued researching AS, reading more and more about the NSD. Not sure what clicked finally, but from that day on I started eliminating foods, first was potatoes. After a week or 2 of no potatoes, I started taking away other starchy foods, and substituting fruit, vegetables, and lean meat/fish/chicken. I started feeling better. A month went by, still doing better ... 2, then 3 months ... and I feel "good"

There are other message boards for AS where people aren't so receptive to diet changes, doctors and rheumatologists tell me that diet should have no effect DESPITE my question to my rheumatologist about humira being for Chron's and AS.
_________________________
• Diag - USpA/AS JUN-10 // HLA-B27+
• Humira started DEC-10, every 2 weeks
• Started Minocycline antibiotic therapy JAN-11
• no/low starch diet started OCT-10
• Natural Supplements: Super Joint Complex, Omega 3, Vitamin D3, Vitamin C, Milk Thistle, Men's Multi, Probiotic Blend, Zyflamend

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#432927 - 02/20/11 09:50 AM Re: SUCCESS [Re: Phil1349]
Sagar Offline
New_Member

Registered: 01/21/11
Posts: 15
Loc: Nepal
Thanks Phil 1349 for your encouraging answer. I have started NSD and it is really difficult to get enough food when excluded starch food . I hope I will manage it.
_________________________
Sagar

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#433010 - 02/20/11 10:48 PM Re: No/Low Starch Diet Success Stories [Re: bea_arthur_itis]
Jorgensen Offline
Apprentice_AS_Kicker

Registered: 07/01/08
Posts: 78
Loc: Southern California
Great story. Thanks. In your post you mentioned that you 'did a culture on yourself and found your klebs were high'. Is that something anybody can do or do you have access to a lab?
_________________________


"This is the Day the Lord has made, let us rejoice and be glad in it."

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#433011 - 02/20/11 10:50 PM Re: No/Low Starch Diet Success Stories [Re: bea_arthur_itis]
Jorgensen Offline
Apprentice_AS_Kicker

Registered: 07/01/08
Posts: 78
Loc: Southern California
Great story....you mentioned that you did a culture on yourself to check for kleb levels...is that something anyone can do?
_________________________


"This is the Day the Lord has made, let us rejoice and be glad in it."

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#435174 - 03/10/11 02:18 PM Re: No/Low Starch Diet Success Stories [Re: Jorgensen]
james_rydell Offline
Lurker

Registered: 12/20/10
Posts: 1
I started the NSD 12/20/10, and saw improvement from the pain within 3-4 days. I was diagnosed with pre-AS in 6/2010. By December it was affecting almost my entire body. Today, I almost feel normal again. I still take the sulfasalazine, and a couple of Ibuprofin twice a day, but there is no doubt in my mind the NSD strictly done is very beneficial. I discovered it on this sight, thanks to my daughter and wife. It has helped me regain my life again.

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#435755 - 03/15/11 11:01 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
Leonila Offline
Member

Registered: 04/11/09
Posts: 45
Loc: UK
So this is something that I owe to the site since a while. Started NSD in October 2008, after being diagnosed for AS in July 2008 (following some 5 years of occasional pain which I managed with pain killers). Stopped all pain-killers and refused to take any other AS-specific medication. Am mostly pain-free since then - often for months. Relaxed my diet in terms of starch intake (occasionally eat rice and buckwheat), from time to time need to avoid some non-starchy food (at the moment am careful with tomatoes, bell peppers, beer and wine). Dealing with flare-ups by drinking ginger tea, flaxseed oil, fasting if nothing else helps. Generally, am watching out for the signals my body sends me and modifying my diet if necessary. Feeling blessed to have found the site and happy that the doctor who diagnosed me was such a complete [*bleep*] that he made me resolute to find an alternative solution smile.

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#436840 - 03/25/11 09:37 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
bobc Offline
Second_Degree_AS_Kicker

Registered: 05/09/06
Posts: 206
Loc: Broomfield, Colorado
I was just back for a quick visit to kickas and could not believe that I haven't posted my NSD success story here. I was reading Tim's intro post where he says that many folks come here, learn the diet, and then leave after having success, and I thought to myself, "man, that is selfish...I wish those people would share their stories...". Well, I'm one of those people!

I've had terrific success with the NSD and I owe all of you here on kickas a huge 'thank you', a big hug, a million dollars, whatever. I've got my life back and am living pretty much pain free due to this diet.

I found KickAs.org within a few weeks of getting my AS diagnosis and it was a life saver. KickAs is the greatest online community of AS suffers in the world. I immediately started experimenting with the LSD (didn't work) and transitioned into the NSD (worked after 18months of experimenting). It took me several years of experimenting before I got things really dialed in, but I'm finally familiar enough with this way of life that I'm completely off my meds and pain free. I'm hoping that by sharing my experiences with this diet that I can save you some of the pain and confusion I went through along the way. Because the truth is that this "cure" is quit simple. You just need to try it yourself.

My Story

The bad news is that I was diagnosed with ankylosing spondylitis about 5 years ago (2006) which is an (supposedly) incurable autoimmune genetic disorder. As my doctor told me at that time, "It's something you'll die with, but not from." If that's not a turd wrapped in a ribbon then I don't know what is.

After 5 years of tweaking the NSD I'm currently symptom-free 100% of the time, cured. I know "cured" is a strong word, but what do you call it when you don't have symptoms any more? I call it cured. I am here to tell you that if you have ankylosing spondylitis (or a host of other related auto-immune and inflammatory diseases) then you MAY be able to cure yourself with diet alone.

No kidding.

Like most of you, I suffered undiagnosed for about 12 years. Chronic, massive, debilitating pain from out of nowhere would strike, seemingly at random, for years. My pain would normally last for several weeks to a couple of months and then it would go away juuuust long enough for me to forget how terrible it was...and then, just when I'd slipped back into my normal life, it'd strike again.

My flares defined my life. I was literally living from flare to flare. More like I was living between flares and just hanging on during them.

During a typical flare I could look forward to the following:

* Intense mid-back, hip, and rib pain.
* "Rolling" out of bed. It would sometimes take me 10 minutes just to slowly work my way onto my side, get my arms underneath me, slowly push first one leg and then the other off of the bed, then use my arms to push myself into a sitting position- or, if the flare was especially bad I would literally flop onto the floor and use the bed to stand up.
* No sneezing. No kidding. I could go months without sneezing. Every time I would start to sneeze my body would cut it off mid-sneeze due to the intense pain in my ribs caused by the sudden chest expansion during that quick, pre-sneeze deep in-breath. I've likely got a few fusions of my ribs and it literally felt like my ribs were breaking when I'd sneeze. I once broke my collar bone and several ribs after a car accident so I know exactly what broken ribs feel like, and sneezing gave me the same feeling. I recall "waking up" on the floor a couple of times after blacking out for 2 or 3 seconds during a sneeze. Doesn't that sound fun;-) ?
* Getting stuck while dressing. That sounds weird, right? But I would constantly get stuck as I was putting on my pants. I'd have to bend down while holding on to a dresser or the bed and try to lasso my foot into my pants like a crippled cowboy. At some point during this process my hips would occasionally say "enough!" and they'd just lock up. It would almost feel like one of my hips was popping out of the socket (during my undiagnosed years I went to doctor after doctor explaining how I must have dislocated a hip while trail running years ago and that it would occasionally pop out again causing severe pain. Of course they all thought I was crazy and that the pain was just in my head. Nothing worse than being in pain and being told it's all in your head, huh?) and I'd just hang there half-pants-less, and wait for the pain to pass.
* Getting in a car didn't work. Try getting in your car while keeping your spine perfectly straight. Hard, right?
* Sleep was elusive. I didn't realize how much I got up during the night until I got married and my wife pointed out that I got up a good dozen times every night. I'd just gotten used to not really sleeping and having to get up every few minutes or hours due to the bedsore-like pain in my back caused by laying down. Pretty lame when sleeping hurts!

So you get the idea. I've gone from being in pain most of the time to being 100% pain-free without drugs or painkillers ("natural" or otherwise) and am completely convinced that my diet is the key.

My Diet

I started experimenting with diet almost immediately after getting my diagnosis. Drugs and I don't get along too well, and so the powerful NSAIDS I was taking were impacting both my mental and physical state. They were helping with the pain, but at what price?

What I Eat
Grassfed meat
Bacon
Eggs
Tons of leafy greens
Other green veggies
Nuts: macadamia, walnuts, almonds
Fish, fowl, game, shellfish
Coconut oi, olive oil

Without getting into too much detail, I basically eat a high-fat, high-protein, very, very low-carb diet. I used the free calculator at www.fitday.com to calculate my macro nutrient profile and found that I eat at least 55% to 65% of my calories every day from Fat, around 20-25% from Protein, and usually less than 10% from Carbs.

The amazing thing about such a high fat diet (aside from the fact that I don't have flares any more) is that I've lost weight. My belly fat has started to melt away. Totally worth reading the Gary Taubes book listed below if you haven't already.

Since finding kickas I have become completely obsessed with diet and ancestral nutrition. Some books I love:

The Paleo Diet, by Dr. Loren Cordain
The Paleo Solution, by Robb Wolf
The Primal Blueprint, by Mark Sisson
Why We Get Fat: And What To Do About It, by Gary Taubes
Good Calories, Bad Calories, by Gary Taubes
Protein Power, by Dr. Michael Eades
The Vegetarian Myth, by Lierre Kieth

And here is a really good recipe websites:

Foodee, go to: http://www.thefoodee.com/blog/2011/03/03/discover-something-delicious/

The Foodee website is a really cool tool that even helps you print out a shopping list.

Paleo/Primal and the NSD
I think the Paleo movement is a huge help to all of us trying to live a no starch lifestyle. There are literally thousands of websites devoted to recipes that can be tweaked just a tiny little bit in order to be NSD-compliant.

Anyway, hope this helps.

Best of luck to everyone, and thanks so much to the entire kickas community!
_________________________
Get busy living! www.sickopportunity.com
Bob Connors

Me and my girls

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#438963 - 04/09/11 02:41 PM Re: No/Low Starch Diet Success Stories [Re: bobc]
Jorgensen Offline
Apprentice_AS_Kicker

Registered: 07/01/08
Posts: 78
Loc: Southern California
I am so thankful today. I get to write my own success story.

First of all, thank you to everyone on this site who has helped me along this journey as I continue it. I, like many here, was lost and looking for help when I stumbled upon my fellow AS-kickers. Thank you to all of you who give your time and energy to help others. May God bless you. We need each other. AND, a big thank you to Professor Ebringer and his team.

For me it started with shoulder pain in June of 2007. I was 45 years old and pretty active. My first thought was that I had pain from my golf swing. It's not a pretty sight. My primary care Dr. Richard Ellis of Kaiser Permanente prescribed Motrin and rest. Over the next few weeks, the pain intensifed so that it was difficult to sleep. Then, it progressed to the point that I had a hard time combing my hair and putting on a shirt. Pain and stiffness in my neck was next. I noticed the pain subsided after taking a warm shower and getting on with the day. Over the next 4 months I continued taking Motrin 800mg 3 times a day, received a cortisone shot in both shoulders, was getting prepared for shoulder surgery, started taking predisone and was in quite a bit of pain. Fortunately, Dr. Richard Ellis has a suspicion about my symptoms and gave me a blood test that showed I was positive for the HLA-B27 marker. Next, he sent me to the Rheumotologist.

When I was told I have Ankylosing Spondilytis I was disappointed. I was prescribed more predisone, methotrexate and more Motrin 800mg. I started doing my own research and found www.kickas.org and Professor Ebringer's research.

I read up on the website and did some changes in my diet but not enough to get results. At the same time I started giving myself Enbrel injections which took away all the pain. I was using Enbrel once a week, as prescribed, until I eventually only needed it once a month and my Rheumatologist was fine with this.

During this time I continued to research the No Starch Diet/Low Starch Diet other diets; "The Maker's Diet", "The Hallelujah Diet", "Atkins Diet", the "No Night Shade Vegetables Diet" and also had some first hand experience from an acquaintance who had severe A.S. in his twenties than found life-long relief through diet based on Fruits, Vegetables, Nuts, and Whole Wheat foods, which for him was based on the Seventh Day Adventist Bible based diet which is a vegetarian diet.

We are like walking laboratories. We research and then we experiment to find out what works for us. Thankfully we have enough similarities that we can find common ground and encourage one another with hope and ideas. I am currently reading Carol Sinclair's "The IBS Low-Starch Diet" book and finding much comfort in knowing that others have the same ups and downs that I do. I think I read a quote here at Kickas.org, from John "Dragonslayer", who responded to one of my questions early on, and said "your pain will train you." How true that is. I have carried that with me. I finally got sick of injecting myself with Enbrel and its potential side-effects and decided to follow the research and advice and change my diet. With Enbrel, and other biologics, it's a love/hate relationship. I'm thankful for the pain relief but I don't want to risk the side-effects.

It has been over 100 days since I used Enbrel and I am feeling great! Wow! That felt good to write. I am cautiously optimistic. I am an ASKicker!!! I am not going to let this thing beat me. I have eliminated potatoes as they cause the most problems for me. I have been able to get by on a Low Starch Diet. I am eating those good fruits I used to avoid. I am eating tasty green vegetables I used to not like. I enjoy eating all the best meats. I can eat whole wheat bread (I make it at home), brown rice (on occasion) and whole wheat pasta (also, limited). If I have a flare up, I change what I am eating. I feel it in my hands and shoulders at night if I have made some poor choices with my food. I exercise 3-4 times a week and that seems to help as well.

Thanks again. The journey continues for all of us. One day at a time is actually a good way to live.


Edited by Jorgensen (04/09/11 10:15 PM)
_________________________


"This is the Day the Lord has made, let us rejoice and be glad in it."

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#445815 - 06/27/11 10:26 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
winston67 Offline
New_Member

Registered: 04/24/11
Posts: 2
I've tried the no starch diet and got maybe 5-10 percent reduction in pain/stiffness. I really want way more than that. I decided to try that edgar cayce apple fast for 3 days. I didn't feel any better. I had to take some tramadol during the fast because I had terrbile head pain...and almost threw up on the last day after I took the half a cup of olive oil. What am I doing wrong here? I thought the apple fast would give me a good starting point. I really want this diet stuff to work but I feel like I'm chasing my tail. Should I try the elimination diet where I eat only fruits vegetables and meat (no dairy, no starch, no sugar) but then I wonder why didn't the apple fast work...is it because there's too much sugar in the apples and I was reacting to that? Anybody got any feedback?

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#445828 - 06/27/11 01:30 PM Re: SUCCESS [Re: la_monty]
Truth Offline
Member

Registered: 06/03/11
Posts: 35
Is it Okay if I have small amounts of starchy food as a treat? What are the consequenses?
Also, how can I tell if I need no sugar?
I've been on this no starch diet for two months now, and I still am having problems with this diet. I have good days with very little pain, and I have horrible days with terrible pain and locking up of knees. I took a shot of enbrel the other day because the pain was so terrible, but that was a little less than a month ago. I know the NSD takes time, but is there any way I can speed this up? I'm at a very low weight for my height,(almost unhealthy) I can't afford to lose any weight, so fasts are virtually not an option. Is there anything I can eat to gain a little weight on the NSD?

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#445839 - 06/27/11 04:01 PM Re: SUCCESS [Re: Truth]
keit_nufc1 Offline
Second_Degree_AS_Kicker

Registered: 12/12/09
Posts: 221
Loc: Australia
My suggestion is this:-

Try the paleo auto immune protocol

No nuts, seeds, nightshades, sugar, eggs, starch or dairy.

If you don't notice a difference after a few weeks then repost and have a rethink.

This worked well for me. Eat lots of protein, fats and greens. I was never hungry on this, I just kept eating more meat and fish.

Good luck.


Edited by keit_nufc1 (06/27/11 04:02 PM)

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#445851 - 06/27/11 06:43 PM Re: No/Low Starch Diet Success Stories [Re: winston67]
DragonSlayer Offline
AS Czar

Registered: 09/05/01
Posts: 5989
Loc: Reno or SFLU Philippines


WELCOME, winston67:

Cayce said that sometimes the apple regimen needed to be repeated for the beneficial effects, and suggested to one person that if "seemed" to fail because he had been working too hard during the diet; it is a time to slow down a bit, and especially de-stress.

The thing with natural cures for this chronic disease is that they work slowly, just like the disease comes on, and not everyone reacts the same way to fasting, for example. Even antibiotics that will reduce symptoms most of the time, can sometimes even increase symptoms--not due to the "Herx" effect, but just because they strip away mucosa and can increase permittivity.

There are explanations for everything but these are sometimes not very obvious.

Sugar from apples can be a problem in severe candidiasis and this condition can explain extended-onset of AS; so many people with AS do have this fungal overgrowth, but it is difficult to say which came on first.

It really is sometimes very difficult to "make the diet work" for us. And water-only fasting is hard, but sometimes one of the only ways to break the cycles.

Cleansings, chelation, elimination diets, etc; these can all help, but it is sometimes not in any overt or obvious way; a lot depends upon our starting point and our perceptive abilities (NSAIDs will totally wipe this out).

I know You are on the right track, and just need a little encouragement--I have been down that same line many times and it requires patience and perseverance; we all have to pay our dues.

HEALTH,
John
_________________________
Important AS Resources

Professor Ebringer: On Diet and AS;


RED ARROW --> Philippines

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#445948 - 06/28/11 03:16 PM Re: No/Low Starch Diet Success Stories [Re: DragonSlayer]
winston67 Offline
New_Member

Registered: 04/24/11
Posts: 2
Thanks DragonSlayer. I'll just keep trying. I was getting really down there for a bit.

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#448856 - 08/06/11 08:48 PM Re: SUCCESS [Re: la_monty]
matthiasC Offline
New_Member

Registered: 08/03/11
Posts: 5
Loc: Cambridge, MA

My name is Matt. I live in Cambridge, Massachusetts. I'm really grateful to everyone who wrote about their experience on this site, as well as to Bob Connors whose site Sick Opportunity really inspired me.

When I was a junior in college in the northeast, I was rowing on the crew team and had a fall cross country skiing. These two data points constituted the red herrings that put the doctors off the scent for a few months, when I came in with acute back pain, until I got my ankylosing spondalitis diagnosis at a Harvard teaching hospital in Boston. I have never had anything but first-rate care, for which I am extremely grateful.

I took Naprosin for some time until Embrel came along. Before it did, toward the end of my time on Naprosin, I walked with my head glued directly to my shoulders like the tall guy in the Adams Family, and found it at times a bit much to take. It got me down. Enbrel, though, changed that, and I wasn’t Lurch anymore. I could get back into running and even swimming.

I still had to sleep with a bevy of pillows, and would catch my posture fleetingly and obliquely in reflecting surfaces, and be disappointed. I got Iritis. I often felt stooped over and weighed down, and could not ride a bike due to the difficulty of looking around in traffic. And of course, as others before me have pointed out, a burlesque fact worthy only of tragedy-comedy: I could not sneeze.

I considered all this par for the course, and did not have high expectations. I just was pleased that the pain was not excruciating 24/7, and I guess that other than that my karma was one of passive acceptance of my fate. I had become very Buddhist about suffering over the years, and more than a little resigned to life being less than one might have hoped.

That was before zucchini changed my life. I have to admit that zucchini had never been high on my list. In fact, it was very low, and while I was growing up, there was always much too much zucchini growing in our garden, and the desserts my mom would make from zucchini never completely disguised the fact that it was a big, green squash -- not dessert.

But then, in the subtle way that important things happen, I came to love zucchini, in much the same way that better men before me have come to stop worrying and love the bomb. OK, I’m joking about loving the bomb. But serious about zucchini, and other things like avocado, tuna, salmon, Greek yogurt and fresh berries, all of which were high on my list, even back in the day -- when baguettes were atop the list, me having spent some of my youth in France, et voilà. Zucchini meatloaf, zucchini fritters.

I know there is no generally accepted proof in the medical community, and I am just one person. My story will be necessarily and by definition anecdotal. But I am extreme, so when I decided to undertake a change in diet, I did so 100%. I’ve got that discipline, and a certain deep desire to exit the hospital predicament. The notion of real change being possible really whetted my appetite. So on August 2, 2011 I went no starch.

Granted, that is exactly four days ago. And I have been able to sleep a little longer on the weekend, without being chased from bed by that wild fire in the rib cage. It feels nice to linger a little, in that drowsy margin where pleasant thoughts mingle like dreams with the shadows and dappled sunshine outside the window.

Generally I am bookish but rugged, and definitely not the sort of person that is always complicating dinner parties with the latest alimentary regime they have discovered. But I can bring my total Greek yogurt and berries along, when the others are all embracing pizza.

Spondalitis is a grindstone tethered to your neck. If you thought someone was going to clobber you from behind, your upper back, shoulders and neck would stiffen, right? But what about being like that all the time, even when not at imminent risk of being clobbered? (Just because your paranoid doesn’t meant they’re not after you.) And that’s with Enbrel.

I’m really glad that people have gone online to write about this because it's easy -- at least for me -- to be in denial about the disease. Everyone’s got back pain, right?

Enbrel is a passive response. I used to want to close the shades when I shot it into my leg once a week, so the neighbors wouldn’t call the narcotics squad. It feels like heroin. When the pain in living is enough, out comes the needle. There is a despair to it, when you relish the pain the needle makes breaking the skin as trivial by comparison.

Enbrel was good enough until recently a local tick gave me Lyme Disease. Off Enbrel for two weeks to take the course of antibiotics, I had spondylitis pain like a medieval rack. My attention riveted toward AS, and I did some internet research, became aware of new things, engaged by the possibility of achieving a condition that was better than “good enough.”

So all this information about diet and the scientific theories behind it is new to me. I am trying to apply it in useful ways beyond my plans some day to obtain a snow-white standard poodle and name it Klebsiella.

It’s nice to be active in finding a solution. The body is not at war with you, it’s just confused. If it needs help eliminating a conflict -- a bacteria that ails it -- shouldn’t you help? Wouldn’t you help any friend in that way?

Stupidly enough, and perhaps like al those folks who impose on the dinner menu at the last moment with an alimentary curve ball, it makes me feel special to have a special diet. Swimming, stretching an other exercise ask something from my body (for its own good). But these foods are a special gift I can prepare, asking nothing in return. Cauliflower soufflé with cheese.

A friend of mine got hepatitis A this summer from eating shellfish. According to Wiki, the symptoms are “malaise.” Ditto for spondalitis, no? It’s just one big mal du siècle.

I have often described the disease like the feeling that someone was pushing your head from behind. It is nice to think that is may not be the hand of God pushing it, but just some baker or pastaman -- some acne-scoured pizza delivery boy you could have taught a lesson to long ago.

I wish I had know about this long ago, as I would have started much earlier. I learned about it last week, and embraced it. I have been thinking why I might have made another choice, and not embraced it. If I did that, I think the reasons would have been psychological. I have to think about this, because I am sure there will be times in the future I think of relinquishing this diet.

Probably the main reason not to try this starch-free lifestyle is a psychological one. If it actually does work, that opens up a host of other questions. Not least: why didn’t I do this long ago. Regret gets you exactly nowhere, and some experiences feed regret more powerfully than others.

Not to mention questions about the medical order in which one is, in every sense of the word, invested.

It also implies a responsibility. I am in fact part of the issue. It’s not just happening to me, but also through my own agency. I need to be accountable for the food with which I nourish myself, and assess its impact on this disease. I am the one doing this to my body.

But I see littler reason not to try it. Like I said, I think from the recent silence in my bones, that my body is not adverse to this.

Why wouldn’t I try it? If it turns out that I miss the old familiar pain like some Kurt Cobain or Elliot Smith song, I can always go back to the “gourmet” pizza.

Wouldn’t it be nice, in any case? The fountain of youth isn’t drink after all, but food. Or more precisely, not food.

Extremism by temperament, tempered by experience, optimally results in a certain realism. Despite my hyperbole about Ponce de León foraging in Florida for the youth fountain, I’m not looking for miracle grow here.

Instead, I am seeking a big picture that includes exercise, physical therapy, therapeutic medicine and diet. If diet can play a positive, albeit incremental, role in my spine’s wellbeing, then it is welcome at my table.

Thank you to all the inspiring people on this site!

Top
#448858 - 08/06/11 09:09 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
matthiasC Offline
New_Member

Registered: 08/03/11
Posts: 5
Loc: Cambridge, MA
Hi. My name is Matt. I live in Cambridge, Massachusetts.

When I was a junior in college in the northeast, I was rowing on the crew team and had a fall cross country skiing. These two data points constituted the red herrings that put the doctors off the scent for a few months, when I came in with acute back pain, until I got my ankylosing spondalitis diagnosis at a Harvard teaching hospital in Boston. I have never had anything but first-rate care, for which I am extremely grateful.

I took Naprosin for some time until Embrel came along. Before it did, toward the end of my time on Naprosin, I walked with my head glued directly to my shoulders like the tall guy in the Adams Family, and found it at times a bit much to take. It got me down. Enbrel, though, changed that, and I wasn’t Lurch anymore. I could get back into running and even swimming.

I still had to sleep with a bevy of pillows, and would catch my posture fleetingly and obliquely in reflecting surfaces, and be disappointed. I got Iritis. I often felt stooped over and weighed down, and could not ride a bike due to the difficulty of looking around in traffic. And of course, as others before me have pointed out, a burlesque fact worthy only of tragedy-comedy: I could not sneeze.

I considered all this par for the course, and did not have high expectations. I just was pleased that the pain was not excruciating 24/7, and I guess that other than that my karma was one of passive acceptance of my fate. I had become very Buddhist about suffering over the years, and more than a little resigned to life being less than one might have hoped.

That was before zucchini changed my life. I have to admit that zucchini had never been high on my list. In fact, it was very low, and while I was growing up, there was always much too much zucchini growing in our garden, and the desserts my mom would make from zucchini never completely disguised the fact that it was a big, green squash -- not dessert.

But then, in the subtle way that important things happen, I came to love zucchini, in much the same way that better men before me have come to stop worrying and love the bomb. OK, I’m joking about loving the bomb. But serious about zucchini, and other things like avocado, tuna, salmon, Greek yogurt and fresh berries, all of which were high on my list, even back in the day -- when baguettes were atop the list, me having spent some of my youth in France, et voilà. Zucchini meatloaf, zucchini fritters.

I know there is no generally accepted proof in the medical community, and I am just one person. My story will be necessarily and by definition anecdotal. But I am extreme, so when I decided to undertake a change in diet, I did so 100%. I’ve got that discipline, and a certain deep desire to exit the hospital predicament. The notion of real change being possible really whetted my appetite. So on August 2, 2011 I went no starch.

Granted, that is exactly four days ago. And I have been able to sleep a little longer on the weekend, without being chased from bed by that wild fire in the rib cage. It feels nice to linger a little, in that drowsy margin where pleasant thoughts mingle like dreams with the shadows and dappled sunshine outside the window.

Generally I am bookish but rugged, and definitely not the sort of person that is always complicating dinner parties with the latest alimentary regime they have discovered. But I can bring my total Greek yogurt and berries along, when the others are all embracing pizza.

Spondalitis is a grindstone tethered to your neck. If you thought someone was going to clobber you from behind, your upper back, shoulders and neck would stiffen, right? But what about being like that all the time, even when not at imminent risk of being clobbered? (Just because your paranoid doesn’t meant they’re not after you.) And that’s with Enbrel.

I’m really grateful to everyone on this site, and to Bob Connors who started the blog Sick Opportunity, because it’s too easy -- at least for me -- to be in denial about the disease. Everyone’s got back pain, right?

Enbrel is a passive response. I used to want to close the shades when I shot it into my leg once a week, so the neighbors wouldn’t call the narcotics squad. It feels like heroin. When the pain in living is enough, out comes the needle. There is a despair to it, when you relish the pain the needle makes breaking the skin as trivial by comparison.

Enbrel was good enough until recently a local tick gave me Lyme Disease. Off Enbrel for two weeks to take the course of antibiotics, I had spondylitis pain like a medieval rack. My attention riveted toward AS, and I did some internet research, became aware of new things, engaged by the possibility of achieving a condition that was better than “good enough.”

So all this information about diet and the scientific theories behind it is new to me. I am trying to apply it in useful ways beyond my plans some day to obtain a snow-white standard poodle and name it Klebsiella.

It’s nice to be active in finding a solution. The body is not at war with you, it’s just confused. If it needs help eliminating a conflict -- a bacteria that ails it -- shouldn’t you help? Wouldn’t you help any friend in that way?

Stupidly enough, and perhaps like al those folks who impose on the dinner menu at the last moment with an alimentary curve ball, it makes me feel special to have a special diet. Swimming, stretching an other exercise ask something from my body (for its own good). But these foods are a special gift I can prepare, asking nothing in return. Cauliflower soufflé with cheese.

A friend of mine got hepatitis A this summer from eating shellfish. According to Wiki, the symptoms are “malaise.” Ditto for spondalitis, no? It’s just one big mal du siècle.

I have often described the disease like the feeling that someone was pushing your head from behind. It is nice to think that is may not be the hand of God pushing it, but just some baker or pastaman -- some acne-scoured pizza delivery boy you could have taught a lesson to long ago.

I wish I had know about this long ago, as I would have started much earlier. I learned about it last week, and embraced it. I have been thinking why I might have made another choice, and not embraced it. If I did that, I think the reasons would have been psychological. I have to think about this, because I am sure there will be times in the future I think of relinquishing this diet.

Probably the main reason not to try this starch-free lifestyle is a psychological one. If it actually does work, that opens up a host of other questions. Not least: why didn’t I do this long ago. Regret gets you exactly nowhere, and some experiences feed regret more powerfully than others.

Not to mention questions about the medical order in which one is, in every sense of the word, invested.

It also implies a responsibility. I am in fact part of the issue. It’s not just happening to me, but also through my own agency. I need to be accountable for the food with which I nourish myself, and assess its impact on this disease. I am the one doing this to my body.

But I see littler reason not to try it. Like I said, I think from the recent silence in my bones, that my body is not adverse to this.

Why wouldn’t I try it? If it turns out that I miss the old familiar pain like some Kurt Cobain or Elliot Smith song, I can always go back to the “gourmet” pizza.

Wouldn’t it be nice, in any case? The fountain of youth isn’t drink after all, but food. Or more precisely, not food.

Extremism by temperament, tempered by experience, optimally results in a certain realism. Despite my hyperbole about Ponce de León foraging in Florida for the youth fountain, I’m not looking for miracle grow here.

Instead, I am seeking a big picture that includes exercise, physical therapy, therapeutic medicine and diet. If diet can play a positive, albeit incremental, role in my spine’s wellbeing, then it is welcome at my table.

Thank you to all of you on this site who inspire by your example!

Top
#449481 - 08/13/11 08:36 AM Re: No/Low Starch Diet Success Stories [Re: matthiasC]
Missy123 Offline
New_Member

Registered: 05/28/11
Posts: 7
Loc: United States
I had lung congestion for nine months, during which time I was hospitalized twice. Nothing relieved the congestion, and it got bad enough that it was causing heart palpations. I tried the AS low startch diet from this web site. In four days the congestion went away. When I don't do the diet it comes back (and my inflammation rebounds). When I do the diet, it goes away. I'm sold. It also helps my inflammation.

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#449488 - 08/13/11 10:45 AM Re: No/Low Starch Diet Success Stories [Re: Missy123]
matthiasC Offline
New_Member

Registered: 08/03/11
Posts: 5
Loc: Cambridge, MA
Just wanted to corroborate the good spirit here on this site with a little research I anecdotally did.

Several of my friends are in medicine. I have spoken to three of them about the diet, and we have reviewed the medical literature concerning it. All are highly credentialed - one is a hematologist-oncologist who researches cancer in the blood at the leading hospital in Boston and teaches on the Harvard Medical faculty, the second is a biochemist and director at the prominent biotech in Boston and the third is a clinical neurologist-oncologist at another area hospital who also trained at Harvard.

I asked each to point out any flaws in the science and anything in the reasoning that appears ridiculous. They all -- especially the biochemist -- said the reasoning is sound and the science is plausible. They said that from what they can see, there has been an inadequate amount of research to prove the science, and it remains conjectural. There is just not enough funding for research.

My personal concern is that AS is the stepchild of arthritis, and what resources are available go to the study of osteoarthritis, rheumatoid arthritis and so forth, with the theory that what is good for the goose is good for the gander, which may not at all be the case, as AS seems to have its own etiology and to link up with IBS and uveitis in ways that osteoarthritis and rheumatoid arthritis do not. AS may well be an autoimmune disease, but in my view it may not be comfortably categorized together with other arthritis at all.

Arthritis (inflammation of the joints) may well be a symptom of several distinct disorders, though the cause of none. Diseases, in my view, should be categorized at the level of the cause, not the symptom. If klebsiella causes both IBS and AS, but not osteoarthritis or RA, then AS and IBS should be grouped as a medical specialty and research made into curing their cause.

Your finger can hurt because you got stung by a hornet or because you hit it with a hammer, but hornets and hammers should not be studied together just because both make the finger hurt!

One of my concerns about drugs that work for AS as well as other forms of “arthritis” is that they are necessarily addressing only the symptom, not the root cause.

In any case -- back to the opinions of the three professionals I spoke to! One of the doctors said, if she were in my shoes, she would try it. Bottom line: nothing to lose, much to gain.

They all said that unless you go overboard on the red meat and dairy (cholesterol)(“a high bacon diet”) there can be no harm, and the diet might actually be good for you quite independently of any impact on the spondylitis. One said that a diet of low starchy vegetables is close to ideal. Cauliflower and broccoli in particular are singled out for plaudits.

I am beginning to want to attach a spiritual karma to my new no starch diet.

To keep kosher you can’t eat pork, or aquatic animals must have scales and fins so you can’t eat shellfish.

A few minutes on Wiki also teaches that if you eat foods that are halal (“halal” being Arabic for “lawful”) and you are Sunni, you can eat all seafood, but the Shia halal diet like the kosher one bans shellfish, with the exception of shrimp, which Shia halal can eat. The halal diet prohibits foods prepared with alcohol, as Muslims do not drink alcohol. Mormons similarly cannot drink alcohol, but they further cannot drink coffee or tea. But Coke is OK, go figure.

According to Wiki, “most major paths of Hinduism hold vegetarianism as an ideal.” The article continues that this is so for three reasons: the principle of nonviolence (ahimsa) should extend to animals; the offering of only “pure” vegetarian food to the deities, to receive back from them blessings including good health; and belief that non-vegetarian food diminishes the spirit and dulls the mind.

The Indian traditional medicine, Ayurveda, prescribes the sattvic diet (“sattva” being Sanskrit for “purity” suggesting the very core of existence or reality), also known as the yoga diet, which - again according to Wiki -- emphasizes yogurt, cheese, butter, honey, and most vegetables except ones like the potato which, they say, is gas-forming.

Buddhists also may practice vegetarianism due to principles of nonviolence.

In Hinduism, a dharma is a person’s individual obligation, calling and practical step toward attaining the ideal. In this way, diet can be a dharma.

I’m already thinking of the no-starch diet as a No Starch Dharma.

A couple of weeks into it now, and it seems to be helping resolve some AS-related immobility issues I have had in my upper back, shoulders and neck for some time, that were there even with Enbrel.

This is a great site. It’s an amazing resource so thank you again.

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#454306 - 10/15/11 03:15 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
pbs Offline
New_Member

Registered: 10/31/09
Posts: 6
Loc: British Columbia, Canada
In the summer of 2003, at the age of 32, I started having difficulty sleeping through the night. At two or three in the morning, the muscles in my lower back would tighten up. Sometimes an early morning bath helped, but I would normally wake up feeling more tired than before I slept.

A trip to the doctor led to x-rays, some back strengthening exercises, a prescription for Vioxx, and a 14 month wait to see a rheumatologist. The NSAIDs helped, but the exercises usually aggravated the pain.

I started experiencing chest pain, possibly from the inflammation, or the medication. The Vioxx was replaced with Celebrex. The rheumatologist said she couldn't make any sort of diagnosis since my vertebrae looked normal.

Over the next few years the pain worsened, and I started experiencing a constant low grade pain and occasional flare-ups that made movement extremely painful. I didn't want to be dependent on the medication, so I tried massage therapy, physiotherapy, chiropractic treatments, yoga, acupuncture and meditation. None of these led to any lasting relief.

By 2006, every step I took caused the “inexplicable” pain to shoot down my buttocks into one of my legs. I found a job that required less movement and was less stressful, still, maintaining a full-time job was challenging.

By 2008, I had given up hope of recovering. My hands started becoming numb in the morning, and one of my eyes turned bright red and became sensitive to light. I was diagnosed with Raynaud's syndrome and iritis. By this point I was convinced the underlying problem was A/S.

I was seeing a new chiropractor who couldn't understand why the inflammation in my S/I joint kept returning. I told him that I suspected A/S, but it wasn't confirmed. Based on my history and symptoms he agreed and said the problem was in my stomach and suggested a paleo-diet. I was skeptical, but also desperate, so I reluctantly eliminated grains and reduced sugar. This led to a significant improvement. The pain continued, but the flare-ups became less frequent and would settle down more quickly.

A new CT scan revealed sacroiliitis, and after another year on a waiting list, a rheumatologist made the obvious diagnosis. After six years, giving this mysterious pain a name provided an odd sense of relief. It also led me to the KickAS website.

After reading Dr. Ebringer's research about molecular mimicry, and the numerous success stories on KickAS, I bought Carol Sinclair's book and a bottle of iodine. After a few weeks on the NSD I again noticed a significant improvement. At this point I rarely needed NSAIDs, movement was less painful, and the flare-ups became less severe.

After about a year on the diet my progress plateaued. I was no longer taking pain killers, but I was still in some pain most of the time. Stress and major changes in the weather often led to fatigue and a minor flare-up. I was still thrilled with the progress, and being pain free seemed possible.

I read about some people having success by increasing their fat intake (Healing Naturally By Bee - based on the Polish Homo Optimus Diet). For eight months I continued on the NSD diet, but decreased carbs and increased fat. I often felt tired and sluggish eating this way, and after starting to feel occasional bouts of chest pain I decided to stop.

The NSD is still at the heart of my diet, but for the past six months, I have been very conscious about balancing the fats. My basic understanding is that polyunsaturated omega 3 and omega 6 oils lead to the production of anti-inflammatory hormones and an excess of omega 6 oils and saturated fats (some types being worse than others), create pro-inflammatory hormones. The monounsaturated omega 9 oils, like olive oil have a neutral or minimal anti-inflammatory influence.

To apply this, I eat a lot of fatty fish high in omega 3s (lots of herring) and supplement with fish oil. To reduce the omega 6 content, I only cook with olive oil and coconut oil and I try to buy free range / grass fed poultry and beef. Since dairy has a high degree of saturated fat, after a great struggle, I have almost gotten over a whipping cream addiction.

While eliminating starch made the most significant improvements, balancing fats has greatly helped (especially adding fish oil and reducing dairy). The pain is still lurking there, but now I feel that I have more control over it. With more energy from not always fighting the pain, I have been able to move forward in other areas of my life, like starting a family and training for a job I'm better suited for.

Reading about other peoples' experiences and successes with A/S has provided me with some much needed support, guidance and hope; I hope reading my story can also help you see some “light at the end of the tunnel.”

I wish you all the best in your journey to improved health.

Peter Smith

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#458970 - 12/26/11 03:18 AM Re: Hi my name is Tim and I am a NSD success story [Re: Dotyisle]
hello Offline
New_Member

Registered: 12/24/11
Posts: 6
hi Tim,
Thanks for sharing your story. I am from Australia and find some of the foods very hard to find. Everything seems to have a starch in it. I guess I will have to make everything myself.
In australia we don't have the liquid iodine(I have been to numerous pharmacies and also health food stores) and I can not find it. Do you have any suggestions where I can get it from?

Thanks, Anna

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#458971 - 12/26/11 03:23 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
hello Offline
New_Member

Registered: 12/24/11
Posts: 6
I have another question. How do you cope with the vey low energy levels. I have a tendancy to get iron and vitamin b deficiancies (and yes i do eat red meat and at the moment I am taking iron & vitamin b vitamins.)
Any suggestions would be great.

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#458973 - 12/26/11 04:54 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
Kancie Offline
Third_Degree_AS_Kicker

Registered: 11/30/11
Posts: 256
I cook everything in an iron skillet, which helps with iron. Take my vitamins, and try to get good rest, which isn't always easy. But I am feeling better. I nap without apology now, and drink lots of water.
_________________________
Iritis first diagnosed in 1991, presently recurrent and steroid resistant.
Tested HLA B27 positive in 1996.
AS diagnosed October of 2011.

Putting most of my eggs in the NSD and exercise basket, using only TENS, massage, heat and ice, and NSAIDS (sparingly) for pain. Drops for iritis as flare necessitates. Looking back I feel I would have been diagnosed with AS years ago, if I had found a rheumy earlier than 2011.

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#460199 - 01/13/12 11:44 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
Leovix Offline
New_Member

Registered: 01/11/12
Posts: 10
Loc: Brasil
Hi, I'm from Brazil and I'm 34.
I had back pain since I was 14, always treated as bad posture or sports injury... once or twice a year I would take NSAID for a few days and be Ok again.
In September of 2010 I had a terrible and persistent pain. Orthopedist recomended NSAID for a week and physiotherapy, but pain persisted for months. MRI of spine showed lesion on lower back and degeneration but no inflamation (the lesion on the spine confused the diagnostics, the real pain was comming from an inflamation on my sacroiliac joint and it took 4 months to be discovered).
In January my knee began to ache and then my shoulders. I went to 3 different orthopedists but they never mentioned arthrits.
I was deppressed and feeling very bad, my doghther was born in December and I couldn't help my wife as I did with our first son because it was such a pain to wake in the night.
I knew that something was wrong with me and started searching the internet, where I learned about arthrits and I was sure I had that.
Went to Rheumatologist in March of 2011, a very good one, and even before the results of blood tests and MRI of sacroiliac joint she told me to start taking NSAIDS. On the next visit she said that what I have was probably AS.
Well, that was scary but comforting at the same time. At least I knew who my enemy was. Today I think I'm lucky because some people take years to be diagnosed.
My life changed after that: I lost 30 pounds in 6 months, began pilates and cycling (as soon as my pain got under control) and my diet changed dramatically.
I remember I read about the NSD but gave no credit to it. The information in portugese (my native lenguage) is very poor.
At the end of 2011 I was felling very good, but still taking 3 NSAID per week and something very interesting happened.
In December I went on vacation and gained some weight. I decided to loose it in a week with a kind of Low-carb diet. Weel as you can imagine I felt great for almost 2 weeks, took 2 NSAIDs only. I was so happy about it but did not realize that it was from the diet.
When Christmas came I kicked the diet away and ate all kinds of delicious and starchy food on the last week of the year.
Well on January 1st I had a terrible flare that remmembered my first symptoms year and half ago. So I finally realized that it could have something to do with my diet.
I started the NSD at the same day and began searchig for information in english. That's how I found this forum and also bought Mrs Sinclair's book.
All I can tell you in 13 days of diet is that I'm already feeling so good. What really amazes me is how fast this diet showed results for me. My last NSAID was 6 days ago and I feel like I will no longer need it.

Thanks to all of you for sharing so important information. Wish you a wonderfull 2012.I will keep posting my results.

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#460232 - 01/14/12 05:33 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
Kancie Offline
Third_Degree_AS_Kicker

Registered: 11/30/11
Posts: 256
That's fantastic Leo! Keep at it and keep us posted!
_________________________
Iritis first diagnosed in 1991, presently recurrent and steroid resistant.
Tested HLA B27 positive in 1996.
AS diagnosed October of 2011.

Putting most of my eggs in the NSD and exercise basket, using only TENS, massage, heat and ice, and NSAIDS (sparingly) for pain. Drops for iritis as flare necessitates. Looking back I feel I would have been diagnosed with AS years ago, if I had found a rheumy earlier than 2011.

Top
#460518 - 01/17/12 12:55 PM Re: No/Low Starch Diet Success Stories [Re: matthiasC]
bobc Offline
Second_Degree_AS_Kicker

Registered: 05/09/06
Posts: 206
Loc: Broomfield, Colorado
That's awesome, Matt. Would love to hear an update if you have a chance. Hope it's going well.
_________________________
Get busy living! www.sickopportunity.com
Bob Connors

Me and my girls

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#461825 - 02/03/12 02:22 PM Re: No/Low Starch Diet Success Stories [Re: bobc]
yiannis Offline
New_Member

Registered: 01/29/12
Posts: 10
hi iam 34 years old. iam one more story of missdiagnosed AS.In my good fortune i dont have aggressive AS. i had since my 22 when i started to fill pain in my SJ(left) for short times one per year. i was doing intensively sports(martial arts) so any time i was think that was injury. After 10 years of periodically pain in my SJ and many doctors that they didnt manged to diagnose my problem i did the diagnose in my own.The significant was that the first HLAB27 test was negative. But was wrong. I found finally good reumatologist that told me that probably my HLAB27 was positive. I did it again, and guess...yes i was positive.He told me that i have to be active in sports, and i have to use NSAIDS9(Arcoxia 90 mg) when i fill pain.About 1,5 year the pain in my SJ was almost dissapear but i had pain in my left hip.
I found the book of carole's Sinclair and i try to do the NSD about the last 8 months. I think that it is very helpfull to me,specially in interaction with arcoxia. Also i do omeopathy and i think that is usefull.
So SJ pain almost dissapear.
Hip pain in my left hip is the active subject for me, but i think that the NSD is very helpfull. I didnt have any significant pain in the last 6 months. The last week i had pain (2-3 in scale) in my left hip. i took 2 days therapy with arcoxia and conteporary NSD and no LSD in that case.i had very good improvement.So till now i did LSD and when i had any pain up to 2 (no very often) i used NSAiDS with NSD.
Very important to be active . a lot of bodybuilding, bicycle, martial arts(but no my love tang soo do that i have 3 rd dan black belt)because i think is extremely hard for my hip.The september i received a part in triathlon champion and i felt very very nice.
i am very interest in any athlete with AS for experiences and training tactics. That was the most hard to me, when u have the dillema that i prefer one disease that doesnt hurt my joints because i want to be active. Keep on fight my brothers god bless you. i will be in touch with u for any detail and any interactive helpful tips.

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#462002 - 02/06/12 01:25 AM Re: No/Low Starch Diet Success Stories [Re: Kancie]
hello Offline
New_Member

Registered: 12/24/11
Posts: 6
Hi Kanice,

My iron levels seem to be ok at the moment. I was taking iron tablets. I think it was moret o do with being tired from pain.
I now am only working 4 days and I kind of feel a bit better at the moment.
In terms of an iron skillet, I have no idea where to get one. I am in OZ and most things that are in America or europe are called something different here.
Thanks for the reply.

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#462252 - 02/08/12 09:55 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
Leovix Offline
New_Member

Registered: 01/11/12
Posts: 10
Loc: Brasil
Hello everybody, I posted my first message in January 11th about my short experience with NSD and how excited I was about it. Today, after 40 days in this diet I can messure how much I improved by the days between NSAID's.
Before the diet I was taking Meloxicam (7,5 mg) avery 2 or 3 days, now I'm taking avery 4 to 5 days. The fast results during the first days really made me think I could quit Meloxicam after a couple of weeks. That didn't happened, but I'm stil very motivated and hopefull.
My impression is that the first results came very fast but the improvements are comming slowly. Anyone had the same experience? Can I expect more improvements in short term? Any Advices?
Thank's for the help.

By the way, Yiannis, it was very nice to read your post, because I'm also very active and one of my major worries is to have to stop doing the sports I like. Cycling is my favorite and usual practice and I think it helps me a lot.

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#462406 - 02/09/12 03:09 PM Re: No/Low Starch Diet Success Stories [Re: Leovix]
yiannis Offline
New_Member

Registered: 01/29/12
Posts: 10
u have o lot of time to be in balance.....keep walking....in my case in the beggining i was dissaponted the first 4 months....but if i compare today with the previous february iam 70% better...u have to give time to your body and u will see the difference....simultaneously u have to do your exercise and sports, drink water .....

the last 1 month i have begin aloe, ippofaes, gonji...for more balanced diet than supplements...but i dont want to give it so early as a helpfull tips.i will be in touch for my experience..

i drink and fish oil in liquid(maxepa)for years that i think that is usefull.

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#462712 - 02/13/12 10:56 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
AlbinoZombie Offline
New_Member

Registered: 01/18/12
Posts: 8
Loc: Denver, CO USA
Hello! It may be a bit early to be posting a success story but I can't help it! My husband was diagnosed with AS in 2005 at the age of 32. His story is similar to many of those who have posted. He started with back pain that he thought was from an old injury or just aches and pains of getting older. His rheumy started him on Remicade & Vicoden and advised him to quit his electrician job for a desk job. He did okay for about two years when the Remicade stopped working. From there he went from biologic to biologic while progressively getting worse. He eventually got so bad that he became permanantly disabled.

When the rheumy couldn't manage his pain, he was referred to a pain management clinic and started on stronger and stronger meds. It's been an extremely difficult time watching him suffer and deteriorate. His hips and spine have been the worst affected but other joints flare. He suffered from iritis flares, stomach upset, heartburn and a general feeling of malaise that he described as having the the flu permanantly.

As life in general began to get too overwhelming, I sought counseling. My counselor assigned me "homework" of joining a caregiver support group. I was putting it off because I didn't think I had time to go to a support group, so I thought I'd find one online. That's when I found KickAS. I was reading the forums and came across the NSD. I shared it with my husband who was in such pain that he said that while he loved bread, he'd gladly trade the bread for less pain.

We started reading and testing food with iodine. By the end of the first week, the "flu" feeling was gone. By the 2nd week, the pain was improving. We are in the 2nd month now and just learned that the Vicoden that he still takes is full of starch---that's the next to go. But overall he is doing so much better I don't even know what to do with myself!

This is the first time in years that we both have hope for the future. He's suddenly interested in his old hobbies again. He's dragging me off to the store just so he can get out of the house. He's lost some of the weight that he had put on while being inactive. (So have I! blush)

For the most part, he hasn't had too much trouble sticking to the diet. We got Carol Sinclair's book and stocked up on almonds, fruit, veggies, meats for grilling, cheeses, etc. I've been enjoying trying some of the recipies for baking with almond and coconut flour. I made coconut flour cupcakes tonight that were decadent!

I have to say that we are dissapointed that all the brochures and physician advice he's been given over the years said nothing about diet. I wonder what life would be like had the NSD been communicated to us on the day that we found out he had AS. Of course, we also know that the man he was back then probably wouldn't have readily given up bread. He was a big, bad, smoking, drinking electrician! I still think if he'd known all these years that starch was the enemy, maybe, just maybe...well anyway, can't go back in time, can we?

The important thing is that KickAS & Professor Ebringer have given us a beautiful gift. The gift of hope. We'll take it!!!
_________________________
Loving wife of a spondy

Diagnosed in 2005. Went through a string of biologics, loads of pain meds with little success and lots of scary side effects. Found the No Starch Diet in 2012 and having great success. Reducing pain meds for the first time!

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#462801 - 02/15/12 07:26 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
Kancie Offline
Third_Degree_AS_Kicker

Registered: 11/30/11
Posts: 256
Mrs. Zombie, that is beautiful! I am so very happy for you both! Keep at it!!!!
_________________________
Iritis first diagnosed in 1991, presently recurrent and steroid resistant.
Tested HLA B27 positive in 1996.
AS diagnosed October of 2011.

Putting most of my eggs in the NSD and exercise basket, using only TENS, massage, heat and ice, and NSAIDS (sparingly) for pain. Drops for iritis as flare necessitates. Looking back I feel I would have been diagnosed with AS years ago, if I had found a rheumy earlier than 2011.

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#463637 - 02/26/12 06:41 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
Johnjob Offline
New_Member

Registered: 07/14/11
Posts: 3
Loc: Beijing, China
I had the same experience like Leovix and need friend's advices.
_________________________
To see a World in a Grain of Sand
And a Heaven in a Wild Flower
Hold Infinity in the palm of your hand
And Eternity in an hour

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#464382 - 03/05/12 10:10 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
KiwiEmily Offline
Member

Registered: 03/05/12
Posts: 30
Loc: Auckland
Hi, I just registered today, this is my FIRST post!
I was only diagnosed with AS last week and it's still all very overwhelming for me. I am very interested in this diet and pleased to see all the success stories, it gives me hope.
I have just ordered Carol Sinclair's Low Starch book as a place to start. I hope soon I can post my success story here too.
_________________________
Diagnosed March 2012
First symptoms December 2011
31 years old
Determined to change my poison into medicine!
Runner, stamp collector, cat lover, cheese lover

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#467230 - 04/13/12 03:56 PM Re: Hi my name is Tim and I am a NSD success story [Re: hello]
pspondylitis Offline
Journeyman_AS_Kicker

Registered: 03/18/12
Posts: 108
Originally Posted By: hello
hi Tim,
Thanks for sharing your story. I am from Australia and find some of the foods very hard to find. Everything seems to have a starch in it. I guess I will have to make everything myself.
In australia we don't have the liquid iodine(I have been to numerous pharmacies and also health food stores) and I can not find it. Do you have any suggestions where I can get it from?

Thanks, Anna


Check Ebay, they have everything ! I bought my bottle from ebay, but i live in the UK.
_________________________
Most likely psoriatic spondylitis. HLA - .

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#467314 - 04/14/12 03:05 PM Re: Hi my name is Tim and I am a NSD success story [Re: pspondylitis]
Philsta Offline
Journeyman_AS_Kicker

Registered: 02/20/11
Posts: 128
Loc: Perth, Australia - Frankfurt, ...
Originally Posted By: hello
hi Tim,
Thanks for sharing your story. I am from Australia and find some of the foods very hard to find. Everything seems to have a starch in it. I guess I will have to make everything myself.
In australia we don't have the liquid iodine(I have been to numerous pharmacies and also health food stores) and I can not find it. Do you have any suggestions where I can get it from?

Thanks, Anna


I am Australian and I can assure you that we do have liquid iodine in Australia and you can get it at any pharmacy. Betadine is very common... it is exactly what you need.

Actually I am looking forward to moving back to Australia as it will make the low starch diet so much easier than it is here in Germany. Starch really is hidden in everything and all German meals seem to be coated in bread or served with a mass of potatoes.

Food is danm expensive in Australia but really fresh fruit and vegetables, meats and fish are so easy to find and are of extremely good quality. Start cooking with fresh ingredients and you should never have to worry about hidden starch.


Edited by Philsta (04/14/12 03:09 PM)

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#469683 - 05/15/12 08:11 PM Re: Hi my name is Tim and I am a NSD success story [Re: Dotyisle]
Farmer_K Offline
Member

Registered: 05/14/12
Posts: 30
Loc: Queensland, Australia
My husband has AS and we have successfully managed to REVERSE the damage to his spine through a starch-free diet while lowering his lactose consumption as well. You can find more out about it on my blog - www.farmerkskitchen.com (there is a section along the top called { K's Reboot }. I also list many starch-free recipes we have been eating along the way! Hope it helps smile
_________________________
My husband has had AS for nearly 14 years and almost unable to walk. Now he is completely pain-free since following a strict No Starch Diet.
My food blog (with NSD recipes): www.farmerkskitchen.com
My husbands AS story: http://thefacesofankylosingspondylitis.com/a-s-face-0271-kirk-vagg/

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#469692 - 05/15/12 09:02 PM Re: Hi my name is Tim and I am a NSD success story [Re: Dotyisle]
lar84 Offline
Third_Degree_AS_Kicker

Registered: 08/26/11
Posts: 265
Loc: Virginia
Farmer K, I read the Let The Healing Begin part of your blog, and I was in tears. That is SO many of our stories, all the same! It's amazing and pathetic at the same time. NSD has literally, literally saved me. I feel born again. Your sentence about Kirk worrying if he'd be able to throw a frisbee....I SO identify with that. It was the small things in life like just being able to walk from point A to point B that I would envy other people about. Now it doesn't even cross my mind. I try everyday to remind myself not to take the simple things for granted, although I still feel bitterness that I should even have to think about these things. But such is life.

Thank you for sharing your blog with us. I will make sure to read your recipes!
_________________________
Lauren S.

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#469695 - 05/15/12 09:19 PM Re: Hi my name is Tim and I am a NSD success story [Re: lar84]
Farmer_K Offline
Member

Registered: 05/14/12
Posts: 30
Loc: Queensland, Australia
Hey lar84! Thank you for your comment and lovely words. You are so right, it definitely is the little things in life that turn into huge, mammoth things when you are suffering from something so debilitating - walking, sitting, driving, showering....
If you have any tips or ideas with NSD please let me know...I am still learning! xx

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#470468 - 05/25/12 03:50 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
bamboospine Offline
New_Member

Registered: 05/09/12
Posts: 7
Loc: New Hampshire
Hi. This is my first post. I've only been on the diet for four months now, but I appear to have put my AS into remission with NSD. Here's my story:

Symptoms started for me when I was 25, seven years ago, with what felt like a pulled hamstring. I was sure that this was some sort of injury and just waited for it to heal. Instead, over the next few months the pain mysteriously started to move from place to place in my legs and girdle area, increasing in intensity.

I was referred to a neurologist, who was mostly interested to find out whether this was a symptom of Myotonic Muscular Dystrophe, another genetic disease that runs in my family. My father died of it, and my sister has it pretty bad. I was tested and it turns out I dodged that one (pretty sure I got the HLA-B27 from my mom). My family has a curse on it, which probably began with my unspeakably evil great-grandfather.

Anyway the neurologist sent me on my way saying that this was an issue with posture or a lingering soft-tissue injury that would get better with stretching and strengthening, which made sense to me. But by that fall, things got really bad. I felt like I was walking waist deep in water, and the water was pain. The inhibition to move at all was so powerful that I lost my natural gait, and had to walk by micromanaging my legs.

Soon, pain between my shoulder blades would show up in the middle of the night and keep me awake, and while I was lying in bed I discovered a different issue. I began feeling palpitations. At first I mistook these for air bubbles, like little low pre-burp gurgles, but soon realized they were sensations coming from my heart. I would hear the normal thump-thump . . . thump-thump of my heartbeat, but then, occasionally, a thump-thump, thumthi . . . . . . . THUMPthi . . . . . . . . . . . . THUMPthi. . . . I went to the hospital and an echocardiogram determined that my heart was only pumping out about 30% of its volume with each beat (a healthy heart pumps 55-60%)--a condition called cardiomyopathy. I was in danger of "Sudden Death", where the heart falls out of rhythm and then just gives up like a confused dancer. I was put on beta blockers and it was recommended that I have a defibrillator (an ICD) implanted in my chest to automatically administer an electric shock if my heart stopped. This was all while I was 25-26. I actually think that one reason it took so long for me to get an AS diagnosis was that I was much more worried about my heart than my body. It was only later when I got the AS diagnosis that I learned the two conditions are probably related.

For years nothing changed--six years to be exact--and the pain continued to come and go. In 2010-2011 pain in my lower back got pretty bad and just stuck around--I mean like no relief at all for sixteen months. Then about a year ago I moved to New Hampshire, and switched PTs. Interestingly this new PT was the one (not the two neurologists, the three cardiologists, the four or five GPs I saw at the University of Chicago Student Care Center) who said I ought to get checked for AS. My X-rays and MRI showed some milky ribbons of calcification in the sacrum and spine--the beginnings of fusion. (My HLA-B27 test actually came back 'inconclusive'--I've just had that re-done and am awaiting results). So I was diagnosed. This was August of 2011.

I was referred to a rheumy and she did what (apparently, as I read others' stories) rheumys do: she gave me a short list of pharmaceuticals, starting with stronger NSAIDS than I had been taking. For the next four months I was on the NSAIDs, and these didn't work at all. This worried me because the next in her "big bag of tricks"--these were her secretary's words on the phone, though to me this doesn't seem like a very big bag--seemed scary to me: the immunosuppressant anti-TNFa drugs.

That was when I began to experiment with diet. This was supposed to be simple: I had heard that some foods are 'inflammatory' like wheat, and I thought I'd just get a list of those so I could avoid them. But one thing led to another and after trying a Paleo diet for a month I finally ran across a reference to the no-starch diet for AS (what a fool I was--should have done a thorough search on AS treatment right away), which linked me to kickas.org and the blog sickopportunity.com. After a little reading--including this thread--my wife and I decided I should just go all-out NSD that night. That morning I ate sauteed shrimp with spinach and avocado.

By about two weeks in (including some NSD novice missteps) my pain had gone from the 4-6 range to 0-1, which is where I've been now for four months, off NSAIDS for the last two. I'm still learning about the diet, and I turn out to be pretty starch sensitive. It seems I tolerate simple sugars and dairy in moderation. I will flare to about a 4 for two or three days if I eat the wrong thing: a fistful of macaroons on the way home from the supermarket that later tested jet black, an enzyme supplement I did not suspect (where the starch is in that I don't know), maltodextrin, coconut milk, watermelon--these things have tricked me. If I'm careful and stick to what I know I do not flare at all.

A recent visit to the rheumy confirmed two things: First, doctors are disappointing here. Has anyone else had the experience of telling their doctor this amazing story about actually curing a crippling, incurable disease only to have them frown and tell you they're happy that it 'works for you'? What an unseeking, uninquiring way to respond. Thus the conversation ends where it ought to begin. Second, my bloodwork showed my CRP (indicator for inflammation) now fell squarely in the normal range.

Then the recent trip to the cardiologist. Over the years my heart had mysteriously been improving its function bit by bit. Originally the cardiologist told me that this couldn't happen, but it did: my heart went from pumping out 30% to 35% to 40% to 45%, with each semiannual echocardiogram from 2007-2010. I became glad I declined the ICD. I don't know how this came about, but my best theory is that the heart issue is either AS related or another GI autoimmune issue. When I was tested at 30% I had been a vegetarian for five years, but when I got the diagnosis I gave it up on a recommendation from my cardiologist. I recently ran across one study Dr. Erbringer talks about showed that vegetarians have on average over 40 times the number of klebsiella in their feces, and of course there are all sorts of other differences in the gut flora too. And this recent visit? Well I can't be sure if the NSD is the reason but this echo showed my heart pumping out 55% of its volume with each beat--in other words: normal. The report literally says "all valves working normally".

Of course I may keel over tomorrow, who knows. But I truly feel well now, which is just unbelievable. I recently took my first long meandering hike in years (this, one of my favorite things in life, became one of my biggest no-nos). More importantly, my son Ben, our first, was born on April 12th and I have been able to be the legs of the family while my wife recovers. I'm hoping his dad will get stronger and stronger. I'm truly thankful to the people who have taken the time to make the NSD a presence online for the sake of others like me. I usually avoid computers whenever possible, but I feel very lucky that we live in a time when we can spread ideas outside the orthodoxy so easily. It changed (and maybe saved) my life. Thank you.

If you're thinking of starting NSD for heaven's sake give it a try. If you want a teaser of what's to come try a dinner to dinner fast. That's simple--it's certainly cheap--and very convincing.

I am writing a personal essay intended for publication about my experiences with AS and the diet. Trying to get the word out. I'll post a few questions I have in a different thread.

Charlie

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#470573 - 05/27/12 02:54 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
Yatesy Offline
New_Member

Registered: 05/10/12
Posts: 12
Loc: Western Australia
Charlie ,
Firstly - I have Had issues with my lower back my neck and my hip and also sometimes my knees for years- ( 17 yrs) put i put it down to wear and tear from being a dancer for too long. I exercised I did yoga I swam. I had physio and mostly it was manageable - 4 years ago my hip got so bad I was limping - the doctor said it was bursitis and I had a cortisone shot which really worked. I took NSAIDs quite often for all the joint pain.
Then 6 years ago I got really sick - symptoms akin to parasitic infection - the doctors treated it with Flagyl - but it never really went away completely.
I managed my diet to some degree - cutting out bread pastry etc.
About 5 months ago my hip became chronic again - thus time the cortisone didn't work. Weeks of doctors visits and then my lower back and neck became so painful I couldn't sleep - I became really run down and started taking time off work. I was in chronic pain and I could hardly walk or sleep.
In the meantime I had begun researching AS as my GF has it and she said I had all the symptoms - test upon test and a really misogynistic rheumatologist said I was fine - go get a massage I was told.
By now I had started a NSD and found a great naturopath. It was only then that I started to get well again.
Having doctors tell you that there is nothing wrong with you when you are clearly in pain and limping is soul destroying. I know how you feel. At one stage the doc told me not to change my diet at all!!
I just did a dinner to dinner fast and had my first pain free sleep in months!
I've been on the NSD for 3 weeks only and it was only when a naturopath told me I had intestinal parasites that I really started recovering my energy - I started a no sugar diet along with the NSD. Then I discovered that eggs and dairy irritate also so I cut them out and now fasting is my new Spruce up for inflammation.
I've done a lot of research on parasite leaky gut and auto immune diseases - it all makes sense to me as I've had stomach issues for years and had to cut out many foods over that time.
I'm now taking garlic, poa darco, bron enzyme and alfalfa supplements for the inflammation and parasites and also probiotics for the leaky gut.
I am stretching and walking 15 minutes a day and hope to get back to swimming soon.
I'm undecided as to whether I should see a different rheumy but it seems eventually I might need a traditional medical diagnosis just to show society that I'm not lying or neurotic.
This makes me sad I must say - that doctors fail to see that food can be medicine or poison.
In the meantime I'm so overjoyed to have been able to sleep and dream again .
To sleep, ah perchance to dream.
Good luck with the diet - good for you and good for me smile

Claire

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#470854 - 05/31/12 12:54 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
lar84 Offline
Third_Degree_AS_Kicker

Registered: 08/26/11
Posts: 265
Loc: Virginia
Charlie & Claire....wonderful, wonderful news. So very happy and excited for you. I so badly want to write a success story, but I promised myself I am going to wait a year into the diet. 9 months into it, it has been like winning the lottery for sure.

YAY FOR NSD!
_________________________
Lauren S.

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#472836 - 07/07/12 03:55 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
Red512 Offline
New_Member

Registered: 07/03/12
Posts: 12
Hi all, this is my very first post! I have read on the kickas site before. I don't actually know how to even start a new thread yet!

I am so pleased to see this thread though. I have been low starch for 2 and a half years and although I can't say I'm pain free, I am so much better than I was.

So much so, I have started to collect good, low starch recipes on my blog. I get nothing out of it, I make no money, I purely want to spread a little low starch love for folks who might not be aware of the difference it might make.

I also talk about my AS journey, I will post the link here, I hope that is ok and appropriate, if anyone would like to direct me to a better place to share recipes, I will happily move along! LOL

Many Thanks and nice to meet y'all

Ria smile

http://cigarettesandmeltedchocolate.wordpress.com/

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#475340 - 08/18/12 09:09 PM Re: Hi my name is Tim and I am a NSD success story [Re: Dotyisle]
joshL Offline
Lurker

Registered: 05/10/12
Posts: 1
Thanks for your post, very informative. I have been a relatively lucky ASee as my mother was very progressive in the very early stages (violent AS attack to major larger joints at 15) and I now am mostly fine but get attacks every now and then when I get too complacent with my diet. I have decided to re-vamp my outlook and try the same advice I gave a friend on quitting tobacco, go running. all other sports I can do as I generally have a good pain level maintained, but running has always been a movement where I can notice much finer levels of pain. Just as I advised my friend to run every morning and so notice the improvement in lung operation, I have decided to run every morning, not long runs but enough to notice on a micro level how I am feeling which hopefully will inspire me to keep to a good diet: I dislike being physically impaired. What is your take on running? I have had some concerns regarding it's effect on my knees etc. do you notice any inflammation anywhere else aside from SI? I have not since my first ever attack at 15, now it is all alternating from left to right SI and obviously occasional uvitis and fatigue.
Josh

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#475537 - 08/22/12 07:51 AM New Success Story Here! [Re: Dotyisle]
lar84 Offline
Third_Degree_AS_Kicker

Registered: 08/26/11
Posts: 265
Loc: Virginia
Hi Everyone!

Just wanted to pop in on my one year anniversary and tell you all I AM DOING FANTASTIC!!!! Thank God for the NSD. I'm telling you, if you have doubts, please, please try it. You will need to tweak it to fit your individual needs; it is not an easy path to follow at all. But with persistence (and a touch of stubborness) it took almost the entire year to get my diet to fit where I want to be pain-level wise, which is ZERO pain, and right now I am in zero-pain! And have been in pain level 3-0 in the past 6 months (mostly 1-none).

I'm going to try to make this short & sweet but a little background for the newbies out there: I suffered undiagnosed for almost 4 years, going from doctor to doctor, to pill to pill, to chiropracters, PT, massage, you name it, I tried it. My pain was the kind that had me limping severely for roughly 9 months out of the year, couldn't get out of bed, couldn't dress myself, couldn't use the bathroom without assistance, couldn't get in and out of the car without extreme pain, etc. Basically I didn't have a life. What once was filled with horsebackriding, running, playing sports, games, snowboarding, just plain WALKING and many many more things I enjoyed doing came to a complete STOP. It was terrible, especially for someone whose symptoms started at 22 and had no clue what the problem was. I was starting to think I was crazy and in my deepest of despair, actually had thoughts of taking my life several times.

Finally, I found a doc with a BRAIN and he referred me to a rheumy. Of course, he gave me the usual two options of NSAIDS or Immunosuppresents and handed me a couple brochures and basically in a way said sucks to be you, here's some crappy options, good luck with the rest of your life. Well, I wasn't having that. I knew there had to be an underlying cause to this stupid disorder. SO, I started on my research. I probably put at least 500 hours researching on the internet including this website, and sickopportunity.com. I started the diet right about this time last year, and I am now a changed person. Not only do I have my life back, I seriously feel like a brand new person, inside and out. I have lost 30 lbs, look great, feel great, and am back to doing the things I used to. In fact, I have ALWAYS wanted to try wakeboarding but in the past the thought was laughable. This past weekend I did, and I got up out of the water! I have the itch, and I think I may have a brand new hobby!

I am so excited and my only wish now is that any of you that are in the position I used to be can get some hope from my story. My best advice is to keep a journal (I kept on in my iphone in the calendar feature), keep a CLOSE monitor on how you feel every time after you eat something, and STICK WITH IT! I really believe that the first 6 months was tweaking my diet, and the next 6 months is your body adjusting and healing from the terror AS put on it. I am not the expert, but if you have any questions, you may PM me and I'll give you my email address.

THANK YOU KICKAS! YOU SAVED MY LIFE!

~Lauren


Edited by lar84 (08/22/12 08:03 AM)
_________________________
Lauren S.

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#478121 - 10/09/12 10:49 AM Re: New Success Story Here! [Re: Dotyisle]
Key Offline
New_Member

Registered: 09/28/12
Posts: 8
This is only my third posts here on kickas.org and wanting to share my story, so far.

I was diagnosed with AS just a couple weeks ago. I have not been to a rheumy yet but have an appointment next March. It is a long wait but better than nothing at all; considering my GP told me she would treat it and I did not need a rheumy. I am only taking Ibuprofen on a regular basis. I am trying to self-treat myself but I am getting worse. I have been doing a lot of research and found kickas.org a few months ago. I am thinking that I have had AS for a lot longer than I had previously thought.

Since last week, I have been on a VERY STRICT NSD. I said in a previous discussion on this website, that I have been on a NSD diet, before. This ends up being not true. I was nowhere near being starch free till last week. I have found that everything has starch and I am having trouble finding things to eat. I now have a journal and a bottle of iodine to battle the evil starch villain. I am not seeing any improvements and only getting worse. I am losing more weight which is bad because I do not need to lose much more. I am pretty lucky because my wife is in the battle with me. She has told me that she does not want me to go into this alone. She has been making all kinds of stuff. One of my problems is that even though I am starch free there are foods that are still making me sick. I swear there is no starch but I still get sick. When I say sick, I mean that I get diarrhea and just have an overall feeling of awfulness.

I will keep fighting and refuse to give up....


Edited by Key (10/09/12 10:51 AM)

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#479579 - 11/07/12 10:10 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
Kelrhys Offline
Lurker

Registered: 11/07/12
Posts: 1
I have not been diagnosed with AS but just tested positive for HLA B27 2 weeks ago. I have been battling iritis for about 5 weeks, for the first time. The opthalmologist tried to step me down from every 2 hours to 4 times a day on the prednisolone drops and I had a bad re-flare which was not getting better as fast as he expected. He gave me one more week to be almost 100% inflammation-free or it was time for a shot in the eye. But every morning I would wake up with redness and a little bit of pain. Finally I did some research on my own and found this site. Upon reading that a low starch diet had helped so many people (and that so many had the iritis come back without the diet!) I decided to give it a try. I had done low carb about 10 years ago and lost 50 pounds so I had a good idea of what I could and could not eat for the most part.

2 days after cutting the starch/carbs my eye no longer was red or painful - and it was the day of my dreaded appointment. The doctor was amazed that after every other checkup being a "disappointment" this one suddenly was great - the swelling was almost 100% gone. So we are now starting the stepdown regime for the drops.

I am so thankful for finding this website!!


Edited by Kelrhys (11/07/12 10:12 PM)

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#482661 - 01/21/13 07:31 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
Bel Offline
Active_Member

Registered: 12/31/12
Posts: 54
I know it’s early days, but I just wanted the share this.

My husband has been recently diagnosed with AS but thankfully it is not very advanced and that's how we want it to stay. He's nearly 50 now. He used to get a lot of night sweats when he was in his late 20's/ early 30's, over a period of couple of years. This has since been linked to his condition. Since that time he had a lot of lumbar pain which we thought was mechanical injury due to sports. He found sitting very uncomfortable so travel was difficult.

He has had Chiro for many years to free up his lumbar and pelvis (sacro iliac) area . Slowly his back pain got better over the years. When pain got worse he would go to the chiro for a very gentle adjustment ( he has experienced some very forceful chiro’s who did not help at all), with some low grade pain being present all the time. This past year he has also had trouble with his eye on and off.

About 6 months ago his chiro suggested he saw a Kinesiologist regarding nutrition. She put him on some supplements and suggested dietary changes very similar to low starch diets, but said not to get to burdened down with it.

Recently, after a gap of over 15 years around Christmas he had 3 night sweats in close proximity indicating a flare up. He was also feeling very tired which we wondered was linked to good living of Christmas food; so we cut down on processed sugary treats and started doing wheat free.

At that point I contacted the forum and also gleaned some very helpful dietary information. The result was us trying to reduce starch in general also. No wheat or grains, rice or potato, no lactose.

I have started to do more home cooking and making food which is safe to eat, and also allowing plenty of suitable foods for snacks.

The changes we have made so far … which are not as strict as they could be so there is still some scope, have meant that he now has no low grade pain in his sacro iliac area for 3 consecutive days.

This is new and must be the result of the dietary change which has occurred slowly since 6 months ago and more recently since has been taken the diet more seriously !!

Thanks to Kickas for the support and information that has made a difference so far.

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#488602 - 05/09/13 09:43 AM Re: No/Low Starch Diet Success Stories [Re: Bel]
bamboospine Offline
New_Member

Registered: 05/09/12
Posts: 7
Loc: New Hampshire
Hello all. I posted my NSD 'success story' about a year ago on this thread. Things are still going great--better than ever.

I am posting again because I wrote an essay based on my experience that is all about AS and NSD. It was published in The Point Magazine last January, and they have just now made the full text available for free:

http://www.thepointmag.com/2012/essays/plea-human-food

I'm trying to spread the word about the diet as best I can, so if anyone out there has a way of getting this link to more people--please help! The essay is meant as a kind of layman's introduction to autoimmunity and diet therapy. Some of you on this site helped me with the technical side.

Thanks,
Charlie

ps: if you want to reply, I'm also posting to the general forum so as not to clutter the sticky success story thread.

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#488711 - 05/10/13 11:28 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
Pea Offline
Captain_AS_Kicker

Registered: 02/24/11
Posts: 1968
Loc: Pacific Northwest
Charlie,

Ha ha, I found you again. I saw your article earlier somewhere else and have already shared in several areas and was about to post it here for you but look, you are already here! Small little A.S. world isn't it.


Edited by Pea (05/10/13 11:30 PM)
_________________________
Pea
Diagnosed with A.S. 29 year's ago.
Diagnosed with Fibro 10 year's ago.
Remicade, Intrathecal Pain Pump 2013

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#488977 - 05/16/13 12:11 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
evand1991 Offline
Active_Member

Registered: 06/20/12
Posts: 74
Loc: Ottawa valley, Canada
Hello My name is Evan I am 21 year old from Ottawa Canada. Here is an e-mail I sent to my AnkSpon buddy in Australia. It is a good summary of how my AS went into remission and how I got off all nsaids and other prescription drugs that help short term but make things worse long term. Have a wee read if you'd like and feel free to ask questions about my experience.

Take care,
Evan

--------------------------------------------
G'day Geoff

How are things? Did you end up giving CMO[Cetyl Myristoleate] a try? Any results?

I reduced my LDN [low dose neltrexon] to 1.5 mg from 4.5 mg the last time I was talking to you and still experienced some brain fog..dizzy..anxious symptoms so I went off it again. Right after I quit the LDN I started CMO along side a fairly good dose of Glucosamine Sulfate and a couple other supplements. I seemed to experience some relief for about a month. I got fed up again and started reading into nutrition a lot more, I already knew low starch diet gave some relief. Next to go was all gluten and sugars...more relief, then all night shade veggies...more relief.

Somewhere in my readings I came across someone talking about water only fasting for disease especially autoimmune. Talked to my doctor about it and he thought I was bat [*bleep*] crazy and to be honest i thought it was a little nuts too. I then came across a book called Fasting and Eating for Health: A Medical Doctor's Program for Conquering Disease by Dr. Fuhrman (he's chummy with dr Oz and dr Weil). This book really changed my view on western med.. I then started looking for clinics that will do a supervised water only fast, I only found one in north america called True North Health Centre located in Santa Rosa California and ran by Dr. Goldhamer(who actually interned with a doctor who supervised fasts in Australia 30 years ago).

So after many over the phone conversations with True North I took a wee trip to California to Check It out. I ended up staying a month doing a two day pre fast (fruit and veg only) then a 14 day water only Fast followed by a re-feed [day of fresh juice, a day of raw veg and fruit, a day of raw and steamed veg, and finally a week of a very strict vegan diet with no added salt oils and sugars (even no honey, maple syrup, olive oil, gluten ex..)].

I'm happy to say the results were amazing ..SI joints released, thought they were fused. shoulder healed, joint mobility increased, muscles relaxed, irritable bowel and colitis symptoms disappeared brain fog gone, depression gone, mood swings gone...the list goes on. Another strange thing that happened was old injuries from the rugby and football days that didn't bother me started to hurt intensely for about 5 days then went away..almost like my body was healing them..I have read this can happen. Also I am off all over the counter and prescription Drugs!

As you can see I am doing well sticking to healthy eating (not completely vegan but try to eat naturally fed meat or a lot less animal protein.. and no oil salt or sugar) reduced alcohol intake. Also I have started a regular exercise routine mostly just cardio right now..haven't been able to jog in a couple years now..as each day goes by i am able to run or bike longer and longer.

Thanks again for all your help with AS..I think I have found something that will work for me (at least for now) and hopefully be able to stay off those crazy drugs.

Water fasting is not for everyone and may sound crazy at first, as it did to me, but It actually works and in a short period.

Cheers,

Evan

----------------------------------------------------
So there is a little brief summary of my experience. It is recommended that one should be medically supervised if fasting longer than 5 days and one should not be on any medicine including natural supplements while fasting.

Feel Free to Email me with any questions at evan.donnelly@hotmail.com just please make sure you put ANKSPON or something related in subject bar..or can msg me on here.

Go kick some AS

Ev

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#490767 - 06/23/13 05:23 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
Almond Offline
New_Member

Registered: 02/19/13
Posts: 16
Loc: Netherlands
Hello everyone,

I’ve only recently become a KickAs member. I’ve been visiting this site many times during the past few years. I was diagnosed with Spondyloartritis/Bechterew’s disease in 2011. I’ve been suffering from fatigue and severe pain in my lower back since 2009.

In 2010/2011 it got worse. I wasn't able to ride a bike or even walk for month’s in those days. It was terrible. I’ve spend nights (couldn’t sleep anyway) and days trying to find a remedy for this because the medication the doctors gave me had nasty side-effects.
And then I found you guys! Thank God for the internet and for Kick As. This changed everything for me.

I read the books (Gotschalls’ and Sinclairs’) and started the no starch diet in the winter of 2011 and felt improvement within a week. My morning stiffness disappeared. It just disappeared! I was completely surprised. Soon the pain also went away slowly, step by step.
It wasn’t easy. I think this diet is not for the faint-hearted. It’s hard work but you get used to it. I make my own almond bread, my own pizza’s, I make 24-hour yoghurt and I drink as many green juices as I can. I have a wonderful partner supporting me in all this.

What can I say besides: thank you KickAs members, thank you so much! Your posts have helped me through my lonely painful hours and gave me a reason not to despair. A reason to stay positive. And this diet works! I can truthfully say now: IT WORKS!!!! If you’re new here and wondering; please believe me: eating no starch works!!

I’ve been telling everybody who’s interested about this diet. I’m trying to spread the word here in Holland. I hope that I can help others who are in the same position that I was in at the time.
I’m still learning about food and its impact on our health. There is so much to explore and it has become an new interest. I’m thinking about going back to school to become a food advisor.

I want to give everybody here my utmost respect and support on your way to a better health. Keep up the good spirit. For all you Dutch readers, I’m blogging about my no starch adventures at:
almondfigtree.wordpress.com.

Greetings from Holland!
Almond


Edited by Almond (06/23/13 05:30 AM)
_________________________
Diagnosed with Spondyloartritis in 2011. HLA B-27 positive. Started no starch diet in the end of 2011. Been (almost) without medication since that moment. I was a sceptic. I'm a believer now: 'let food be thy medicine'. For Dutch readers: read my story on: http://almondfigtree.wordpress.com/

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#490914 - 06/26/13 07:49 PM Re: SUCCESS [Re: Dotyisle]
jayz Offline
Lurker

Registered: 06/25/13
Posts: 1
Loc: Victoria, Australia
Hi All,
I just thought I would give a run down on my path from constant lower back pain! with sometimes weeks on end not being able to move with out joint pain up around the 9/10 mark!! Mostly in the S.I joints and lower back. A few years ago, like most of you have, I ended up with the Rheumatologist telling my I was HLA B27 positive with A.S! Straight away I was out the door with a script for NSAID's and another appointment to come in to talk about TNf blockers.... I did some research on both of these treatments and never returned to the DR. Once again, Like most of you I discovered the LSD and Wow what a difference!! I was about between 75-85% pain free! but still suffer a bit of IBS which I new was associated with my AS.Then about 6 months ago a friend got me on to Herbalife products and now I am pain free about 97% of the time, have loads of energy!! and my IBS, gone!! The only problem is these programs are expensive! but there are ways around it so you can buy it directly and pay 25%-50% off retail like I do. Some other ways to help your AS is to optimise your Vitamin D levels and if you are having a painful joint flare up the best thing I found to do is "fast" for up to 24hours if you can.. Please Email me if you need any help? will more than happy to assist.
"The best Doctor in the world is our selves"
Jamie

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#491614 - 07/12/13 11:07 AM Re: SUCCESS [Re: Dotyisle]
pacman Offline
Lurker

Registered: 07/12/13
Posts: 1
I'm new here but have been reading for a while. Your stories have about the NSD have been inspiring. Goodbye pizza and beer, hello steak and red wine.

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#492131 - 07/23/13 02:39 PM Re: SUCCESS [Re: Dotyisle]
lar84 Offline
Third_Degree_AS_Kicker

Registered: 08/26/11
Posts: 265
Loc: Virginia
Hey everyone!

Just a quick update. Almost 2 years into NSD, and I am back to my old self pre-AS! Some of the things I've been able to do with 100% success are:

-get out of bed (and run away if I had to in case there was a fire or burglary. something I was deathly afraid of when I was in pain all the time)
-use the bathroom un-aided
-JUMP out of my car; much less drive and take a normal turn or pothole without holding my breath and bracing myself.
-run around and act like a general fool
-jumping jacks
-hop & skip
-take leisurely strolls through a city
-ride a bike
-ride horses again (something I thought would never happen again
-dive off a diving board
-go scuba diving
-sit down or get up from my office chair
-make dinner (paleo styleeeee of course smile
-make love (gentle and crazy style smile
-ride amusement park rides
-OH!! put on clothes!
-fall over my own two feet because of general clumsiness and not faint at the jolting pain that I used to have
-grocery shop
-go to festivals and concerts and never ever ever have to think about pain or be jealous that other people were pain-free

Basically, I have my life back. The life that EVERYONE deserves! If you don't give NSD a solid try, then pretty much I feel sorry for you. By solid try, I mean at the very least 3 months. 6 months if you're determined, 1 year if you've noticed results, forever if it works.

SOME MORE POSITIVE THINGS: I've started reintroducing starches into my diet with no negative consequences. Either I've put myself into a long (hopefully long-lasting) remission, or just completely re-booted my system. So much so that I've GAINED 5lbs! OH THE HORRORS. Oh well. But yeah. So for a year, yeah I pretty much ate next to nothing. But the payoff was/is worth it.

Sorry to be blunt, but do it or forever be on pain or on meds. Your choice. Life is a right c*nt then you die. Make the most of it. The end.

<3
Lauren
_________________________
Lauren S.

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#492751 - 08/04/13 04:03 AM Re: Hi my name is Tim and I am a NSD success story [Re: ]
raj Offline
Active_Member

Registered: 08/15/07
Posts: 57
Loc: India Mumbai
Hi Manju
Being vegetarian I have a very few veg options of food with me...please share your diet plan if you are following any.
_________________________
-Raju

--Diagnosed with HLA-B27(By PCR method), Pain since last 15 yrs. Looking for suggesstions & important advices here!

-Every morning I wake up only because I look forward to spending another day with my princess- my Wife! Will love you forever and ever.....
--------------------------------------------------------------------------------

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#493247 - 08/15/13 03:02 PM Re: Hi my name is Tim and I am a NSD success story [Re: Dotyisle]
BillH Offline
Second_Degree_AS_Kicker

Registered: 04/18/08
Posts: 217
Just an UPDATE!

Still here - still on NSD, what has it been like 5 years or something? Not sure.

Diet still working very very well, along with exercise I am at 99% reduction of the disease unless I eat the wrong thing, which happens once or twice a month but only causes some mild pain that lasts for a half day at most. Sometimes I will get some pain when sleeping but as long as I sleep inclined it is either gone or mostly gone. Some days I can sleep in for 8-9 hours of total sleep which is very nice when I have the time smile

I am a bit less sensitive than I used to be, having the occasional chocolate and whatnot is OK, having lots of cheese is OK (but not every day or it will cause a small amount of buildup) - lots of eggs are OK (they made things worse initially)

I have found the perfect way to get vitamins/minerals via the following -

dessicated liver powder
vitamin d oil filled capsules 5k-10k daily
Magnesium Citrate 400-1000mg daily
vitamin c powder as I feel like it
Niacin, flush type, 500mg to 1000mg before bed (good for a number of reasons)

I avoid having veggies every day as that will cause a slow buildup of pain but every other day seems fune for now. Sometimes I OD on cherry tomatoes and pay a small price but for the most part they are OK to eat as well.

I exercise ALOT, like 5-12 hours a week and I am looking forward to my first real cycling race in a few months (a time trial) - so I am doing some serious training for that.

my facebook if you are curious - https://www.facebook.com/bill.hammond.528

I can honestly say that I am BETTER off now than I was before I had symptoms of AS. Thankful for all the people here and the information I have received. I also have to thank the good Dr. Ebringer - whom I had a couple of good email conversations with a few years back.
_________________________
**************** Really Feel life. Every second. One breath and one sound at a time. Joy is always there, waiting on the other side of your mind.

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#493653 - 08/23/13 07:17 PM Re: No/Low Starch Diet Success Stories [Re: bea_arthur_itis]
bea_arthur_itis Offline
Fifth_Degree_AS_Kicker

Registered: 09/01/09
Posts: 389
Loc: TX,USA
I don't come around here anymore-I had some PMs asking me about diet. I myself didn't keep up with it. John told me about Roadback.org and have been on low dose flagyl and zithromax for a few yrs. I was feeling almost perfect until I had my blessed baby, Audrey, but she is so worth it...now some minor pains have set in but I restarted abx....I work out 3x a week. I still have minor pain and stiffness, but not too bad. Just wanted to update. Hope that helps...email is zardi@sbcglobal.net..coming here was just too much for me, like a mind over matter thing. It made me feel worse. I guess I internalize other people's pain... I miss some of you!!! Hope you are feeling ok!-8/2013.
_________________________
Trying to keep myself away from me!
On low dose flagyl for over a year,(went on it Jan 2010) found my doc (thanks to John's advice) on roadback.org. I couldn't sustain diet anymore,but thanks to God and flagyl, I forget I have AS most of the time and run every day! smile

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#494367 - 09/05/13 11:31 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
DragonSlayer Offline
AS Czar

Registered: 09/05/01
Posts: 5989
Loc: Reno or SFLU Philippines
[submitted via Professor Ebringer 05 September, 2013. Patient diagnosed with "Pre-AS" and hopes to never advance to radiographic changes, characteristic of AS.]

Ms. Innica Halsey writes:

In 1998, I had an episode of sciatica with pains going down my left thigh. A “magnetic resonance imaging” (MRI) test showed a slipped disc which was then treated by physiotherapy.

Some six years ago, in 2000, aged 27 years, I worked as a Secretary in the Department of Rheumatology at the Middlesex Hospital in London. Occasionally I had to type some of the letters Professor Ebringer was sending to doctors about their patients who were attending his “Ankylosing Spondylitis (AS) Research Clinic”.

After I had typed several letters about the AS patients, it struck me they had similar complaints and symptoms that I had suffered from for several years.

They all seemed to have backaches, morning muscle stiffness and some relief after exercise. I had suffered from similar symptoms from the age of 15 years but they were never severe enough to go to a doctor, apart from the episode of sciatica. I dismissed the symptoms as due to stress or overwork and occasionally took some pain relieving tablets such as aspirin.

I mentioned my symptoms to Professor Ebringer and he agreed that the clinical presentation resembled what he had observed in some of his AS patients.

He organised a blood test for me and it showed that I was HLA-B27 POSITIVE. He provided me with a sheet describing the “London AS Low Starch Diet”. I drastically reduced my intake of pasta, of which I was particularly fond of and also consumed less bread and potatoes.

To my surprise, my backache eased and eventually disappeared. The morning muscle stiffness became less prominent and generally I felt better. Nowadays, I eat what I like, but if the backache comes back I reduce my intake of starch.

I think I can control my condition by careful attention to what I eat and exercise. I certainly do not want to become an AS patient.
_________________________
Important AS Resources

Professor Ebringer: On Diet and AS;


RED ARROW --> Philippines

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#494369 - 09/05/13 11:48 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
DragonSlayer Offline
AS Czar

Registered: 09/05/01
Posts: 5989
Loc: Reno or SFLU Philippines
[Suppose I can post mine now--but beware...it IS long and BORING]

This is DragonSlayer's, "Long, boring AS Story:”

“ In 1971, aged 21 years, I began having sciatic pain. I was diagnosed with Ankylosing Spondylitis (AS) in 1978, about seven years after onset of my symptoms. I was HLA-B27 positive, and had the characteristic SIJ fusion.

Initially, I had very severe sciatica that would come in waves and I complained to my physicians about right side buttock and thigh pains. These would then switch to the opposite side. The sciatica was so intense at times that I could feel it even past my knees, and along the outside of my calves.

Within a couple of years, the sciatic pain spread to the lumbar area and this lumbago was so severe that at times I was unable to get up from a chair normally, even after only sitting for a few minutes. Soon, I was not able to get out of bed, except by first sort of falling out and crawling onto the floor. I had to have a very hot bath in the mornings. I would crawl into the tub to soak for a couple of hours before I was able to move enough to go to work.

Sometime later I contracted pneumonia, and had severe ribcage pains upon coughing. About a year after recovering from this, I developed pleurisy of a strange sort in which I became unable to swallow. Within a week, I was taken to the hospital due to dehydration and for evaluation.

At this time, my AS symptoms relented somewhat and I was able to make the connection that fasting helped to control my symptoms of whatever yet-to-be-named disease I had.

My very core would always become painful, and I was unable to turn my body in any swivel motion, or bend over properly, without flexing my knees. Although I did not work in a physically demanding job, it was still very difficult to keep up to a demanding career in electronics with the continuing education required to remain current, along with the demands of family obligations.

Colleagues wondered why I spent so much time at work. It was not the work that was especially wonderful or even my home life that was terrible although later it became so, but I looked forward to the very act of walking out into the parking lot and getting into my vehicle with extreme trepidation. Such simple tasks were torture.

The doctor prescribed a drug called Butazolidin alka (phenylbutazone), but it did not seem to help me very much, and I could not stick to taking pills at that time, so I did not give it an honest chance.

He never told me that he suspected Marie-Strumpell’s disease, and even if he had it would not have meant very much to me at that time. Soon after taking this drug, I developed asthma, although it may not have been directly related; this is the timeframe.

The first attack was quite severe, the result of standing at the edge of a mustard field with the wind blowing in my direction but the asthma did not recur every allergy season, and would usually skip several years. I also noticed that I could reduce the symptoms by drinking potassium chloride, but I could trigger the asthma by eating either macadamia or Brazil nuts. I was at a party where macadamias were offered, and I had to look around for a banana before eating even one nut as an experiment. That asthma attack was somewhat moderated by the potassium in the banana, but it was still there, waiting to pounce.

Eventually, I joined a health club and spent nearly all of my free time there, soaking up what I used to term “BTUs or British thermal units”—it was the heat that helped very much with my mobility. Alternating hot and cold baths relieved the pains, to some extent. In that environment, I met others with various forms of arthritis and they were usually the last ones to clear out of the sauna every night.

One fellow in particular, seemed to understand what I needed to hear and do, and when. He was a student of the Edgar Cayce materials. We studied together at his home, not too distant from the health club. Through fasting and some workouts, I brought myself to a point where I was able to jog. However after doing a few miles on one especially cold night, I was going to have dinner with my jogging partner and he dropped me in the parking lot because I was rapidly freezing up at the hips, and could only “ambulate” by sort of throwing one leg in front of the other and pivoting forward. The next day at work, a girl told me she had seen me at that restaurant: “You looked plastered!” I had to explain to her that I was not drunk, but had just been jogging and could not walk after that.

About this time, I also met Dr. Max O. Garten, who encouraged me with respect to fasting. I had already been on a 20 day water-only fast which resulted in a level of remission that allowed me to begin running again in earnest. I did several 10K local runs, one even on day five of a seven day fast. I was able to begin playing racquetball regularly, after once previously trying to pivot at the trunk this way, and then doubling over in excruciating pains.

I began water skiing, then snow skiing. I spent more and more time at lifting weights and worked with some power lifters on the machines, but was still unable to fully switch to live weights, since I had lost too much muscle control to the disease by the time I was finally diagnosed.

Initially, after the AS diagnosis, I participated in an NSAID study and spoke to the physician who was coordinating the investigation. It was my own logic that made me suggest that if the pains were decreased, the disease activity or progression should also decrease accordingly. This doctor was much wiser than that, and suggested that although the pain might be reduced, this could be the result of something unrelated to the disease. They wanted the proof, either way. I must have gotten the placebo, because the pills had no effect against my pain or progression of this disease. The fusing process had begun, with sacro-iliac joints already involved. My doctor monitored my ESR, which began to increase and tracked the disease activity, to some extent. At one time there were encouraging results and he asked me the reason. So I told him that I had been fasting and was more careful with what I was eating, which was true. Since I had become a vegetarian and found some minor relief, but more importantly, I had been fasting. He BOOMED “There is NO DIET for arthritis!” and I knew that I would not be visiting him ever again.

There was a girl I was quite fond of, and she married a good friend and we remained very close, as she began having health problems, soon discovering that she had Crohn’s Disease. I spent hours studying this condition and found that this was more likely in persons who smoked, an unfortunate habit that I encouraged her to eliminate. After reading more about Crohn’s, I discovered it mirrored my own disease, except for the terrible bowel strictures. I saw this lovely young girl suffer terrible pains and one indignity after another, finally having the colostomy and perhaps all due to the habit she could not extract herself from. This was an early lesson for me, because I had my own habits, related to AS, that I could not so easily overcome.

Chiropractors know much more about nutrition, supplements, and herbs than most doctors, I suppose that the chiropractors really have to know more about diets, since they cannot prescribe drugs, so rely upon natural things.

I tried almost everything then available: High colonics, chiropractic adjustments, cranial plate alignments, radio-frequency heating, ultrasound, dietary cleansings, coffee and seawater enemas, prayer, Reiki massage, meditation, acupuncture, herbs, craniosacral adjustment, eliminating sugar, eliminating soda pop, every supplement and free-form amino acid, psychics, and aerobics. Nothing was ever nearly as effective as simply going without all foods.

After fasting, I would always feel better, but the pains would creep back and immobilize me once again. Shortly after diagnosis, I had a severe episode or flare-up only hours after eating some fried rice. I found that most fried foods could trigger a flare, but especially fried onion rings. It took me many days of fasting to recover from these flares to relent and enough to get me back to some normality. Tempura, French Fries, falafels, a vegetarian’s perfect food, and papad a fried Indian bread. each of these delicious foods, made me flare-up significantly. After one such meal, I developed extreme shoulder involvement, which was bursitis with adhesive capsulitis and excruciating pains. Just the lightest touch on my shoulder would result in sharp pains, and when I broke off the head of a screw while under great torque, the sudden jarring sent me on a berserk-like pain rampage. It ached for many days on.

I often had waves of deeply aching pains that lasted for many days. I was still going to the chiropractor, and she was a bright and funny German lady, large enough to get movement from my too stiff bones. When I fasted, however, she commented on how much more mobile I had become, wondering why and I informed her it was the fasting. Another of her patients had rheumatoid arthritis, and she suggested fasting to her. The suggestion was received with “Are you trying to KILL me?!!” When I returned for a treatment, the chiropractor related to me in her characteristic Teutonic inflection and cadence: “Zot fot fot vooman, auch! She couldt fast for a MONT—und she shouldt!” I was not aware at the time that there might be an entirely different diet for rheumatoid arthritis.

Despite everything I had tried, my hip bursitis increased to the extent where I was unable to walk. Sometimes after I had tried forcing myself to put weight on my left leg, odd rectangular-shaped blood patches or hematomas appeared on my upper thigh. Although I had been very anti-drug up until that time, AS began affecting my work, so that I relented and finally gave in to the quacks’ poisons. Within three days of taking Clinoril (sulindac), I was once again able to walk, but after two weeks I developed severe stomach pains and passed only blood upon going to the toilet. In an attempt to avoid a trip to the ER or Accident & Emergency sections of the hospital, I took about three handfuls of myrrh resin, and, exhausted as usual, went to bed. Upon finding myself alive and awake, I resolved to avoid that same medication in the future, and began learning about hip replacements; I had visions of myself taking my mineral pick to the joint which has caused me so much pain and grief. One experienced old orthopedic surgeon told me that there were others who might do such a surgery for me, but he would never do this because I was too young and he believed that I could somehow heal my hip because bone is a living tissue. I continued to switch rheumatologists and NSAIDs, but ended up with some extreme gastrointestinal tract damage. I realized that, after extended fasting, I could again often do without the new drug Voltaren (diclofenac), but when used, it metabolized out rapidly whenever I did even moderate workouts.

By this time AS had cost me my family and many other relationships and a long-term one that had lasted 15 years. My regular career, a side business, a portion of my home equity was confiscated by aggressive tax collectors, together with the later equivalent of several millions of dollars.

It has been said that, sacrificing your health to your job, no matter how hard you work and how much you are paid, there is no way to earn enough to buy back your health. The financial losses constituted the least of my regrets and pains, but there was more AS-related terror to come, for soon I developed kidney stones and then iritis and risked losing my eyesight.

Prior to taking NSAIDs, I had never had either kidney stones or iritis. The doctors would suggest that these were just conditions that resulted from advanced AS; they did not then understand the damage caused by NSAID’s.

Studying the Edgar Cayce material, I had found that his biographer, Thomas Sugrue, probably also had AS but they attribute his illness to some reactive arthritis. His symptoms were nearly identical to my own, but I had incorrectly reasoned that between Cayce’s era circa 1920s and ‘30s and fifty years on, medical science would have advanced beyond the frustrating suggestions in the Cayce readings for arthritis. Cayce told Sugrue that, regarding his disease “Diet is EVERYTHING.” And “…eat more vegetables that grow above ground than below, and if eating potatoes, eat the jackets and throw away the pulp!” I also mistakenly thought that “modern” medical science had even progressed beyond Giraud Campbell’s regimen of MEAT, MEAT and more MEAT and NO STARCHES, especially my daily bread. I never wanted to believe these things, so I relied upon my physicians’ advice, instead.

I began doing some consulting work, and one project demanded that I travel to India. While there, I was seen by The Hakim (doctor)—Sayed Hamid founder of Hamdard Corporation and then head of Aligarth University. He was 92 years old then, and came in, speaking only to my hosts, but he took my pulse for many minutes, then wrote out a prescription we filled at the on-site herbal compounding chemist. As we exited The Hakim’s offices, one of my hosts acted hurt, saying to me “John…do you know what this man has said.” I replied in the negative, observing and reminding him that I do not speak Hindi. “URDU!” “He told us that your mother is long dead and you have an older sister and a younger brother!” I curled my brow, but told my host that Hakim Hamid was exactly correct. “WHY have you not ever mentioned your brother to us?” I had to explain that my brother was a paranoid-schizophrenic, and it was too difficult to communicate with him, so I stopped trying. Certainly, I hold him no ill-will for his condition, which I believe is the result of in-womb abuse; my mother smoked and drank during her pregnancy with him in the late 1950s. She was a “registered nurse” (RN), and also had a medicine cabinet full of pills that did her no good at all. She expired only months after her 42rdbirthday. I wonder now whether her early demise could have been as a result of heart-related AS complications in combination with her terrible lifestyle choices, making it further difficult if not impossible to diagnose, with certainty, her condition.

The herbal pressings prescribed by the Hakim did not seem to do much right away, but soon I had other, more severe complications of “Delhi belly” to add to my misery. This severe episode of enterocolitis had me flat in bed for nearly two months. My hosts brought me medicine after consulting with the local chemists, and although I began to get a little better, it was fully two months before I could stand up for very long. The normally, obnoxious noises of New Delhi mornings, on one morning in particular, became the sweetest and most angelic music I could imagine. My ears had cleared, and I heard the bell of one of the recyclers ringing crisp and distinct, and I knew that I was going to survive. I even began feeling great, and went on long walks in the Saket District near Qutub Minar. On one occasion, I was being yelled at by some vendor, or so I thought, but when he came running up to me, he asked “Don’t you recognize me?!” YES, it was the owner of the best Indian restaurant in the San Francisco Bay Area—“Swagat” in Milpitas. Patronizing his establishment often, I certainly brought them a lot of business, since my company was also located in that same city. Out of a billion people, he recognized me, mostly due to the fact that I had a severe hunchback or kyphosis, thanks to AS. I also had zero articulation or rotation of my head, so cannot turn around to scan who is there.

Later, I moved to Simla and had a constant supply of food consisting of of pooris, a puffed Indian bread which comes with curries and the occasional dosa or pancake, but what really did me in was my birthday dinner of mayonnaise sandwiches with dill pickles. I got myself into a major flare-up or relapse , and could not understand why until much later, in retrospect, after learning the cause and best treatment for AS. I initiated a week long fast, to the chagrin of the cook assigned to me. At nights I had been hearing what I though was a woman in distress, but one night while fasting I was called out of my rooms with shouts of “SHER!” and I witnessed a snow leopard, bounding away after trying to peel off the tin shed roof to get to the pet dog kept by my hosts. A graceful, beautiful creature turned its head to gawk at me, without breaking stride.

By the time I returned to the US, the internet had become a more solid and reliable tool, as I had expected, and new search engines replaced the old code-heavy crawlers. One of the first things I typed was “ankylosing spondylitis,” and I found a support group founded by a patient with severe disease and wheelchair-bound. It was “Brian’s AS-web” and soon Brian was unable to keep up with basic site maintenance, so we contemplated starting another website.

The discussions on the old site were at first commiserations and drug comparisons, but I had mentioned my fasting experiences and the fact that fried foods caused flare-ups or relapses. I had wondered whether others had similar experiences. Most were totally lost, as most patients are to this very day, but one—George McCaffrey, an Englishman—was able to tell me the story about starches. He was gracious enough to send me technical papers written by his rheumatologist in England, Professor Alan Ebringer, and his colleagues. What I found out, through those many pages of difficult jargon, absolutely supported my many observations and the big flashing billion candle power strobe went off over my brain, along with high-decibel audio alarms: We FRY starches. FASTING reduces all gut bacteria.Antibiotics kill E. coli that cause Delhi belly, but also the K. pneumoniae that cause AS. The final connection: AS is CAUSED by a bowel germ acting across a membrane, the gut epithelium, which is too permeable and NSAIDs make this membrane even more porous, sometimes even causing bleeding and occasionally even death. The suddenly obvious explanation as to why my AS symptoms increased, and I had become hunched-over and fused within five years of starting these drugs, is that they damaged my gut enough to allow more bacteria to cross through the gut barrier, and trigger my too-familiar autoimmune reactions. This germ is a survivor that blooms exponentially in the presence of starches and the more of this bacterium, the more will make it across.

The problem was that, as a vegetarian, STARCHES were my main source of food; they were MY addiction. I tried to remain a vegetarian, but that only lasted about a year before I was too close to getting diabetes to keep my energy levels up. I met George during this transition, and although his ESR had been over 100 (Normal range 1-20) in the same year as my own, he had almost no kyphosis, yet I was very hunched over. The difference was that he had been on Ebringer’s “London AS Diet” for the previous ten years, while I had been eating starches and taking NSAIDs during that time. I recognized how important Ebringer’s papers were, so tried to some extent to reduce them to layperson’s terminology. My first attempt was “AS Dietary Primer,” but people were not flocking to the diet in droves, although one of the members from Spain translated it into Spanish, so I began hearing from fellow patients in Spain and Mexico. And the site freetranslation dot com has been wonderful and very accurate--enough to help many people.

There was much dissention on the website—people did not welcome the news that they would have to change so much about their lifestyle; there HAD to be an easier way! “PLEASE don’t tell me I have to give up food—it’s the only joy I have left in life!” It was difficult, and we had all-out battles that got rather personal.

Simple starch-exclusion did not work very well for me at first, only just well enough to let me know that I was on the right track, so after a couple of months I began taking antibiotics. First it was a week before I could again walk without pains, but it took yet another six months cycling through antibiotics and the strictest diet before my costochondritis totally relented. During the next year and more, I kept improving slowly, and I studied which foods to eat and which to avoid. “Let thy food be thy medicine—and medicine be thy food,” as Hippocrates is credited with saying. I worked up my own antibiotic protocol (AP) for AS, after consulting with many microbiologists and scientists at several universities I had access to through my consulting businesses, and had already met many students and faculty members, especially in the data-intense medical fields. Copies of the technical papers authored by Ebringer, et al were given to key individuals, and soon I had enough new supporting data to reinforce what I already knew worked, and by then many people had great results with dietary restriction of starches but I observed a funny thing: Every single scientist working in academia, when confronted with the Ebringer information, agreed with the conclusion about the cause of AS. However, almost every doctor, and especially every rheumatologist, is totally dismissive, if not outright derisive of diet and none invested any time to even try to understand the AS mechanism which is adequately explained by Ebringer and coworkers. There was a long battle ahead, but we obtained some financial support, and I was able to correspond with many people, all over the world, and they had fantastic results.

George not only helped to fund the KickAS.org website, but also several seminars, bringing both Professor Ebringer and Carol Sinclair out from England to teach those of us who are interested. Carol does not yet have fused sacro-iliac joints because although she has AS and her father was severely hunched over, her primary symptom was “Irritable Bowel Syndrome” (IBS) and she, discovered, independent from Ebringer, her own “very low starch” diet. It is the wheel being discovered over and over again: At least six independent researchers and patients have published about the starch connection with AS, and many others have published about grains and other foods that cause or exacerbate inflammation.

The founder of KickAS, Pete, was able to go starch-free for a few months, then low-starch for perhaps a year, and, as we both believe, since he had never taken any NSAIDs, except for the odd aspirin for headaches, having watched his father die from these drugs used to treat AS, healed his intestinal tract enough to backslide into a near-normal diet with no consequences of AS. This is the opposite of what happens to many of us who become more sensitive to smaller amounts of starch at first, and must even eliminate dairy foods.

Almost feeling TOO good, I broke my back while hanging a front door, so required Harrington rods, to be inserted into my lumbar spine. Later, I fell down the stairs at my house and was unable to get my chin off of my chest, always looking as far forward as the tips of my shoes. I consulted a neurosurgeon and he showed my pre-op X-rays to his colleagues who all thought they were medical curiosities, since I was obviously dead; I had a 93 degree bend in my spine!

I was suggesting to him that I thought my bones were in pretty good shape, since I had been on the starch-excluding regimen for many years. After my 20 hour surgery, a record for that hospital, he complained that “…drilling into your spine was like drilling into wet drywall.” I was in a halo for a couple of months after my C7 cervical vertebra was totally removed and C6 shaved at an angle so that I could look to the front once again. Much bone paste was squirted into my spine to rebuild it, but I required mechanical brackets on each of the other cervical vertebrae. Then I noticed the lower back pains once again; perhaps I re-broke my back during the tumble down the stairs.

AS is a runaway freight train, difficult to stop and impossible to predict exactly when and where it will stop, even when diet and the correct drugs can be employed.

Today, I can eat some limited starches but AS is not finished with me, for if I eat too much starch or bad food combinations, I will get the familiar pains of temporo-mandibular joints (TMJ) or my iritis will reemerge and then I take antibiotics and fast or become much more strict with the diet.

Dieting, over the previous nine years, is certainly not a placebo. When I am hit with unexpected sources of starch, often in commercial salad dressings that I have not tested with iodine, but sometimes in supplements, I begin getting AS symptoms again. I am resigned to the fact that the drugs have damaged me to the extent that I might never be able to eat a normal diet again. Staying symptom-free is well worth this small sacrifice: I eat to live, instead of live to eat.

Before the strict diet and antibiotics, I averaged at least three kidney stones and between one and two severe episodes of iritis annually. I had constant severe ribcage pains, terrible heel spurs, hip bursitis, TMJ, and even shin splints. There were days I was disappointed that I awakened, and when a close friend died I told another friend in common that I wished it had been me, instead.

Since then, I have not had a single kidney stone, my asthma is totally gone, and I have had only one episode of iritis, when I ‘experimented’ with “natural” antibiotics in 9 years, and one episode of knee edema at the same time. No costochondritis, no plantar fasciitis, no periostitis, two minor episodes of TMJ and one of bursitis when antibiotics I began taking were not active, but the situation was rapidly corrected by taking known good agents, samples of which were retained for just such an eventuality.

I have remarried, and my new wife demands that I remain healthy, so I have her constant support in eating correctly. The only pains I now have are from existing damage, although I know that AS is not done with me, and had I not become informed and acted upon Ebringer’s work, AS could have claimed my heart and my dignity. (I have read that Cauda Equina Syndrome is especially nasty). Annie, my wife, is from The Philippines, and we built a home there and remain actively engaged in helping some of those less fortunate people in the area of San Fernando, La Union, who now have trouble meeting even with their basic necessities of life. I certainly saw too much of this while I was in India. Also I maintain an active correspondence around the world with other people who also have AS and are interested in treating this disease using diet or better drug choices. I regret very much that doctors are so dismissive of the power of diet to control AS progression, which has been proven even before Ebringer and coworkers, published their compelling data. It is terrible to find out that rheumatologists are even today just as clueless about AS as they were so many years ago when they offered me the damaging drugs and terrible diet ‘advice.’ I have found out that Ebringer’s work is appearing in newer textbooks, so perhaps future generations of physicians will adjust their thinking, since I am certain Max Planck’s axiom will hold: “A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, and a new generation grows up that is more familiar with it.”

In view of the fact that diet, and specifically starch, has been linked with AS over the past seventy-five years by at least six separate and totally independent observers, even to the point of publication, I have my own modified adage: “Those who decide to remain ignorant about basic statistics are condemned to become one.”

Beyond any other regret I have in my life, I most sincerely regret ever taking my first NSAID! These drugs allowed me to continue eating starches, only reducing the pains while my bone damage, and especially intestinal damage, progressed unchecked and mostly unnoticed. At least before NSAIDs, when I needed to fast, the mechanism causing the AS was arrested, if only temporarily.”

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#494562 - 09/09/13 08:00 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
DragonSlayer Offline
AS Czar

Registered: 09/05/01
Posts: 5989
Loc: Reno or SFLU Philippines
[Another submission via Professor Ebringer]:



Mr.Brian Lundy (County Kerry, Ireland) writes:

Wednesday 21 September 2005:

Dear Professor Ebringer,

I am writing to thank you for your research and AS diet. After being diagnosed with AS approximately fifteen years ago and being pretty much in constant pain of varying degrees, I discovered your research and diet, only a couple of weeks ago by chance. Since being on the starch free diet with the aid of the book “The IBS Low Starch Diet” by Carol Sinclair, I have been pain free, for the first time in 15 years, apart from a couple of mistakes foodwise on the starch front. It is early days but I just wanted to thank you.

I have suffered quite badly over the last 2 years, with much increased pain levels and worsening physical restriction. I have always exercised and kept fit pre and post AS. But the pain was beginning to win and I was slowly giving up the fight. Your diet has given me new hope, and put the fight back in me, which I cannot thank you enough for.

My only regret is that this research and diet was not mentioned to me by any of my doctors or consultants over the years. I feel this information would have drastically altered my quality of life for the better. But regrets are pointless and I am just happy that I am still young enough to enjoy a renewed quality of life in the present.

I am sure you get many letters and e-mails of this nature and cannot reply to all of them. So please do not feel obliged to reply. I just wanted the opportunity to say “thank you”, although a simple “thank you” does not convey how much of a difference you have made to my life.

Kindest Regards, Brian Lundy (County Kerry, Ireland)


Monday 25 September 2006:

Dear Professor Ebringer,

I began your “starch free diet” just over 12 months ago and I am delighted to report that I have been able to manage without taking any NSAID’s (Non Steroidal Anti Inflammatory Drugs) for the last two months. I only take over the counter painkillers, such as Anadin when the need arises.

My doctor or G.P. (General Practitioner) is amazed and has all the research papers that you sent me. He has been recommending your diet to other AS patients, especially those who are HLA-B27 positive like me.

My quality of life and energy levels have improved dramatically thanks to your diet. Just prior to beginning your diet, my pain level was at a chronic level, which forced me to look for some new research into AS, and luckily I came across your diet at that worrying point in my life.

Thank you and God bless you. Brian Lundy.

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#495217 - 09/22/13 02:28 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
Steven_Smiles Offline
New_Member

Registered: 12/24/11
Posts: 14
Greetings Folks,

I've made a YouTube video talking a little about the diet I settled on to put my AS into complete remission. Here it is: http://www.youtube.com/watch?v=qvgjJTLrM3M

Love,
Steven

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#496830 - 10/31/13 04:13 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
Th0mas Offline
Lurker

Registered: 10/29/13
Posts: 1
Hi there.

I`m a 29 year old male, and have recently been diagnosed with AS. I have been in pain for some years now, but these last 3-5 months have been extra painful.

Found out about the low starch diet, and I have only been avoiding starches for 3 days, but already I`m noticing dramatic improvements.

I have 3 areas of pain: lower back, butt, and upper back. Lowerback pain/stiffness and the pain in my butt is almost entirly gone today. It was also a lot better yesterday. Upper back pain is still there, but I suspect there are a lot of trigger points there, so many the diet doesnt fix that.

It`s only day 3 and I am stoked!!

I will continue the diet, and report back after a couple of weeks.

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#496866 - 10/31/13 03:48 PM Re: No/Low Starch Diet Success Stories [Re: Th0mas]
DragonSlayer Offline
AS Czar

Registered: 09/05/01
Posts: 5989
Loc: Reno or SFLU Philippines
WELCOME, Th0mas:

The diet is a bit of a rocky road, but at least it is the right one! Please do post long-term results and be extra-careful of 'stealthy' starches (hidden where we least expect it), and when in doubt, whip it out (the iodine). And NO (starchy) REWARDS for good behavior--tempting as it is: This might come after several years, but hope You will decide to get and STAY in remission.

HEALTH,
John
_________________________
Important AS Resources

Professor Ebringer: On Diet and AS;


RED ARROW --> Philippines

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#497264 - 11/11/13 12:18 AM Re: No/Low Starch Diet Success Stories [Re: Hippiehiba]
bettyrawker Offline
Magical_AS_Kicker

Registered: 03/12/12
Posts: 751
Loc: Oregon
oops, the post I replied to was moved....


Edited by bettyrawker (11/11/13 12:53 AM)
_________________________
I'm now a KICK AS (and Kick IBD) success story!! After going low starch Paleo to heal my gut, I can now eat nearly all starches, grains & foods without inflammation, flare-ups, or pain. I used a modified SCD diet approach (minus dairy! plus cacao ♥). Cheers to healing & thriving again! I blog at http://www.forestandfauna.com/about/

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#497741 - 11/25/13 06:38 PM Re: No/Low Starch Diet Success Stories [Re: Steven_Smiles]
msnutrigal Offline
Member

Registered: 11/10/13
Posts: 30
Thank you so much for sharing your video....
_________________________
Kelly - newly diagnosed-attempting NSD- Fish oil, GlA, magnesium, Pro-biotics, mixed herbs-Vitamin K2/D3, .....on Simponi (hoping diet kicks in)!

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#499485 - 01/16/14 07:49 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
Bel Offline
Active_Member

Registered: 12/31/12
Posts: 54
Hi everyone

It's ben a year since my husband restricted starches (no potato, no rice, no wheat, no grains. We make soup broth and almond cookies from scratch. he eats lots of fruit. He has taken different nutritional supplements along the way, suggested by his alternative health practitioner. SHe has also suggested other foods he should give up, such as nightshades.

Several years previous to this my husband had given up tea and coffee as he had tingling in his fingers. This helped his fingers.

If you check back on my posts you will see cutting starches very quickly cut out the sacroilliac pain, which was his main problem. AS Dragonslayer hinted to me, the road was not to be as smooth as one hoped, but the sacro pain has never returned.

WHat did happen was the joints of his fingers started to swell and be painful. He also had a couple of episodes of iritis. His consulatant rheumatologist was concerned and wanted him to start Sulphasalzine. Naturally as my husband was not on any medication (because of previous side effects) he was loathed to do this.

His diet practictioner then looked at his diet again and suggested we cut out salmon, loch trout, sea fish because of the effects of concentration of pollutants from the sea may be affecting him. The only fish he eats now is fresh water trout.

SInce he has given up sea fish , the finger swelling has completely disappeared. RESULT !!

He is just feeling so much better now. Hope this helps you.

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#499487 - 01/16/14 08:33 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
marion333 Offline
Second_Degree_AS_Kicker

Registered: 01/24/10
Posts: 225
Loc: France
That is a very interesting post thank you !!
I have peripheral joints swelling too (mostly wrist), I'd heard about trying to prefer wild caught fish over farmed but what you mean is it's better to actually prefer fresh water (river or lake) over sea water ?

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#499491 - 01/16/14 09:18 AM Re: No/Low Starch Diet Success Stories [Re: marion333]
Bel Offline
Active_Member

Registered: 12/31/12
Posts: 54


I also was listening to a radio programme (where they were interviewing a university researcher,) about seals getting uterine cancer from eating salmon where the concentration of toxins multiplied into the fish fat. It has really put me off salmon. Only an occasional treat from now on.

I think you need to look for fish farmed in spring water or a clean river. I would imagine lakes not as good as a river. The kineisiologist said that the seas are accumulating toxins, so older fish are worse than younger, shallow water worse than deep sea fish.

We eat organic meat whenever possible. WHat ever the animal eats affects the quality of meat produced.In England we have lots of grass fed meat which is healthier than feed lot cattle common to USA.

Our food bills are probably nearly twice as high as they were. The price of good health I guess.

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#499618 - 01/19/14 09:33 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
Anilcia Offline
New_Member

Registered: 01/19/14
Posts: 2
Loc: Lithuania
Hello everyone. I'm here because of my husband. And I'm not sure if this is the right topic to write. My husband was diagnosed with AS 10 years ago. The past years he was on sulphasalazin. He does not feel pain, only after a long walk in the left hip. He has limited movement in neck, back and especially in leg hip (thinking about replacement). This week he went to see his rheumatologist and she said the AS is progressing and she recommends to switch the treatment for methotrexat and biologics. We both were very anxious about the bad news and I started to search for information and found the new thing for us about what causes AS. I'm very happy that I've found this site and all your comments, especially your success stories with the NSD. Today is the 2nd day with this diet and I'm worried only about one thing - how do my husband know that it's working as he does not feel pain (now he does not take any medication, he is waiting for the new biologic treatment). Sorry, I didn't have time to read all comments.
I'm not testing products with iodine. Haven't got yet. I'm referring to the product table I've found in this site.
I have so much questions. I'm not sure for the recommended new treatment. Maybe it will not be necessary if new diet works. I'll be very thankful for your answers.

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#500835 - 02/20/14 07:23 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
DAMIAN Offline
Lurker

Registered: 02/13/14
Posts: 1
My name is Damian, just started the diet and I have amazing results after 1 week! AS stared with me when I was 12. Massive pain in my lower back no one could diagnois. Contracted vitiglio and ulcerlative colitis at 14. After a total colectomy at 16 years my AS began a massive flare up. Again going from doctor to doctor was on steroids to NSAIDs . Finally I was diagnosed with AS at age 26. I've been on enbrel for some time and this seemed to do the trick. But so many side effects I need to get off of it. Now I have a chance. I am well disciplined and will stick to the diet. I can tell it's working after the first week. I can't wait to start my life over without meds. It's only been 28 years of hell.

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#501224 - 03/08/14 02:25 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
TeenyBee Offline
Active_Member

Registered: 10/07/12
Posts: 69
I would love to see more diet logs of what u all eat. It would be very helpful to newbies

Anyone dealing with Candida and other pathogens too? Histamine intolerance? How Are u addressing these?

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#504516 - 06/23/14 03:04 PM Re: No/Low Starch Diet Success Stories [Re: JeanneMedina]
Dreamer Offline
Member

Registered: 05/28/14
Posts: 42
Loc: Arizona, US
Hi Jeanne. I don't know if you're still on this site, but I'm curious: how did you confirm that candida was in your system? I think I MAY have it as well.

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#504960 - 07/11/14 04:33 AM Re: SUCCESS [Re: jayz]
Debabrata Offline
Lurker

Registered: 07/09/14
Posts: 1
Loc: India, Kolkata
Hi,

I am suffering from AS since 2007. Nowadays lower back pain is killing me. I started Herbalife just a month back. Could you please tell me in detail - the products you are using and suggest / guide me.
Regards,
Debabrata

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#505318 - 07/22/14 11:09 AM Re: SUCCESS [Re: Dotyisle]
Songstress06 Offline
New_Member

Registered: 07/20/14
Posts: 11
HI ALL,

I was recently diagnosed with AS and would love some support and advice from those of you that have been successful! I just did a one day fast and don't feel much better, but am optimistic that the NSD will work for me.

Just wondering- how many of you react to the "fringe" foods such as garlic, asparagus, almonds, etc?

Also, I recently bought about $100 worth of supplements, only to find that a few of them have little bits of Maltodextrin or rice flour. I am having the same problem with finding Stevia, as most Stevia has Dextrose or Inulins in them.

Just wondering, should I completely cut out these supplements, even if they didn't turn black with the Iodine test?? Some of them stayed a brownish red, so the amount must be very small. The only thing I can't cut out is my Thyroid medication, which I need, and does have a tiny bit of starch (but didn't turn all the way black).

Also, I had seen in one of the forums that Dexrose is okay and doesn't feed Kleb, and that you need some carbs in order to rebuild your stomach wall. I am guessing my best source of carbs will be fruit, all of which should be okay as long as I iodine test it first, right? Does anyone have experience with this?

Any help, encouragement, advice, hope and support is greatly appreciated. I haven't started meds and would like to avoid them but am in severe pain with Sacroiliitis. I seems that many have had results very quickly, so I am trying to stay optimistic!!

Thanks!
Mandy

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#505370 - 07/24/14 03:27 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
zark Offline
Colonel_AS_Kicker

Registered: 04/12/02
Posts: 2482
Loc: NSW, Oz
OK here is my story - it is a fairly long one. I will have to amend it sometime now that I am in remission and can eat some starch again, as this is not yet mentioned.


About me
I live in Sydney Australia, am in my mid 30’s, and work in IT. I kind of fell into this career as it was the easiest for me, you see my family has been in the computer business for as long as I can remember. Even at the age of 13 I was assembling and fixing computers we had imported in order to sell them to a chain of large retail stores. I loved working with my family and it wasn’t really a chore for me, I liked being around my parents and I think it brought us closer together, I got some extra pocket money, and I found it stimulating and challenging.

My early signs.
At about the age of 11 or 12 I started getting regular tummy pains that were sharp and moderately severe, and was having to leave class fairly regularly. Fortunately these went away after several months. Even at a very young age my body was prone to inflammation, most notably rhinitis (inflammation of the lining inside the nose) and chronic asthma. I was hospitalised at least once as a child due to the severity of asthma attacks, and I had to take regular medication to keep it under control. Likewise, chronic rhinitis has caused my nose to be constantly stuffy and clogged since childhood, so much so that I was forced to breathe through my mouth unless I took medication.

I started showing some early symptoms of Ankylosing Spondylitis in my mid-teens. The first symptoms I recall were foot pains and some toes swelling up temporarily (doctor called them “sausage digits”). Then a year or so later came hip pains and some mild stiffness. In fact I received some bullying & nasty insults because of that. Soon I noticed that the hip pains would go away when I was playing soccer regularly, and then would return during periods of relative inactivity.

In my very late teens I had a severe iritis attack, the first of many. The ophthalmologist asked about hip or back pain, mentioned that iritis is associated with AS and had me referred to a rheumatologist. Then came the gene test, x-rays, salazopyrin, NSAIDs (Non-Steroidal Anti-Inflammatory Drugs), etc. Things were fine for a few years and the NSAIDs kept me mobile and I seemed quite normal.

Yes, I am fairly sure the NSAIDs have permanently damaged my health. After about 5 to 7 years of using them I started to have weird reactions such as tinnitus (ringing in the airs), confusion, and symptoms similar to Sjögren's syndrome (dry mouth and eyes). The longer I used the medication the less effective it became, and yet the side effects gradually continued to get worse and worse. At this point I think I started to question the medical system’s ability to effectively treat autoimmune disorders. Eventually I reached a tipping point where I just couldn't tolerate the side effects of the drugs anymore and had to look for other alternatives.

The first clues on how to beat an immune disorder - root causes

Trials

It was my mother who mentioned people on some internet forum (kickas.org) and that they were using dietary measures to manage symptoms. I would have been between the ages of about 17 to 19 at that time and I "knew" for certain they were fools, after all how could diet have anything to do with it..? Well, I could have saved myself a lot of trouble if I hadn't been so arrogant (the saying "pride goes before a fall" comes to mind). That youthful arrogance has cost me a great deal.

As the disease progressed, the pain gradually became more and more intense. When possible I would try to do warm up exercises and stretches to help get the joints mobile, as that definitely helped with the inflammation. Given that the pain and inflammation would go up and down quite a bit, it was sometimes very difficult to do any form of exercise at all, and very difficult to keep a regular daily rhythm going.

It gradually became more and more difficult to walk, getting up out of a chair was an ordeal in and of itself, but once I got up and was mobile the inflammation and pain would typically reduce to a more manageable level. Even a small period of inactivity, such as 30 minutes, would be enough for the inflammation to set in and immobilise me. This made sleeping more difficult, and trying to get out of bed in the morning was an excruciating ordeal. I often needed assistance getting out of bed as the pain was so bad. Every time I coughed, laughed or sneezed I would be hit by searing intense sharp pains in my rib cage. It was like being stabbed with a knife.

I was in so much pain at one time in my life that I even considered that ending my life would be preferable to what life had in stall for me. Years of suffering that would only get worse and worse, and still worse, and I knew that eventually my body would become completely rigid such that I would need to be confined to a bed or a wheelchair. Surprisingly it wasn't the pain that caused the greatest despair - rather it was the loss of all hope for the future.

I find it curious that although it was my mother who had long ago mentioned the kickas.org website, where people use diet as a means to control disease, years later when I started to actually follow the diet she became very upset and even cried. Later my family could see the obvious improvements in my condition, even my sister who is a medical doctor said to me "the medical system has failed you" (because dietary changes had worked where drugs had failed).



The first clue - antibiotics
Bear with me on this one, it will become relevant later on. It was around June of 2002 that I was preparing for a trip to Malaysia and Singapore. I visited my local doctor in Kingsford and asked if there were any vaccinations that I would require before going. She recommended two vaccinations: one, an attenuated Typhoid vaccination, the other a Hep A or B vaccine (I forget which). Well, the attenuated vaccine I would later learn contains a live but weakened version of the Typhoid pathogen. A normal immune system probably would have had no trouble with it, however I came down with a cough within days of taking the vaccine. Being irresponsible and not realising it was anything more than a little bit of flu I went to Malaysia - despite the cough. However the cough didn't go away and continued to get worse and worse.

Soon I started to develop a mild fever and a feeling of tiredness and fatigue, then later came the red spots on my chest which are a classic sign of Typhoid. My friends took me to see a doctor and he prescribed an antibiotic and some cough syrup. Now here is the interesting thing - not only did the antibiotic stop the cough for the duration of the treatment, but my inflammation went away altogether! Now, as soon as the antibiotic course was ended I found my inflammation came right back. Dangnammit. Such a strange thing to happen, and why did the antibiotic have this effect? Well, I find it does fit well with the "Molecular Mimicry" theory I read on kickas.org. Oh, and not only did the inflammation return, but so did my cough unfortunately and that cough took many months to fully resolve.

When I returned home from my trip I explained to my doctor what happened. Fortunately my doctor at the time trusted me, and allowed me to try the antibiotic again. Unfortunately it didn't do a thing the second time round. The critter had adapted. But what I had learned from all this is that some pathogen must be playing a part in our disease.

Molecular Mimicry
Typhoid is a tough little critter, but not nearly as tough as whatever bug must be contributing to our AS. Whatever it is, the microbe is everywhere and going by research performed on rodents, it appears to live in them too. There is a rodent model for AS by the way, and sterile rodents do not show symptoms of inflammation until they are allowed to interact with normal rodents, i.e. exposure to normal microbial flora brings on inflammation. Klebsiella have the same or similar antigens on their cell surface as do those with the HLAB27 gene, and according to the "Molecular Mimicry" theory of autoimmune disease it is this similarity that causes the immune system to become confused and start attacking you in error.

The curious thing about the rodent model is that they need to insert the HLAB27 gene around a thousand times or so in order to get a decent inflammatory response. A single copy of the gene and inflammation from any cross-reaction with microbes such as Klebsiella is obviously easily modulated by a normal health body, which indicates to me that something more than molecular mimicry is going on. Some other system has failed also, and the question is what?.



The pieces of the puzzle fall together

Getting a tummy flu

I ate something bad and came down with some pretty nasty food poisoning at the age of 24. I wasn't keeping solid food down so I decided I would try fasting - more of my usual crazy, self-experimenting behaviour. I just wanted to know what a fast would feel like, as I had heard that certain spiritual people do it and wanted to understand why. I did drink water of course, I'm not suicidal. After hours of diarrhoea and vomiting there was eventually nothing more in my system. My gut was empty. I recall quite clearly vomiting one final time until there was nothing left and then within just minutes of clearing everything out the pain started dissolving away - it was surprisingly fast! I continued the fast for a while before eating and I have to say it was a wonderful experience. I think that the fact my digestive system was completely cleared out is what made the fast so enjoyable. I was happy, creative, my mind & body felt bright and effortless, had no hunger pains (drank plenty of water though!) Life like this was really a joy.

Obviously this was not going to be a long term solution though, and as soon as I started eating again the pain started to come back in a matter of hours. That was when the penny dropped and I realised something in my diet was causing me pain. I hopped on an internet forum (kickas.org) and mentioned this experience to others also suffering from my condition. To this "DragonSlayer" responded and pointed out that my experience illustrated the purpose behind the No Starch Diet (NSD) that he follows. He pointed me towards the appropriate sub-forum where the diet is discussed. Well, up until that time I had carefully avoided the "loonies" on that part of kickas.org. If only I had listened when I was younger instead of being so arrogant and closed minded.

So to sum all that up, I now knew beyond a shadow of a doubt that something in my diet was causing my inflammation and returning to my usual eating patterns brought back the pain. Hope returned, now it didn't matter how much pain I was in, I had something to fight for.
_________________________
what I can eat on the diet (click here) -- my blog -- contact me (PM is broken)
"Some men, in truth, live that they may eat, as the irrational creatures, 'whose life is their belly, and nothing else.' But the Instructor enjoins us to eat that we may live." -- Clement of Alexandria (about 200 AD)

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#507456 - 11/03/14 10:43 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
ajohnson Offline
Member

Registered: 09/15/14
Posts: 33
I'm not a full success story quite yet but wanted to post my experience thus far with NSD.

I started tracking my flare ups in 2014 and they happen every ~25 days and I've had 8 flare ups thus far.

I've been on the diet for 7 weeks. I had a flare up 2 weeks into my diet but that is also because I was going through an iritis flare in the weeks prior. I think my leaky gut + Klebsiella levels were still abnormal.

Since then, I have had 31 days of no back inflammation. This is almost my 2nd longest duration of the year and I am hopeful it will continue past my longest (43 days). In addition to NSD, my naturopath put me on caprylic acid and grapefruit seed extract to eliminate some yeast that was detected through a stool test. Also, these 2 antimicrobials are strong against Klebsiella. I also started taking 12B probiotics every day a few weeks back to help add in good bacteria.

I believe the actions I have taken above are working to eliminate Klebsiella but probably more importantly leaky gut (I have posted previously how leaky gut is a precursor to A.S. at least in one study of it). I hope to get to a point where I have no back inflammation and no chronic iritis flare-ups.
_________________________
Pre-As (sacriolitis) dx 2013
Chronic iritis in right eye
HLA-B27 Negative
3g fish oil, vitamin D, multivitamin, bacillus coagulans, digestive enzymes, curcumin, l-glutamine, butyrate (Alex Shikhman gut-based protocol)
Ibuprofen as needed a few times a month

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#507481 - 11/04/14 01:27 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
ajohnson Offline
Member

Registered: 09/15/14
Posts: 33
Just a clarification above. I am taking a country life probiotics product that contains 12 billion organisms.

I've also had a few other lifestyle changes coinciding with my NSD diet - doing yoga a few times a week, using a standing desk for part of the day at work, and upping my EPA/DHA from 750 mg per day to 3000 mg per day.
_________________________
Pre-As (sacriolitis) dx 2013
Chronic iritis in right eye
HLA-B27 Negative
3g fish oil, vitamin D, multivitamin, bacillus coagulans, digestive enzymes, curcumin, l-glutamine, butyrate (Alex Shikhman gut-based protocol)
Ibuprofen as needed a few times a month

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#507590 - 11/10/14 06:41 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
keit_nufc1 Offline
Second_Degree_AS_Kicker

Registered: 12/12/09
Posts: 221
Loc: Australia
I don't post a lot but I do check in regularly.

I am Keith Smith, 46 and a teacher in Sydney, Australia (although I am originally from the home of bread and potatoes, Newcastle, England).

This is a brief outline of my experiences of NSD.

2009 AS began to dominate my life.
December 2009 began NSD diet and immediate progress but not remission.
2010 experimented with antibiotics...reasonable progress.
2010 to 2012 good progress but still troubled by iritis and SI pain.
2012 gave up beer...no more iritis. Paleo auto-immune protocol (full on but beneficial).
2013 started LDN...steady improvement and by 2014 full remission.
2014 September...stopped taking LDN. No change. Still in remission.

The take home message is cut out beer, be patient, LDN helps take the edge off a hyper alert immune system and finally stick to NSD.

These days I am LSD...cooked greens (brussels etc...), lots of nuts, copious avocados, solid paleo foods, cider instead of beer but I haven't tried medium to high starch foods. I am a little reluctant for obvious reasons. In the longer term sweet potatoes and rice would be great but I am patient.

My regimen is lots of magnesium citrate, 5 TBS of Acacia Senegal (to feed my good bugs), Prescript Assist and I am experimenting with other probiotics. In the past I have reacted to sauerkraut but that is next on my list.

Every one is different but that is my story. If you are a non-believer swallow your pride, cut out the "good stuff" and embrace the paleo diet. If it doesn't work go paleo auto-immune. If that doesn't work try antibiotics. Failing that try LDN. But most importantly BE PATIENT. It takes time.

I am playing football, swimming, running and hoping to do a triathlon in the new year.

Happy NSD and a big thank you to people like Kiwi, John (Dragonslayer), Dotyisle, Louise (Inkyfingers) and other absolute heroes who run this site. Guys you are making a real difference to people's lives, especially mine!

Go KickAS!


Edited by keit_nufc1 (11/10/14 06:41 AM)

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#508114 - 12/17/14 10:27 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
Luigavinovic21 Offline
New_Member

Registered: 12/17/14
Posts: 11
Hi,

Im a new member here.. I was diagnosed in 2007 and have experienced thos sleepless nights due to pain. I took methotrexate and until now, it has been my only medicine together with folic acid of course to minimize adverse effects.

I have been pain free majority of the 7 years and have suffered from episodic flares that arcoxia can fix..

After reading the success stories here, im enfouraged to try this nsd thing as i no longer want to rely to any drugs as it cpuld lessen the symptoms but could affect other organs.. I dont want to go the biological route as well.. Anyone here who stopped biological treatment because the nsd worked?

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#508437 - 01/06/15 01:26 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
jou Offline
Active_Member

Registered: 01/06/15
Posts: 54
Hi,

Fist, sorry by my english level,I am a spanish man of 33 age, I promise improve my level english, I was diagnosed two years ago and my pains are stronger on my feet, fist a fascitis plantar and in this moment I have pain in left foot big toe inflammation and intermittent finger right foot, heel pain and recently stiffness in the neck area. From day one I 've been trying a diet low in starch but I would like to know how resolveis your foot problems and if the diet helps you . Thank You

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#508484 - 01/07/15 10:49 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
zark Offline
Colonel_AS_Kicker

Registered: 04/12/02
Posts: 2482
Loc: NSW, Oz
>> From day one I 've been trying a diet low in starch but I would like to know
>> how resolveis your foot problems and if the diet helps you

In my case the most important thing is to avoid mixtures of sugar and fat (eg. hot chocolate, caramel, etc) as these caused inflammation in my hands, feet and eyes. The reaction is worst when the food is hot, so hot chocolate or any hot sweet milky drink was the worst.

All the best
z
_________________________
what I can eat on the diet (click here) -- my blog -- contact me (PM is broken)
"Some men, in truth, live that they may eat, as the irrational creatures, 'whose life is their belly, and nothing else.' But the Instructor enjoins us to eat that we may live." -- Clement of Alexandria (about 200 AD)

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#508485 - 01/08/15 04:17 AM Re: No/Low Starch Diet Success Stories [Re: zark]
jou Offline
Active_Member

Registered: 01/06/15
Posts: 54
thank you very much

The other day I ate sweets with sugar....in the night, the next day T was with more pain and inflamation in my foot. In February, I have my rheumatologist review and I have concern for the biological treatment and its side effects. I hope that diet help me a lot . Two days ago I asked Carol Sinclair 's book , I hope gradually learn from you and the book.

Many thanks to all the people who help with the effects of spondylitis

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#510771 - 05/06/15 02:00 AM Re: No/Low Starch Diet Success Stories [Re: sundar]
chetan Offline
Lurker

Registered: 05/04/15
Posts: 1
dear sundar can you please send me the details of food items taken as LSD in breakfast/lunch and dinner. Shall be greatful to you I am pure Vegeterian

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#513554 - 12/20/15 02:59 AM Re: SUCCESS [Re: Dotyisle]
ASkickerr Offline
New_Member

Registered: 12/18/15
Posts: 4
Hi all, just here to finally introduce myself, as I was lurking as a Guest for sometime now. I was diagnosed with AS a few months ago, however I've been experiencing back pain for almost a decade. I crashed my motorcycle ten years ago, and since then I've always thought my back pain was because I never fully recovered. The pain was mild at first for years, however it slowly worsen over a span of 8 years. I saw many physiotherapists, acupuncturists, massage therapists, naturopaths and chiropractors who only were able to offer temporary relief. Two years ago "flash" flu hit me out of nowhere for one day. My lymph nodes were very swollen and I had several other unknown bumps on my forehead. The symptoms went away quickly and my doctors could not tell me what happen but I now have high a suspicion that it was a klebsiella infection. My back pain progressively worsen from a 3 or 4 to 6 and 7. I live a very active lifestyle. I'm a sports junkie, especially hockey and jiu jitsu. The pain was to the point where I had to take months off from jiu jitsu. My xrays indicated early signs of degenerative disc disease and narrowing. I was worried, confused and stressed because nobody can confidently explain why this was happening to my body. Finally I was referred to see a rheumatologist, who diagnosed me with AS. I was glad to finally have answers and some understanding of my body. Doctor told me I would have to probably take medicine and routinely stretch and manage my pain for the rest of my life. And I was fine with that. I then found my way here! I read about Professor Ebringer's research and how he successfully treated his patients with a No Starch Diet. I went out for Iodine and tested many foods at home. Cutting my starch intake by dropping obvious starchy foods like pasta, rice, potatoes, basically wheat and grain was not an issue. I'm pretty simple and disciplined. I can eat steamed broccoli and roasted chicken for weeks, then switch it to steak, then back. Swap in carrots and beets, then possibly cauliflower. lol. I'm low maintenance! I was a little sadden tired that I can never eat Pho(Vietnamese noodles) again. I am a person of Vietnamese descent after all. But that was easily worked out by substituting the noodles with a whole bunch of bean sprouts and meat. laugh Anyway, I've been on a little to zero starch diet for almost a month now and I feel incredible. I'm physically improving everyday and I'm high in spirits everyday. I'm thankful for finding my way here and I'm grateful for this forum and all of its members.
_________________________
"You miss 100 percent of the shots you don't take"

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#513578 - 12/23/15 01:42 PM Re: SUCCESS [Re: ASkickerr]
mooman Offline
Second_Degree_AS_Kicker

Registered: 03/13/09
Posts: 206
Excellent stuff, for noodle or pasta alternative if you miss it and since your taking broccoli you can try courgettes and a spiralizer to make a decent dish

http://www.telegraph.co.uk/food-and-drink/equipment/the-best-spiralizers-tried-and-tested/

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#513740 - 01/19/16 05:00 AM Re: SUCCESS [Re: Dotyisle]
keit_nufc1 Offline
Second_Degree_AS_Kicker

Registered: 12/12/09
Posts: 221
Loc: Australia
Hi guys

Sorry for not posting. That is the problem with NSD success...after a while you take it for granted.

Brief summary...

I started Low Starch Diet 6 years ago. After a few weeks I saw little improvement so I began the full NSD. I had good success but my SI joints and sporadic iritis suggested it wasn't working 100%.

My next biggest breakthrough came when I gave up beer! It was a blow but it quickened my progress.

After 1-2 years I had spotted success e.g. intermittent flares but lessening in intensity. My SI joints were still troublesome so I adopted Paleo Auto-Immune Protocol. It was super strict and very hard to follow but critical in my ultimate success.

6 years on I am pretty much totally recovered. I can now eat a LSD with chocolate, cider and nuts.

This is me being interviewed by a celebrity chef in Australia (Pete Evans).

There is no great secret to NSD success. It all comes down to persistence and patience.

In the words of my favourite rock band the ultra-socialist Redskins "keep on keepin' on it!"

https://www.youtube.com/watch?v=Q0o9zL8rYys

I have also posted this in the main forum.

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#513846 - 02/01/16 12:25 PM Re: SUCCESS [Re: keit_nufc1]
TreatMeGently Offline
New_Member

Registered: 12/08/15
Posts: 9
Loc: United Kingdom
Hi keit_nufc1

Echos my experience exactly - first I went just wheat and Corn free 23 years ago and supplemented with Magnesium, Manganese, Zinc and Selenium. But the thing I noticed the most was Beer or Guinness would cripple me for a week - sore hips, ribs, should blades. I later gave up Rye and now Oats too.

It was one of the reasons I didn't at first engage with the LSD and this website - as there were too many people saying beer was OK.

Then the more I learned from the internet about the disease and especially gluten too was that everyone gets intestinal permeability via gliadin (even non celiacs) - so Klebsiella or not, other stuff can flow in to challenge the immune system.

My system still allows me rice and potatoes if do not overdo it.
_________________________

I was a patient of Dr. John Mansfield in the 1980's looking at dietary triggers.

As well as diet changes, I take Mag2-1Cal, Manganese, Zinc, Selenium I am > 75% better most of the time

We need more understanding of gut bacteria and intestinal permeability - with gluten being part of the jigsaw.

http://www.ncbi.nlm.nih.gov/pubmed/22313950

https://www.youtube.com/watch?v=VvfTV57iPUY

I'm here to share - diet and recipes.

http://link.springer.com/article/10.1007%2FBF03011637

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#513847 - 02/01/16 12:37 PM Re: SUCCESS [Re: keit_nufc1]
TreatMeGently Offline
New_Member

Registered: 12/08/15
Posts: 9
Loc: United Kingdom
Hi Keith

Sorry another reply... but just saw you video. Fantastic!

I also use natural antibiotic - I found that pressed unsweetened pomegranate (a small shot from Pret a Manger) can settle my gut down and nip a flare before it starts.

Not Paleo - but have been recently using Banting recipes Crackers and Bread (made with Flax and Almond and seeds). I'm feeling great.
_________________________

I was a patient of Dr. John Mansfield in the 1980's looking at dietary triggers.

As well as diet changes, I take Mag2-1Cal, Manganese, Zinc, Selenium I am > 75% better most of the time

We need more understanding of gut bacteria and intestinal permeability - with gluten being part of the jigsaw.

http://www.ncbi.nlm.nih.gov/pubmed/22313950

https://www.youtube.com/watch?v=VvfTV57iPUY

I'm here to share - diet and recipes.

http://link.springer.com/article/10.1007%2FBF03011637

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#514162 - 03/01/16 07:47 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
Havsurf Offline
New_Member

Registered: 01/18/16
Posts: 5
Loc: California, USA
Hello All, I'm a new member and new to AS. I would like to share my story of my AS and NSD. It's a short in time story compare to most of the posts I have read.

When I first develop AS symptoms I though it was from a nagging injury I suffered from racing my dirt bike. So I was in denial for a couple of months. After dealing with the pain coming and going in my buttocks and left hip for couple of months I decided to make a visit to my primary physician. I explain what happen and he prescribed me Naproxen, Hydrocodone and X-rays of my hips and pelvis. The prescriptions drugs worked on relieving the pain but as soon as I felt better I would stop taking them and the pain would come back lot more intense. Then I would be back on them again. I knew that this was not right. My X-rays came back negative for any fractures but I still had a soft tissue knot on my left buttock. My physician was puzzled about my injury and so was I. I had have many injures and a few surgeries in my time doing sports but this was different. I was not healing over time. So My physician order MRI of my hips and lower back. Also ordered blood tests to see what was going on. This took a few weeks to get done but my pain was increasing and extending to my lower back. I never had back problems growing up so I was getting a little worried what is going on with my body. While waiting for the all the tests results to come in my physician suggested to see a chiropractor maybe I need my lower back adjusted. I never been to a chiropractor before I figure it can't get any worse. The pain was getting pretty intense at times. Well I was wrong. The chiropractor crack up and down my spine and the pain was so intense I could barely walk. My neck was so stiff I could not turn my head. The chiropractor told me to take my pain medication and it will feel a lot better in a couple of days. WRONG! I was so stiff and in so much pain the pain medication could barley take the edge off the pain. I was like this for a week. I had to sleep with a heating pad just to get some pain relief. Finally my blood test results came back and MRI diagnosis. The MRI images showed I had a fractured left sacrum. The blood test showed very high inflammation (CRP - 76.8 & ESR - 102). And i tested positive for HLA-B27 gene. At the time I did not know what this meant. My physician sent me to a rheumatologist. She reviewed all of my test data and did a physical exam on me then told me I had AS. I did not believe her on this first visit. I thought for sure my fracture sacrum was the issue. She prescribe prednisone and naproxen medication and told me I would be on medication the rest of my life. She gave me a brochure on AS and sent me on my way, then do a follow up appointment in a month. I was so depressed after that visit. I could not believe it what I had. I'm 56 years old this AS usually starts when you are a teenager so what the brochure said. I put my body through a lot stuff over the years but it always recovered. But this time it was different. I went home and told my wife. I told her I didn't believe the Rheumatologist. I wanted a second opinion on this AS. My wife started to research this AS and found and ordered this book Conquer AS in six weeks by Micah Cranman. It was a little pricey but worth a shot. This is where I learned about the no starch diet and KickAS website. I read the book in one night and decided to start the NSD the next day. My wife was all in with this NSD. She was trying to change my un-healthy diet for years. I thought this healthy food stuff was a just marketing ploy to charge more for food. I live in California and there are so many diet fads here it's just crazy.
I was 100% commented to the NSD. I bought a bottle of iodine and started to test everything I put into mouth. My wife ordered a few NSD cook books and we started on our NSD. I also gave up on dairy and beer, which was hard.
After a few weeks of this NSD I wasn't feeling much better but I was loosing weight at very fast rate. I lost about 20 pounds in two weeks. I would feel better for a day or two then I would stop taking my medication and the pain would come back. I went to see my rheumatologist and told her about this NSD and leaky gut theory and she basically brushed it off as there is no scientific research to back up the claim it works. So no support from my rheumatologist. I was about to quit this NSD, then I wrote Micah an email explaining I haven't seen any real change yet. He told me to give it more time since I'm older it may take longer, my gut has to heal. I also started to read more posts on this KickAS website and found new hope. Plus my wonderful wife kept encouraging me to stick with it. There were people suffering lot more than I and longer. I started to take supplements suggested on this website and Micah's book. A couple weeks later I started to notice a difference in my body. The pain was decreasing my mind wasn't feeling depressed all the time. I started to believe this NSD and supplement routine was working. I changed my attitude and lookout toward this. Instead of feeling I have to do this, to I want to do this. This positive change helped me in many ways. I started to reduce my medication when the pain was decreasing. In the time frame of two weeks I was completely off my medication and the pain was pretty non-existent once this NSD started to work.
I started to exercise to build back my strength that I lost from doing no physical activities. I started doing yoga with my wife.
As my strength started to build I was back doing the activities I like to to do, dirt bike riding, snowboarding, surfing and hiking but not at the level I was at before AS. Still a vast improvement from where I was just few weeks ago. I had follow up blood testing results back yesterday and my test results were awesome. I'm almost back to normal levels. I am a believer in this NSD. It was amazing how fast I was pain free when the NSD and supplements started to work on me. I'm one more testimony that the NSD works on some people. I have a total different outlook on life compared to 5 months ago when I was diagnosis with AS. I realize my story is quite long, hopefully it will help someone see the light at the end of the tunnel.

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#515035 - 05/27/16 08:45 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
grizzlysoft Offline
New_Member

Registered: 02/06/12
Posts: 4
The rheumatologist will never support you in going NSD. When I've explained her that it really works, and she sow that(she even put on my papers: "AS in remission"), she told me she can't recommend going NSD to her patients. She is a doctor and she is prescribing medicine in the way she learned from the school.
It is so crazy. So many people could benefit from NSD, but nobody is interested in it. It makes no money ...
So much pain could be spared.
I have a friend suffering from AS, and he prefers medicines instead of not eating potatoes and bread. Crazy world.

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#515063 - 06/01/16 04:30 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
sleepysaint Offline
Lurker

Registered: 04/16/16
Posts: 1
Loc: india
Hi I am mohsin from India.. ive had AS for 13 years now. I am 29. I was diagnosed at the age of24. I started the no starch diet just a month back. I have lost weight rapidly. I stand 5 11". I used to weigh 82kgs now I weigh 71kgs.

the initial 20 odd days were really rough, you feel so weak but no significant pain reduction, its a test of your grit(and ive cheated a few times). but then you start noticing the pain levels come down. now I sleep without any painkillers which was impossible before.

this is the diet I follow.
breakfast->> 3 eggs/fish/mutton/liver and some tomatoes
lunch->> 2 boiled eggs
dinner--> mutton/liver/fish with raisins and tomatoes

I swim daily at night for an hour. planning to start stretching sessions in the mornings

the pain levels have come down greatly

but with the diet above do you think I might get into trouble with vitamins and stuff? please let me know.

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#515171 - 06/12/16 11:22 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
Phoenix Offline
Lurker

Registered: 03/27/09
Posts: 1
Thanks to all who post here and help maintain the site - the world needs to know about the no-starch-diet for AS!

I have used the no-starch diet for AS for twelve years and it allows me to live life like an able-bodied person rather than the semi-disabled person I was before. (I had crippling pain in my hips and lower back, neck, shoulders, ankles and knees, and occasionally woke up completely unable to move. After being on the diet,I have been able to work as a volunteer lifeguard and run three half-marathons.) The benefit of the diet, for me personally, is priceless: Although I have every respect for those who find quality and meaning in a life affected by disability, my physical capability is key to my quality of life.

I had clear AS symptoms since age 22 and these were misdiagnosed at age 26 (x-rays misinterpreted as osteitis condensans - literally a "Textbook" error as I later discovered). It was only by chance, when I got repetitive strain injuries from computer use (which have since shown no association with the AS) that my AS was formally diagnosed via x-rays and blood tests.

I have noticed recently that various health professionals' websites still claim no link between diet and AS - the ignorance is astonishing, given the length of time that some of us have kept ourselves able-bodied with the diet (and, incidentally, saved governments which provide healthcare huge sums of money in the process).

So I'm particularly struck now by how important it is that we keep our findings on the no-starch diet available for those affected by AS.

At least one research study is starting in the UK on diet and AS, but it appears to be based on recording what people "happen to eat" and what their symptoms are like, so might well simply back up the claim of no-link-between-diet-and-AS because the NSD is too difficult, expensive, time-consuming and socially awkward for anyone to follow "by chance". I hope my pessimistic view on this new study is wrong, but there is so much discussion of drug-based approaches to AS and so little on removing the root cause via diet that it seems unlikely that enough patients on the NSD could be included in such a study.

Anyway, thanks again to all who share experiences on AS, and good luck & patience to anyone trying the diet for themselves!

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#515631 - 08/10/16 08:58 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
ValsMum Offline
Steel_AS_Kicker

Registered: 07/05/10
Posts: 1168
I have Rheumatoid Arthritis and I was diagnosed seven years ago ,six weeks after giving birth to my child. There were days I needed help picking up my daughter because both my wrists were so swollen and inflammed.I had my knees drained every three months for years. Then I found out how a diet can change everything. My knees do hurt anymore and they were swollen for years, I could not straighten them out for two full years, now they are fine.My elbow was frozen for two years and I could not extend it for two years, it was awful. I limped for years......for years. I read a million things and how one thing works for one person but does not work for someone else, I read about crazy elimination diets and I tried them. I tried portable saunas, some weird horse stuff that cures arthritis, I flew out of state because I thought I had lyme disease and tried antibiotics which only made me feel 10 times worse.
------------------------------------------------------------
So to sum it up for me: NO GRAINS and very little dairy & sugar. I try to eat 80 % raw fruits and veggies . JUICING IS KEY FOR ME I DO NOT GO A DAY WITHOUT A FRESHLY MADE JUICE! I juice 3 carrots, 2 celery stalks and 1/2 a cucumber. When I go without that juice I feel it!!! I eat chicken , turkey and fish, but not a lot of it. I think the juice heals the body from the inside out.Start with salad with some chicken on it and use a juicer to juice some raw veggies, you will feel the difference and starchy stuff wont even tempt you anymore. I like the following advice from Dr.Max Gerson --We have the condition we are in due to toxicity and nutritional deficiency . Some helpful sources for me are: KickAS which gave me the first push in the right direction, Fat, Sick, Nearly Dead, Clints Cure, Dr Mercolas RA guidelines and Gerson.org.
_________________________
Diet change has improved my RA. I feel best eating raw veggies and some fruits and avoiding grains, sugars, nightshades, beans and dairy. Sed rate dropped from 65 to 19, but it took over a year.
www.fatsickandnearlydead.com

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#516032 - 10/21/16 12:17 AM Re: SUCCESS [Re: ASkickerr]
schwrz Offline
Lurker

Registered: 09/15/14
Posts: 1
Hey ASkickerr,

I hope to someday be able to post a success story myself but for the time being I don't feel I've "earned" the right to do so as I don't think I've beaten AS just yet. I do however want to thank you for sharing your particular story since the first part mirrors mine almost exactly. You see, I too crashed my bike (mine was a sports bike) 12 years ago leading to the same late diagnosis due to the same reasons. AS following an injury seems to be a common theme here. Perhaps it somehow triggers the disease? For us this is purely academic at this point...

Thanks again for sharing!

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#516037 - 10/23/16 02:11 AM Re: SUCCESS [Re: Dotyisle]
Rusty62 Offline
Lurker

Registered: 03/16/13
Posts: 1
Loc: Brisbane, Australia
Hi all,
I think this is my first post, although I've been a member here for a couple of years now.
My concern right now is that blood test results yesteday point to Pancytopenia, which I now have urgent follow up tests over te next couple of days to find out why.

I've had AS for more than 30 years and would consider my case to be mild compared to others, though I have suffered greatly at times, particularly in the eatly years.
About three years ago I started the No Starch Diet and have had exceptional results until a few months ago, when I let the diet go a bit, a fair bit. Previous to that I did let it go a little and had no real problems, maybe coincidental I don't know.
But as I wait for these tests, I can't help wonder if this new problem could be due to the NSD.
The main reason I tried the diet was because I qualified for anti-TNF meds, but on researching the side effects I decided I didn't want to take the risk of increased odds with leukaemia especially since my mum had passed away a little earlier with AML.
I've considered this link because after speaking with others in my local AS group some time ago, already on anti-TNFs that there were similarities in condition changes on those as I experienced with the NSD...almost immediate relief from mouth ulcers (I had always had them continuously and they stopped in the first week) and relief from AS pain in the first few weeks.
Well I guess I've just go to hope this new challenge is an easy one to beat.
Rusty

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#516217 - 12/08/16 02:12 PM Re: SUCCESS [Re: sleepysaint]
strang Offline
New_Member

Registered: 12/19/15
Posts: 7
@sleepysaint

I would suggest you add some green leaves: spinach, broccoli, some lettuce, maybe kale, fresh herbs like parsley, koriander, basil, etc. these are heavy on vitamins+minerals.

If you don't love fresh kale (can be bitter) gently frying it makes it less bitter.

You can add chopped kale or spinach to your eggs - about a tablespoon per egg and whip it (whip it good), fry it like a green pancake and use it like a wrap with fresh leaves, some meat, good olive oil.

Oily fish like mackerel, sardines, herring, vild salmon are also nutrient dense foods. Even canned these are a good (an easy) way to get nutrients.

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#516283 - 12/22/16 12:39 PM Re: SUCCESS [Re: Dotyisle]
Exacta Offline
New_Member

Registered: 12/12/16
Posts: 20
Registered here to tell my success story.

All the way back in 2009, I started to develop a painful and swollen foot, knee, and shoulder. After many doctor visits, I was eventually diagnosed with Reactive Arthritis, and tested positive for the HLAB27. A combination of Sulfasalazine and Humira knocked this out, and I was 100% back to normal.

I went several years without symptom, but whenever my joints started to ache, I'd get a script filled for Humira, and within 1-3 doses I would be back to normal.

Fast forward to 2016, and not only was the Humira not knocking out my pain, but I started to develop pain in my hips, lower, and upper back.

I found this site, got on the NSD/LSD, and started to feel a lot better within days.

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#516409 - 01/13/17 05:22 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
Monza Offline
New_Member

Registered: 03/30/16
Posts: 13
I've a theory about the NSD. I have found it pretty helpful but am on the 'journey' shall we say.......
I think that whole grains and so on could be the worst things because they reach the lower gut where those Klebsiella reside due to the lovely long lasting slow digestion. Meanwhile quick use starches-wonderfully over-processed crap that we are always normally told to cut down on- can be tolerated from time to time IF you are really hungry and digest and absorb them BEFORE they get to the lower gut!!!!
I thought this after a morning of enforced fasting (ie. there was nothing I could eat around the house that had no starch) then being offered a Krusty Creme doughnut, which I accepted. I waited for the pain and none came!!!

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#516410 - 01/13/17 05:23 AM Re: SUCCESS [Re: strang]
Monza Offline
New_Member

Registered: 03/30/16
Posts: 13
Yes, I live on tins of fish. They've stopped me wasting away completely!

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#516411 - 01/13/17 05:27 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
Monza Offline
New_Member

Registered: 03/30/16
Posts: 13
Glutinous Rice. Halleluia.

Spices? OMG I'm so depressed to hear they're starchy. How can it be true?

Has anyone tested ginger?

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#516533 - 01/30/17 09:58 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
byram006 Offline
Lurker

Registered: 01/27/17
Posts: 1
Does anyone know of any good Non-starch protein shakes? I get extremely hungry on this diet and I need a filler like a shake to help me out for the first several weeks until I get more used to it. I have found 2 so far but both are pretty nasty.

Also, I'm waiting to make sure my back pain goes completely away before I tapper off of my medications. Does anyone know of a plan to follow to tapper off meds? I wish I had someone to talk to about a plan on that as I know for a fact it wouldn't be my doctor. I do Remicade infusions once every 8 weeks and I also take oral Imuran pills. Medication has worked great for me for a year and a half but has slowly started wearing off. I know the answer to my problem would be to increase infusion frequency and that's not what I want to do. This is my last known medication that can help both my UC and AS according to my doctor. This diet has given me hope, as well as possibly doing a fecal transplant down the road.

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#516621 - 02/19/17 04:18 AM Re: SUCCESS [Re: Dotyisle]
ravirajhn Offline
New_Member

Registered: 02/04/17
Posts: 3
Loc: India
I have been struggling with Arthritis since March 2004 and in October 2016 I have been diagnosed with Ankylosing Spondylitis.

Before I visit your website. I was following Dr McDougal.


Now my daily food is Morning Rice Floor Roti and Green Vegetable with oil fry with pepper and Indian Malasa.

Lunch : Rice Floor Roti and boiled rice and dal mung, turdal, lenthils etc


dinner : Rice Floor Roti and boiled rice and dal mung, turdal, lenthils etc

Now condition is so worse that i could not lift my hand up. there is no swelling,

My spine, neck, shoulders are paining like any thing,

i dont each meat, egg, all gluten free but symptoms are getting worse.

I have lost 13 Kgs of weight.


Please help




--

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#516722 - 03/03/17 04:30 AM Re: SUCCESS [Re: ravirajhn]
smmh Offline
New_Member

Registered: 12/16/16
Posts: 2
i don,t understand. it seems you do it wrong. you must not eat rice or bread much. you must eat anything except starch or have a controled amount of it if you want have a nsd diet

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#516726 - 03/03/17 02:39 PM Re: SUCCESS [Re: ravirajhn]
DragonSlayer Offline
AS Czar

Registered: 09/05/01
Posts: 5989
Loc: Reno or SFLU Philippines
WELCOME, ravirajhn:

Please obtain a copy of Carol Sinclair's "The New IBS Low-Starch Diet" and follow NSD; the McDougall plan is for beginning stages of regular RA and NOT AS!

Also, this is not the thread for NON-success stories; please post in regular forums and You are welcome to start new topics.

HEALTH,
John
_________________________
Important AS Resources

Professor Ebringer: On Diet and AS;


RED ARROW --> Philippines

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#516801 - 03/19/17 06:33 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
cristian_g Offline
New_Member

Registered: 11/27/15
Posts: 2
hello,
this is my first post here, even though i`ve been following this forum since nov 2015. That is where my story starts.
I was first diagnosed in the summer of 2009, when after only two months since first sympthoms i was already unable to walk out of the house without taking pills (arcoxia) and also had an episode of iridiocyclitis.
At that time the doctors recommended immediatly to start with Infliximab (Remicade).
Result begabn to show up in a week, and within one months i was already able to run.
Everything worked fine in the following 6 years, with absolutely no sympthom of AS, no pain, i was in a very good shape ( able to run out in the cold at -10 Celsius) - i was as new smile (with an Infliximab dose every 8-9 weeks).
I was very confident that AS was off. In july 2015, due to some problems with the healthcare in my country (Romania), Infliximab was no longer available for me, and for the next 4 months i had to take a break. In this time, sympthoms were slowly coming back, and, on the 15 of November 2015, doctors diagnosed that AS was back, and recommended switching to Humira.
I was very sad in the beginning, but on the same day, as i was travelling back home from the hospital, my girlfriend gave me a link on an sms. - it was kickass.org smile
The next day i decided to start the diet. it was Very hard in the first four weeks, lost 10% of my bodywheight and backpains, jointpains, nightsweats were incresing in intensity.
I was going totally NSD, with very little sugar. In the next four months, AS was back in full power. I couldn`t even walk sometimes. But this time i decided to go only on the diet, with no medicines. (now as i look back, i realise that maybe it was a mistake, i could have cut pain a little)
Anyway, in June (8 months since i began diet) i couldn`t go further, and began taking meds again.(Interestingly, in that time, pain and swolenness were slowly going down, from spine and ribcage - to pelvis and feet.)
As i said, i began with Arcoxia 30 mg twice a day, and slowly decreased to ibuprofen and paracetamol.
In nov 2016, after a year with NSD and pills, sympthoms slowly diseapeared, and i began to sleep well again, i was able to walk fine again, and i began practicing some sports - swimming.
Also, sincer nov 2016, i was no longer so strict with the diet, and went more like Low Strach Diet.
Also, sincer then i gave up pills, i took them only when necessary.
Now, 20 march 2017, after 16 month from starting the diet, i:
1. no longer take any kind of medicine
2. already started running
3. go on a relaxed Low Starch Diet
4. have a happy life again

This is my story, but like other who wrote before me, i have some amendments.
1. start easy, cutting down sugar to zero might be dangerous, i was lucky i only lost some kg, but you don`t know how your body reacts
2. don`t take yourself to serious, or you will end up only thinking about food and what to eat next.
3. don`t be a hero. i think is not worthy enduring pain, if you think you really need one pill to do your daily activity or to sleep well - take it. i learned it the hard way - i nearly lost my bussiness beeing to busy fighting AS.
4. about diet: Totally NSD is very hard, and i wouldn`t recommend it. It may be more effective, but i think Low Starch is the way to go. It is easyer to carry on and you`ll have more time to do other important things (like doing your job well so you won`t lose it)
5. Try some alternative medicine. Call it yoga, reiki, cosmoenergy, whatever, even though they may have no direct effect on AS (i think they do, but this isn`t the place to talk about that), they will improve your mood and will make you go easily through the process. And believe me, mental health is very important in that time smile

So, my first post here was about how i managed to heal myself. So far i am going very well, and i hope i`m done with AS.
This was a small part of the story, and i hope i wrote was was essential and didn`t forget anything.
Anyway, thank you for sharing here all your experiences, keep writing, there may be someone like me out there struggling to fight AS and who maybe someday write a succes story as i am doing now.
Without kickass.org and all info in here i would probably just be addicted to some meds and have to live a life depeding to doctors and hospitals and who knows what.
Now i am free.
Thank you again


Edited by cristian_g (03/19/17 06:49 PM)

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#516802 - 03/20/17 09:14 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
ravirajhn Offline
New_Member

Registered: 02/04/17
Posts: 3
Loc: India
Hi Cristian,

Could you please list your food.

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#516803 - 03/20/17 09:14 AM Re: SUCCESS [Re: DragonSlayer]
ravirajhn Offline
New_Member

Registered: 02/04/17
Posts: 3
Loc: India
Thank you John,

I will start new topic.

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#516807 - 03/20/17 05:21 PM Re: SUCCESS [Re: Dotyisle]
cristian_g Offline
New_Member

Registered: 11/27/15
Posts: 2
hello ravirajhn,
i hope it`s ok to post here.

first i have to say that the best method is to test for yourself, not everything i red on this forum matched perfectly, i had to try.
in the beggining, i avoided almost everything was in the list which had more than 5% starch and the nightshades. when i tried anything besides that, my body seemed to react.
Also, i tried to to keep sugar level very low. That included fruits, which i had a max 3 a day. Chocolate, only around 15 grams of 70% cocoa or darker per day.
In the beggining was very hard, i was always hungry, but Almonds, walnuts, tahini paste and other nuts saved me.
After a while your body will go along to the diet and you won`t feel hungry so often.
Remeber, this may not work for you, but this list contains 95% of my diet.
Nuts, sesame, cabage, SAUERKRAUT, cucumber, cauliflower, carrots, beetroot, onion, green beans, broccoli, cheese, KEFIR, yoghurt(with added bifidus and lactobacili) and meat (all kinds)
Apples, bananas, pears, melon, berries, coconut and sometimes citruses.
And for desert - dark chocolate
I also used very much apple cider vinegar, which besides the benefic effect some say it has , it also was very good for my digestive system.
And of course, sport, keep your joints on the move every day but don`t go to hard.


Edited by cristian_g (03/20/17 05:22 PM)

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#516947 - 04/21/17 05:40 AM Re: SUCCESS [Re: Dotyisle]
April8 Offline
New_Member

Registered: 03/22/17
Posts: 3
Loc: England
My hip pain was diagnosed as AS (as I suspected it was partly because I have had iritis for decades). I looked on line for solutions, particularly regarding what actually CAUSES AS and dietary recommendations. A blood test also found I had ridiculously low vitamin D which is connected to AS.

I found the answers I was looking for. But what shocks me is that the doctors would not even suggest any of the things I had to find out for myself.

Basically - the pathogen "klebsiella" is known to spark off AS in those with the genetic profile - ie in some of those who have HLA-B27 as I do. Klebsiella is similar to the gene so that the immune system confuses the two and ends up attacking the body.

Klebsiella thrives when you eat starch and also when you consume a (probably quite high) amound of inulin. (Not inSulin - but inulin). Inulin is found as a supplement in health food stores so no one with AS should touch that. But it is also high in chicory. I had been consuming large amounts of chicory coffee thinking it was healthier than caffein for a couple of years - really loads of it.

So the high inulin from that would have possibly been a major factor in the development of my symptoms as it fed the klebsiella - and certainly I could not have recovered if I continued to drink it.

I have been following a non starch and non inulin diet for about a month and feel really great except my hip is permanently damaged so I have a pill for that (amitriptyline). I came off the anti inflamatories (naproxen) so that I could try the idea of drinking half a bottle of Chardonnay which kills klebsiella (I will provide the link to the study). And strictly follow non starch diet.

Many others with AS will be suffering greatly when they could have had the relief I have found.

Apart from the isolated dose of Chardonnay you should keep off anything that adds to/causes "leaky gut" which allows pathogens like klebsiella into the blood stream. The naproxen (and pain killers like ibuprofen) are very bad for the gut unfortunately.
I take aloe vera at the moment and keep of alcohol now to allow healing of the gut.

http://www.decanter.com/wine-news/white-wine-kills-e-coli-105647/

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#516950 - 04/21/17 06:08 AM Re: SUCCESS [Re: April8]
jay_bharat Online   content
Master_Sergeant_AS_Kicker

Registered: 12/08/08
Posts: 641
Loc: INDIA, Tamil Nadu
Hi welcome.

Great to know that diet is working for you.

Quote:
I have been following a non starch and non inulin diet for about a month


Can you list the non inulin diet and your diet details.

Jay

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