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.

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

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.

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

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.

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.

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

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

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........

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.

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.

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

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.

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.

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.

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.

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!

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

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.

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

(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

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

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

[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].

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.

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.

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.

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!!

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/

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.

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

Thank you for compiling the list of people who are doing the Low/no starch diet.

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!

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).

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

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

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.

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.

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

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.

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

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!

Very encouraging and very uplifting. Thanks guys and God bless you.

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.

This was very encouraging, thanks.

Wow, what do you eat, if you are allergic to meat, eggs and dairy? That on top of NSD leaves only leafy veggies!

This was most helpful!

Hi,
Good success story.

Jay

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

[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.

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

Hi Sundar,
I have sent a PM to you. Kindly go thro and reply.

Jay

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

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

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

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

Success Story and I need to share it...

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.

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

update:table sugar is ok for me!! i was still learning,then.I just can't have dairy and almonds

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

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.

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

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

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.
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!

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!

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

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)

Hello Phil,
I want to know since when you are on NSD to get 99% pain control.

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

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 ... 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.

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.

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.

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.

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?

Great story....you mentioned that you did a culture on yourself to check for kleb levels...is that something anyone can do?

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.

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 .

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!

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.

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?

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?

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.

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

Thanks DragonSlayer. I'll just keep trying. I was getting really down there for a bit.

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!

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!

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.

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.

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

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 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.

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.

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.

That's fantastic Leo! Keep at it and keep us posted!

That's awesome, Matt. Would love to hear an update if you have a chance. Hope it's going well.

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.

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.

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.

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.

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! )

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!!!

Mrs. Zombie, that is beautiful! I am so very happy for you both! Keep at it!!!!

I had the same experience like Leovix and need friend's advices.

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.

Check Ebay, they have everything ! I bought my bottle from ebay, but i live in the UK.

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.

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

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!

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

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

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

Claire

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!

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

http://cigarettesandmeltedchocolate.wordpress.com/

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

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

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....

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!!

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.

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.

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.

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