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Joined: Mar 2002
Posts: 9,532
Likes: 8
OP Offline
Joined: Mar 2002
Posts: 9,532
Likes: 8
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.

Joined: Mar 2002
Posts: 9,532
Likes: 8
OP Offline
Joined: Mar 2002
Posts: 9,532
Likes: 8
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:
- Stoneyfield Farms yogurt on top of thawed frozen fruit, steamed non-starch veggy and sometimes eggs or turkey patty
- Apple juice
- 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

2 members like this: Magician, fvia
Joined: Jul 2004
Posts: 1,934
Joined: Jul 2004
Posts: 1,934
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.

Joined: Jul 2001
Posts: 3,451
Gold AS Kicker
Gold AS Kicker
Joined: Jul 2001
Posts: 3,451
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

Joined: Nov 2002
Posts: 1,039
Joined: Nov 2002
Posts: 1,039
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.

Joined: Sep 2001
Posts: 2,363
Joined: Sep 2001
Posts: 2,363
It started with my brother. He is a few years younger than me and when I was away at college I was told he had been taken into hospital. He had had severe pain all over his body and just lay on his bed at home, unable to move or sleep. After a week of this he was totally exhausted and his doctor called the ambulance and off he went. This happened twice to him and I thought poor sod . . . Then a few years later I woke up one morning and when I tried to get out of bed I had this incredible pain in my hip and I thought oh . . . four years later I finally got the diagnosis too. Well it gradually progressed up my spine in 'classic' fashion, and when it reached my neck in 1977 I was desperate for proper help. I finally got a referral to a proper rheumy clinic and while I was there the doctor asked if I would like to attend a new AS research clinic at another hospital, and so my treatment passed to the doctor there, Alan Ebringer.

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

I took NSAID's for over twenty years, sulphasalazine as well, but now I follow the diet I don't need anything. And my brother? He eats a low starch diet but cannot resist a small potato and a small piece of cake. But when his iritis or pain becomes troublesome he follows the diet more strictly.

'Then you should say what you mean,' the March Hare went on. 'I do,' Alice hastily replied; 'at least - at least I mean what I say - that's the same thing , you know.' 'Not the same thing a bit!' said the Hatter.
Joined: Aug 2004
Posts: 636
Joined: Aug 2004
Posts: 636
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.


Meanwhile I live and move and I am glad, enjoy this life and all its interweaving. Each given day, as I take up the thread, let love suggest my mode,my mood of living. (Fred Kaan, 1975)
Joined: Mar 2002
Posts: 74
Joined: Mar 2002
Posts: 74

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!


Joined: Oct 2005
Posts: 12
Joined: Oct 2005
Posts: 12
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 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 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 AS FREE ...better BE "AS KICKIN"

Wid Love

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

Dotyisle #205879 11/07/05 03:37 PM
Joined: Jul 2002
Posts: 1,198
Joined: Jul 2002
Posts: 1,198
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.
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.


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