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

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

Hi all,

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

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

Thanks everyone!!

Warm regards,
Ginger

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

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

Peter

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

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

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

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

Registered: 09/05/01
Posts: 5999
Loc: Reno or SFLU Philippines
[ed note: This is George McCaffery’s success story, excerpted from Carol Sinclair’s “The New IBS Low Starch Diet” at Geroge’s request to be added to the NSD Forum]

George McCaffery: From Despair to Success Story

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

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

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


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

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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Tips, if I can offer any, would be:

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

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

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

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

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

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

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

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

Oh, and we start a new family in April.

Best of luck to you all.
Stuart.

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

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

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

The Science behind AS:

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

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


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

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

How I became diagnosed with AS:

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

My experience so far with the No Starch diet:

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

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

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

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

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

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

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

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

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

My lists so far:


Bad foods:

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


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

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


Safe foods:

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

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

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

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

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

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

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

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

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

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

http://myankylosingspondylitis.blogspot.com/

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

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

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