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How A Low Starch Diet Could Ease Ankylosing Spondylitis Symptoms


Date: 20/09/07
 
In an initial study, 36 patients with active Ankylosing Spondylitis were put on a low starch diet. After nine months, measures of inflammation were significantly reduced and most of the patients reported a reduction in their symptoms...

Like so many scientific discoveries, this one came about quite by accident. Dr Alan Ebringer, a rheumatologist based here in the UK, put one of his patients on a high-protein, low-starch diet for weight loss reasons. Little did he know that that one small step would end up being a giant leap forward in treating a rare autoimmune disease called ankylosing spondylitis (AS) (Ebringer A, Wilson C. Clin Rheumatol 1996; 15 (suppl 1): 62).

AS is a chronic inflammatory disorder and type of arthritis, which mainly affects the lower lumbar spine and sacroiliac joints, which are located either side of your spine. One in 2,000 people in the UK suffer from the condition, which is far more common, and often more severe, in men than it is in women. Common symptoms include chronic inflammation, pain, and stiffness especially in the lower back. In advanced stages of AS, fusion of the spine occurs, which can lead to considerable disability.

As is often the case with auto-immune disorders, the underlying cause of this disease puzzled researchers for years. But as it turns out, the same person who found a way to treat the disease is also the one who discovered the root cause.

Before I go into that, though, I need to give you a little background. The disease mainly occurs in individuals who have the tissue marker known as HLA-B27. These tissue markers determine immune system responses and organ transplant compatibilities. Although most people who have this tissue marker do not get AS, around 80 to 90 per cent of people with AS have this tissue marker. This indicates that there are environmental factors involved in triggering this debilitating disease.

How one doctors ground-breaking research totally transformed our understanding of the disease

Thats where Dr Ebringers discovery comes in. He found unusually high levels of a gut pathogen known as Klebsiella pneumoniae in the stool samples of patients with active forms of the disease (Erbinger A, Wilson C. J Med Microbiol 2000; 49: 305-311). Then he found high levels of antibodies in the blood of AS patients that were reactive to Klebsiella. Dr Ebringer found that some of the Klebsiella antibodies were shown to cross-react with HLA-B27.

In other words, in trying to fight the Klebsiella, the immune system was also causing friendly fire damage by producing an attack that cross-reacted with this tissue marker. And since HLA-B27 is particularly found in the tissue of the lower back, that helps to explain why so much of the immune attack (and therefore the damage) is directed there.

This process in which a microorganism resembles a host so much that the immune system attack on this invader also attacks the body is known as molecular mimicry. This is well accepted as a potential cause of autoimmune disease its just that in most cases, the organism that triggers the immune malfunction is hotly debated.

In the case of AS, though, Dr Ebringer and other scientists have found a link with Klebsiella antibodies in separate studies carried out in 16 different countries. Other researchers in Scandinavia and Germany have also linked Klebsiella to the disease.

Dr Ebringers all-natural AS treatment protocol can eliminate the need for conventional drugs

So this leaves two big questions. How do you get rid of Klebsiella? And does it actually help AS patients if this microbe is eliminated from the body? That brings us back to the high-protein, low-carb diet. Bacterial studies were carried out on 47 people on a high-carb/ low-protein diet and compared to another 45 people on a low-carb/ high-protein diet. Those on the low-carb diet were found to have around 50 times less Klebsiella organisms in their colon (Finegold SM, Sutter VL, Sugihara PT et al. Am J Clin Nutr 1977; 30(11): 1781-1792). Ebringer argued that resistant starch in the diet (starch that cannot be digested by our own enzymes) was feeding the growth of Klebsiella because it could be broken down by bacterial fermentation. This led him to develop the following low-starch diet plan for his AS patients:

1. Increase meat and fish, beans and peas, nuts, vegetables, fruits, milk and milk products.
2. Reduce bread, potatoes, crisps, rice, pasta, cereals, cakes and biscuits.

In an initial study, 36 patients with active AS were put on Ebringers diet. After nine months, measures of inflammation were significantly reduced and most of the patients reported a reduction in their symptoms. In a few cases, symptoms disappeared altogether. Since 1983, Dr Ebringer has used this diet at his clinic with great success. In fact, around half of the AS sufferers who try it dont require any medication to control their disease.

Although these are great results, the process of using diet to eliminate Klebsiella can be greatly helped along by taking a few specific herbs each day that have been found to be active against this microbe and also encourage healthy bowel flora. They include freshly crushed, uncooked garlic or allicin-releasing tablets (1 to 2 cloves or equivalent), Golden seal (2g to 3g), and essential oil of oregano (150mg).

Taking daily doses of the following anti-inflammatory herbs can also help to control symptoms while the low-starch diet and anti-microbial herbs do their work: Boswellia (1,200mg of extract standardized to 60 to 70 per cent boswellic acids), willow bark (doses containing at least 150mg of salicin), ginger (1g to 2g), turmeric (6g to 8g), and celery seed (3g to 5g).

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Comments

beth morrow Posted 20/06/2008

Both of my teenage children have AS -my daughter has HLA-B27 marker my son does not have HLA-B27 marker. Thanks for the informative article.

Paul Posted 03/07/2008

Hey Beth, I'm very sorry to hear that your teens both have AS. One of the best things you can do for them is to get them into good eating habits. I believe it really helps. :-) Good luck with everything!

Christine Posted 05/07/2008

I am 23 and have AS and I was just put on this low-carb diet. I love the weight loss but I am wondering when I can expect results with my back. My doctor wasn't 100% sure.

Kevin Posted 19/08/2008

I'm an AS Survivor as well, and presented around age 13, but was misdiagnosed for 13 years. Average diagnosis time is 7yrs, btw. I am disabled by this, and I wouldn't wish it on my worst enemy. This diet works for some, not for others, and won't replace regular physiotherapy exercises you can integrate into your daily life. www.kickas.org is a great support group online.

Kevin Posted 19/08/2008

I'm an AS Survivor as well, and presented around age 13, but was misdiagnosed for 13 years. Avg diagnosis time is 7yrs, btw. I am disabled by this, and I wouldn't wish it on my worst enemy. This diet works for some, not for others, and won't replace regular physiotherapy exercises you can integrate into your daily life. www.kickas.org is a great support group online.

true Posted 14/09/2008

hi my 14 year old (almost15) year old daughter has undifferentiated Juvenile Spondyloarthropie with enthesopathy . Does the lSD help if you are negative HLA-B27? also my daughter is an active athlete sometimes competing at the national level, doesn't she need those carbs from starch for energy? she exercises regularly and intensely at least 6 days a week. presently her spine is not affected but her large joints are . ankles ,knees , wrists , elbows, fingers , toes.its hard enough to get calories into her. thanks for the info

Ann Posted 29/10/2008

Hi, my A.S was missdiagnosed for 5 years. Although I still require medication ( Froben SR ), I found a big relief in doing hot yoga. The heat and streching combined is bringing back my range of motion and mobility. Try it.

Tina Posted 30/10/2008

My daughter swears by the hot yoga. It really helps her. I wish I could get her to cut back on starch.

Robert Posted 15/12/2008

I've had AS since 1988 (diagnosed). At first I was taking Naproxen and recently I've been taking Ibuprofen (about 600-800 mg) a day. I've been taking the Ibuprofen for several years (every day). So, I went to a party recently and drank a goodly amount of Chardonnay. Since then, my pain as disappeared. believe me, it is quite miraculous...Miraculous until I did a little bit of research. It seems that Chardonnay effect and kill Klebsiella. Without the Klebsiella or the copied response in those with HLA - B27, then the body has no need to fight (inflame) the body in response to bacteria and/or the Molecular Mimicry response do to the HLA B27 marker. This was reported by the American Society for microbiology. So, if the Chardonnay (fairly good amounts, but only one time) erradicates the reaction of the body's defense to the bacteria and/or the protein Mimicry due to the AS marker, then the condition will go into a state of remission immediately after the substances in the wine have been absorbed into the intestinal tract. This should immediately be followed up with a lower starched diet. So far I have not taken any drug, including the wine--since that few glasses. This appears to be a cure, or at least a method to trick the immune system to stop attacking through use of inflammation.

joe Posted 02/02/2009

I was wondering if anyone has looked into Phage therapy to rid the intestine from klebsiella species, so that there would be no molecular mimicry

Lisa Posted 20/02/2009

I was diagnosed 18 months ago and suffer acute flairups. Don't know why. Drugs help but I don't want to rely on them...just about to embark on a low starch diet for 3 weeks to see the effect. Having probably the worst flair up yet which was debilitating...something has to work. Wish me luck!!

Kristy Cowan  Posted 18/03/2009

I am now 33 , but have had AS & the HLA-B27 since the age of 10 ! I am now going to go by this diet like it is going to save my life !!! This is a BIG RAY of hope ! Thank You ! Kristy ! If anyone wants to ask anything I will check this site everyday !

Lisa Posted 20/03/2009

Further to my posting on 20 Feb...diet seemed to work then flared up again. I'm going to try it for longer though. I've lost 9lbs which is great!!!!

Indrajit Posted 11/04/2009

I was diagnosed with ankylosing spondylitis around one and a half year ago. Since then I had acute flair ups. About 6 months back, I took Threptin (protein biscuits in India) and found some miraculous results. Then onwards I stopped taking medicine (indomethacin and sulfasalazine) and was doing well. Now I am in US and recently got a flair-up which is still putting me down. But interesting thing to notice was that, I stopped even considering diet control, so perhaps total negligence was the main reason for getting this recent attack. Few days back, I stopped taking starch completely and found immediate effect, just yesterday night I did not feel like cooking and took some cookies and cake again, and the pain restarted.

Jan Posted 13/04/2009

I have recently been diagnosed with AS but have been having symptoms for years, which have escalated over the last 5 years, since I had a dislocated knee joint twice. 2 slipped discs ( symptoms have just gone on and on and worsened), 2 years ago one SI joint started flaring up and 1 year ago the other SI joint started flaring together with my 2 ankle joints. My right shoulder and right hand have just started in the last 6 months. I'm quite interested in the fact that the highest incidence of SA appears to be in Alaska, and I have been much worse since living in Scotland (12 years), I wonder if weather is at all relevant. Is anyone else's joints flair up with barometric pressure and damp weather conditions? I am also in extreme pain and have just fallen on this article about a low starch diet. For years I have craved carbs, maybe this is my downfall! Please can someone explain what is 'Hot yoga'. I currently do Hatha and think this helps.

Tim Posted 17/04/2009

Has anyone followed up on Robert's comments about Chardonnay? Robert, how are you doing now? Were you kidding around about it or is it true?

Nicky Posted 21/04/2009

Hi Both myself 46 and my daughter 24 have AS diagnosed at age 18. We have only recently found out about the low carb diet.. we will give it a try and let you know how we get on. I have found swimming helps, also pilates. Does any one know if cheese is a good or bad aspect?!

moft Posted 24/04/2009

Hi, I've been suffering from AS for 16 yrs. I have been on sazo metho and painkillers and I am not totally pain free yet. I will try the low starch diet... Also doing yoga and the only saving grace is no spinal deformity on x ray. I am getting sick and tired of flare ups... I am also interested to know about chardonnay... Does anyone know more about this?

Nick Posted 01/05/2009

My son Tim, 22, was diagnosed with AS 12 months ago after a painful back for 3 years. He may be offered Anti-TNF drug treatment if his pain continues at the level it is now but, before he goes onto it we are giving the no starch diet (NSD) a shot. I have also gone on the diet as I have IBS (irritable bowel syndrome) and it's supposed to be good for that as well. A surprise for me is that after 10 days on the diet knee pain that I have had since I was 16 has suddenly dramatically lessened. I have spoken to a specialist who thinks I have a mild version of AS, apparently IBS is a closely related disorder. My son has not as yet got any relief but I understand it can take 5-6 weeks for it to work. It's also very easy to slip up on this diet as starch is present in so many things. I'd love to talk to somebody else who is going through the initial stages of the diet, I am finding it tough to know what to eat. If you want to e-mail me for easier interaction feel free. I am nick.gent@lineone.net. I will post anything of significance to this forum.

Margaret  Posted 28/05/2009

Hi I was told I had AS last November having been in pain in my back for many years (mis-diagnosed) and accute pain in my right foot and heal area. Thankfully I was put onto a great specialist here in Australia who is one of our leading AS doctors. I am now able to have Humira injections and since starting them last November my condition in the back has improved by 70% although we are still trying to get some kind of relief in the foot area . I have now been put on Methotrexate as well to see if the two drugs together will mproves it. I was amazed by all your stories and will most certainly try the diet and see if that gives me any relief.

Susan Posted 04/06/2009

I started getting flare ups when I was 23, but didn't know what it was - despite the fact that my dad is completely fused from it! I wasn't diagnosed until I was 37. The docs here told me women don't get it, so they refused to test me. I pushed, thankfully. I wouldn't wish this on the devil. I take Indo and Sulfazine...I am going to try this NSD - and I'm also going to buy a case of chardonnay!! Yee-haaa!

Toni Posted 05/06/2009

Margaret, I would be really interested in who your specialist is, I have AS and am struggling on Methotrexate, my specialist would like me to start on the injections, but I'm not real keen. Somebody told me the other day about the starch free diet and I am really keen to try it.

Danny Posted 18/06/2009

I was advised a few years ago that I was a bit stressed. Anyway, at the same time I was told that tomatoes, potatoes and aubergines were bad for AS. My AS was so bad at the time that I thought I'd try excluding these things from my diet. The result was miraculous and I've never looked back. I took it a stage further by trying "the hay diet" which advises not mixing carbs and proteins in meals. As I love my meat, fish and veg and cook a lot at home this has basically translated into a low-carb diet which again seems to have helped. Recently however I've had some bad flare ups and for the first time ever, in the ankle leading to swollen calves. Has anyone had that before?

Ryan Posted 05/07/2009

My doctor has got me on arthrotec & sulfasalazine. None too happy about that. Gonna try low starch and chardonnay. I've had the condition for about 11 years I am now 31. Very painfull in my right sacroiliac joint, toes and right hip. I go to a deep tissue massage twice a month and try to stretch as much as possible. I am a landscaper so staying active is probably good for me, and for anyone with our condition. Don't let it beat you down!!!

Chrissy Posted 09/07/2009

Hi everyone I am new to this disease although I have joint pain on and off for ten years. I am 28 and pregnant with my second child and find the AS is a very difficult disease to deal with when you are pregnant. The most commom thing I have heard from numerous Doctors, Rheumatologist and Naturalpath is come back when your not pregnant. I find this very frustrating and disappointing as I am in a great deal of pain now and am only able to take Ibuprofen for another couple months untill the third trimester. I am going to try the low strarch diet to see if it helps but if anyone out there can give advice it will be a great help. Thanks

Cherry Posted 29/07/2009

After many many years of pain with AS and taking medication, it is such a relief to discover that other people are sharing tips on how to manage their pain and condition. I am at the stage where my IBS has become intolerable and I am so very bloated. I will try low carb eating and the chardonnay!! Has anyone else tried the chardonnay?

Lane Gerber Posted 04/08/2009

I am 70 year old male with AS approx 15 years. I take Humira injections every 10 days + methotrexate once a week. Just heard about the low carb diet. Questions: how long to work? Wonder what the percentage of success is? How come so few people in the US have ever heard about it and it's not in the AS newsletter? Chardonnay? really?

Lane Gerber Posted 04/08/2009

I am 70 year old male with AS approx 15 years. I take Humira injections every 10 days + methotrexate once a week. Just heard about the low carb diet. Questions: how long to work? wonder what the percentage of success is? how come so few people in the U.S. have ever heard about it and it's not in the AS newsletter? Chardonnay? really?

LeAnne Posted 05/08/2009

Was diagnosed in 05/09 with AS. Have had 3 sessions of Remicade, 3rd time my body's reaction was too dangerous to continue. I have Celiac and SIBO (small intestinal bacterial overgrowth) which both have restrictive diets. Just found this low starch plan. Am very curious if the SIBO issues may have triggered the AS to appear? anyone have any experience with these? I am ready to try low starch, guess I'll be eating meat and veggies (can't do dairy).

Dave Posted 06/08/2009

I've suffered from AS since 1985 and discovered the low starch diet about 4 years ago and have been on it since. My pain has reduced about 90% although I still take medication (dihydrocodeine and diclofenac sodium). I still get a flare up every few months which lasts for about a week but that is bearable compared with the constant pain I used to be in. What I have noticed in recent years is I seem to catch every bug going around. Does anyone know if this is due to a deficiency in my diet and if so what can I do to combat it without reverting to eating starch.

rozalia Posted 23/08/2009

my son he has AS for 4 year and he is in a lot pain i like to get some advice

Katherine Posted 28/09/2009

Hi, I am 62 and just got diagnosed with AS. I have noticed throughout the years that I have Raynauds, oral ulcers, IBS, and about 10 years ago I developed painful toe pain and shortly after that I started getting back pain. All old people get back pain, right? Anyone else out there like me.

Lee Posted 29/09/2009

Hi, I am 32 and was diagnosed with AS about ten years ago after years of wrong diagnosis. I exercise regulary and try to keep active as much as possible.I am currently having a bad very bad flare up and its really getting me down so I'm gonna give the low carb diet a try. I have alot of pain around my chest and rib areas, does anyone else have trouble here?

George Posted 01/10/2009

I'm 30 and was diagnosed with AS at 19. Since the age of 25 I was getting sharp pains running down my leg, that use to leave me limping most days. I'd say it was from inflammation of the SI Joints. For 6 months now i have stopped all soft drinks, fast foods, chocolate, lolies, sugar any foods that are refined or processed. I have my tea with no sugar and no milk. I am feeling better, yes. Probably 60-70% better, the sharp pains has gone now for months. But I feel that the diet may not be enough to rid this disease, it may help reduce the amounts of bacteria, but i feel there is still an underlying facter triggering this.

Wendy Posted 10/10/2009

I was diagnosed with AS about 7 years ago - I am now 44. The pain is mainly in my left hip and lower back, but I've had problems with my shoulders, hands, neck, ribs, thoracic area and heels. The things I find the worst to cope with is fatigue and depression. I feel like the only way is down and that there isn't really anything to look forward to other than more pain and no energy to do anything. I've tried Glucosamine, Green lipped mussel extract, cod liver oil, linseed oil and Manuka honey and wine vinega. I think the cod liver oil helps, but not sure about the rest. I did try lowering my starch intake, but didn't really notice any change. Stress is a big no no. I'm under quite a lot at the moment and it makes everything hurt and the depression worse. In fact, I'm on the Chardonnay right now, but not because I thought it would do me any good lol! Perhaps I ought to drink more if it will help. (Any excuse). The only way I keep on top of it is by trying to keep it in perspective. There are many people out there who suffer more than I do. At least I still have quite good mobility. I just wish I could kick the dfatigue and depression. Any one have any ideas?

Brett Posted 12/10/2009

Take Vitamin D for the depression, and for a lot of other things (joint and muscle pain). Not just the 400IU, but up to 4000IU a day. It will help. Give it 4 weeks or so.

Jess Posted 14/10/2009

Hello everyone, so glad I found this site! I'm 31 and I have had AS since I was 19, finally getting diagnosed when I was 28. I also have psoriasis (on my scalp) that I was told comes along with the AS and I frequently get eye problems/ infections as well. Oh, someone mentioned that they have chest/rib pain - that is Costochondritis and its an inflammation of where your ribs meet the sternum. I was also told by my specialist this can be common with AS. I get this ALOT, it sucks big time. Just getting out of bed is a major ordeal.

My AS only affects my left side and when I'm having a bad flare up, I can barely walk. I had been going to a massage therapist every week or two but a few months ago, I moved from Canada to the USA to attend school for 2 years and my extended medical is gone now so no more massage therapy - its too expensive here. I do yoga, pilates, spinning (cycling), and elliptical machine at the gym on a regular basis, and now weights as well. Trying to get in good shape and maintain that. I always feel better when I work out and stay active. I am going to give the low starch diet a go now - I'm tired of being in pain all the time. Is there anywhere that lists the foods we CAN eat on this diet and some recipe suggestions? I have a huge sweet tooth and love carbs so this will be difficult but I'm sure it will all be worth it in the end.

Andrew Posted 15/10/2009

I have been suffeing from AS for about 5 years now. My pain started in my lower back at the age of about 13 and was misdiginosed for 4 years. I just recently changed from using Enbrel to Syponiam I don't like taking the injections and would love to try something different. What is the best way to start the low starch diet?

Andrew Posted 16/10/2009

I have been suffeing from AS for about 5 years now. My pain started in my lower back at the age of about 13 and was misdiginosed for 4 years. I just recently changed from using Enbrel to Syponiam I don't like taking the injections and would love to try something different. What is the best way to start the low starch diet?

Dave Posted 18/10/2009

Thank goodness for this site. I have been fighting this for a while, and now researching for relief.

I think starchy foods make things worse. And last year I felt fantastic after eating steak 5 times a week. Then I rode bike, and felt great. Then I fell back into my favorite starchy foods. Now I hurt again.

I can't wait to try the Chardnay experiment. I will post the result in a month. Good luck, I feel your pain.

lynne Posted 28/10/2009

Hi...my husband has AS.. he is 37 years old. Diagnosed I think 7 years ago..he is suffering the pain now..just now almost 3 days.. He's taking ibuprofen 800mg. I'm so worried about his pain,,,I'll tell him about this site, the starch diet and the chardonnay? Where can I find Chardonnay?.. this site is very helpful

lito Posted 03/11/2009

I've been good recently but the last 12 months have been shocking. I'm 38, a carpenter with a young family and though I've been suffering with AS for over 10 years, minor and major flares. Officially diagnosed in Feb 09, the anti-inflammatory pills prescribed started a big negative side effect with my guts. Proper Ulcerative Colitis, bad fatigue, bleeding, weight loss. AS has been intense in my ankles, toes Sacro joints, ribs, lumber vertebrae,neck, shoulders, jaws (chronic!).Steroids have cured the guts, now I'm dairy free too. This Helps! I've got Humira. Bad headache but almost no AS pain. I don't want to risk another Winter episode. This has put a huge stress on the family, my partner has a lot of anger, like I'm to blame somehow. Bring on the vino research! I've downloaded and read a convincing e-book about the zero starch diet, it's seems difficult to put into practice, a real-world shopping list would be good? Chin up and stay mobile.

slider Posted 07/11/2009

I was diagnosed in Feb of this year HLAB27+ and xrays show partial fusion C2-C6. My neck was really bad back then but is improving. I have been on low starch diets since about March with great results. Losing 20 pounds has not hurt either. There is a great list of foods on kickas.org for what is good and bad. I have also been taking a supplement called cetyl myristoleate which has really helped out on the knee pain. (doesn't work for everyone but works better with a low starch diet) My best friend is my exercise ball and helps keep me loose. So far no meds for today at 6 pm.

Mari Posted 19/11/2009

This is mostly for Wendy. I've had AS for 29 years - took 8 to get diagnosed. One excellent Rhuemy, also figured out that I have Fibromyalgia. He said not uncommon to have both. That could be a reason for fatigue & depression. Ask your Dr. about FM meds. This is a good site, I will try the low starch diet. Already do the Chardonnay (strictly medicinal - ha, ha). Gentle exercise seems to help me, too. Be careful not to overdo or you will pay. Thanks for this site!

Linda Posted 15/12/2009

I've had AS (also rheumatoid positive )for 26 years and frankly have had enough! I feel like a condemned building that's held together by scaffolding (that's all the titanium in my body). Actually I'm terrified, this morning I woke up and my right elbow is no longer straight. It happens that fast, mind you at least it matches the other one now. I've just discovered this site and it's good to not feel quite so alone, so thanks for that everybody.

mick Posted 10/01/2010

I was diagnosed with AS in 2000. I am now 33 - feeling ok at the moment but can have bad pain sometimes. I am going to try the low carb diet tomorrow. Love the chardonnay already. Arcoxia is the meds in on - they do the trick...good web site!

Alex.s Posted 12/01/2010

Wow! love this site! im 19 years old, diagnosed 4 days ago after 2 episodes of serious Iritis, HLA B27 +ve.

What's Hot Yoga???? very intrigued, anyone know??? is it like yoga in a hot room?

Going to try Low starch im bored of pain, and definately the VINO, i can honestly say the diets gonna be more of a challenge than the chardonnay :D

Keep Smiling Guys!

Kelli in Ga Posted 18/01/2010

So glad I found this site! I am a 38 y.o. mother of 3, former dialysis nurse. It has taken me 12 long years to finally be dx with AS...after years of bilateral joint pain, numbness, stomach pains, joint stiffness, etc. I tried Humira, but couldn't tolerate due to horrible headache (so bad I barely moved for 6 days)..not possible to stay that way as a mom! I also have Chiari malformation...long story...may contribute to headaches....had to quit working...it is so hard not to be depressed, I was so active before....is there a chat room for AS any of you have found helpful? I am big on carbs and have got to give this a try.....nice to know others know how you feel!

Gerri B Posted 18/01/2010

My son was diagnosed with AS October 2008 and within a month had his large intestine taken out and a bag fitted and he was 27. He is now getting on with this life but still suffers with his back. Will tell him to cut down his bread intake and also to try the wine to see if it helps.

Carol Posted 20/01/2010

I was diagnosed with IBS 4 years ago and put on anti depressants!!! Have now discovered I have AS. After reading Carol Sinclairs Low Starch Diet Book and following the diet have found great improvement in IBS symptoms but still have lower back and pelvic pain, maybe need to eliminate starch altogether. I drink Chardonnay on a fairly regular basis but must admit haven't been aware of any less pain, just a sense of well being! Manage without any drugs, Own my own gardening business so manage to keep very fit and still flexible. Long may it last.

Chris Posted 22/01/2010

I haven't been diagnosed by a doctor as of yet, but I found on my own that corn starch effected me the worst of all starches. But alot of my symptoms still remain. about a week ago I started reducing all other starch from my diet. I just found this site and am very hopeful that I might finally see some progress. I have had these symptoms for 11 years now and the doctors just look at me with a blank expression to this day.

Tony Posted 26/01/2010

Hey all,...well done to whoever got this site going! As a sufferer 25 yrs ago and then I used tumeric powder in hot milk: approx half a t-spoon, any more and it's like eating chalk. Hope Guinness start making chardone...

Andrew Posted 02/02/2010

I am 54 and have suffered from AS since I was 14 years old. Little was known at the time about AS and it was first diagnosed in me as growing pains. I was eventually correctly diagnosed when I was 25 years old and immediately placed on NSAI medication and subjected to a rigorous routine of exercises. I have been taking the medication for the best part of my life and at times have been in absolute agony with the AS, however I've always refused to let it get the better of me. My immune system started attacking my bowel in 2001 and I have since been diagnosed as having Crohns Disease and it was at this point that I discovered the low carb high fibre diet, mainly as a means of counteracting my continuously upset stomach...... it worked womders. I put it down to gluten at the time and also considered the possibility of milk intolerence. To this day I drink lacto free milk, however the low carb diet isn't going so well... too much of a sweet tooth I'm afraid!! My saviour has therefore been the Anti TNF treatment (Humira) and since being prescribed this a year ago I have been absolutely pain free. I believe therefore that it is a combination of good food i.e low carbs and sensible exercise supported by appropriate medication.

Rob Posted 03/02/2010

I have recently suffered with Uveitis (Iritis) and having read this is a sympton of normally another condition, read through the list to eliminate what is could possibly be!? After reading the symptoms of AS, I am now waiting to get confirmation from my doctor that I actually have this nasty disease. I have spent hundreds of pounds over 20 years going to Physio's with mystery pain thinking it was being caused by sports injuries etc and could never get an answer, but now everything points towards this condition! I just put it down to getting older and playing tremendous amounts of football and sports. After a recent MRI scan and indication from my doctor that my back was not in bad shape in my mid 30's, I actually was annoyed by again having NO IDENTIFICATION of these disease. I have seen doctors and physios for years without the slightest mention of possibility to diagnose as AS. What fascinates me is the lack of understanding although my symptoms virtually matched the description of sufferers of AS. I could never get my head around feeling better after exercise and worse after resting for long periods without sport. Pain in the lower back and buttocks with a sciatic twist or shooting pain down hips/legs is a regular feeling and I've luckily got on with life until my recent eye condition made me look at things differently. There have been days I cannot walk or walk with pain shooting down legs from back and other periods of completely no reaction on the body. I really appreciate everyone that has commented on this board and wish everyone good luck in the quest to ease this horrible condition. I will certainly try the diet and wine options if finally get diagnosed with AS. I would lastly like to say if anyone does read this, who plays sport and has these symptoms go check out first before going to physio's as I first had pain approx early 1990's and was told for years but people with no understanding that I had the pains in my head or was dreaming them up etc which was the most frustrating thing in the World. Considering I played football to non-league level it can go completely a miss in diagnosing properly. God bless all ;-)

Sonali  Posted 04/02/2010

Hey, I am 34 and I was diagnosed with AS at 20. It used to affect only one body part at a time, hip, lower back, ribs, jaw. Have been on painkillers since. About three years ago started doing yoga and within six months I was feeling great and was of the pain killers. But since a year have been living in France and currently am in pain hell. Infact was joking with my husband that if I was an apple product I would be called ihurt. Now my pain levels are shooting throught he roof and in multiple places, including my wrist. Havent been exercising at all. So was surfing the web and came across this site and it does make sense. My diet this last year has been full of starch, the lovely bread, croissants, pasta, rice, biscuits. I can't even breathe right now..on account of the pain. So I am going to go on a non-starch diet for a week starting tomorrow ( have a pasta dinner lined up!), the vino is no problem. I think thats going to be my three pronged approach, no starch, wine and yoga. Thanks for sharing.

Jen Posted 23/02/2010

I was just reading through the comments and came across Jess's from October 12, 2009. I feel like I just read my own biography! I too have psoriasis on my scalp (and my rheumy didn't consider it a big deal), I have had 4 bouts of iritis, and my rib pain came on big time during my pregnancy last year and unfortunately has not gone away. I'm currently on meloxicam and am trying various vitamins and drinking 2 TB of raw apple cider vinegar daily (Dr. Braggs). That,alone has helped my pain, believe it or not! I don't eat a lot of starches, but after reading all of your thoughts, I think I need to be eliminate them as much as possible.

I can't live without yoga and pilates and I can't wait for the weather to get nice again so I can bike outside. I just did my first spin class in a few years and felt great too. I hear swimming is good.

If any of you have a facebook account, join the Ankylosing Spondylitis group. It's a lot easier to communicate and you can post replies to questions. It is a great group of people. See ya there!

Nina Posted 01/03/2010

My sister has AS. SHe is in so much pain right now. I was telling her about the low-starch diet. I hope she does it. She eats alot of pasta and breads.

Sara Posted 05/03/2010

Hi Everyone, you guys are really supportive and have some great ideas. I have been sort of diagnosed for a week, my doc mentioned it about 2 years ago but as bouts were few and far between thought it could just be a strain (fair enough) however bouts have got longer and stronger and I checked it all out on the net on a different site and thought, hey that sounds like me, along with the back and leg pains etc I had discovered a few months ago that I have Pelvic Symphus disfunction too form over stretching in my Tae kwon Do classes! So now it all hurts but have looked it up and if you think you are up to it then try a martial art it is recommended exercise for AS sufferers, it is great stretching and you can go at you own pace, so rather than sit at home like I have for the last few weeks i am going back to classes, along with the recommended daily stretching and for a while some strong pain killers and then hope to be pain free after not long, need to get the low fat, low starch high protein diet going too as am overweight which is not helping! Keep going all a little stretch everyday could be a step closer to being pain and medication free x

daz Posted 06/03/2010

Have had pain in my back for 1 year now doctors were telling me it was an accident I had in 2007 an MRI revealed a retroletheisis in my spine at L5 so I guess they thought the pain was coming from here also i have complete numbness and pins and needles in my lateral left thigh they said it was mirgalea paratsthestica finaly just had a SPECT scan and has shown i have bilateral sacrolitis this is the hallmark of AS, I belive have to see a rhumatologist now but will have to wait 3 months only trouble is I am a bus driver the pain is really bad as i cant get out of my seat for hours its no affecting my walking to Im certain I have it and Im frightened about it all what would happen if i couldnt work etc. is there any other things that can affect the sacroiliac joints like this?

organizer957 Posted 08/04/2010

My father has AS for many years. I am now experiencing many symptoms of AS. Headaches, sternum pain, low back, and neck/cervical pain. I have been reading the comments here and have noticed that many people have IBS. I was diagnosed with Celiac disease 6 years ago. I was wondering if people were screen for Celiac disease? There is a blood test called Ttg, it also has a genetic component. The low starch diet might also be linked in helping AS patients if gluten is a factor. Celiac disease is under diagnosed in the US. Has anybody else considered this?

Super J Posted 10/04/2010

I have been aware of my AS for over 10 years (am 39) and between diclofen, meloxocam, and occasional short-runs of steroids, my body flare-ups are mostly under control. Yoga and the gym have been good. However in the past 2 years I have had more gastrointestinal issues and have been deeply disappointed by my rheumatologists' lack of knowledge and aassistance in these matters. Terrible bloating, gas, pain and diarreah, and after the tests (no Celiac, no Krones, etc.) they want me to see a gastrointestinal specialist, like this is something that has nothing to do with my AS. Also, lately, when I get a cold, it may hit my husband for two or three days, and it slams me for over a week, with painful chest inflammation. I think my immune system is just worn out, under attack from too much bacteria? I am going to try the low-starch diet today, plus add kim-chee and yogurt to beat out that bad bacteria. . .I hope this helps because I can't afford to see another useless doctor.

Dan Posted 18/04/2010

I've been suffering from As for 10 years now. Bikram hot yoga has been my savior. I usually go about 2-3 times per week, and feel about 5 years younger every time i come out of that place. I've also been massaging my back and buttocks with small soft rubber balls. This helps to loosen my tense muscles. I usually do this about 3 times per day.

Boeing  Posted 20/04/2010

Hi. Just discovered this blog. I have had borderline AS for nearly 6 years now. My first flare ( when the disease was diagnosed ) was the worst. Now I am 80 - 90 percent better. Doctors have been surprised at the reversal of the progression, which they say is rare. There is a Homeopath in India who promises a cure. I have been taking her medication for 6 months, never felt better ! Just wanted to say that the flare-ups in my case were mostly stress induced. I know this may sound crazy, but two years ago, I made the decision to mentally fight-out this disease from my body. From being a pessimist and an involuntary negative-thinker, I forced myself to think positive and become an optimist. I believe that this is the single most important factor that has lead to my recovery. A flare-up lasts less than half a day now, and I have extended periods of inactivity that can last up to six - eight months. I wish everyone the best and would be happy to answer questions if there are any. Cheers !

lulu Posted 21/04/2010

ROBERT & CHARDONNAY. what a wonderful discovery this is... do you or anyone else have anymore details to offer such as brand, oaked vs. unoaked, did you drink it til you got the squirts?, etc. any additional info could be the difference between it working and not working. and also, how are you feeling ? update please! i am suffering terribly!! terrified of the drugs and terrified of going on like this. i can only look straight ahead my neck is sooo stiff and the rest of me hurts always. i cant even reach my knee if it itches. unemployed now for 2 years. i can only stand for long enough to have 20 min. shower and its exhausting and painful. this has been going on for 6 years and never a break from the pain. im now 32 and im desperate for a better life. thanks everyone for all the posts, it makes me feel less alone. good luck everyone. cheers.

Andrew Posted 29/04/2010

I agree with this article. I've got Ankylosing Spondylitis and have been modifying my diet to control the swelling and pain in my body for 7 years now. Because of the diet I don't need NSAIDs or pain killers anymore. I haven't got rid of the core meds yet. But, the burning feeling in my body has gone, I have much more energy and I control the arthritis rather than it controlling me.

Would you all mind helping me out? I'm running a survey about the relationship between diet, RA and Ankylosing Spondylitis please? We're all in this journey together. And I'd really like to share what I've learnt with all of you other sufferers to help reduce your pain too.

The survey I've created tries to capture the questions and concerns you guys have about using diet to control RA or Ankylosing Spondylitis. Here's the link:

http://www.surveymonkey.com/s/68BG63N

Thanks heaps

Dean Posted 09/05/2010

I have had AS for some 27 years, at the moment I`m on Morphine (200mg) per day, along with other drugs. I hate AS, even with the meds, I`m still in a great deal of pain as you all know of.

I`ve felt throughout all the years that I`ve had no help or support, one Doctor even said that I`d be in a wheelchair within a year.

At the moment I`m suffering from painful headaches, when my head rests on the pillow the pain starts up, which happens only at night and got me on the search for help and lead me here.

I`d love to be off the meds and not feel tired all of the time.

I`m going to look into this diet and see if it helps me.

It`s nice to see that I`m not alone.

Gilly Posted 16/05/2010

Hello everybody. Have been reading all your comments with interest. The doctor is wondering if I have AS. I have had severe pain at the bottom of my back and hip. Have been taking Dihydrocodeine for months now. I had pleurisy at Xmas time and apparently there is a link between chest problems and AS. Can anybody tell me what kinds of foods I should be eating or not eating? I am in agony in the morning and am useless until my pain killers kick in. In saying that I don't want to be taking pain killers for the rest of my life. Any ideas welcolme??? Will try out anything to get a bit relief from my symptoms.

Soni Posted 23/05/2010

hi everyone.I ve been suffering from AS for last16 years, diagnosed a year back .However i have got a curvature in the spine as i didn t exercise much in the last year.Its great to know about the low carb diet. Will try it.Going through your comments,want to ask if anyone has a spinal curvature and wheather exercices have made the posture a little better?

Megan Posted 24/05/2010

For those of you familiar with supposed connection between AS and Klebsiella, it is not surprising how many have gastrointestinal problems. If the low starch diet helps, it would be most likely due to reducing the numbers of klebsiella or other bacteria, hence relieving the bodies immune response. There is a diet called the Specific Carbohydrate Diet, with website and books available by Elaine Gottschall that may be helpful reading, as it explains how undigested starch feeds bad bacteria and affects the balance of flora in the digestive tract. GI issues may often be helped by avoiding not only grains, but also starchy foods such as potatoes and yams, legumes, sugar, lactose, and even being careful of fruits. Enzymes are also helpful. Salads are helpful for their fiber, enzymes, and nutrients (with homemade dressing). Hydration is important, too.

John Posted 25/05/2010

Hi Fellow Sufferers of AS. Having suffered for over 20 years with this curse, I can vouch the low starch diet is a huge blessing and has turned my life around. Only wish I knew about it 20 years ago before the spinal damage had occurred. 3 years ago I started the No Starch Diet strictly adhering to it. After 2 weeks I noticed a slight decrease in pain and by 6 months is was obvious. I no longer take any medication and generally get a good nights sleep. These days, I know if I consume any starch, within 12 hours and suffer for up to 3 days. If you are on medication of any kind for AS, do yourself a favour and wean yourself off due to the long term health issues of consuming them.

Beth Posted 17/07/2010

I second the suggestion for the Specific Carbohydrate diet. There is a link between Ulcerative Colitis/Crohn's and AS. Many people with UC/Crohn's develop AS at some time. As Megan suggested, getting on the SCD will help with any digestive problems. Be sure to make the homemade 24 hour yogurt as explained in the book. Gottschall's book explains the science behind why this diet works. I have mild UC and when I stay on the diet I am symptom free of the UC, but when I go off I am more susceptible to flares. Just recently I have been having AS symptoms (I have not been following the SCD diet lately - I love breads!) So I'm going to get back on the SCD diet and see if I can get the AS under control.

Raj Posted 09/08/2010

Hi Boeing,

Could you please give me the contact details of the homeopath in India you talked about. Would really be grateful for your help.

Many thanks in advance.

Raj

Jason Posted 09/08/2010

I am currently 37 living in the United States. I have been suffering with AS since I was about 24. I didn't get the official diagnosis until 9 years ago.

When I was first diagnosed I was in a great deal of pain. I spent a good amount of time in wheelchair on vacation since it hurt too much to walk. I was first placed on Sulphasalazine which helped tremendously. Then I switched to Enbrel about 5 years ago. Enbrel has been great but it is expensive (about $1500 per month) and some insurances will not cover it. I feel so good I can now run several miles and exercise with no pain whatsoever.

I tried the low carb diet (only for 3 weeks) and while I lost weight I didn't feel any better regarding the disease. Maybe I didn't give it long enough. This Chardonnay thing really has spiked my interest however.

sharon Posted 13/08/2010

Hi I have been suffering from AS for 20 years; I have tried many diets over the years. The best advice I could give to anyone with this condition is to increase your intake of water. Eliminate all other drinks for a few weeks especially when your symptoms are at their worse. I find that when I am at my worse my water intake is or ususally has been very low and I often feel dehydrated. Water really helps to rehydrate the system and it helps to flush out the gut too, this is especially helpful if you suffer with Crohns as i do. Also eliminate sugar, dairy, and Starch and all fizzy or soda drinks. I also find that alcohol, nuts and cakes especially sponge cakes and biscuits(cookies) make my symptoms so much worse. I usually suffer from back and hip pain, but when the symptoms are really bad the symptoms effect my jaw, neck shoulders, breastbone and Ribs which effects my breathing and also my knees ankles and the heel of my feet. I find it impossible to get comfortable. I feel miserable and at times and depressed, but I refuse to let this disease get me down. The prescribed drugs do not work I just find that I fighting more symptoms caused by the effects of the drugs. At Present I am having a good spell, so I’m going to the gym regularly, I’m swimming and doing gentle cardio such as walking I also do hot yoga and do lots of stretching and strength training using the gym ball. In answer to the hot yoga question, hot yoga is yoga done in a very hot room, it allows the body to sweat and release toxins as well as increasing flexability and mobility, it is not for the fainthearted and it can be painful if your feeling swollen and stiff, but persevere as it can help to ease joint pains. Do not let this disease get you down. Listen to your body make a note of when your symptoms feel better or worse look at what your eating and try to adopt healthier options, but most importantly drink lots of clean water.

sharon Posted 17/08/2010

I posted a message on the 13/8/10 and forgot to say that I have created a facebook group for AS sufferers, I will also be organising meetings and support groups please join, it is called the ankylosing spondylitis diet and support group on facebook, its brand new. it would be great to have your support, Thanks Sharon

Jenny B Posted 26/08/2010

I have had AS since my teens, diagnosed in my early twenties with AS. Put up with alot of pain for years and have recently found that MSG additive 621 causes my inflammation and pain to flare up, it is in lots of flavours chips, crackers etc. I avoid it like the plague and have alot less pain now. Also ate crackers with "inulin"(a processed dietary fibre) in them the other day and had a terrible flare up. Did some research and found out it feeds Klebsiella, the bacteria linked to AS.

Jaguarpaw Posted 28/08/2010

I've had AS for more than 10 years. At this point I hadn't run for a number of years, when I came across the low starch diet, and tried it religiously for 6 months that meant avoiding ALL grains - wheat, bran, barley, rye, oats, rice, malt, maize, quinoa, buckwheat, spelt, bulgur, couscous, corn, semolina, sorghum, polenta, millet etc... and starchy vegetables,fruits and nuts. I began to really observe my body and the effects food had on my body.e.g I can eat good quality bread and like clock work my knees start to swell.I stop eating bread and it goes away. I have found the low starch diet interesting and found certain things work for me. I lost 11kgs. I am back doing my martial arts and exercising daily. I actually did my first tri-athalon this week and am working out at a gym I'm in the best shape I've been in for some time. But still want to see if there is any truth to being 100% drug free on a low starch diet.

My goal this year was to be able to run again and return to back to training. I'm now wanting to be drug free... fit healthy and ontop of this sucker! Don't be a victim to AS you have it in you to take conrol. Listen to your body.I wish you all the very best success!!!

matthew Posted 01/09/2010

I am 48 . I have had AS since I was 18. Lately the symptoms were increasing . I was considering acting on my Rheumatologist's recommendation to to try the TNF biological agent known by various names including Humira . The potential side effects are horrible . I started the low starch diet 13 days ago . The effects are profound . I can stand straight , put my socks on easily , bend over and not wake nightly with back pain . My posture was stooped , and is now much improved . I am a litigation lawyer , and have defended various alternative medicine physicians who have been prosecuted for professional misconduct .In the course of cross-examining conventional medicine experts , I have reached some conclusions about medicine .Conventional medicine physicians will only recommend a treatment modality , when there is a random-controlled double blind study confirming the efficacy of the treatment . The vast majority of such studies are funded by drug companies . Abbott Labs , who make Humira earns at least half of its $45 Billion annual revenues from Humira . Simply put , there is a huge vested interest in those drug companies to continue to sell their wares . No drug company will fund a study to demonstrate that low starch is effective for AS. What they have funded are studies to discredit the science behind the studies that support this treatment. What does this all mean? Don't expect your Rheumatologist to support or tell you about the diet. Mine didn't , although he is capable and compassionate. GP physicians are , by and large in the same boat . Please try the diet , but be sure to eliminate almost all starches. If my wife hadn't come accross the diet , I would be scheduled to start the Humira medicine ,which aside from being prohibitively expensive , is potentially very dangerous . There are numerous examples of drug companies manipulating science to discredit treatment modalities that will lessen their market share .Drug companies in the US have been caught misdescribing the side effects of drugs and skewing research . Physicians are trained to insist on the type of studies I described above . Only the drug companies have enough deep pockets to fund this research . The net results are that rheumatologists will not accept that this diet works , calling experiences such as mine , only anectdotal . To all you AS sufferers , please try the diet . Stick to it . It has made me much better in a short time period . Your physician will tell you that the science isn't there to support it . Do your own science experiment on your body . One day there may be a society where governments fund such trials , but until then , don't be swayed by the conventional medical establishment . I don't want to sound like a zealot , but we have to put the word out about this diet.Conventional physicians will not , by and large , help ,and may well resent you for telling them that it works . I am not a conspiracy theorist , and consider myself a rationalist at heart . But Caveat Emptor , let the buyer beware .Don't always look to conventional medicine for all the answers . I have great faith in my physicians for certain medical problems. But I was let down on this subject , as I could have been on this diet twenty years ago , and eliminated countless hours of pain, limitations and suffering.



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