How A Low Starch Diet Could Ease Ankylosing Spondylitis Symptoms

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Like so many scientific discoveries, ankylosing spondylitis 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).

Ankylosing spondylitis 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 Ankylosing Spondylitis, fusion of the spine occurs, which can lead to considerable disability.

Ankylosing spondylitis 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 ankylosing spondylitis, around 80 to 90 per cent of people with ankylosing spondylitis 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. Then he found high levels of antibodies in the blood of ankylosing spondylitis 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 ankylosing spondylitis, 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. 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 ankylosing spondylitis 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 ankylosing spondylitis 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 ankylosing spondylitis 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 standardised 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).


Disclaimer: Bear in mind the material contained in this article is provided for information purposes only. We are not addressing anyone’s personal situation. Please consult with your own physician before acting on any recommendations contained herein.

Sources:

Ebringer A, Wilson C. Clin Rheumatol 1996; 15 (suppl 1): 62

Erbinger A, Wilson C. J Med Microbiol 2000; 49: 305-311

Finegold SM, Sutter VL, Sugihara PT et al. Am J Clin Nutr 1977; 30(11): 1781-1792

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  • I am recently diagnosed as AS. I have read all your posts…just wonder as Klebsiella is the cause, why not taking anti-Klebsiella drug to cure the AS?

  • hello everyone, I’m 23 years old and for 1,5 years I’m suffering pain. it started in my hips, now i have pain in my lower back, buttocks(esspecialy when sitting), my right toe is swelling for about 4 month, and right knee for 1,5 month. i feel like old grandma, can’t dance anymore, run, or enjoy my life. i have HLA-B27 positive, but for now in SI joints CT doesn’t show damage. doctors can not make diagnosis, so i’m still waiting. and God knows how hard it is. by the way i had uveitis 1 year before. for now i’m taking sulfasalazine, non-steroid anti inf. drugs and corticosteroids. because my swelling joints was impossible to control. I am really sick of living that way, i dont have good days, my pain is always severe. just before 3 days i found about this non starch diet. but the thing is that for me is very hard to understand what i can eat and what cant. hopefully in time i will findout. living with this pain and disability to move as a normal person is killing me…

  • If you want to fully get rid of your AS, diet alone won’t kill the klebsiella pneumonia bacteria, which is the root cause of AS. In addition to the low starch diet, consume a good quality probiotic to re-populate your gut with good bacteria. This will help battle against the bad bacteria. Take some antibacterials such as garlic, caprylic acid, coconut oil, grapefruit seed extract, oil of oregano.
    A low starch diet is good for not feeding the klebsiella pneumonia, but what you want to do is kill it altogether.

  • I’ve just started with R.Compound from Alarsin, an ayurvedic medicine. I hear the manufacturer is very reputed in India. They have a website too. Hope it helps cure/manage AS. My two cents. God Bless!

  • HI I AM FROM INDIA AND DIAGNOSED WITH AS BEFORE 3 YEARS.I HAVE BEEN PRESCIBED WITH SULFASALAZINE AND REMICADE(INFLIXIMAB).REMICADE WORKS BUT SULFASALAZINE DOESNT.I AM NOW THINKING TO TRY THE LOW CARB DIET.KINDLY SUGGEST ME AS TO WHAT SHOULD I EAT AND WHAT NOT.WAITING FOR YOUR REPLY IN MY MAILBOX.

  • Hi I am from India and diagnosied with AS before 5 years at Menopausal age. I am keeping myself mobile with Yoga and stretching exercise and without any allopathy medicine. I have started Homeopathy but still need to get great results. Only advice- be cheerful, find some purpose in life and remain active despite pain.

  • Hello, it’s lovely to read all your words! I’m back here again because i’m not feeling the best and I sort of wanted to moan. Deep breathing is painful, coughing, sneezing, and its been chronic like this for weeks/months.
    Diet? yes there is direct influence.
    My son is somewhere on the autistic spectrum, he was really withdrawn but due to the Specific Carbohydrate Diet he’s improving daily. This diet has been the religion in my home for the last year and there have been benefits for my AS and Ulcerative colitis. So much so I decided to come off the Humira injections and try to substitute remission through this diet alone. it has’nt been entirely a success but that’s because I’m working away from home and eating the wrong stuff. It’s not easy but if you have your own kitchen you have no excuse being in pain ALL the time. read up’ breaking the vicious cycle ‘ try the Kickas recipies, Almond bread, muffins , eat some Healthy stuff.You who doubt, read the evidence. Docs will always be on the fence. take the reins people! and don’t forget to stretch. and avoid the starches.

  • I was also diagnosed with AS couple of days ago. I have IBS since an year or even more. I searched the internet for all related articles and came to the conclusion there is close corelation betwenn both diseases. My silly question to everybody here is: Does anyone know how the bacteria causing IBS can be indentified? I do believe that if I cure my IBS the AS symptoms will ease or even disapper. Has anyone tried the low strach diet in combination with proper antibiotic?

  • It is great to hear all the success stories here for your diet changes – I applaud you all for your perseverance and strength!

    I am wheat, corn and mostly milk free – any miniscule amount of wheat or corn can flare me us for at least a week. I will use the inspiration from others here to tighten my grip on my AS – as i am mostly better but it is a B minus – could do better.

    It it my mission to put the message out that diet can work for a lot of people (not everybody) and that meds should supplement a diet when required.

    Good luck to you all!

  • Does anyone know a starch-free ibruprofen?
    Hi, I’m currently waiting to have an MRI to see if there’s evidence of AS, but as I’ve had IBS for 20 years, I started the NO starch diet anyway (2 months ago). It’s gone very well (in terms of IBS free days) but in my case, I find I have to be SO strict with it – I’ve had a few steps back which I’ve later always managed to attribute to yet another source of (very small amounts of) starch that I was mistakenly eating (e.g. unripened apples, black pepper, ginger root etc). The situation this week was that my IBS has been bad for four days, and I was losing confidence with the diet’s long-term benefits…. But yesterday, low and behold, I discovered my ibruprofen tablets (taken daily – just waiting for those ulcers to come along!) were full of potato and maize starch. So watch out everyone, check any medicines or supplements for starch – it is a very common filler ingredient in most medicines. Does anyone know a starch-free ibruprofen? I’m off the pills for a day and can already see an improvement but what do i do when the pain is bad again tomorrow morning?!. In terms of joint pain, results from the diet aren’t quite so good – no back pain since the diet but lots of nerve pain in my leg. I’m going to keep trying as I’ve never managed a fortnight so far without mistakenly eating any starch and as I say the IBS is loads better. Husband thinks I’m clutching at straws but I’m going to keep grabbing them as tight as I can. Good luck everyone!
    PS re beans and Dr Ebringer – as far as I can work out, Dr Ebringer first recommends a LOW starch diet as it’s easier to keep going with, rather than the NO starch diet that some people swear by. So maybe he keeps beans in for this reason???

  • Carol quoted:
    The low starch diet as described by Dr. Ebinger says that beans are a recommended food. I thought beans are a resistant starch which feeds the Klebsiella. Please clarify.

    I am also curious about this… Any insights? I am an avid wheat and sweet potato lover, but I am willing to give this diet a chance.

  • Hi Im 42 and have been suffering from back & hip pain for as long as I can remember. Like most of you I have spent $1000s at physios, drs & chiropractors. I have suffered from iritis for 14 yrs & like my brother am HLA b27 pos, my brother has chronic AS for 10 years but it took him approx 8 yrs to be diagonised. I am in pain all the time & am now suffering from chest pain & difficulty breathing. I feel I may have AS but cant get in to see a specialist till 2012. I take whatever pain meds I can to get me to sleep, then to get me out of bed. I feel so depressed Im not sure where to turn.

  • I would definitely like to give a try to low starch diet again .I have tried the diet last year and it has helped me in reducing the pain but after that i have left the diet.and again now my pain is suddenly became worse .

  • Hi Everyone

    I have been suffering with AS for about 7 years. i guess its good to speak to people who understand how painfull an attack is. we always go through life seeing other tragedies and sad stories of people suffering with various diseases and some how think – this could never happen to me, and then you get diagnosed with AS. At times im sure you all have felt that AS has taken over your life and you just want to give up but then we discover a forum like this and realise we not alone. Im so happy I have come accross this web page and would love to start the starch free diet, can we perhaps post what foods exactley are starch free? push through the hard times to get to the good times and dont give up!

  • Hi Everyone.

    I suffered from AS/IBS and Crohns Disease for 12 years. I discovered the starch connection and decided to read everything I could on the subject, Dr Ebringer, Carol Sinclair (The Low Starch Diet) and Elaine Gotschall (Breaking The Viscious Cycle). A low starch diet did not work for me. A no starch diet put me into remission. I started to feel the benefits after 3-4 weeks. I Was symptom free after 6-8 weeks.

    No more joint pains.
    No more IBS/bowel trouble.
    No more rashes.
    No more iritis.
    No more fatigue/depression.
    No more back, chest and hip pain.
    No more muscle ache or fibromyalgia
    No more limping.
    No more wheezing.
    No more tonsil/sinus/ear problems.

    I feel better than I have ever done! People ask me how I can avoid starch? I just say that the only thing that I am avoiding is pain, disease and future disability.

    If y ou are going to give this a go, please be strict, and give it a chance (4-6 weeks at least).

    Good luck all. There is hope !

  • have tried evrything for AS nothing has worked up to now.ginger and turmeric helps,also i am trying a new product right now and it helps with the depression,liver ,AS and a lot more the name of it is SAMe,sammy or S-adenosylmethionine.also going to try the chardonnay.

  • I am 36 and have had horrible back pain for about 13 years now. Finally got diagnosed properly. Am on pain killers and diclofenac. that combo works most of the time, except for the past few months. The pain is unbearable. I am definately going to try the low startch/high protien diet, as well as the chardonnay. I hope this works, thank you all for sharing your experiences!!

  • Was diagnosed with AS yesterday after about 17 years of back pain and stiffness. About 7 years ago I started seeing a particular physio who told me to get down the gym; which I did pretty religiously for for that time. I also improved my diet (as consequence of trying to be generally healthier). And subsequently almost all pain disappeared until recently. I am convinced that a big diet change I made about 8 weeks ago has caused me to flare up and led me to now get a diagnosise. The long and short of it is that the diet I went on was a ‘bulk up’ diet – so was eating loads of oats, pasta, sweet potatoes, protein shakes. I have almost no doubt that it is this change in diet which has aggravated this horrible condition; but I also have no doubt that reverting back and maintainig a healthy lifestyle – plenty of exercise and god quality food can put it back into a manageable place! I certainly hope so anyway

  • Chardonnay – the answer to everything? Let’s hope so. Have had AS since 22, am now 56 and have just been taken off Naproxen due to stomach problems so am looking for diet alternatives and all your suggestions have been really interesting. I have kept AS at bay for years teaching bellydance and trying hard to ignore it but do have severe outbreaks about twice a year so am gonna go for the diet and may even try the wine – of course I will!

  • I am 34 and have been ill with various IBS symptoms, back aches, and major fatigue for about 2 years now. My Dad has AS, I am HLA B27 positive and I’m convinced that I have AS too (although the various Dr’s I’ve seen all say that AS can’t be officially diagnosed until there is X-ray evidence of nodules on the spine). I tried a starch-free diet a few months ago and all symptoms disappeared within a week or so. Also, I discovered that Chardonnay wine helps to kick-start the IBS healing. I believe that Klebsiella Pneumoniae (a friendly bacteria found in many peoples guts), sets off an auto-immune response by people with a particular genetic makeup. For these people, the immune system trys to destroy the Kleb.Pneu. but also gets confused (called Molecular Mimicry) and continues to fight certain cells in the body which look like the Kleb.Pneu. Now, when the Kleb.Pneu. feeds on starch (which isn’t digested properly in the small intestine), this increase in food allows the bacteria to multiply, causing an even greater auto-immune response… Putting an even greater strain on the body. I discovered a scientific research paper explaining how Chardonnay wine had ‘anti-bacterial properties against E-Coli and Klebsiella Pneumoniae bacteria’. Apparently, during the wine-making process (particularly cheaper varieties of Chardonnay), there is something called ‘Malo-lactic Fermentation’, which increases the amount of Malic Acid and Lactic Acid in the wine. These chemical constituents of the wine helps it to kill the Kleb.Pneu. bacteria (Try Googling ASM, Chardonnay and Klebsiella Pneumoniae). Anyway, whenever I eat something starchy by mistake and my symptoms return, a few glasses of cheap Chardonnay kick-starts my healing… It sounds stupid, but if your symptoms are bad, try it and let me know if it works for you.

  • Hi all, I’m a 34 yr old female. I was diagnosed with AS in October last year. I’ve been moaning and groaning about “hip” pain for five years ( after the birth of my son ), but only after stabbing pain in my eye, I went to see a Dr. I was told diet makes no real difference, but decided to give a low- carb diet a try anyway. After two weeks, and with regular walks, I could really feel a difference. Unfortunatly it takes real commitment and after taking on a new job, time has been a bit of an issue. I’ve been eating more starches, because we all know it is SO convenient. The pain is back. I am making a shopping list though as I’m reading your posts making sure to include Chardonnay ). A Question, I have been experiencing pain down my arms and down my sides, all my glands seem to be swollen, and are actually quite painful (including the ones behind my ears and the back of my head ) Any comments on that?

  • Hi ! I’m a 37 yr old female.After suffering from SI joint pain for almost 10 years,I was finally diagnosed to be positive for AS( 3 years back).The excruciating pain and loss of normalcy is no fun.
    Last year I decided to try the starch free diet. It was a struggle to adapt to it but I’m so glad that I kept at it. After being on the diet for almost 2 months I felt amazingly great! No pain! It is indeed wonderful to be able to get wake up in the morning without a stiff back or hobble around the house till it sort of thaws a bit.
    I highly recommend the starch free diet,please give it a shot if you too suffer from AS………it is so worth it. My best wishes to all. Thanks for reading 🙂

  • I have had AS for ten years now. I was diagnosed when I was 20. I am currently on Remicade infusions, which seem to be helping. I have been on the No Starch Diet once before and noticed considerable results. The most important thing about the diet is that it must be very strict. This means if your not sure don’t eat it (Use Iodione to test- don’t eat the iodine). I have researched a lot of different sources on the NSD, and they all have differences. It is important to find which foods work for you, as our bodies are all composed differently. One must be very careful around dietary supplements, as most of them contain cellulose or starch. Also most painkillers contain starch, so look for one that is starch free. I swear by this diet as it has made the difference for me. The remicade is only a necessary evil right now, but I’m making all the necessary steps to getting my AS under control. I will leave you with one final quote by the late Winston Churchill “Never, never, never give up”!

  • Having been diagnosed with Ankylosing Spondylitis a few months ago, I’ve been reading up on klebsiella on the net. I learned that garlic is one of the most effective natural antibiotics in lowering levels. I therefore picked up a couple of bottles of garlic capsules on Friday 1st April and today my pain levels are definately a lot lower today after only 3 days. I’d be interested to hear if anyone else has found a similar effect.

  • I m 47 diagnosed for AS 10 yrs back.by self study I have developed my life style( exercise,diet etc).I m not having any pains now.Also I am taking Homeopathy medicines from last 2 months from south India. I hope they work.

  • Hi all, thanks for all the inspirational life stories! I’ve had as symptoms in early childhood and have just been diagnosed in the last week. I am now 49 (I’ve repeatedly searched for answers and when I was 21 was told that I was hla b27 positive but no explanation was given but was diagnosed as having chronic fatigue). Just a few quick points as to what works for me. I figured out a long time ago that cereals were a problem, though i thought that it was hypoglycaemia or gluten intolerance. Drinking tea will give a sore rib cage and even make the muscles in my throat cramp when I yawn. A lot agricultural chemicals seem to bother me, (there is apparently a cholinesterase link) particularly those that are used in orchard husbandry and are residual on fruit. As I’ve only been diagnosed for a week and am keenly pursuing the starch free diet. I am incredibly optimistic as avoiding cereals always makes me much better. I have been feeling markedly better but ate some cannelloni beans that really affected me badly. Celery is great i eat three sticks a day if I’m feeling ordinary. I make a vinagarette out parsley out of vinegar olive oil fresh parsley and garlic salt and pepper (all good anti-inflamitory foods). I’ve been told, anecdotally that magnesium suplements can prevent calcification of joints. I contracted Ross river virus a few years ago and was diagnosed with post viral Gilam Barre. this is the distal demyelization of nerves. In the last fortnight I have again been experiencing the slight spacticity of the previous event but without any viral trigger. As for chardonnay I’ve made a hobby out of drinking some of Australia’s best chardonnays, maybe it has helped but if not I guess I MUST TRY HARDER. Good luck to all you wonderful people and let your medicine be your food and your food be your medicine.

  • hai this ashish iam 27 yeasr old i recently diagonised with AS diet control is est for controling inflamation , do regular yoga and abide diet rule my best wishes for all of u

  • I had the luck of being referred to Prof. Ebringer about 12 years ago. Eliminating starch from my diet truly revolutionised my life – I can’t begin to describe the difference it made.

    It’s not easy to follow though, and over the last few years I have lapsed, in minor ways at first, but recently I have been eating a completely ‘normal’ diet. My AS symptoms have returned, and life is very very difficult again.

    As of this morning, I’m back on the starch wagon!

  • I have had AS since being a teen (now 35), and have only just been diagnosed last summer, had been given pain killers like sweets for years !! I have been taking steroids and sulfasalazine since last Aug, its affecting my knees, jaw (and obviously back), and big right toe the worst. The inflammation still hasnt gone, I shall try both the diet and the chardonnay (happy days) !! Anything is worth a try ! Though my doctor said he didnt think there was much evidence to suggest diet works. I wont rule it out until I have tried it for myself, take care sufferers, dont be too down, dont let AS win, Im not going to but it is the most dreadful thing !!

  • I’ve suffered from A/S for many years now, & it has ruined my life, from my younger years when i was diagnosed in my late teens.
    It brought my rugby & army career to an abrupt end, as i served with the parachute regiment.. The last few years it has ruled my life, it has had an impact on my childrens life, & to be honest with the depression & been phisically sick with indigestion (heart burn) had me at the point of drinking a bottle of vodka & taking pills, waking up in hospital & been told i had to be revived twice..
    Reading these blogs as put a completely different insight into this horrable disease.
    My doctor just says keep taking the aclofenac & lansoprasol, (for my stomach), keep swimming & doing your stretching exercises… (not easy when your as stiff as a board & in pain..)
    But i now intend to try the diet & wine & hopefully i might feel some comfort for the 1st time in many years.. Best wishes to all..

  • Hi, For those looking for a complete list of starchy foods to avoid, there is one on kickas.org that is pretty exhaustive. Have tried all sorts of meds and though difficult to do the most important things are to keep moving and hydrated. It is a hard disease to deal with and fight but you have to be your own doctor and try everything to see what works for you to minimise your symptoms – every individual is different. Thanks everyone for sharing your experiences, just working my way through a bottle of Chardonnay to see how that goes! keep sharing the tips for a better life with as.

  • The low starch diet as described by Dr. Ebinger says that beans are a recommended food. I thought beans are a resistant starch which feeds the Klebsiella. Please clarify.

  • Can anyone tell me if they have heard of lung nodules caused from A/S. I suffer with upper respitory infections for years from the A/S.I find that so many Doctors are very ignorant about this disease. Thanks

  • Can anyone tell me if they have heard of lung nodules caused from A/S. I suffer with upper respitory infections for years from the A/S.I find that so many Doctors are very ignorant about this disease. Thanks

  • Can anyone tell me if they have heard of lung nodules caused from A/S. I suffer with upper respitory infections for years from the A/S.I find that so many Doctors are very ignorant about this disease. Thanks

  • I was diagnosed with undifferentiated spondyloarthropathy, 11 yrs ago. I take prednisone, plaquenil and Humira. I had scleritis in ’07 and was on MTX for 10 months and terribly ill from side effects. Humira has been a blessed replacement but is potentially very dangerous. Does anyone know how or if it is possible to stop taking these medications as a result of the low starch diet? My adrenals are suppressed and when the prednisone dose is lowered, I have adrenal fatigue, flares, arrhythmia. If anyone has gone off these medications, please post to the list. Thank you!

  • My Dad who was diagnosed with AS several months ago, but has been suffering for over a year, recently started a no carb diet. The differences have been amazing! He describes his pain level going from an 8 to a 2 on a 1-10 pain scale. He has only been on this no carb diet for a week. It’s been amazing for him!

  • I am 22& i was diagnosed with AS in feb 2009,although symptoms appeared in early ages of my life.I am taking homeopathic treatment in india,Initially it worked for me,but since last 2 months pains increased.I didn’t follow any specific diet.I think i am in the early stages of the disease.please give me some suggestions to reduce pain.From now onwards i am regular reader of the site.

  • I was in TERRIBLE shape after NSAIDs accelerated my AS due to intestinal lesions.

    Regret it was too many years before I met Professor Ebringer, but I always knew there was a food connection 1) because fasting eliminated my symptoms (I fasted for 20 days one time) and 2) I ate things that aggravated my AS and caused flares–FRIED foods and most of these are breaded or otherwise starchy.

    When I was first diagnosed with AS I was told it was a kind of arthritis and I protested that it could not be because it is just TOO PAINFUL. 30 years into the disease I learned it was as simple as eliminating dietary starch! And it sounds too simple but it works!

    DO NOT HAVE THE REGRETS I NOW HAVE; nobody cares more about Your health than YOU–and in this particular disease, regrettably, physicians are too often well-paid liars.

  • I am 38 single woman, I have all severe symptoms since I was 19. At first they thought it was LUPUS but later after 5 years of misdiagnosed they found out it was AS. Since 8 years ago, I had sever iritis, sacroiliitis, and joints, ribs, jaw inflamation. I was in Reumathology Unit at hospital for 3 months without movement on 2001. I almost try all medications except for TNFs; Most of medications I tried, that do nothing or very little to me. Finally, I am on Low Starch Diet and Yoga since 3 years ago which has been great! No medication at all just painkillers rarely. However, there still big flare ups once in a while which worries me. They come more severe each time very painful and stiff (1 or 2 per year when changing fall to winter or winter to spring). Currently, I got used to my diet but I not sure if it works for longer time. I frustrated to see my future being disable.
    I am afraid my insurance do not cover Humira or other similars TNFs … 🙁
    At the end of this way….I agree.. try diet it helps more than medication for some of us.

    Fight! Fight! Dont give it opportunity to let u down!

  • The costochondritis is worse than ever, and now my shoulders are hurting a lot, which they never bothered me before. I’ve been starch free (at least 98% free as I keep finding small amounts of starch in so many foods) for two weeks now. I am not feeling much relief yet, so I’m wondering how long does it usually take? I also started sulfasalazine 2 weeks ago.

  • I first had AS symptoms 20 years ago and was “officially” diagnosed 4.5 years ago. My initial pains were hips and ribs (incredibly bad at times and progressively worse over the years). After my diagnoses, I was placed on Enbrel, which made my symptoms disappear. I was able to do all the activities the AS had kept from me. However, a few months ago, I started having a lot of numbness and strange sensations in my legs and arms. It turned out that I was suffering from demyelization of the central nervous system (the first stage of MS), which is one of the “rare” side effects of biologics such as Enbrel and Humira (it’s rare until it hits you!). I was pulled off of Enbrel immediately. The nerve problems got worse, and I went through a massive steroid treatment for that. Some of the worse of the numbness and headaches went away (but seem to be returning now). The AS came back with a vengeance. –to be continued

  • I first had AS symptoms 20 years ago and was “officially” diagnosed 4.5 years ago. My initial pains were hips and ribs (incredibly bad at times and progressively worse over the years). After my diagnoses, I was placed on Enbrel, which made my symptoms disappear. I was able to do all the activities the AS had kept from me. However, a few months ago, I started having a lot of numbness and strange sensations in my legs and arms. It turned out that I was suffering from demyelization of the central nervous system (the first stage of MS), which is one of the “rare” side effects of biologics such as Enbrel and Humira (it’s rare until it hits you!). I was pulled off of Enbrel immediately. The nerve problems got worse, and I went through a massive steroid treatment for that. Some of the worse of the numbness and headaches went away (but seem to be returning now). The AS came back with a vengeance. — to be continued

  • I found this site and these posts so helpful! I tried the low carb diet (and the Chardonnay, for good measure) and found that within a week, I was able to twist my head farther left and right than I had for years. Also able to sit up from lying on my back without propping myself up on my elbows. Might sound stupid, but when you haven’t done those things in years, it is BIG! I have kicked off a new level of research in choosing diet to support my health. Thank you, I needed to know that someone has some productive treatment to offer!

  • Thank you thank you for this site and these posts. I changed my diet and found it immediately made a difference in the level of stiffness I have in my neck and the amount of pain I feel. Within a week, I noticed that I was able to twist my head (not my shoulders) to check both ways as I backed out of my driveway, and I was able to sit up from a lying position using no extra support from arms and elbows. These are things I haven’t been able to do comfortably in years. Of course, you could give credit the bottle of Chardonnay I polished off on reading these posts. Also, lots of fruits, vegetables, beans, meat, in place of pasta, oatmeal, and potatoes. Now I am on the road to doing more research, learning more, and making conscious choices about how I am eating to support my health. This at age 36 after having lived with AS for 11 years. Thank you!

  • Thank you thank you for this page and all of these posts! After reading it, I of course tried the Chardonnay cure right away, I have to say I think it made a difference. What I can say for sure is that going for a week without wheat, oats, potatoes and coffee, I felt a HUGE difference. I ate beans, salads, meats, fruit, dairy. First, I was able to turn my head left and right to check the road as I was backing out of my driveway without turning my shoulders; second, I was able to sit up from a lying position without relying on my arms and elbows to prop me up. Both of these were things I haven’t done comfortably in years! I am now searching resources to go about a diet/lifestyle change in earnest. I am 35, have been living with AS for 10 years. This site was truly eye-opening; it has inspired me to learn more, do more, take an active role in understanding AS and making adjustments to get it under control. Thank you.

  • i’m 30 and i’m suffering by AS since 2005. i want to know that which kind of food increase it’s pain. i’m from nepal and want to know. please send me mail if u any know the truth.
    thank you.

  • I’m confused. Both ginger and tumeric have plenty of starch in them. Is this type of starch the type that is easily digested by the body?

  • I’m 44, had AS symptoms since 21, diagnosed at 31, been on Enbrel since 2003. My story sounds like many others on here. Pain and flare-ups have been coming back lately and was looking for something new to try. This just maybe the ticket and would be too hard to implement since I eat a lot of proteins already. Anybody now where I can find a more in-depth list of good food, okay food, and bad food?

  • I’m 44, had AS symptoms since 21, diagnosed at 31, been on Enbrel since 2003. My story sounds like many others on here. Pain and flare-ups have been coming back lately and was looking for something new to try. This just maybe the ticket and would be too hard to implement since I eat a lot of proteins already. Anybody now where I can find a more in-depth list of good food, okay food, and bad food?

  • is this AS: pain in upper back and chest. stiffness in shoulders and chest/ ribs. mild twitching in arms and legs in certain positions. left eye sometimes gets swollen in morning for no reason. eye gets red and watery sometimes. fatigued flu like feeling. hla b27 positive. no pain in hip or sacro iliac area. x ray normal for this area. shows spinal straightening due to muscle spasm. sometimes red pimple like itchiness on scalp. cervical degeneration and nerve compression. do i have cervical spondylitis or ankylosing spondylitis? anyone?

  • Can somebody post examples of foods to stay away from some which you eat.

    I feel that starch is almost all I eat. What will I do for breakfast without cereal or bagels.

    I am 21 and would love to ease the pain from my AS.

    I am going to start a food log, tracking all the food I eat and the level of pain I have on each day. If we get a large group of people doing this we may have some significant data to post to medical journals.

  • Hi friends,i m also suffering from AS from last 9years,but now a days its seems that its in my hand to keep myself away from the deadly pain,with a useful diet,yoga nd exercise,a daily walk,it also help to get a good posture,then few more things to follow,less use of water at night wether for drinking or for washing hand,face,body,also try to avoid fan,A.C as much as possible while sleeping,try to keep your sleeping room warm,avoid pillow,and try never get depressed as it increase the pain,each and everyone of us can live our life normaly if we take a great care of our body,keep ur body first then the whole world,nd it will give back u what u want..a pain free world,if anyone have anything to share with me on AS then u r welcome to post back on her. Take care friends:)

  • HI, I’m 39 and have AS. The best thing I have found is Bikram Yoga, or hot yoga. It is a challenge to do, but the results are amazing. Just like a welder heats up metal to bend it, the heated yoga does that to my spine, and my flexibility increases. Not after one class, but at least twice a week maintains my flexibility. And, low carb, low sugar, overall anti-inflammatory diet. No coffee.

  • Hi, every time I brake strict diet I got much more pain even with cox-2 pills (starch, cheese or sweets). I can not tell that fat-protein diet removes all problems but it helps for sure. What is working 100% for me – water fasting it was confirmed by blood work apart from me feeling free from pain. Days from 5 t0 9 on water alone are blessing for me! No pain, improved flexibility, full of energy. The only problem – it is impossible do not eat all the time! Fruits give return of inflammation (checked by blood work and feelings), now I try to stick as much as possible to low-carb high fat and protein diet (raw as much as possible). The last problem for me – fruits and dry fruits. Diet works but it is necessary to run it for at least 6 months to be sure of result. I will try…

  • I am 48 yrs old and have had bizarre symptoms since the age of 21. Started with paresthesias. I have had “bone spurs” on my spine since I was 29, attributed to competitive horse back riding. I have FM, IBS. MVP and always feel like I am getting the flu. My symptoms are not what I read on this post with the exception of constant ” band- like” rib pain x 4 yrs and obvious intolerance to gluten. Severe occipital pressure HA recently brought me to a neurologist who states I have advanced AS. How has this been missed? I am an RN, female who was dismissed for years as suffering effects of stress. Going next week for the genetic marker blood test. Interventional radiologist wants to inject steroid into cervical spine. Any help would be appreciated. 3 MRI’s 2CT scans and several xrays over the years have shown the boney pathology and has been missed by ? 5 different practioners. Not trusting doctors. On diclfenac x one week no difference. Can anyone help.

  • I have had AS for 7 years and am currently with quite a wicked flare. I am a medical doctor and work extensive hours. It was very hard to get through residency with this disease. Much to the previous posters insinuation that my profession was lifestyle driven- that is laughable considering I work 60-80 hours per week and take a lot of call. But aside from that, I think Matthew is very correct that in our specialty, most treatments are not considered effective if they are not randomized control trials but I think diet and alternative therapies needs to be emphasized more than they are. I’ve been to two rheumatologists who only want to start TNF-I’s which I am terrified to take. I’ve been scouring the internet and journals to see if diet makes a difference. I’m so encouraged that people have felt that a low starch diet is beneficial. I’m going to start this and hope that it eliminates the need for TNF-I. Good luck to everyone else as well.

  • My grandfather had AS, ibs, and fibromyaliga his whole life. I can’t believe he lived 60 years with severe problems from it and yet had his wealthy business. Being a typical italian he loved his carbs, meats and wine. I have colitis (linked to B27 HLA) and stayed gluten free, chemical free, high fruits and vegetable diet helps all my symptoms. Trying to be 70% raw vegan. 🙂

  • This runs in my family, and has been undiagnosed until recently, which is ironic, considering all the doctors I’m related to, and the other doctors that I’ve sought for answers to these troublesome symptoms. The no starch diet has made an impressive difference in the way I feel — I feel fully functional again. Some other things that have been helpful for me have been extra vitamin C, extra vitamin D, fenugreek tea, tumeric, and lots of water. Before I was diagnosed, the only thing that ever helped with the IBS was the vitamin C. Fenugreek tea has been compared to cod liver oil’s health benefits, but is so much easier to get down. If you are nursing, it’s beneficial for that as well. Matthew, I completely agree with you about the incentives that fuel some physician’s practices — they seem often diametrically opposed to actually achieving health. Doctors are fabulous for broken bones, but so many of them are intellectually lazy, and clearly went into medicine for the lifestyle, not the desire to heal. Switch to a naturopath and see if that helps. Swimming is an excellent way to get your exercise — all of your joints are supported by the water. Good luck to everyone wanting to resolve their AS symptoms. If I can give up starch and sugar, you will be able to as well.

  • 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.

  • 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!!!

  • 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.

  • 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.

  • 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

  • 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.

  • Hi I have been suffering from AS for 20 years, I have tried many diets over the years. The best advise i could give to anyone with this condition is to increase your untake 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 very low and I feel dehydrated. Water really helps. Also eliminate sugar, dairy, and Starch. I also find that alcohol, nuts and cakes especially sponge cakes 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 perscibed 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 regulary, Im swimming and doing gental cardio such as walking I aslo do yoga and do lots of streching and strength training using the gym ball. Do not let this disease get you down. Listen to your body make a note of when your sympoms feel better or worse look at what your eating and try to adopt healthier options, but most importantly drink lots of clean water.

  • Hi I have been suffering from AS for 20 years, I have tried many diets over the years. The best advise i could give to anyone with this condition is to increase your untake 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 very low and I feel dehydrated. Water really helps. Also eliminate sugar, dairy, and Starch. I also find that alcohol, nuts and cakes especially sponge cakes 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 perscibed 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 regulary, Im swimming and doing gental cardio such as walking I aslo do yoga and do lots of streching and strength training using the gym ball. Do not let this disease get you down. Listen to your body make a note of when your sympoms feel better or worse look at what your eating and try to adopt healthier options, but most importantly drink lots of clean water.

  • 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.

  • 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

  • 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.

  • 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.

  • 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.

  • hi everyone.I ve been suffering from A S 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?

  • hi everyone.I ve been suffering from A S 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?

  • 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?

  • 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.

  • 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.

  • ROBERT & CHARDONNAY… i am desprate to try this.. do you have additional info such as brand, oaked or unoaked, drink it til you get the squirts? etc. it could mean the difference between it working and not working. update us please! im in terrible pain and stiffness for 5 years. unemployed now 2 years. its a challenge to even care for myself daily. im 32 and want a better life. good luck everyone. cheers

  • 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.

  • 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 !

  • 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.

  • 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.

  • 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?

  • 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?

  • 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

  • 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.

  • I just read Jess’s post from 14-10-09 and I feel like I read my biography. I have all the same symptoms. rib pain developed when i was pregnant and hasn’t gone away. I highly recommend yoga, pilates, biking and I hear swimming is good too. In addition to vitamins, I take 2TB of Raw apple cidar vinegar/day. It is very helpful. if anyone is on facebook, join the “ankylosing spondylitis” page. great people and great info.

  • 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!

  • 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.

  • 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 😉

  • 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.

  • I’m eighteen and have had pain for as long as I can recall, but the most serious symptoms started at about thirteen. I have had no relief in three years whatsoever. I honestly can’t see the point in going to college since I’m going downhill at breakneck speed and probably won’t be able to finish it, but I’ll try. Everything sucks for me right now. 🙁

    I think I’ll try to convince my mom (who also has AS) to try this diet with me. I’m an American, so no Chardonnay till I’m 21. I might also look into turmeric and ginger.

    Why are so many good AS sites British? I wonder if it is more common across the pond.

  • been looking for somewhere to get advice from real people for ages!! i’m 35 and have been diagnosed AS last year after many years of back pain.
    so far no drugs, but take glucosamine + condroitin, essential fatty acids and some homeopathic remedies.
    stay very active (am a massage therapist) and find pilates and general exercise really helpful. strong core muscles can only be a good thing.
    have read some interesting stuff on this Kleb… bacteria in the gut. any other thoughts on this as a cause?
    will be trying the low starch diet 🙁 but not really looking forward to it!!

  • Hi everyone.Looks like we are all on the same wretched boat so lets keep bailing! I was diagnosed with AS at 30 after frequent attacks since I was 11 and no proper diagnosis – I’m now 45. Unfortunately I didn’t take it seriously enough and never got the right advice. To Nick – I have just started the no-starch diet as well as a complete no-sugar (other than that in fruits) and no deadly nightshade (with the exception of nicotine which will also go soon) and no tea and coffee (hot beverage is ginger tea as ginger is said to be a a good anti-inflammatory). The diet has been on for 6 days now but not feeling any better yet. Still taking nucoxia as well as paracetamol (nucoxia i an etoricoxib – an nsaid which is easier on the stomach lining though to be taken with caution and under advise if you have any cardiac probs).the paracetamol is a step down from tramal which is a far more powerful painkiller. I find that the more I do the more I am able to do though right now that is very little. This current flare up led to a powerful muscular spasm (like a horrific series of cramps which last for hours) on the 13th of december. after weeks of struggling and a few days in hospital i seemed to be getting better when another spaasm hit me on the 14th jan! I think the second one was largely gastric induced thanks to the meds i had been taking.Would be interested to know if anyone is having any adverse reactions with the diet – like I said I started about six days ago and sometimes my stomach gets bloated and i feel the urge to go to the toilet but can’t. Do the klebs fight back when they realise they are being starved? I am desperate to get out of this situation and with less drugs as I have already been away from work for 7 weeks and I don’t think i will have a job left to go back to if I don’t get back to it soon. Depression is common especially when you have been trying to do all the right things but get no resullts. For those of you who haven’t been there register and get into kickas.org – it’s a great suport site for people with AS, RA and the like. Take care everyone and keep up the good fight because we ARE going to win! To respond to anything I had to say and for any notes on how the diet is going with you please write to me at jayant_jayakrish@hotmail.com

  • 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…

  • 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.

  • 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.

  • 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.

  • 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!

  • 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 😀

    Keep Smiling Guys!

  • 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!

  • Hi. I am have as too. Iam now 28. I got many many problem with my movement since I was a child. 7 years ago I cannot get up from the bed. That time the doctor said I have bacterial in my blood or something like that. I injected with some medicine to kill the bacteria. Just one year ago I was diagnosed with this deasease. Oh god me and my family was soo despred. One month ago I was diagnosed with problem on my heart aorta klep problem. I have a really high blood pressure. My eye sometimes has problem too. I am so stress. I love to try the diet and chardonnay. Thanks for sharing. Your really comment help me get through al this painfull long time sickness. I hope there will be someday a cure for this deasese. I heard that my boy can get what I have. It’s very stress me. Thanks for the tips and sharing

  • I’ve had iritis in one eye for three years. Last week the other eye was affected. I now read this website and realise i probably have AS and the iritis is one of the symptoms. I have lower back pain, my joints creak and I have difficulty walking upright without hobbling when i first get up in the morning or after i have sat down for a while. I also suffer from Fatigue which brings me to why i am posting this. Has anyone got any cures/remedies that have helped combat the tiredness? Thanks

  • 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.

  • 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!

  • 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.

  • 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.

  • 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

  • Olá como estão? Tenho espondilite anquililosante a uns 15 anos na verdade; passo seis meses bem, no verão agreste e umidade relativa do ar baixissima de Caruaru, mas no inverno sofro muito com o frio e alta umidade,atividade fisica sem dúvida é ESSENCIAL, nos dá um pouco ou bem mais qualidade de vida e disposiçao, além de diminuir as dores.

  • 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.

  • 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?

  • 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?

  • 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.

  • 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.

  • 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?

  • 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.

  • 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?

  • 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.

  • 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.

  • 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).

  • 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?

  • 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?

  • 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?

  • 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

  • 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!!!

  • 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?

  • 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.

  • 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!

  • 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.

  • 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 suprise for me is that after 10 days on the diet knee pain that I have had since I was 16 has suddenly dramitically lessend. 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 discussion I am nick.gent@lineone.net. I will post anything of significance to this forum.

  • 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.

  • 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?

  • 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?!

  • 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?

  • 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.

  • 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.

  • 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!!!!

  • 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 !

  • 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!!

  • 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

  • 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.

  • 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.

  • 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

  • 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. http://www.kickas.org is a great support group online.

  • 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. http://www.kickas.org is a great support group online.

  • 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.

  • 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!

  • 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.

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