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Gluten Free & Multiple Sclerosis?


GFDietitian

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GFDietitian Newbie

So, wondering if anyone else out there is gluten free and has a diagnosis of Multiple Sclerosis??


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ravenwoodglass Mentor

So, wondering if anyone else out there is gluten free and has a diagnosis of Multiple Sclerosis??

I was thought to have it for a long time but it turned out to be the celiac brain impact. All my MS symptoms resolved within a few months. The only thing that remains is balance issues, which are actually gluten ataxia, but those are still continueing to improve.

VioletBlue Contributor

I am like Ravenwood. Most of the neurological symptoms have gone away. My balance and vertigo issues are better after almost 4 years gluten-free but balance is still a problem in some circumstances.

I was thought to have it for a long time but it turned out to be the celiac brain impact. All my MS symptoms resolved within a few months. The only thing that remains is balance issues, which are actually gluten ataxia, but those are still continueing to improve.

orchid1 Newbie

So, wondering if anyone else out there is gluten free and has a diagnosis of Multiple Sclerosis??

i am a celiac but my sister and one of her friends had been diagnosed with MS over 10 years ago. several monthes ago i came accross an article in August edition of Scientic America which mentioned how rheumatoid arthritis. diabeties 1, celiac disease and MS (all being autoimmune diseases) have "leaky gut" syndrome in common. after several monthes of badgering they were convinced to try a gluten free, legume free, dairy free diet (basically that is the diet i am on because of legume, corn, rice, potatoe, sugar, red meat, poly fats, most oils and nuts intolernces) my sister's symptons stabalized and is condsidered in remission: her friend who, because of ataxia had gone from using a cane to using a walker and getting ready to use a wheelchair now walks without a cane or walker. she has also enjoyed recovery in several other areas. her pace of recovery has been nothing less than a miracle in her own words. she has also signed up as a voluteer for the CCSVI study being conducted by the local university

nutralady2001 Newbie

I have just met some-one whose sister has MS. The sister is on a gluten free diet and is adament that it helps .

jackay Enthusiast

I have a friend who has MS. How do I suggest a gluten free diet without being preachy? I really would like her to try it but I don't want her to think I am pushing gluten free down her throat.

ciavyn Contributor

I have a friend who has MS. How do I suggest a gluten free diet without being preachy? I really would like her to try it but I don't want her to think I am pushing gluten free down her throat.

Find a good article to show her, make the suggestion, and don't talk about yourself and your gluten issues. I'm sure she'll appreciate anything that might help.


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Takala Enthusiast

I have a friend who has MS. How do I suggest a gluten free diet without being preachy? I really would like her to try it but I don't want her to think I am pushing gluten free down her throat.

_______________

Send her the url of this website. Some forms of gluten intolerance have neurological symptoms that match MS. Some of us, myself included, no longer need a cane to walk and have regained feeling in our hands and feet after going on a gluten free diet. I didn't have the stuff in the spinal fluid but I did have brain lesions called bright spots. Never a formal diagnosis after being told I probably had it, by many doctors. Did intensive internet research, found some sites saying diet helped certain kinds of arthritis and sometimes MS, tried the diet, figuring I had nothing to lose and it wouldn't hurt.

It won't be a miracle for everybody, but consider that it is now thought that 1 out of 100 people are celiac or gluten intolerant, and the majority are undiagnosed- likely because they didn't waste away but are showing other, baffling symptoms. I think a large number of people with "fibro" and gut issues and brain fog could be likely candidates, that haven't deteriorated to ataxia and numbness yet.

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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