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Ataxia


AutumnSky

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AutumnSky Rookie

I was diagnosed with ataxia of unknown causes in 2019 by my neurologist. Honestly that entire year is like a dream. 8 remember very little of it because I was so ill. 

I was tested for MS, Parkinson, and myasthenia Gravis. They really could not find a cause for the ataxia. 

Now I am wondering if it could have been the gluten. I was diagnosed not that long ago this year. 


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trents Grand Master

It absolutely could be the gluten. Ataxia is common to the celiac community and the NCGS community.

knitty kitty Grand Master

Definitely related to gluten.  Some of us lucky ones make tissue transglutaminase antibodies (Ttg 6) that affect the brain in addition to the usual antibodies (Ttg 2) when exposed to gluten.  There are tests to measure the Ttg 6 antibodies. 

My gluten ataxia has improved dramatically with High Dose Thiamine treatment with Allithiamine, a form of thiamine that crosses the blood brain barrier easily.  

The brain uses as much Thiamine as a marathon runner's muscles do in a race.  Thiamine insufficiency can affect brain function.  Symptoms can wax and wane as Thiamine from our diet may fluctuate.  

Since Celiac Disease causes malabsorption of vitamins, supplementing with High dose Thiamine and B Complex vitamins is beneficial in recovery.

  • 3 weeks later...
Scott Adams Grand Master

If you're 100% gluten-free, and you take supplements, the good news is that the ataxia can improve greatly over time, but it can take years.

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      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
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      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
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