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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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    • Rejoicephd
      Thank you @trents for letting me know you experience something similar thanks @knitty kitty for your response and resources.  I will be following up with my doctor about these results and I’ll read the articles you sent. Thanks - I really appreciate you all.
    • knitty kitty
      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron.  I wondered how it was possible that I had celiac disease without being deficient in everything!  I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc.  It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
    • knitty kitty
      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
    • trents
      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
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