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Ataxia

AutumnSky

By AutumnSky
in Related Issues & Disorders

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AutumnSky Rookie
AutumnSky
Posted

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
trents
Posted

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

knitty kitty Grand Master
knitty kitty
Posted

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
Scott Adams
Posted

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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    • knitty kitty
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      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/
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