Gluten ataxia

[kbs1944]

35 years as medical professional...

my wife has GA. Not recognized by but few doctors. She put herself on huge vitamin supplementation regimen, especially THIAMINE... I had my doubts...thought useless panic response...her MRIs looked devastating...had upper and lower ataxia, dysarthria, brain fog... She confounds neurologists with her near normal exams now.

treat yourself as if you have CD and Malabsorption Disorder... Might cost a few $$$ but she has impressed me. Lots of good GF recipies out there.

[Galixie]

Thank you for posting. I seem to have gluten ataxia but tested negative for celiac which means I fall into the still-not-officially-recognized non-celiac gluten ataxia category. Because dizzy spells are basically my only symptom, and because I also have some anemia issues that also make me prone to dizzy spells, I had been recently wondering if it's really worth the trouble to stay gluten free if I'm still going to be dizzy anyway. Your post has encouraged me to keep with it.

[Jacks]

The thiamine connection might be more related to something like Wernicke's encephalopathy than coeliac disease.

In my youth I read of the benefits of high niacin and an hour later wondered whether that was the real reason for the spontaneous human combustion I read about in Arthur C Clarke!

Moral - Perhaps everyone doesn't need large single B vitamins.

[kbs1944 in reply to Jacks]

Thanks Jacks.

Wernicke's is of course the most famous of the conditions that manifest from thiamine deficiency. My wife's first MRI images showed what was logically called non-alcoholic Wernickes. The high requirement for energy that the brain demands and the fragility of the brain tissue makes the brain the most sensitive organ that will signal the lack of thiamine. The relationship between thiamine pyrophosphate and glucose is intimate. The glucose simply will not be used by the brain without thiamine pyrophosphate and the brain does not tolerate lactic acidosis. This conversation my be a bit much for this site.

Thank you for your reply.

[Ffion2 in reply to kbs1944]

I'd be really interested to hear more about your wife's regime and improvement. It's so hard to get any information at all out of my GP - so anything at all would help me work out the best plan of attack (or should that be defence?)