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Gluten Ataxia

Posted by jldurrani, 16 April 2014 · 1,000 views

Hi Guys, I am new on this blog; this is my first post. I am an anesthesiologist. My son has ataxia ( impaired wobbly gait) with poor core strength, inability to stand still without support and abnormal arms movement; he is seven years old now and these movements started since he was four years old. He has seen pediatric neurologists multiple times; he had an MRI of the brain done and it was normal. They think he might have ataxia telangiectasia. Recently he had lab work done for gluten sensitivity and it surprisingly it came back strongly positive (Tissue transglutaminase antibody IgA 137 (Normal 0-9) Endomysial andtibody titer 1:160 (Normal less than 1:10). This came as a shock since he never had any GI symptoms. I looked up online and there is an association of gluten sensitivity with neurological symptoms. He has been gluten free for the last three weeks but his symptoms have not improved. What I read online said that it typically takes 3-6 months before any improvement is noticed.
I just wanted to ask if anybody else on this forum had experienced any neurological symptoms with celiac disease and if their symptoms improved with gluten free lifestyle. Thanks.

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The blog section is not as active as posting on the regular sections of the forum. If you do not get a good response, try reposting. Sorry to hear about your son. I only had anemia and did not have G I issues either. Ataxia is definitely a symptom of celiac disease. Put ataxia into the search bar and you will find postings from those on this forum who have experienced ataxia. It can take longer than six months based on damage and age. The good news is that your son is young and should recover fast. Watch out for other autoimmune disorders in the future. Research diabetes and thyroiditis there is a link. We have a Ped, Jebby, who also has celiac disease and she posts some very informative articles on celiac disease.
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Greetings.  I had pretty significant "gluten ataxia" (from what I understand the antibodies that attack the small intestine also attack specific type of cells in the cerebellum - I'm not a medical person, I'm sure you can google this and get some info).   I was not diagnosed with Celiac Disease until in my 50s.  Among other problems, my ataxia indeed affected my balance and gait -- my Dr. suspected MS (terrifying!) and I was sent for an MRI. Thankfully that was negative, but I relay that to illustrate how significant the symptoms were.  Shortly thereafter I was diagnosed as Celiac, and I would say the 3-6 month mark is pretty much where my improvement happened. I remember reading at the time that "neuro" problems take longer to resolve, once you are on a gluten free diet. I am thrilled to say that ALL of my neuro problems were completely gone in 6 months.  I hope this is the case with your son. I have had no relapse, except if I get significantly "glutened" I'll be wobbly and/or dizzy next day or two thereafter.  Best wishes for your son's recovery.

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