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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.
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Gluten Ataxia

Entry posted by jldurrani · - 1,817 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 CD. 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 CD and she posts some very informative articles on CD.
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Thanks so much for your response. I greatly appreciate it. I shall try to cut and paste my post to the regular section of the forum. I am very new in the blog world; I shall try to learn to navigate my way around!

I just hope that the neurological symptoms with celiac disease are reversible. Being a physiciain, it is very humbling to see how little physicians in general know about the neurological aspects of celiac disease. When I mentioned it to the pediatric neurologist, she completely blew it off. When my son was being evaluated at Children's Hospital of Philadelphia, the neurologist did not even think of testing for celiac disease, even after all the other tests were normal.

 

Thanks again for your help.

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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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