Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

jldurrani

Advanced Members
  • Content count

    5
  • Joined

  • Last visited

Community Reputation

0 Neutral

About jldurrani

  • Rank
    New Community Member
  1. Thanks a lot BlessedMommy, GFinDC and greenbeanie for your comments and kind words. It is very helpful to know that we are not the only ones who have ever faced this situation. After the pediatric neurologist completely blew off the possibility of gluten being responsible for these symptoms, we were very frustrated; she was adamant that there is some brain defect that is causing it and that we may find the cause or we may not find the cause! I am hoping that the Ataxia Telangiectasia work up turns up negative. My son is still struggling with the idea why he cannot have gluten and why all other kids can have gluten. We have started giving him gluten free lunch every day to take with him to school. At school cafeteria he takes only fruits and vegetables. His teacher knows about his gluten allergy and keeps an eye on him. The hardest part is eating outside. Here in Louisville, KY there are some restaurants that have gluten-free menu but the options are limited. I have a question; if something does not say gluten-free on the label but in the contents it does not have wheat (or rye or barley) should it still be avoided because of the risk of cross contamination? Like most ice creams do not say gluten-free on the label but searching online, some blogs mentioned that they are safe if they do not have any added materials like cookies etc. Same way, eating sushi in a restaurant (without Tempura batter) with gluten-free soy sauce OK------------since it is being prepared in close proximity to the fried tempura products? Thanks a lot for your time and your comments. It is very helpful!
  2. 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.
  3. 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.
  4. Gluten Ataxia

    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.