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Celiac And Seizures


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#1 sugarsue

 
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Posted 16 July 2010 - 05:09 PM

My 7 yr old dd has seizures that we believe are caused by gluten. She's been gluten free for over a year and has not had a seizure since.

I used to know within 10 minutes whether she had gluten (very bad BM's) but now things have changed and I can't tell any more. So I got a little lax on checking every ingredient. So she had a seizure this week. I have tracked back and I know where she got some good doses of gluten.

So of course I am getting the diet back under tight wraps. But this has me thinking. We don't have a celiac diagnosis but we do have a gluten intolerant diagnosis since the tests have been inconclusive. Does anyone know if seizures caused by gluten implies celiac? Or can non-celiac gluten intolerance cause seizures too. I think it is just splitting hairs since if gluten is causing her seizures, she can't eat any gluten.

Thanks.

Susan
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Susan
LYME diagnosed 11/2010, allergic to wheat, Hashimoto's Thyroiditis, allergic to all grasses, most trees, dust
Mom to 9 year old dd, lyme, diagnosed 11/2011, highly gluten intolerant, epilepsy w/ generalized seizures, mitocondrial markers, malabsorption, recurring candida - Gluten-free Casein-free since 9/16/08. Diagnosed with P.A.N.D.A.S. 6/20/09, seizure free since going gluten-free!
and 10 yr old dd, Lyme diagnosed 11/2011, severe dust allergy, allergic to most trees/grasses/weeds. Positive gluten intolerance testing. Gluten Free since 12/09/08. Diagnosed with P.A.N.D.A.S. 6/20/09

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#2 mushroom

 
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Posted 16 July 2010 - 08:55 PM

My 7 yr old dd has seizures that we believe are caused by gluten. She's been gluten free for over a year and has not had a seizure since.

I used to know within 10 minutes whether she had gluten (very bad BM's) but now things have changed and I can't tell any more. So I got a little lax on checking every ingredient. So she had a seizure this week. I have tracked back and I know where she got some good doses of gluten.

So of course I am getting the diet back under tight wraps. But this has me thinking. We don't have a celiac diagnosis but we do have a gluten intolerant diagnosis since the tests have been inconclusive. Does anyone know if seizures caused by gluten implies celiac? Or can non-celiac gluten intolerance cause seizures too. I think it is just splitting hairs since if gluten is causing her seizures, she can't eat any gluten.

Thanks.

Susan

The only experience I have with seizures is with my brother. He developed them late in life, and we come from a suspected total celiac family, although none of us has been tested. My sister and I are gluten free and my sister's daughter is diagnosed celiac. My brother was born with eczema all over his body, always had multiple issues including failure to thrive, digestive problems, and then the seizures wich were labelled petit mal but I don't think anyone ever did a thorough workup on him before he died (of seizure-related complications). I wish someone had thought to take him off gluten, because we were a mjaor gluten-eating family. But not much was known about celiac then. I don't know if I am celiac or gluten intolerant - I just don't eat gluten, period. As you say, it really doesn't make much difference, but there is a definite hereditary pattern in our family on both my mother's and father's side.
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#3 Skylark

 
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Posted 17 July 2010 - 05:49 PM

That's wonderful that you figured out the cause of your daughter's seizures!

As you realize, the phrases we use to describe gluten intolerance are not as well-defined as one would like. There can be autoimmune reactions in the nervous system that are initiated by gluten and stop when gluten is removed from the diet, just like intestinal celiac sprue. They seem to involve a different transglutaminase enzyme and possibly are more associated with HLA-DQ1 gene subtypes. Some of the people with nervous system autoimmunity do not have the intestinal antibodies doctors look for when they diagnose celiac disease, and they may not have any GI symptoms from eating wheat. Strictly your daughter would not be "celiac" but in ten or twenty years the semantics may totally change.
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#4 sugarsue

 
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Posted 19 July 2010 - 05:26 PM

Thank you both for your responses. I have seen a few other things that could possibly have been a seizure since that day but nothing like the first one I saw last week. Hopefully tightening her diet back up will take care of it. I have noticed her tummy hurting 1-2 days after a glutening. I think I just need to learn her new signs and of course start to be more careful again.

Susan
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Susan
LYME diagnosed 11/2010, allergic to wheat, Hashimoto's Thyroiditis, allergic to all grasses, most trees, dust
Mom to 9 year old dd, lyme, diagnosed 11/2011, highly gluten intolerant, epilepsy w/ generalized seizures, mitocondrial markers, malabsorption, recurring candida - Gluten-free Casein-free since 9/16/08. Diagnosed with P.A.N.D.A.S. 6/20/09, seizure free since going gluten-free!
and 10 yr old dd, Lyme diagnosed 11/2011, severe dust allergy, allergic to most trees/grasses/weeds. Positive gluten intolerance testing. Gluten Free since 12/09/08. Diagnosed with P.A.N.D.A.S. 6/20/09




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