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Old 07-17-2007, 04:10 PM
jccgf jccgf is offline
Senior Member (jccglutenfree)
 
Join Date: Aug 2006
Location: Wisconsin
Posts: 1,581
15 yr Member
jccgf jccgf is offline
Senior Member (jccglutenfree)
 
Join Date: Aug 2006
Location: Wisconsin
Posts: 1,581
15 yr Member
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I answered your post on community feedback, but will copy it over here:
Hi Lorie,

Have you ever heard of or considered having your daughter tested for gluten (found in wheat, barley, rye) sensitivity/ celiac disease? Celiac disease is an autoimmune disease that is associated with gastrointestinal, neurological, skin, and other disease. It is possible that neurological symptoms are the only symptom of celiac disease (without the more classic GI symptoms) and it is possible to have gluten sensitivity causing seizures and other symptoms without testing positive for celiac disease. You should be able to search the Epilepsy and Children's Health forums with a keyword gluten and pull up some past discussions.

It is possible that dietary changes could improve her seizure control if she is gluten sensitive.

Here is a link with lots of information about seizures that are related to celiac disease/ gluten sensitivity. There is a ton of mainstream medicine literature about this, but our neurologists are just not very aware because celiac disease is considered primarily a GI disease. It has only recently been realized how often it occurs with neurological symptoms rather than GI symptoms.
http://jccglutenfree.googlepages.com/seizuresepilepsy

My own daughter has a history of seizures that we ultimately found related to a B6 deficiency and gluten sensitivity. You can read about our story here.

You will read that seizures related to celiac disease can be caused directly by immunological attack, and nutritional factors (deficiencies of vitamin B6, B12, folic acid, and others can cause seizures), and that the calcium deposits you mention may be a clue.

Sometimes people with celiac disease have a poor response to medication because the medication is not being absorbed properly. A red flag for malabsorption would be if it requires more medication than typical to reach therapuetic levels.

The response to the diet is variable, but there are cases of complete resolution of seizures!! I've personally known several who fall into this category. Some people find they are also sensitive to other foods, and may need to removed cow's milk or soy to gain seizure control. This is something you need to explore on your own because it just isn't on the radar screen of most neurologists yet, despite the connection between celiac disease and seizures being well documented in medical literature for decades.

This is a good overview article about celiac disease, which has a small section on seizures.
Detecting Celiac Disease in Your Patients by Harold T. Pruessner, MD

Since you are considering other options, I hope you will consider testing for gluten sensitivity/celiac disease, and perhaps even if the tests come back negative... a dietary trial of six months or more. The blood tests are good, but not perfect, and there are many who test negative but respond to the diet. You can find much more about testing in The Gluten File on the Diagnostic Testing pages.

Cara
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