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celiac disease Tests And Epilepsy Meds


maddysmom

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maddysmom Newbie

I have just joined this board and can


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happygirl Collaborator

Hi MM,

Welcome to the board!

Personally, I don't know of anything that would affect the Celiac blood testing other than going on a gluten free diet.

There was an episode of Mystery Diagnosis (or something like that) on Discovery a few years ago that involved a little boy who had seizures. Turned out later that it was Celiac.

Certainly can't say that it applies to your daughter, as it seems to be a side effect that isn't often discussed, but still, may be something to consider.

See this link, from a Celiac support group, page 15. Open Original Shared Link

Also: Open Original Shared Link "Seizures: Described to be frequently associated with Celiac Disease, due to intercranial calcification, particularly in the posterior of the brain, causing seizures. We had a four year old girl with recurrent seizures who did not respond to anti-epileptic drugs and was brought to our office because of weight loss. She had had seizures for 2 years. She tested positive for the anti-gliadin and anti-endomysial antibodies. The biopsy showed her to be Celiac, and for the first time her seizures were controlled. Folic Acid deficiency secondarily causes the calcification. Rarely does the calcium deposit almost disappear, but it did in this case. "

Even though the tests are negative, it may be worth it to you, as a mom, to do a trial gluten free diet to see if her symptoms improve. Just something to think about.

Best of luck to you and your daughter!!! Regardless of whether gluten is/isn't a problem for your daughter, I sincerely hope you find some answers.

gfpaperdoll Rookie

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  • 3 weeks later...
rick-spiff Rookie

Hi, new here but had to comment.

My nine yr old has adhd & odd. At Christmas 2007 he had a seizure. Took him off adderal immed. Got eeg and allergy tested.

eeg came back abnormal

got mri tues

allergic to all dairy (casien, whey)

eggs

gladin/gluten

wheat

mild allergy to peanuts (which i elimanated) and beef

so far no other seizures!!

Ursa Major Collaborator

Seizures are a fairly common problem caused by celiac disease. Unfortunately your doctor didn't order the whole celiac blood panel, and therefore celiac disease can't be ruled out.

The blood work is not very reliable and yields many false negatives. Stunted growth and digestive problems also point towards celiac disease.

Constipation is also a common symptom of celiac disease, but could also be caused by dairy or soy.

I agree that you might just want to try a gluten-free diet with your daughter, and it would be a good idea to also eliminate all dairy and soy. It wouldn't surprise me if her digestive problems would clear right up, and her epilepsy resolve. And she might start growing, too.

rick-spiff, adhd and odd are common symptoms of celiac disease. I hope that your son will improve tremendously on the gluten-free diet.

All the best to both of you.

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    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
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    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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