Infantreflux.org | kevieb-celiac questions

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September 14, 2006 at 10:41 pm #13629

Anonymous
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I believe I read in one of your posts that neither you or your dh have celiac yet 3 of your children do. I was told by my dr that if neither I or dh tested positive then our dd couldn’t be positive. But I’m beginning to doubt her knowledge in this area. Kayleigh’s been GF since 3/05 and I know I’d have to reintroduce it to have her tested so I’m not sure what to do. Also,her nuerologist said today that he wants her to have a small amount of gluten before her EEG because she does have an increase in seizures when she’s had an accidental ingestion. So maybe I should get her celiac panel done at the same time if my dr was incorrect. Thanks

September 14, 2006 at 10:55 pm #13630

Anonymous
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neither kevin nor i have celiac disease, but one or both of us carries the gene. about 40% of the general population has the celiac gene, but all of them don’t have celiac disease. something has to activate the disease. i agree with you about your doc—she doesn’t seem to be real knowledgeable about celiac. the newest test is the TTg test. i’m not sure how long she would need to be back on gluten to get an accurate test.

we know that one of our other children carries the gene, but does not have any active disease right now.

there are alot of people that feel that a positive response to a gluten free diet is enough of an answere for them and they don’t look for any further diagnosis. some people want a definite diagnosis.

what type of allergy testing did you have done when you discovered her gluten allergy? by the way—seizures sometimes are a symptom of celiac disease.

September 15, 2006 at 12:41 am #13634

Anonymous
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Thanks I knew you would have good info on this. My dr is great at some things and quite lacking in others. I guess that’s why there are specialists out there.

How do you know if you are a carrier? I had a full celiac panel done and I remember seeing TTg and some results but she told me that I was within normal limits.

Kayleigh had a RAST done in 1/05 and it came up highly allergic to wheat so we went wheat free and nothing changed so her ped said go GF and within a few weeks we saw huge improvement and it’s just gotten better. I never knew that about seizures and celiac maybe that’s why her nuero asked for her to have some gluten before the EEG. Thanks for responding so quick.

mom_ona_mission2006-9-15 0:50:20
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