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Extremely High Ttg

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Hello! My 4 1/2 year old son was tested last week for celiac disease. Other than loose stools he does not have classical symptoms, however he has always had dark circles under his eyes, has low normal ferritin, despite iron supplementation, and most recently his skin has started to appear yellow to me (not jaundiced). At my insistence the pediatrician tested him (he didn't want to because my son is very large for his age). Also, he has a non IgE mediated allergy to soy and dairy.

Anyhow, my son's tTG came back at 663. I have scoured the internet but I have not seen such a high reading. (The nurse I spoke with from the ped clinic said he definitely had celiac disease with such a high reading-they are recommending biopsy for insurance/tax purposes, but we have declined.

Is there any significance to such an extremely high tTG? Does this mean he is even more affected and has developed an incredibly large immune response to gluten? Is there any other concern with it being so high???

thank you SO much-these are new waters for us!!!!

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Since you're declining the biopsy, I would ask for a confirmatory test that is more specific for celiac disease, either anti-EMA or deamidated gliadin before he is off gluten for too long. I assume you've taken him gluten-free, so you will have to get the test done fairly quickly (within a week would be good). With the high TTG number and yellowed skin I would want to be absolutely sure it's celiac and not another autoimmune disease.

Don't worry about the high number. High numbers can be associated with more severe villous atrophy but kids heal really fast. You've gotten him diagnosed young and he should be just fine.

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