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re-test in a few years?

Karag

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Karag Apprentice
Karag
Posted

I wasn't sure where to post this but here is goes… my daughter's test results came back negative for celiac and we opted not to do the endoscopy however we have cut all obvious sources of gluten and her symptoms greatly improve while she is on a cleaner diet.  Last weekend we did a "test" meal (she wanted pancakes really bad), within 24 hrs her tummy was again bloated, within 48 hours her tummy hurt and so did trying to have a bm, and within 72 hours her leg pains had returned.  I plan to talk with her doctor, but we can't be seen until the end of the month.  Would I be correct to assume that she has NCGS? She is back on a gluten free diet, but I'm curious to know a few things… Should we try the gluten challenge and have her retested for celiac in a couple of years? And if I understand things right, cross contamination shouldn't be as big of a worry for her?  And lastly, I know going dairy free helps many celiacs, would this be the same for NCGS? thanks for you insight!

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PinkyGurl Explorer
PinkyGurl
Posted

How old is your daughter?  For many kids it's best to do a endoscopy with biopsy because their systems haven't developed IGA yet.  Did she have a total serum IGA done to see what her IGA levels are?  Personally an endoscopy isn't a big deal I'd do the challenge now and just do it to be 100% sure.  Why risk cross contamination of you aren't 100% sure ahe doesn't have celiac.

Karag Apprentice
Karag
Posted
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Thanks. Our daughter is 5 1/2 and her IGA was 61 (range of 27-195). It was myself who pushed to have her tested after some searching online. So when the results came back negative but her symptoms improved that is what has made me question celiac vs. NCGS. Her dad had two endoscopies done last year so I guess I'm not pushing it for her because a) her doctor hasn't pushed for it and b ) financially is an unfortunate answer but honest as I don't know how insurance would handle it again if I am the one pushing for it. 

Because her symptoms have improved while being on a mostly gluten free diet I'm not overly concerned at this point. I say mostly gluten free because to this point I have cut the obvious signs of gluten but haven't stresse about the hidden ones yet. 

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