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What Else Could It Be?

3girlz

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3girlz Newbie
3girlz
Posted

My 2 and a half year old is being tested right now for celiacs. She presents with what I would consider mild symptoms. She has had persistent diarrhea for about 4 months now, no blood in the stools. She has just begun to lose weight, before she just wasn't gaining. She has dropped from 50 percentile to 25th percentile in weight while stayed at 50th percentile for height. She had the regular blood and stool tests for parasites, salmonella, etc. They even did a celiac panel but only 3 of the tests. She came out negative. We then scheduled an appointment with a pediatric GI specialist at CHOP in Philadelphia. My sister-in-law is a celiac and my husband has never been tested. They re-did the testing and are testing for the gene. They are also saying that regardless of the blood tests they will likely do an endoscopy to see what is going on.

I understand that it is not unusual for the blood tests to be negative but still be celiacs in young children, but I assume that the gene testing is more accurate, if she doesn't carry the gene - it cn't be celiacs.

What else will they be looking for? Is it possible she is just gluten-intolerant or allergic to wheat? Will that show any damage during the endoscopy?

I feel so bad for my little one - she can't tell us what hurts - she doesn't quite understand, she seems to still be energetic and is meeting her milestones, but she is certainly more irritable and isn't like the little girl she was a year ago.

I would apprecitate any information anyone has to share - including what to expect the day of the endoscopy!

Thanks.

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Nic Collaborator
Nic
Posted

Hi, it is very common for young children to test negative falsely on the bloodwork. Also, with the gene test, 95% of Celiacs carry either the DQ2 or the DQ8 gene. That does not account for the other 5%. And yes, it could be a gluten intolerance or wheat allergy as well but I don't know if there would be intestinal damage with those. You could always remove gluten from the diet and see if there is an improvement (don't remove it until after the biopsy though). With a history in the family it is all very likely.

Nicole

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