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What If My Dd Was Misdiagnosed With It?

emmahasit

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emmahasit Newbie
emmahasit
Posted

Hi, I am seeking help here. My dd had chronic diarrhea for 2months and was tested for parasites, etc. She was put on Flagyl and it helped but then when she went off of it, her illness returned. We drew blood 3wks ago and went to GI specialist last week. Only test not back was Celiac. Well, the pediatrician called and said she tested positive for the antibodies <2. But she has miraculously been better for 2wks and has eaten every gluten item you could imagine.

I am at a loss of what to do. Do I retest? Do I put her on gluten free? Is there damage that can be done if I do not? The GI and Ped are having a conference call on Monday about her, but I am so worried I will cause damage to her small intestine if I don't stop with the gluten right now.

Any thougths on this? Her diarrhea started after antibiotic and swimming in a lake. Could this still warrant a positive test?

She is 22 mo old and 24lbs. She is taller than average but skinny. Anyone hear of someone testing positive for Celiac but not have it? Anyone hear of symptoms just disappearing? (the GI seemed to think her enzymes had matured)

Any helpful advice would be appreciated. Thank you!

Emma'smomm!

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sashabetty Explorer
sashabetty
Posted

Emma's mom,

If you are thinking about doing an endoscopy or further testing, I would not stop gluten yet. They do heal surprisingly well, and discountinuing gluten could make future testing inaccurate.

Also, yeast can possibly trigger the onset of Celiac, so the antibiotics could have played a part in the symptoms manifesting when they did.

And the symptoms can come and go, at least in our experience, but I can't say if that's what's happening in your daughter's case.

As far as what to do now? You have to make that call.

All I know is I kick myself because I didn't pursue further testing when 2 yr old got sick last year since the gluten-free diet made her better. We put her back on gluten this year and she did get sick again but not as sick and the tests showed nothing. So we tortured her for 3 months just to show it made her sick but not to prove anything.

It's hard, and it's a personal choice, but I think that a few days aren't going to change her health too much if you are going to do more tests.

Take care.

tarnalberry Community Regular
tarnalberry
Posted

I understand that testing that young is quite difficult. I hope the docs can come to some agreement on the best course of action. Good luck!

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