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Daughter Recently Diagnosed, Questioning Diagnosis

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Posted 18 December 2012 - 12:38 PM

My daugher (now 20 months old) was pretty recently diagnosed with Celiac, but I'm questioning the diagnosis. I haven't seem much of an improvement. She has been on the gluten-free diet for now 10-12 weeks and I thought by now I would see an improvement with her behavior, and stools, but I haven't seen much. Her bowls are better, but still not great. There are days that she still goes 3+ times a day, but some days are better than others, and she still has quite fussy, like she doesn't know what she wants. She wants to be held, then as soon as she is held, she wants to get down. She wants to eat then as soon as I make her something she doesn't want to eat. Just stuff like that, which was the same way she was before she got diagnosed. I know her age doesn't help much (since she is close to those terrible 2's) but I still don't feel like this is the right diagnoses. They did blood work and only 1 of her test came back abnormal (tTG). It wasn't extremely high but still in the abnormal range. We did the endoscope and it turns out that there was some damage to the end of her small intestines, which the GI told me that was unusual for Celiac to start showing there and not in the duodenum bulb but since there was damage he wanted me to start her on the gluten-free diet. There was no other damage any where else, and they took 8 biopsys.

Also I just had my oldest daughter (3years old) tested and she came back negative. DH and I are going to be getting tested too just to see if it truely is Celiac. But I just need some insite as to if you think this truely can be Celiac or if it is possible it could be something else
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Posted 18 December 2012 - 02:54 PM

Sounds like she is pooping and acting pretty much like my girls did at that age and like my cousin does who is that age.

Could it be celiac? Of course. It is possible it was caught early enough that she wasn't so terribly sick that this became truly horrid yet and she wasn't terribly damaged. Could it be something? Sure, why not? But why risk poisoning her and making her sick and risking all the complications of celiac because she is acting her age? While false negative blood tests abound, false positives don't. As a matter of fact I can't recall ever having heard of one although someone else may have. IMO she is acting (and pooping as often) as a kid about to turn 2, I don't see a reason to mistrust a medical diagnosis over that.
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Posted 18 December 2012 - 03:03 PM

Is she still playing with playdoh? Is she in daycare, in a playgroup, with a nanny, or watched with other kids who eat gluten foods? Did you remove all gluten from your house or find another way for her to not get ahold of any gluten foods that anyone else in your house eats? Did you remove all sources of contamination from her foods (no shared toasters, cutting boards, strainers for things like pasta, etc.)? Are you still nursing and eating gluten yourself?

I'd look for sources of contamination first. as false positives are not common at all.

But, as a mother of a 2.5yr old, eh... a lot of what you are describing is 100% normal. Or is a product of a tired child who didn't sleep well. Or teething (two year molars can come before two years). Or a cold/virus as is SO common this time of year. Or a growth spurt/developmental milestone (which still affect behavior, but are harder to pinpoint as they get older as they might just be things like understanding time concepts or grammar concepts).
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Posted 18 December 2012 - 05:12 PM

I agree with the above advice, but I would add that you might also remove dairy, soy, and oats from her diet to see if she is having trouble with them, as well (very common in people with celiac). I also highly suspect that there is cross-contamination going on....and if there is, you won't see much of an improvement in her symptoms. She needs to be STRICTLY gluten free to determine if gluten is at the root of her problems.
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