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Negative Biopsy And Negative Blood Test

MacieMay

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MacieMay Explorer
MacieMay
Posted

My daughter, 17 months, has had two different negative celiac panels and now a negative biopsy result. I still can't help but think that something is wrong. Has anyone else had children test negative before two years of age but positive later?

Thanks!!

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tarnalberry Community Regular
tarnalberry
Posted

Tests in children under 2 are notoriously unreliable.

How does she do on a gluten free diet?

MacieMay Explorer
MacieMay
Posted
  • Author

I think she is better on the gluten-free diet but I'm not 100% sure. Her issue is her skin, she has been flushed faced, almost like slap cheeked for about 5 months. She has this weird rash that looks like eczema somedays and something different on others days, it's on her knees and elbows, feet and hands. She had the scope last tuesday and we were gluten-free all week and i thought she was good until Sunday when she had a few mushy poops and her face and skin flared up. I am certain I didn't give her anything with Gluten, unless there was some cross-contamination, i don't know. I'm just really in need of some answers!! Our doctors are willing to work with us but it takes sooooooooooo much time, it is frustrating. I put her back on a regular diet today to see what happens, i figure, I'd give it two weeks and then we would know for sure if she is better on a gluten-free diet. I was wondering if you might be able to tell me what a "typical celiac poop" is like? I've read sand and hard to wiped, is there anything else I could keep my eye out for, to verify. Also, if I gave her something with Gluten, is it possible for her belly to become distended shortly afterwards? I think I am seeing that but again I'm not 100% sure. Any feedback will be helpful. Thanks!!

T.H. Community Regular
T.H.
Posted

The slapped cheek look and eczema makes me wonder if she has an allergy as opposed to celiac, or even on top of it. Have they tested her for any?

My friend's little one was getting that slapped cheek/eczema issue after eating squash. Then started getting it when they used cucumber wipes, then watermelon. Have figured out the little one reacts to everything in the gourd family. Your little one might be having the issue to gluten, but it could be something else, if you are seeing a reaction to other things. I'd see if you can get a good allergist to take a look, or at the very least keep a food log that tracks the foods eaten and reactions, so you can see if you can spot a pattern, ya know?

MacieMay Explorer
MacieMay
Posted
  • Author

Thanks for the feedback

We have been to an allergist, she has been scratch and blood tested and everything has come back negative. She has also had a scope (endo and colon) and nothing was detected in the biopsies (food allergies included.) Her allergist does not believe that her reaction is an allergy response.

We did the elimination diet a while back, slowly eliminating the big food allergens, and wheat was last on my list. I don't feed my kids processed food or anything that has a lot of ingredients, we try to keep it basic. She is lactose intolerant, something we figured out at 12 mos when she started on whole milk.

Again, we've been on and off the Gluten and I think I see a difference in her, her skin looks better (definitely NOT getting worse...like before, her BM are less and more formed and I think she is happier and less irritable. But because everything has come back negative I'm not 100%, that it is Gluten causing it.

We are currently blood testing for a rare skin disorder and have two up coming appointments with Derm. 1 Pedi out of Childrens Boston and one (not pedi.

We are currently on Gluten and I am watching her very very closely, looking for clues.

nmlove Contributor
nmlove
Posted

Just a thought... I'm in the same boat as you. I have two older sons with celiac and my daughter is 14 months. She's had some food issues with just being exclusively breast-fed. Most she's already outgrown but milk and soy still top the list. She has trouble with all grains if she eats too much but only with digesting. We did try her on gluten at 12 months. Sometimes she seems to react, other times no. It's enough to drive me crazy and doubt reactions, etc. However, sometimes I wonder, and this is my thought, that if she's that sensitive to dairy and soy, maybe I'm dealing with that cross-contamination and not necessarily gluten. Know what I mean? Seems like a lot of gluten foods that I can actually buy pre-made also say "made in a facility..." So it's a thought that's been bouncing around to try and mess with.

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