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Waiting For Results

mom2katry

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mom2katry Newbie
mom2katry
Posted

Hello. I am new here. My daughter is 7 and has a positive blood test for Celiac. She had her biopsy last Wednesday and we are currently waiting for the results. I thought maybe I could ask a few questions here while we wait.

Her main symptom is constipation. She has suffered from it since she was a baby. Doctors kept telling us that it is normal and that some kids just have "functional constipation" and she might eventually grow out of it. Well, at her 7 year old check-up, they noticed that her growth has slowed tremendously. She went from the 50th % to the 5th % over the last few years. They sent us for bone age X-rays which show her as being 5 years old. Next we were sent for bloodwork, which came back positive for Celiac Disease. Within a few days we were seeing a GI doc who took her in for a biopsy that same day. When the doc came out, he showed us pictures and told us that he didn't see much damage, just some inflamation. He seemed to think that maybe she doesn't have it, but wanted to wait for the biopsy to come back before he said for sure.

Now I am confused. If she ends up NOT having Celiac, than what else could it be!?! Something is obviously stopping her from growing? Everything I have read leads me to think that she DOES have Celiac. Don't get me wrong, I don't want her to have it, but if she does, at least we will have answers. If they tell me that she doesnt' have it, I have NO idea what else could be going on with her.

Does anyone know if she can have a positive blood result, but NOT have Celiac?

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leadmeastray88 Contributor
leadmeastray88
Posted
Hello. I am new here. My daughter is 7 and has a positive blood test for Celiac. She had her biopsy last Wednesday and we are currently waiting for the results. I thought maybe I could ask a few questions here while we wait.

Her main symptom is constipation. She has suffered from it since she was a baby. Doctors kept telling us that it is normal and that some kids just have "functional constipation" and she might eventually grow out of it. Well, at her 7 year old check-up, they noticed that her growth has slowed tremendously. She went from the 50th % to the 5th % over the last few years. They sent us for bone age X-rays which show her as being 5 years old. Next we were sent for bloodwork, which came back positive for Celiac Disease. Within a few days we were seeing a GI doc who took her in for a biopsy that same day. When the doc came out, he showed us pictures and told us that he didn't see much damage, just some inflamation. He seemed to think that maybe she doesn't have it, but wanted to wait for the biopsy to come back before he said for sure.

Now I am confused. If she ends up NOT having Celiac, than what else could it be!?! Something is obviously stopping her from growing? Everything I have read leads me to think that she DOES have Celiac. Don't get me wrong, I don't want her to have it, but if she does, at least we will have answers. If they tell me that she doesnt' have it, I have NO idea what else could be going on with her.

Does anyone know if she can have a positive blood result, but NOT have Celiac?

Hi there! :)

False positives are pretty rare when it comes to bloodwork.

I think it's pretty telling that her doc noticed some inflammation. You'll have to wait and see how the pathologist reads the biopsy - remember that she's only 7. It wouldn't be surprising if she didn't have full-blown celiac disease yet, she's so young. Also, damage can be patchy and they may not have taken a part that was damaged...we have 20 feet (or something like that) of intestine so what are the chances?

I read a story on here a week or so ago where a mom took her 6 year old daughter who has positive bloodwork for a biopsy and they told her she didn't have Celiac. A year or so later they retested her and Bingo, Celiac Disease. It's progressive so if she hasn't had it long enough, they'll tell you she doesn't have it even if she really does, she just doesn't have extensive damage...you don't really want to give her gluten if its hurting her right?

Either way, I would take her bloodwork to heart and get her on a gluten free diet ASAP...you have nothing to lose! All of her testing is done so it's safe to do so now.

Welcome, you've found an amazing support group! :)

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