Waiting For Results

[mom2katry]

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?

[swalker]

The samples they take for a biopsy are very small so sometimes they don't grab from a heavily damaged area.

She's gluten intolerant even if she's not celiac judging by the constipation and slow growth. Removing gluten will probably fix all of her issues but lots of us have had to remove dairy, corn and soy as well.

[ang1e0251]

I'm no expert or healthcare professional but I have read how difficult it is to get positive bloodwork in kids. I haven't heard anyone report a false positive. Anyone know of one?

[LDJofDenver]

  mom2katry said:

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?

[LDJofDenver]

  mom2katry said:

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?

I'm not a medical professional either but you usually hear about false negatives, not false positives. However, you DO hear about negative intestinal biopsies - they can be for a variety of reasons, including handling of the specimen, and the location where they actually took the tissue.

Perhaps, if the intestinal biopsy comes back negative, go for the genetic testing. These words from Celiac Center UCSD (Open Original Shared Link):

"Genetic screening, on the other hand, is not affected by age, testing methods or diet and can be an excellent tool. However, their main usefulness is to help exclude the diagnosis. That is, if the major genes associated with celiac disease are not present, one can exclude the diagnosis with close to 100% certainty." -- That could be valuable information.

And, by the way, if she is testing positive for celiac disease, consider testing for other family members, as it is genetic. It has come from one side of the family or the other.