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Positive Panel, What's Next?

arismama

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arismama Rookie
arismama
Posted

Hi all...new here. My daughter's ped recently did an extensive blood draw on her and her Celiac panel came back with red flags. I don't know exactly which (thinking iga) but the ped said it definitely showed levels indicating possible celiac disease. I have read that true diagnosis is confirmed through biopsy. Then, I've also read about endoscopy. Are they referring to the same thing, just specific method? My daughter is 15 months old and terrified of others (esp. docs) so I'm guessing they have methods where anesthesia is allowed? So I've read, anyway. I know you guys probably get this type of message all the time, so I'm sure I'm asking the right folks. I guess I'm just trying to figure out what to expect next. We don't see the Ped GI until mid-November.

Thanks much!

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lovegrov Collaborator
lovegrov
Posted

First, she must continue eating gluten. The biospy is done by the endoscopy and, yes, she'll be sedated. She should also get an amnesiac and shouldn't remember a thing. Ask the doctor how many samples he takes -- it should be 10 or more.

richard

typhoontyty Newbie
typhoontyty
Posted

Hello. We are in a similar situation. My son is almost a year; and after a month long run of diarrhea his ped. ran the celiac panel; and he came back positive for the IgG and IgA antibodies. The ped. said "he has celiac disease, he needs a gluten-free diet'. So last week we went to the ped GI dr. and HE said based on those lab tests he isn't yet convinced it is celiac. He drew more blood for a bunch of lab tests; including some food allergies; and more extensive celiac screening (I think he is testing for 'total IgA or something...if that level is low then the blood test isn't accurate anyway). They are also testing his stool for fat. He said to go back on gluten - and see how he does. Then; if based on those labs it still looks like celiac then my son will have an endoscopy to take biopsies. The ped. GI mentioned our problem could be 'toddler diarrhea' - which toddlers sometimes get because their digestive tracts aren't mature yet. This can sometimes last until potty training. It's a bummer you can't get into the ped. GI sooner - so they can start ruling things out and finding a diagnosis soon! Renee

arismama Rookie
arismama
Posted
  • Author

Thanks Richard & Renee for your input. I'm not sure how extensive the Celiac panel was that they ran, but I know my daughter's ped wouldn't go so far as to say that it was definitely celiac disease. I think they should leave that up the GI folks, anyway. She did say to keep a stool sample stored in the fridge in case they wanted to check that out as well. My daughter doesn't really have diarrhea very often at all, but she's failure to thrive and has the irritability as well. I thought the wait to see the GI was long myself, but then I was told my friend had to wait up to 4 months so it didn't sound too bad! Does anyone happen to know how long the endoscopy takes and if they usually let the parent(s) accompany during the procedure?

Jen

lovegrov Collaborator
lovegrov
Posted

I THINK most places will let you stay with your child at least until he or she is sedated, and probably the whole time. The procedure itself doesn't take more than 20 minutes, maybe not even that long. It takes different people different amounts of time to come out from under the sedation.

richard

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