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Mom of a Celiac toddler

Distressed About What To Do

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:( My son recently tested positive for Celiacs on a stool sample. The dr told me we have to do a biopsy to confirm, so the nurse called me to schedule it and told me the dr is going out of the country and we can't get the biopsy done for a month! I am in Oregon and there are only seven GI docs. I have been told that we should not start doing the gluten free diet because it can sway the test. What do I do?? Any advice...I don't want to wait that long. Should I go ahead and start the diet?

Thanks Celiac Pros!!

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:( My son recently tested positive for Celiacs on a stool sample. The dr told me we have to do a biopsy to confirm, so the nurse called me to schedule it and told me the dr is going out of the country and we can't get the biopsy done for a month! I am in Oregon and there are only seven GI docs. I have been told that we should not start doing the gluten free diet because it can sway the test. What do I do?? Any advice...I don't want to wait that long. Should I go ahead and start the diet?

Thanks Celiac Pros!!

There are stool tests for gluten sensitivity, but Celiac Disease cannot be diagnosed through a stool test. The only accepted medical tests are through blood tests and endoscopy/biopsy procedures. A blood test is usually first performed for determining whether Celiac Disease is present. A positive blood test is usually a very good indication, but false negatives are very common. The biopsy may show villi damage, but sometimes does not - even when the patient has Celiac. Often, a positive response to the diet is the best indication. Hope he's feeling better soon.

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It is correct that your son must continue to eat gluten for his test to be accurate. Can you be scheduled with one the other GI's? It needs to be a pediatric GI and there aren't many of those. If another will see you sooner or has a cancellation, maybe that would be the answer.

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I know a month seems a long time when your child is suffering. How ill is he? If you tell us what his symptoms are someone may know of something to make the month easier. In the meantime call your doctor and ask if you can get a lab slip for a full celiac panel incuding a total IGA. The incidence of a false negative on blood tests is higher for children but if they are positive you can be pretty certain he is celiac.

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