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Finally Got In To See Pediatric Gi

Guest Chrisbee

By Guest Chrisbee
in Celiac Disease Pre-Diagnosis, Testing & Symptoms

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Guest Chrisbee
Guest Chrisbee
Posted

Today was my six year old's first appointment with the GI. We'd been waiting three months and had already gone gluten-free at our family practioner's suggestion. We felt so much better, we stayed gluten-free, then found out it was a bad idea to do so without having the tests.

The GI was very nice and listened to me for a long time and read the long list of symptoms and family history that I had typed up for him. He seemed very knowledgeable and explained how all the tests work. I told him I really didn't want to make Noah do a gluten challenge and he said that three months is not long enough for Noah's intestines to heal and if there was damage he could find it. He really thought that Noah had Celiac and had four blood tests ran today, including the DNA test. I asked him which lab he used, he told me and it was one that wasn't recommended here. I asked if he would use Prometheus and he was glad to. I told him I was afraid Noah's test would come back negative because his sister's did and she still had a positive biopsy. And the fact that Noah has been gluten free for three months might affect the test too, but he said it usually takes 6-12 months for the test to be negative after going gluten-free. I told him that went against everything I had read.

He told me that if Noah's Total Serum IgA comes back showing that he doesn't produce antibodies (like his sister) then he will go ahead and do the endoscopy and he also uses a rectal biopsy because he said that even though it is used less often in the states, it will often show changes if celiac is present. He'll also do that if the blood tests are positive for celiac. If they are all negative, he wants to check him for cystic fibrosis, and some other disease he mentioned (forgot already, my head was spinning), but he said most likely it is celiac. He thought Noah looked anemic and wants to do a workup for deficiencies, including vitamin, iron, and calcium.

He said we should do a gluten challenge of a week or so before Noah's endoscopy. He said he thinks that will be enough to show subtle changes if Noah does indeed have celiac.

On another note, the baby has also been gluten-free since March. I left here with my MIL today while I took Noah to the GI. I had made gluten-free chicken nuggets yesterday, gluten free buns and had bought gluten free hot dogs. I also stocked up on all kinds of ready to eat gluten free snack and fruit cups. I showed her all the foods she could choose from for the baby. When I got home, she was laughing (she does that when she's nervous!), saying she accidently gave the baby a jar of baby food with gluten in it. I had two jars that I had set aside, on top of our microwave stand, to get rid of. The baby screamed all afternoon with gas and I just got her to sleep. That was the first gluten she's had...I just hope she doesn't get sicker. I wish I would have thrown it out, instead of saving it to give to someone else. Poor baby!

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