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Intro And Question

ILhsmomof3

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ILhsmomof3 Newbie
ILhsmomof3
Posted

Hi, all! I've been lurking for a while. My son, age 7 1/2 was dx back in June with celiac. We went to the family doc because of some bleeding, were referred to a ped-GI specialist, did the endo-/colon-oscopy with some biopsies and x-rays as well, and here we are in the land of celiac disease! He and one of his brothers (the middle child) are on a gluten-free diet. Even though the middle child hasn't been diagnosed, we feel he probably has celiac. My 7 1/2 yr old never had any symptoms, and is in fact overweight. The middle child is terribly skinny and has never much of an appetite, but no other symptoms. I'm thinking about putting the youngest child on the gluten-free diet as well; he doesn't have any symptoms but did have some weight gain issues early on, which seem to have been corrected for quite a while now.

Anyway, we're doing well with the diet, but I worry because none of the boys have ever shown any obvious symptoms. So, what if they're getting gluten and I just can't tell? The diagnosing doctor seemed very knowledgable, and we don't have any complaints with the testing that was done. BUT, the dietician who called us (so we wouldn't have to drive 1 1/2 hrs to consult with her) said, "Don't worry about there being gluten in the products labeled as containing 'artificial flavors' - that can't hurt you." Well, I've learned better, thanks to you folks here!!

I'm wondering if we should have some blood tests done on our own after a certain amount of time on the gluten-free diet, to see if they're still getting gluten. What do you think? The doc seems to have pretty much written us off, not planning any kind of follow-up treatment/monitoring/care at all.

Thanks for reading all this rambling! I get a lot of support and info from the posts here!

God bless!

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ashlee's mom Rookie
ashlee's mom
Posted

Hi! I think it is time to find a new ped GI! It is my understanding that Celiac patients need regular follow ups and blood tests to ensure they are not getting any gluten. That being said, since your other children have not been tested initially, I don't know if it would be very effective. Before having your youngest go gluten-free, you might want to have him tested so you have something to go from. You can always just have them eat gluten-free, but if you ever want to have them tested, you would need to have them knowingly eat gluten. If finding another Ped GI is not an option (there don't seem to be that many around) I would gather information to inform your doctor about the ongoing needs of people with celiac disease. It might not be such a bad idea even if you switch to inform him, since the more educated doctors are, the less Celiacs have to suffer! Good luck!

Michelle

stomica Rookie
stomica
Posted

Hi! You mentioned you went to the doc because of some bleeding...just wondering what kind of bleeding your son experienced? I just ask because my daughter had some blood/mucous in her stool and the ped GI said that celiac does NOT cause blood in the stool. What did your say? Thanks!

Sue

ILhsmomof3 Newbie
ILhsmomof3
Posted
  • Author

Thanks for the advice, guys. As for the question about bleeding...my son had some blood in his stool. Not much, but enought that we were worried and got him in to see the doc. After all the testing, the ped GI said that celiac isn't known to cause bleeding. But he thought that our recent diet change had caused some irritation, and that's where the bleeding came from. Silly me, thinking to get my family eating healthier, had just started buying everything whole grain that I could. Cause everyone knows whole grains are good for you, right?! AAARGHH! Everyone but celiacs!

But, at least through this process we found out that he has celiac, and he hasn't had to deal with any of the terrible symptoms some of the posters here have to deal with, because he's still asymptomatic.

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