celiac vs. gluten intolerance--anyone know?

Penny - posted on 06/12/2011 ( 4 moms have responded )

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our son was first dx celiac via bloodwork. then told no to celiac bc gene testing was negative. Had endoscopy dr. said our sons intestines were "not normal" and had all the signs of celiac. Then told us stain testing was negative so no celiac. Now dr thinks he is gluten intolerant.....anyone have anything similar happen? We started the GF diet and his abdominal issues are almost gone--no vomiting or D but need to get to the bottom so we can help him. any advice?

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Anne - posted on 12/15/2011

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It might be worth consulting a dietician and asking them to help you interpret the results for your particular situation. Some people use the terms coeliac disease and gluten intolerance interchangeably, and some people refer to gluten intolerance as a situation where some gluten can be tolerated. Obviously if your son had coealic disease he would need to be on a totally gluten free diet, so I would go for making sure you are completely clear about whether or not he has coeliac disease before changing his diet. If you are not sure, you are entitled to go back to your doctor and ask again - you need to be really clear from a medical point of view about his needs and diagnosis. Hope this is helpful!
Anne
Author - Meeting Special Needs - Supporting Children with Coeliac Disease and Gluten Intolerance (Teaching Solutions, 2011)

Jenna - posted on 12/08/2011

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he endoscopy results should be more concrete than any other test and that show the damage caused! Many people have a negative blood test but go on to have a positive result from the endoscopy! if he is showing damage then that would point to him been a coeliac! Having an intollerance means that it can be outgrown but been coeliac is for life!

Christy - posted on 10/28/2011

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My daughter and I both have issues with gluten. I've had bloodwork that came back negative for Celiacs, but there is no doubt that it affects my body! My doctor told me that even if my tests cam back negative, if I feel better eating a gluten free diet, then I should continue to do so. Therefore, Celiac or not, my daughter and I eat gluten free! I wish you all the best!

Nicole - posted on 06/26/2011

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Sounds like he needs a GF diet no matter what so focus on that. To me (and I'm a mom, not a doctor), would say he has celiac disease. Why? Both his bloodwork and intestinal results were positive for celiac. Why would they even run a genetic test? (Curious, mine weren't given genetic testing.) Have you asked the doctor if he says it's not celiac, what else would cause the specific immune response that celiac does (the blood tests that were positive)?

If you look for others, you will no doubt find some cases of celiac people without the genes. But ultimately, celiac or gluten intolerant, he needs a GF diet and that's most important! Good luck!

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