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My DD is 4 and has had GI issues for a long time -- everything from constipation to impaction with diarrhea and tummy aches, reflux and overactive bladder due to constipation. In April the did bloodwork for Celiac which came back normal. But at that point she was getting constipated to the point of impaction within 2 weeks -- we'd do a cleanout -- and boom, need to do a cleanout again in two weeks. And this was with her going everyday (on miralax AND senna laxatives) -- so she wasn't holding it.

So we did an endoscopy & colonoscopy -- our GI was sure they'd find celiac. But when the biopsies came back she said she was "thrown sideways." Not only did we not find Celiac, but they found inflammation in her ileum and large colon. So, more imflammation indicative of IBD, yet they still will not diagnose IBD b/c there was no damage, yet.

But they went ahead and put her on sulfasalazine -- an IBD med, and she was SO SO SO much better! Perfect, in fact! But the doc wanted her to go off of it so she did and now she's having problems again...grrr.

I keep having this sinking feeling that maybe it really is still celiac? She has other severe food allergies, and maybe this isn't so far fetched?

Does anyone know? Has anyone had a celiac child improve on sulfasalazine? Thanks for any insights you might have!

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Has she had the genetic testing? If the genetics are negative, maybe she does had a non-Celiac gluten issue. (Yes, I know someone will say you can have it without being genetically + but such cases are few and far between).

Why did the Dr. what her off the meds? Are they damaging?

If you really think it is Celiac, have you gone to another Dr. for a second opinion?

Is she possibly being exposed to one of her allergens?

I would start with a second opinion and the genetics. If that is all clear maybe try going gluten-free and see if there is any improvement.

Sorry you don't have more answers. It's so hard when we want to get our little one's well :(

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Thanks, it is discouraging. I am thinking they only keep kids on the meds if absolutely necessary and hat would only be with a definitive diagnosis of Crohn's. (I say Crohn's b/c apparently inflammation in the ileum is Crohn's rather than Colitis). So I think he'd rather see she's having difficulty without the meds and re-scope than to just go back on the meds! Which seems crazy to me. And believe it or not, this is our second GI doc.

Her allergies are epi-pen allergies (nuts and eggs) so she's not had those -- they are lips swelling, hives, throwing up allergies that lead to anaphylaxis.

I honestly don't know if it is celiac. Some days I think it is some days I think it isn't. We haven't had the genetic test. So maybe that's next in line? I just wish this weren't so complicated!

Has she had the genetic testing? If the genetics are negative, maybe she does had a non-Celiac gluten issue. (Yes, I know someone will say you can have it without being genetically + but such cases are few and far between).

Why did the Dr. what her off the meds? Are they damaging?

If you really think it is Celiac, have you gone to another Dr. for a second opinion?

Is she possibly being exposed to one of her allergens?

I would start with a second opinion and the genetics. If that is all clear maybe try going gluten-free and see if there is any improvement.

Sorry you don't have more answers. It's so hard when we want to get our little one's well :(

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Just my opinion - sounds like the sulfasalazine was successful in reducing inflammation which improved your daughter's symptoms - whatever is causing the inflammation remains. Since testing has been inconclusive I would remove all gluten for at least 3 months without the use of any inflammation meds. Often living gluten-free is the best test - especially in children because their systems heal much more quickly than those of us diagnosed after decades of damage.

One other thought - have her vitamins/minerals been checked - Bs, D, K, Iron, Ferritin, Copper and Zinc? If these are low it can indicate she is not absorbing nutrients properly - another strong indicator of Celiac Disease.

I know Celiac testing can be very frustrating - it would be wonderful if there was one test that could rule it out.

Good luck to your family :)

P.S. If you chose to pursue genetic testing, it can be done anytime - going gluten-free will not effect the results like it does with blood and/or endo.

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HI,

I can't say which she has, celiac or IBD, but I do know that some people with Crohn's follow the gluten-free diet. It seems to help some of them but not all of them. Some people don't follow the gluten-free diet until they have a flare and then they do gluten-free until the flare passes. I don't think that makes sense but it's what they do. It is possible to have both Crohn's and celiac.

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HI,

I can't say which she has, celiac or IBD, but I do know that some people with Crohn's follow the gluten-free diet. It seems to help some of them but not all of them. Some people don't follow the gluten-free diet until they have a flare and then they do gluten-free until the flare passes. I don't think that makes sense but it's what they do. It is possible to have both Crohn's and celiac.

If memory serves correctly, 30% of Crohn's patients are dx'ed Celiac as well - they have both.

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She can have BOTH or just an IBD, which honestly it sounds like she has and that is the proper dx. My son's entire GI system is messed up and he has dx for every section of it actually. There is a GREAT IBD support group for parents, I can send you the link if you would like.

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Hi everyone! Well, back to GI doc today and he still seems to think that the Celiac diagnoses is the most likely, and he wants to re-do the Celiac panel. It has only been 4 months since we last did the bloodwork -- but he said that's long enough for something to change. He said 4 years old seems to be the borderline age for most kids -- where they've been eating gluten for long enough that it would show up in their system. She had just turned 4 when we tested her last. So, I am thinking we'll test again before we take her off gluten and then we'll try gluten free after that either way. He doesn't think it is IBD at this time...and I don't think it is nothing at all. Ack!

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