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I have a question. My 13 yr old was diagnosed with JRA back in August. She is doing better--not great--on medication to help control the pain. She went through numerous types of tests, all of them negative, for almost a year before they finally found some inflammation in her ankle thru an MRI. She doesn't present in a normal way. No fevers, no redness, no swelling...just lots of joint pain in her ankles, knees, hips, back, shoulders and now moving into her jaw. The rheumatologist seemed quite frankly surprised that she had it at all which irked me since she'd been battling debilitating pain for over a year.

Anyway, jump forward a few months from diagnosis--around Christmas time. She starts getting a very itchy rash on her chest, neck and now it's all over her face, stomach aches, and having diarrhea 3-4 times a day. Lots of gas, etc. So her Ped did a celiac panel, which of course came back negative just like all her other tests. I researched Celiac. Man, she had so many of the symptoms, I thought for sure this was it, but no. You'd think the girl should never be sick yet she's missed 25 days of school this year. Fine. But she didn't get better. So we did a colonoscopy two weeks ago. Which, guess what?? Was negative. Absolutely beautiful colon, the doctor raved. Wish they were all that clean. Yay. Go my daughter.

Grrr...

My mom spoke to her new chiropractor. He wants to see my dd's blood work because even if she didn't test positive for celiacs, she could still be gluten sensitive? Something about if the numbers were there, but too low for celiacs it might show she's sensitive. And yes, he'll see her with her JRA but he would bet that the JRA is related to a possible gluten problem which is causing the joint pain. And he will only see her if she's willing to go on the diet. We're willing. But this rash on her face. ANyone have any experience with this kind of rash? It does not look like the herpitaformis (sp?) I keep reading about with celiac. It is skin colored, very itchy bumps all over her face. Not acne. Not excema. Not patchy. Bumps. We've seen the ped, the allergist, the rheumatologist (who insists her problems have nothing to do with her medication), and the GI. No one can tell us what the rash is! Might it be related to gluten sensitivity?

So frustrated.

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Sorry for your frustration. A colonoscopy doesn't test for celiac an upper endoscopy does. That's what they need to do. As for the rash I don't know. Do you have pictures? Hope this helps. Have you tried her on a gluten free diet to see if it helps?

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She needs an upper endoscopy asap to biopsy for celiac disease--- children and adults both can have negative blood results for celiac, but a hugely positive biopsy confirming the diagnosis.

My 7yo just got positive blood results (awaiting biopsy) and had joint pain about a year ago that persisted, her pediatrician tested her for JRA, and a few other things all with negative results. My pediatric GI now says it was all related to celiac.

I am now going back in my mind over all of her "symptoms" and realizing what it all means! :)

Good luck!

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Find out what blood tests were done. If your doctor is looking for celiac with a colonoscopy, he/she probably didn't do all the blood tests either.

I'm going to bet you have not had sufficient testing done to rule out celiac disease (blood test and endoscopy).

Her symptoms could all be caused by gluten intolerance.

As soon as you are done testing, (or re-testing I guess) you should try her on the diet even if the tests are negative.

If the tests are positive, you will know. If they are negative, the next "test" is the trial diet. If you see a positive response, you have your answer.

But you may need a new, better informed doctor. It is frustrating, I know.

If I stopped at doctor #1 we would still be in the dark with a very sick kid. Luckily we figured out that I knew more then he did, found a new doctor, and she was able to diagnose him with an endoscopy. He had severe damage.

Hang in there and trust your instincts.

Cara

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I would definitely NOT dismiss this as dermatitis herpetiformis (DH).

I have had head to toe DH for 12 months. It presents very differently on different parts of my body. When you say 'It is skin colored, very itchy bumps all over her face. Not acne. Not excema. Not patchy. Bumps.' I think DH. Very itchy (one of the most in the derm world), obviously not other conditions and bumps. Most of mine are bumps (I use the word lesion to compare it to rash etc that is more like other dermatitis or excema).

Please try your best to post some photos. I would recognise this thing on any part of the body or in its various 'forms'.

I will message you with my email so you can send pics to me if you and your daughter are willing.

Di

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To clear up confusion, LOL. She had the celiac blood testing done by her pediatrician because she was having stomach issues and this rash. She had told me that celiac can cause the joint pain and since she'd been diagnosed JRA, she thought we should do the blood test. It came back negative. I don't know numbers because I haven't seen them but I will be getting them today from the doctor. Weeks later, when she was still having the stomach issues, we saw a GI. Her first step was to look into IBS since there's a history of it in our family. Thus, the colonoscopy. They were looking for Celiacs and told me it was a different test altogether (upper instead of lower) and one which they wouldn't do since her blood tests came back negative. I will try and get pics of the bumps. It is really on her face and neck so I might not be able to get a good shot of it that will show up on a pic. Thanks everyone!

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