12 Yr Old Girl: Polyarthralgia / Positive Celiac Biopsy?

[webbydu]

Introducing ourselves ... I'm a mother of 3. My youngest (12 year old daughter) developed arthritis symptoms 6 months ago but her results have been all normal (CRP, ANA, RA, HLA-B27) ... but our GP decided to do a tTg and it was 147 and showed the presence of antibodies for endomysium was detected (positive). Her first cousin (18 yr old female) developed RA at 10. We have had a positive biospy but it did show not show a 'severe abnormality'. The gastro wants to now do a HLADq2 and HLADq8 gene test to make his diagnosis absolutely secure.

She has all through her life had funny rashes and lots of allergies - particularly to almost all antibiotics, NSAIDs (urticaria), some foods from time to time ... she was diagnosed as insulin resistent last year as she had a craving for carbs ... particularly bread!. And was considered (with other tests) to be someone with Metabolic syndrome. She has NOT had bowel problems (i.e. diarrhea or constipation)

And. then this july -- this debilating pain and stiffness. Small fingers and toes, knees, shoulders, ... Has missed lots of school. Is getting treated through Childrens Hospital and goes in each week for physio. To make things a little more confusing ... in May and June she was on a very low dosage of roaccutane for acne. Which can sometimes (rarely ) have joint pain as a side effect.

She is very tall and strong looking for her age. I've never really considered gluten intolerance before as I 've always figured that it was for 'failure' to thrive, gut aches, diarrhea etc. None of which has been her problem.

She is always plagued by continual apthous ulcers - which was a determinant for the Dr. testing her gluten intolerance.

She went on 90mg of Arcoxia (for her severe joint pain) but her stomach pain was really bad after a month or so of taking it. So we've stopped it. She had to take 20mg of Losec with it. (We had to have immunological testing to find out what anti-inflammatory she could have that would not make her develop urticaria - Arcoxia was the answer.) So, we stopped arcoxia, and ... her stomach pain is still there. The endoscopy however did not show any signs of gastritis (which surprised me as I thought it would because of the irritation of the arcoxia.) So ... started wondering if the salmon oil pills were giving her the pain. Seemed to come on when she took her supplements after her food (or with her food). So, we've stopped the salmon oil and .... the stomach pain is still there! So, maybe this is a new symptom from celiac?? which is a typical celiac symptom but has showed up 6 months late after the presenting symptom of polyarthralgia??

She was an avid sportswoman - in an A Grade netball team and in a swimming squad. She is now out of all that. She hasn't been able to run in 6 months.

So, my questions are:

- does this diagnosis seem likely?

- anything else we should consider?

- how long can we expect her small intestine to get right again? Will it?

- will her joint pain go away?????????????????????????

ummm. I hardly know how to explain everything and I feel very flat about it. I try not to look ahead in the future as it does my head in.

We have now gone on gluten free diet. Am learning the in's and out's of it, and this cross-contamination thing is also doing my head it. My husband thinks that it is over the top. But, I try and do it right. Difficult with a 12 yr old when she has sleepovers etc.

We have shed many a tear, the two of us, with copeing with the 'sick' status. From an active successful sporty pre-teen to a sore young girl. Can someone out there give us some hope??

regards

EasternBeachMum in New Zealand.

[ravenwoodglass]

In some of us arthritic symptoms can be present for quite a while before gut stuff seems to be affected. There is a good chance that her pain will resolve, I can't of course say for certain.

I found it interesting when 5 years after I was diagnosed and in good remission from a great deal of issues when I had my genes tested my particular celiac gene is considered a gene for rheumatoid arthritis in the US. It is a recognized celiac gene in other countries though. Do keep in mind also that with a positive biopsy and blood work that she really has already been diagnosed. Please don't think that if she doesn't have one of those two genes that she does not need the diet. There have been 7 more celiac related genes recognized recently so just because she doesn't have DQ2 or DQ8 is not conclusive that she does not have celiac.

Your doing the right thing by trying to be as strict with the diet as you can. Try to make her understand that she can't 'cheat' on the diet and when she has sleepovers or other risky situations try to have her prepare beforehand and bring things that she can safely eat. Hopefully she will be back to her old active self soon.