Celiac Or Not?

[7yrslater]

I'm new here, to the forum and to the possibility my 13 yr old daughter might have celiac. For about a year and a half she has battled with very painful joints. For a year she was poked, prodded, tested, x-rayed and nothing abnormal showed up. We saw her pedi who sent us to rheumotology who didn't think she had arthritis because there was no "proof". No matter that my dd woke up crying in the morning, missed countless days of school, had to quit gymnastics for the pain, couldn't run in softball and often sat on the bench and cried because her knees hurt so bad. Finally, in September '11 they did and MRI of her ankle and lo and behold, the nurse called me the next day, shocked, saying she did indeed have JRA (Juvenile Rheumatoid Arthritis). My first thought was well, duh!! So, she went on Methotrexate, on top of the massive quantity of Naproxen she'd been taking for the pain. After a couple of months, the pain started getting bareable. At least to the point where she didn't cry all day or complain about her ankles, knees, hips, back and shoulders hurting so bad she couldn't move.

Then, just before christmas, she started getting this rash on her chest. Which then went to her back. Then to her jaw on one side. She scratches it CONSTANTLY. She will literally lay on the ground and scratch herself like a dog, LOL. She cries about it being so itchy. She's missed more school. Her stomach hurts all the time. She poos several times a day--runny--which she says has been happening for months. I didn't know this. (What 13 year talks about their poop, right?) The thing is, there is no rash. Just intensely itchy skin. It isn't dry, it isn't red. There are a few bumps on her jaw. It doesn't look like eczema though I guess it could be. So I called the pediatrician when I got tired of hearing her so miserable. (We tried zyrtec, benedryl, cortizone cream, expensive lotion) We went to the allergist. She said it was the methotrexate. Rheumo said it can't possibly be the meds, go to the allergist. AAAAHHHH!!!! Someone please just tell me what the H is wrong with my child!! The pediatrician said, we're going to do some blood work for Celiac. Huh? Well, when you have one auto immune disease, sometimes you have another... OK. So I start researching Celiac. HOLY CRAP. My dd has soooo many of the symptoms. So now I'm thinking OMG this is what she has. I just KNOW it. And the blood work comes back negative. Like all of her other 100 blood works have in the last year. So disappointing.

Last night she'd had enough. I want to try no gluten, mommy. I want to see if I feel better. Fine. I have no problem with that. So we started no gluten last night. Here are her symptoms. Does it sound like celiac to you???

Abdominal cramps

gas

flatulance

nausea

diarrhea

easy bruising

joint pain--I see celiac's list this as a symptom. perhaps she doesn't even have arthritis?

fatigue--all the time

Had a really weird, sharp pain in her side last year for about two weeks--no diagnosis again.

often doesn't feel good--body aches, head aches, pain

constant injuries (just got over a broken ankle)

bad teeth

and just this morning!! discovered a blood test from yesterday showed a Vitamin D deficiency

Thanks for any advice!

[Skylark]

Welcome. Yes, it could definitely be celiac! Her symptoms are really typical. Is celiac testing even reliable on methotrexate? I would wonder since it suppresses the immune system.

Dermatitis herpetiformis, the celiac rash, is intensely itchy. I used to have what I think was a patch of it and it was scratch-my-skin-off itchy. I didn't always get blisters or anything visible but the itching was beyond description. As well as gluten-free, try taking her low-iodine. Iodine is a trigger for dermatitis herpetiformis. Eventually the antibodies work their way out of your skin and for me at least, the iodine has not been a problem.

Kudos to your daughter for being brave enough to try a difficult diet to see if it helps. I know it's hard but I'd suggest she initially go off dairy as well. Dairy is a problem for a lot of us and she is most likely to get a good affect from the diet. You can reintroduce it if she gets to feeling better.

[Mom-of-Two]

Sounds VERY possible! I would not take out gluten until she is blood tested for celiac-- many people by the way discover they have celiac because they have been diagnosed with other autoimmune diseases....having JRA means she is already more likely to have celiac disease.

I would ask for a full celiac blood panel asap, before removing all gluten.

[7yrslater]

Welcome. Yes, it could definitely be celiac!

Kudos to your daughter for being brave enough to try a difficult diet to see if it helps. I know it's hard but I'd suggest she initially go off dairy as well. Dairy is a problem for a lot of us and she is most likely to get a good affect from the diet. You can reintroduce it if she gets to feeling better.

Thank you! it's good to know I'm not going crazy. And, I'm guessing it is possible to get this diagnosis later in life? I don't remember her ever having issues in earlier childhood--she had her tonsils out at 11 and does seem to get sick easier than the rest of my kids. Now I'm wondering if this isn't at issue with her younger sister (now 11) who has ADHD, anxiety, Bi-polar.

[7yrslater]

Sounds VERY possible! I would not take out gluten until she is blood tested for celiac-- many people by the way discover they have celiac because they have been diagnosed with other autoimmune diseases....having JRA means she is already more likely to have celiac disease.

I would ask for a full celiac blood panel asap, before removing all gluten.

She's had the panel. Did it last week. It was negative.

[Mom-of-Two]

I'm sorry, I must have skimmed and not read closely enough!! Sorry!

[Skylark]

Thank you! it's good to know I'm not going crazy. And, I'm guessing it is possible to get this diagnosis later in life? I don't remember her ever having issues in earlier childhood--she had her tonsils out at 11 and does seem to get sick easier than the rest of my kids. Now I'm wondering if this isn't at issue with her younger sister (now 11) who has ADHD, anxiety, Bi-polar.

Celiac made me bipolar and anxious. Among other things. I had all the GI trouble too. I would strongly suggest you get her tested and then take her off gluten with her sister. It's easier having fewer people eating gluten. You might be pleasantly surprised if you join them as well. Gluten intolerance/celiac is genetic.

And yes, celiac disease can come on any time in life. Even over 50.

[eatmeat4good]

Wow. It all adds up doesn't it?

So sad that our kids have to feel that bad for that long.

If I were a betting man...but I'm not...

I'm just a Celiac woman who knows how it feels to be undiagnosed...

but I would guess giving up gluten will make a world of difference to her.

There are too many things going on there and such an uncanny resemblance to Celiac.

I hope you will take her gluten free and then come back and tell us what resolves.

I hope she feels better soon.

And you too.