Gluten Intolerance Symptoms, But Negative Test

[TwoGirlsMom]

Hello. I really need opinions/advice concerning my 9 year old daughter. Since early January, she has been complaining about stomachaches/headaches/nausea. She has not had a fever, vomitting, or "D". I've noticed her stomachaches seem to get worse within an hour of eating wheat products. She's in pain after eating and even the next day.

She's been to our family doctor and a pediatric GI. Had upper GI, ultrasound of gall bladder & pancreas, Celiac panel, abdominal xray, and urinalysis. Everything came back normal.

The ped GI told me she is "stressed" and I should assure her and distract her. This is the child who tells me about every part of her day. I really do not feel it is a stress issue. The ped GI also asked how she's doing in school. Gets straight A's, gets along well with other kids, teacher loves her, etc. The ped GI said she might be stressed because she is an overachiever. What? She's a great kid, but I would not classify her as an overachiever. She does well in school with little effort.

I tried going gluten free with her for a few days. About three days in, she woke up happy for the first time since early January. Just a coincidence?

I'm so frustrated and don't know what to do. Should I just forget test results and doctors and put her on a gluten free diet? Should I take her for a second opinion? Should I just not talk to her about it and see if it goes away?

Any advice is much appreciated! Thank you!

[Cara in Boston]

My son's blood panel was "inconclusive". He was negative on all the IgA tests (the ones usually given for celiac) but high on the IgG tests. The pediatric GI we were referred to told us he DID NOT have celiac (based on his blood test and the genetic test) and that I had read too many "magazine articles." While we were waiting on test results I had made an appointment at the Celiac clinic at our Children's Hospital. Even though MD#1 told us no, we went ahead and met with the new doctor. Since she couldn't explain the weird IgG tests, she ordered an endoscopy and sure enough, he has Celiac Disease without a doubt. I also tested positive for it. My son had ZERO GI symptoms - only a behavior change that brought us to the doctor in the first place. From what I can gather, it is not unusual for kids to test negative on the blood panel. According to our new doctor (Celiac specialist), you can be gluten intolerant and have all the symptoms of celiac disease with all tests, including the biopsy, negative.

If she feels better gluten free, keep her gluten free. After a while you can do a "challenge" to see if her symptoms come back. Do it without her knowing so you will know it is caused by the gluten.

I would try to get a doctor on board so at least you can get a "doctor's note" when needed (school, summer camp, college dorm, etc.) Some schools won't comply with a parent's wishes unless there is a doctor's note.

Cara