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worriedmama

Member Since 11 Sep 2010
Offline Last Active Jun 24 2012 12:07 PM
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Topics I've Started

Intro And Questions About Testing Options

11 September 2010 - 10:07 AM

I am trying to get to the bottom of my 10 year old daughter's ongoing stomach problems. We are trying her on a gluten free diet and every search that I do to get information on specific products or information keeps coming back here so obviously this is the best place to get advice!

History: Family: I have been dx with IBS and lactose intol. Dad has acid reflux. Paternal Gma also has IBS.

As an infant she was horribly constipated. Switched her to low iron formula (against peds advice ) and no more constipation and no iron problems either.

She has had intermittent diarrhea (occasionally constipation)for the last few years with increasing frequency. Self diagnosed her with lactose intolerance a few years ago and using Lactaid has helped some. In the last 6 months it has become more constant. Numerous trips to the Ped over the last few years have resulted in guesses of "abdominal migraine" and "IBS". Missed 7-8 days of school last year, all due to stomach problems. She has had allergy testing for environmental allergies and all were negative. No food allergy testing.

I independently set up an appointment with the head of Peds GI at our Children's Hospital the end of last year. Was very unhappy with the visit. With only listening to symptoms said that it didn't sound like anything to worry about, no big deal and gave some meds for the stomach cramping. I had to insist on having at least some blood work done. They did blood and urine test and a few weeks later I got an email saying all was normal. I asked for a copy of the results.

Platelet Count and Mono% were high so I emailed back and asked why and was just told no big deal.
IgA was 52.2 mg/dl
Tss Transg IgA <3 units/ml

Diarrhea and cramping have been more and more frequent all summer and have been affecting her quality of life-- had to skip several activities and was sick most of our family vacation a week ago. Finally she had diarrhea so bad the first day of school she had to stay home. She is not an anxious/nervous child and was very excited about her first day and very disappointed to have to stay home, so I don't think it was "nerves".

I got her an appt with the ped for that morning and went in demanding answers. I was nice but very assertive. Said that I am tired of being told it is no big deal and I am tired of having to see her so miserable and I want to know what is going on. Well, still got told "IBS" because the blood work ruled out everything else, including celiac. Dr suggested we keep a food diary for a few weeks, and then start eliminating things from her diet and record all of that. Well, she was late to school the next day because of the diarrhea, and so miserable I decided I wasn't going to wait a few weeks to start elimination. We tried dairy free last fall and it didn't seem to make any difference. So I decided to start with gluten free. I know that it is possible to have a false neg test.

I have spent the last 3 days glued to my computer researching everything I can find and my head is swimming. Celiac, gluten intolerance, wheat allergy/intolerance. And a whole range of tests I have read about here that I am struggling to understand.

So I guess in short:

Symptoms--used to be intermittent but becoming more frequent: Diarrhea, stomach cramping, occasional stomach burning, occasional nausea but vomiting is rare, headache, rarely constipation, black circles under eyes. She cant always distinguish how she is feeling and just says her stomach hurts. Behavior and attitude are all very positive and no other symptoms.

Does this sound like it could be gluten related?

Are there other tests that would be more accurate that I should try to have done (other than a biopsy)? Can someone list and explain all the different test options and explain in plain English? I keep seeing all these different abbreviations and I am so confused.

Any help and advice would be appreciated. I just want my baby to feel better!

ETA: Forgot to say that she does get occasional nasal allergy symptoms but allergy testing was negative, and she and I also get extremely motion sick.