Please Help With Diagnosis Of 9 Year Old Daughter

[Meluvdeals]

I would LOVE any advice from any of you all!

I have a 9 year old daughter who has had what she called pain in her rectal area for most of her life! She's had sigmoidoscopy when she was 5, CT scans and MRI's - they found nothing. Was finally diagnosed with major constipation issues. The pain has been ongoing over the last 4 years but has recently gotten out of control! Now that she is alittle older - she tells me her bottom itches. I've done some research online and read about gluten allergy so I took her back to the dr. They did blood test - here are the results:

Tissue Transglutaminase AB, IGA - 0.0 - NEGATIVE

Gliadin Peptide AB, IGG - 14 (range is >10 is Positive)

Gliadin Peptide AB, IGA - .3 (range is <7 negative)

I have scheduled her with the same pediatric Gastro dr for next week but I just can't seem to research this one positive test to find out if she is actually Gluten allergic - if this is Celiac - if she needs the biopsy, etc.

ANY ADVICE??? Thank you!!

[luvthelake21]

Just wanted to say welcome to the forum, do not know the answer to your question, but you found the right place to ask questions. Someone should help you.

[Amyleigh0007]

My son's bottom itched all the time! When I say bottom I mean his anal area. Poor kid, it drove him crazy. When we eliminated gluten and went on the rotation diet for the food allergies the itching went away. He had huge constipation problems too. He would have a BM once a week. Your daughter may suffer from food allergies and that may cause the itching, like in my son's case. It wouldn't hurt to have your doctor or allergist run food allergy testing.

[momxyz]

hi, when my daughter was eleven, she had similar blood tests as your daughter, in that the only test that was elevated was the IgG anti-gliadin. Although this is a sensitive indicator for Celiac disease, it is not considered by the medical community to be a very specific indicator, and so, it may be that a diganosis of Celiac's will not be ascribed unless there is another positive finding.

in my daughter's case, she was referred to a pediatric GI (this was 6 1/2 years ago.) Upper Gi, lower gi series along with biopsies, were performed. All negative, so we were told that she didn't have to avoid wheat. Although, she was followed by him for a few years afterwards and treated medically, as it was recognized that something was going on.

My daughter's presenting symptoms were different than yours - she did not have the itch tho she had frequent belly aches, occasions of frequent and soft stools. Fast forward 6 years, she began experiencing other difficulties that I've posted previously. I began connecting the dots and began to consider gluten intolerance as the base of her problems, even if she does not have frank Celiac's disease. She's been gluten free since July and has experienced some relief - constipation gone, insomnia gone, depression lightened...

I wish we had figured this out five years ago. Hindsight is 20 -20.

Ok, if I were in your shoes:

1. I would ask about having her TOTAL IGA tested. Some individuals with Celiacs do not produce IgA antibodies effectively, therefore, the low tissue transglutaminase IGA (considered the more specific test) may represent a falsely negative value, if your daughters total IGA is also low.

2. If they suggest proceeding with the endoscopy and biopsy I would go through with it. I would pursue a diagnosis. If they find positive findings, you will have an answer and a clear course of action, wholly supported by your providers.

3. If the testing they offer/provide is inconclusive, I would recommend a trial of a gluten free diet anyways. (But don't embark on this until the testing process is complete - removing gluten prior to testing can cause false negative resutls). If her tests are negative, they could be falsely negative, which if you read enough on this board, you will find is all too common. Or, she could have Non celiac gluten intolerance. Non-celiac gluten intolerance, although probably not very well recognized 6 1/2 years ago, is something that is starting to gain some recognition - albeit slowly - in the medical community. If she experiences relief from the diet, then you will know how to help her, and you will have done no harm...

Believe me, there are so many times these past few months that I wish I had found this board and the information about all this stuff 5 years ago. We might be in a better place today.