Would You Persue A Biopsy?

[bjshad]

Hi - I'm new to this forum and have a question for all of you regarding a biopsy test for my 3 year old daughter. She has sensory processing dysfunction with some autism spectrum characteristics. We have had blood tests done that came back with elevated IgA and IgG levels, although I don't know if they were specifically testing for celiac or not. We also just got back the stool test from Enterolabs which came back positive for IgA antigiladin (sp?) antibodies, and the report said she has active gluten sensitivity.

She has a lot of the signs - slow growth, reflux as a baby, food allergies to milk, soy and eggs, very reactive asthma, hypotonia, global developmental delays - and a positive result on the gluten-free diet in behavior, asthma, allergic shiners go away when she's off gluten, her speech has improved tremendously since restricing gluten. When she eats gluten, she starts wheezing, she gets allergy-eyes, she starts having more sensory/autistic symptoms, her behavior starts getting bad and she turns into a raving lunatic, tantrums, etc. So whether or not she has full-blown celiac disease, I don't know, but based on the results from the gluten free diet, I would say she should not eat gluten.

We've had 2 naturopaths tell us (including a DAN naturopath) that she needs to be off gluten. Her pediatritian told us that she needs to be off wheat due to her asthma, but that being off gluten would be even better. I also have symptoms of celiac myself - when I eat gluten, I get migranes and I get symptoms of fibromyalgia, when I don't eat gluten, I'm fine. I also get brain fog from gluten. I've never been tested and as far as I know, no one in my family has either, although my sister has IBS, my brother has type I diabetes, and I have an aunt with lupus. I come from Northern European ancestry and my husband is Italian. There are autoimmune disorders on my side of the family and autism/ADHD on my husband's side as well as digestive issues.

I am comfortable taking her off gluten even without a diagnosis. But, should I seek one out? Do you think we have enough "proof", including the positive stool test and a blood test run by a prestigious children's hospital with elevated IgA and IgG levels (even if they weren't specifically testing for gluten)?

Is there a reason to test, considering the situation? Gluten free as a treatment for SPD/autism is enough justification in my mind, but is there something more I should think about? I don't want to put her back on gluten just to have her body damaged for a positive biopsy - gluten affects her brain and her nervous system, so I don't want to do any damage just for the sake of another positive test.

Any thoughts? Advice? Am I missing something? I just want to be sure I'm doing the right thing.

Thanks-

Beth

[aikiducky]

I'd say if she's already gluten free to just keep it that way. If she was still eating gluten every day I would do the biopsy while I still had the chance but it sounds like she's been gluten free enough that the results might easily be a false negative, and doing a gluten challenge doesn't sound like a good idea if she has a strong reaction to it, especially if she also has allergy type symptoms. On top of that even your doctor agrees...

Pauliina