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Not Sure What To Do

hpymomof3

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hpymomof3 Rookie
hpymomof3
Posted

My daughter was diagnosed with gluten intolerance a few months ago. She has had severe insomnia for a year and a half. The doctor thought that there was a good possibility that she was gluten intolerant. We did testing through Enterolab and she came back positive but her score was only an 11. Prior blood tests came back negative. The gene workup also showed that she has genes for gluten intolerance and for Celiac disease. Other than the insomnia she has no other symptoms. Her stomach is fine and she has never had trouble eating certain foods. She has been gluten free for 4 months and she hasn't had any improvement.

We have seen a few other specialists to try to help her with the insomnia. Everyone we have talked to says that you need the biopsy to confirm gluten intolerance. On the other hand, one of our doctors feels that the stool test is more accurate. My daughter is miserable being on a gluten-free diet. She also seems a bit malnourished now that she has been gluten free since she is a picky eater and it is difficult to find foods that she likes to eat that are gluten-free. She was never malnourished before but now that she is gluten-free the tests show that she is.

Is it true that she needs to be back on gluten for the biopsy test to be accurate? I hate to put her back on gluten if it will set her back more but it has been 4 months and we haven't had any improvement anyway. On the other hand, it seems senseless for her to be off gluten if it isn't helping.

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