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Hi,
About six weeks ago I put my youngest daughter, Krystal, on a wheat-free diet to see if cutting out wheat would clear up her runny nose since attempts to do allergy tests failed due to her lack of co-operation. To my surprise it improved her behaviour instead. She is seven, has Down Syndrome and is rather "hyperactive" at times and difficult to control because she ignores the word "no". On a wheat free diet she is calmer and more co-operative (not perfect) and her speech has improved. These observations are backed up by her teacher, teacher-aide, speech therapist and physiotherapist. When she has wheat, about half an hour after eating it she is on the go constantly for a while and her behaviour is not as good the next day. Routine blood tests in 1999 and 2001 were negative for celiac. I also have a 12 yr old child with DS who is a biopsy diagnosed celiac (not biologically related to her sister - both are adopted), so adjusting to a wheat-free diet was fairly easy.

I would like Krystal to have a biopsy for celiac, but don't want to take her off  wheat. Currently her main sources of gluten are rye bread and porridge plus "contamination", ie I'm not usually using separate spreads to what the non-celiac members use (to reduce the risk of contamination from rye bread crumbs for the child with celiac). I don't want to go totally gf yet without an official diagnosis because if she does have celiac then she could also get a subsidy for the gf breadmix, plus the incentive to stay gf would be greater if I've got offical proof. Also my daughters will always need the co-operation of other people to ensure they eat gf.

My questions are: 
Would Krystal still be getting enough gluten, from rye and oats, to produce a positive biopsy - assuming she has celiac?
Does anyone else have experience with hyperactivity as the main symptom and / or persuading a doctor to do a biopsy even if the blood tests are negative?

Regards,
Stella
New Zealand

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