Thank you everyone for all the replies! We are going to go as gluten free in our house as possible...but i think it will take a while to get the hang of it.

RathyKay, chiari doesn't typically cause autistic type symptoms. It does cause neurological problems that I guess could be present in autistic kids. After her surgery, DD had a big jump in her speech abilities. Chiari affects the flow of spinal fluid, so it causes pain and all sorts of goofy symptoms. Like gluten intolerance, the symptoms vary hugely from person to person. After her surgery, all her pain was gone and she seemed to be neurologically a little bit improved...better balance and speech and stuff like that. The main deal with this child is that her brain is just shaped wrong. Her vision is poor because her optic nerves never developed. The normal brain is sort of egg shaped, but hers is rather rectangular.

So I do have one more question that I'm thinking about. Her antibody test (I don't know which one it was) came back positive. According to my reading that indicates a 95% chance for celiac. We are waiting for the results of her gene test. Do those odds mean that it is possible that she has the anti-gluten (or whatever) antibodies, but does not have celiac? Has anyone here tested + for the antibodies but not had the gene? Even if she doesn't have celiac I'm taking her off gluten.

I am finding this forum so helpful as we prepare to make this change!