I have a 16 year old daughter with Rett Syndrome, she is non verbal and only communicates occasionally with her eyes, we have to ask the right question for her to look at us and we're assuming it means yes.
She has been having alot of trouble for almost a year, she had her first upper endoscopy in Jan. it showed she is lactose intolerant and celiac negative at the time. Since then we've cut out all dairy and she is still having troubles with abdominal pain. She had another scope, colonoscopy and pill camera in June, that showed some erosion in her small intestine. She has had elevated sed rates since, usually around the mid to upper 20's. Her GI doc was thinking more along the lines of crohn's and treated her with entecort over the summer which seemed to give her some relief for about
2 months. In Oct. her pain came back so he put her back on entecort and last week we had an appt with him, told him it isn't seeming to be working this time. Her sed rate was 27 and he's waiting on some stool tests for bacteria, parasite type stuff, liver testing in her blood. But, we never discussed celiac's, I had put it out of my mind since Jan. because her test was negative. The end of last week I had had enough friends ask me about
gluten that I figured I'd better research it. Well, I'm reading that the tests aren't always correct so now I'm really wondering, especially since she has problems with her small intestine. That is about
the only evidence we've gotten so far, other than extreme pain usually later in the day. I've also checked the ingredients of most of the food she eats and she's getting a ton of gluten! Sat. morning I started her gluten free diet and I also sent for the stool test from enterolab. I hate to put her back on gluten for a test if we can do it being gluten free. She had better days Sat. and Sun without any gluten. Some pain later in the afternoon but nothing like before. I am wondering (sorry for being so long winded here), how long until you've all seen results from a gluten free diet. I appreciate all of your insight to this since my daughter can't tell me what she is feeling, I have to guess and assume.