I will be having ds tested in a couple of weeks for gluten and casein sensitivity. I will definitely ask about celiac now! I am taking him to an allergist. Can they test for that? Also, ds has been CF for about 2 weeks now (have seen mild improvement--not sure what to attribute it to). Does he need to be consuming casein for the test to be conclusive? AND am I even taking him to the right place??? (an allergist?) Can they test for 'neurological' sensitivity or do I need to see someone else? Sorry to sound so ignorant, but his pediatrician has been no help whatsover and I feel pretty alone. I just happened to be reading about all the success with the diet lately and decided, well I am just going to have him tested for both and if they come back negative, then we won't have to worry about it. I feel like that's so naive of me...

When I had my son on the diet, his doctor looked at me like I was stupid. I saw a little bit of improvement in his attention and focus, but not enough to keep him on it. What I do instead, is just monitor the amout he gets. He loves milk and pasta, french fries. He would eat and drink non stop if I let him.

Good luck with your son. Great to hear about the improvements he has made.

Certainly for celiac testing, you need to have been on gluten for at least 6 weeks prior to the endoscopy. Some docs will tell you 2 weeks, but that's just not long enough to make the expensive, invasive test w/biopsy sampling worthwhile.

Gastroenterologists test for celiac disease. Allergists can test for immediate (IgE) type allergy to wheat, barley, rye, dairy ... and other foods as well. They will usually recommend an additional "elimination followed by challenge" for any food item that tests positive. The typical allergy test is a skin-scratch test done in the office, and isn't painful although if your child has sensory issues, let the office staff know & ask for testing to be done on the back, where there are fewer nerve endings. The scratches are very light ... my kids actually giggle when they get it done ... and wiggle, which can be a problem.

IME some kids on the spectrum who 'test negative' for celiac & food allergy still benefit from a trial of GFCF diet. The concept of 'leaky gut,' previously thought to be the domain of wacko alternative medicine, has found validation in scientific research in the last few years.

A common denominator among celiac, multiple sclerosis, type 1 diabetes, and a few other diseases, it overexpression in the body of zonulin, a messenger for 'gating' in the gut. When zonulin is overexpressed, microscopic gates open in the intestinal mucosa, allowing undigested proteins to enter the bloodstream, which sets the stage for autoimmune responses. NIH funded studies are currently under way for zonulin inhibitors ... some of this may in future change the way we diagnose & treat many diseases. The pathway is being forged here to recognize other causes of leaky gut (like yeast mycellia/parasitic infiltration) as a contributor to many, many diseases.

Unfortunately, the vast majority of docs will give you a blank look, or start chuckling if you talk about 'leaky gut.' In past, it has taken decades for research findings to make their way into mainstream clinical practice. With increased speed of technical communication, and 'open publication' allowing patients access to research findings, the upswing in patient experts and patient advocacy, it will be interesting to see how things play out.

Best wishes.