bizi,

So sorry to hear about your friends daughter. Did the doctor do an EGD which is a scope down the throat and into the small intestine? Did he take 6-8 biopsies of the small intestine? Did he do bloodwork including Gliadin antibodies IgA and IgG, tTG Iga, Total IgA, EMA. I would think an Iron panel including ferritin, saturation, total iron, TIBC would also be important. Low normal ferritin is a tell tale sign something is not 100%. Have your friend request all copies of blood work and tests including biopsy results.

Do not take a doctors word that everything is negative. I was sent a letter by my family physician that stated I did not test positive for Celiac Disease. One month later I picked up my test results and found I did have a positive Gliadin IgA and she did not do the tTG or EMA. She should never have said I didn't have Celiac with that type of testing. Luckily I had been reading and was referred to a Gastroenterologist who did the biopsy which was positive along with the correct blood tests which were also positive.

I never really had problems with wheat that I knew of. I am sure I had Celiac since I was 18 months old when I was in the hospital and had diarrhea for 2 weeks while also having cleft palate surgery. I went in a fat baby and came home a skinny baby and stayed that way for life. My diarrhea stopped but I think I was always a little brain fog, very shy, would get terrible stomach aches, lots of ear infections, strep throat, knee pain started at puberty....these are all signs of Celiac Disease.

I would be very concerned if any of the celiac panel tests are high normal. You could also do the DNA testing to see if she has the gene.

Read the gluten file link, there is a ton of great info all in one spot.

Keep us posted on test results.

Another food item to test might be malt/barley and rye.

Llonghair