<<Disclaimer: Verify this information before applying it to your situation.>> Hello to all. We've had a few developments here that I thought I'd share with the list at large. Warning: It's a long message! I mentioned a few weeks ago that our 5-year-old daughter (who has been on the GF diet for more than a year now) had a severe reaction after doing really well in our new home in California. The reaction continued for a very long time, and her diarrhea worsened until basically undigested food seemed to be coming straight out of her, for about a week. Over several days it gradually became more normal, though definitely not what we would want to see. We went to a highly recommended pediatric GI at Stanford children's hospital. He ordered tons of tests and then made a follow-up appointment three weeks later. I came away from that appointment very upset and have lots of questions. Please bear with me if I don't present everything clearly. 1) What is a normal stool? She usually has two BMs daily. They are a somewhat orange color. The amount is fairly large, and the consistency is sandy and feathery. They are just barely formed when they come out. Upon the slightest motion--and always upon flushing--they instantly disintegrate into a sandy cloud. We often have to flush a few times to clear it all away. This has been going on for several weeks now. This doctor was not concerned about this. He made me feel silly for being concerned. He said that as long as there was any form at all to the BM, as long as it was not liquid, it was fine. Does this sound right to you? 2) Could a wheat allergy make a child stop gaining weight and growing? Could an allergy cause calcium malabsorption resulting in dental enamel defects? 3) Can you cause a severe reaction to gluten by being on a GF diet, even if you do not have celiac disease? In other words, if a person without celiac disease went on a GF diet for a few months, then ate, say, regular wheat-laden cookies, would that cause diarrhea or other symptoms? 4) What is the medical significance of "very long eyelashes"? Why would this be noted on a chart? 5) How can we be confident of the right diagnosis? Our daughter was considered to be an atypical presentation. She was three when she was diagnosed, and she was not so ill that she needed to be hospitalized. The only bloodwork ordered at the time were antigliadin and antireticulin tests. The only abnormal result was the antigliadin IgG. Her biopsy was inconclusive--abnormal, described as showing inflammation, with the bulb of the duodenum being "smooth," but not awfully abnormal. On the path report is a handwritten note saying simply "looks to me to be consistent with celiac disease." The biopsy was complicated by the fact that our regular pediatrician told us to start an allergy elimination diet before we even saw a specialist; we didn't know that she shouldn't have stopped eating wheat before the biopsy, which she had a week after going mostly GF. The final diagnosis was based on a combination of the bloodwork, the biopsy, our family history, our daughter's medical history, and her dramatic response to the GF diet. (For example, after not growing or gaining for two years, she gained three pounds in three weeks.) Now this doctor seems to be scornful of the way everything was handled when she was diagnosed and appears to question the diagnosis. He says that any number of medical problems can clear up on a GF diet and that our daughter's response to the diet is not a significant factor. He says that a week of being GF would not have affected the biopsy, that it ought to have been more clearcut. Basically, he left us feeling confused, treated us like bumbling overprotective parents who had been dealing with bumbling country docs, and basically breezed away after ordering us to get him the original biopsy slides and set up another appointment in three months. I don't mean to make this guy sound like a jerk. He's certainly arrogant, but he is supposed to really know his stuff, and he has an excellent reputation among his own colleagues. What are we to think about this? Although we were really upset about the original diagnosis, we were so relieved to have found our daughter's problem and have such a relatively simple way of helping her be herself again. No daily needles, no fatal reactions, no drugs--just a GF diet. (Not that that's easy!) Now we've been thrown all out of balance again. We can see beyond a shadow of a doubt that the GF diet has completely changed our daughter's health, personality, and relationships. But what if we're wrong? What if there's some other explanation? And are we going to have to go through this all over again every time we see a new doctor? If there were more research out there it would help. In the meantime, this list is a lifesaver for us. Thank you to anyone who made it through all of this message. I'll summarize responses later for reposting.