<<Disclaimer: Verify this information before applying it to your situation.>> Refractory celiac by definition is failure to thrive on a gluten free diet following accurate diagnosis of celiac: more specifically, I guess, the characteristic celiac lesion remains despite no gluten in the diet. A recent question about this condition got one public answer. Including this father of a celiac child, however, I already know of others with successfully treated conditions on the list. >From the medical literature I think this condition is more prevalent than that and deserves to be known of -- getting that diagnosis when the doctor may be sure that the patient is instead eating gluten may be hard. Even harder is the choice of treatment - each having possible side effects. My brother, diagnosed CD 10 years ago, may have it refractory now -- flat villi deep into the intestine and more, but anti-body free and hence apparently(?) gluten free.. So for his sake and all of us (I'll post only the total of refractory celiacs on the list), would any refractory celiacs post me privately about your experience? If you'd like to later privately post with others who've been through the same mill, let me know: I can make up a mailing list for you. Kemp Randolph Long Island