<<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