<<Disclaimer: Verify this information before applying it to your situation.>>
 
This is a summary of the responses I received to a request for information
on celiacs whose condition had turned "refractory".
 
There were 7 responding, 2 of those for family members. So incidence rate
of about 1 in 200 celiacs, likely a lower bound. All, except the child
perhaps, were within 2 years of the date when problems first appeared.
DIagnosis of condition was still uncertain for 3. 2 had completely
recovered. Temporary intravenous feeding (total parenteral feeding) and/or
steroids were treatments used to allow the intestines to recover from the
immune (?) attack causing the condition.  Side effects of the steroid were
a problem for some. One reported their doctor looked thoroughly for
lymphoma (and found none) because "refractory" was considered related to
that.
 
Antibody testing hadn't been done for most during this phase, at least yet.
All were certain they were gluten free, though at least 2 in retrospect had
celiac unknowingly for years.
 
If these 7 wish to correspond off-list with each other, please respond
off-list to me: I'll send each a message with the e-mail addresses.
 
                                       Kemp Randolph
                                       Long Island