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 Dear List Members,
The following is an excerpt of a note we sent to Sam Adams concerning our
daughter's condition.  We are concerned that she is not responding to the
diet.  Scott suggested we forward this to Dr. Joseph Murray which we have and
we're awaiting a response.   Any similarities or advice would be welcome.
 THANKS IN ADVANCE.
 
Our daughter was diagnosed with celiac January 1996; we had a confirmed
endoscopy in March '96, have maintained a strict GF diet and due to lack of
weight gain, had her retested in July (endoscopy) which came back negative
(stating her villa has been fully restored).  Our issue is that she still has
not been gaining weight.  When diagnosed at 4 years old, she weighed 26
pounds and now at 5 years, only 28 pounds although she has grown one-two plus
inches.  Charnele does not (and has never) shown the typical symptoms of
celiac and our only clue was failure to thrive.  Because of this, we have
been pretty extreme in maintaining a GF diet as she does not show the outward
symptoms of ingesting gluten.  When in doubt - we don't!  Our daughter's
doctor has mentioned that in 5% of celiac patients, they do not react to the
GF diet and has stated that a 'kick-start' using sterroids is required.  We
believe he stated something about 'refractory sprue'?!?!?  We are looking for
additional information with respect to this lack of weight gain and are
hesitant about using sterroids, even for a short time.  Any information,
thoughts, and/or ideas would be helpful.
 
                       Thanks in advance for your response and help,
                                  Ivy and Steve Bourque