<<Disclaimer: Verify this information before applying it to your situation.>>

Kelly --

Since you asked for advice, here's mine -- Find different doctors.  Your
physicians are clearly out of touch with CD.  You had great success with a trial
wheat free diet.  While it may not contribute to a definitive diagnosis, it
means much more than the biopsy in terms of what you should eat.

I had intermittent GI symptoms for 25 years and was over weight most of my life
-- not your classic CD symptoms.  My first small bowel biopsy (from a GI workup
for chronic iron deficiency anemia) was not definitive for CD.  I'm not sure
what the blood studies showed (or which ones were performed).  My GI advised a
GF diet for 6 months and a second biopsy.  Repeat biopsy showed a very
significant improvement.  Additionally, all symptoms went away with GF diet and
my blood work showed normal levels of iron, calcium and other minerals absored
in the jejunum.

While my doctor was able to look beyond the 1st biopsy to make a diagnosis, he
has provided no support for the GF living.  The sum total of it was a page he
photocopied from a GI Diseases text and the snide comment that I could "even get
a gluten free cookbook".  I am a nurse and well trained in nutrition.  None
theless, I never would have been able to adapt without the GF cookbooks I've
collected over the past few years.  I'm now looking for a doctor who can offer a
little more insight and help as my family and I live with my CD.

Bottom line, some docs can diagnose, some can provide support, some can do both
and some can't do anything.  Get out the Yellow Pages and call the GIs in your
area.  Ask them how often they have diagnosed CD, how they made the diagnosis
and how they work with their CD patients.  Ask the Celiac society in your area
for referrals.  If they won't make referrals, find out who their medical advisor
is and call him/her.  I recognize this may not be easy, but you and your son
should be given a chance for some care by someone who knows enough about CD to
recognize the statistical relationship between untreated CD and lymphoma.