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Kelly --
     I am responding to your request for advice regarding your
non-diagnosis.  I was finally diagnosed as having celiac disease by a
doctor (gastroenterologist) who trained in Grenada and has a
subspecialty in tropical medicine.  My diagnosis was based on blood
testing which indicated a high level of antibodies and dramatic
success on the GF diet.  I did not have a biopsy due to my own dread
of further testing at that point in time.  That was in the spring of
1989.  I am posting this to the list at large because I had recieved
many helpful suggestions and opinions when I recently questioned the
wisdom of my never having been biopsied.  I have spoken with my doctor
about this list (he was REALLY interested!!!) and the further
information I have since gleaned about CD.  His opinion is that the
blood testing and success on the diet are enough of a confirmed
diagnosis for him and that a biopsy (which he feels would really be
more like 3 biopsies at this point -- 1 now, 1 after a gluten
challenge and another after returning to a GF diet) may or may not
result in a definite diagnosis.  Apparently, you can have CD without
definitive biopsy results.  Anyway, we discussed my situation
and I am satisfied with my diagnosis without any further testing.  The
point is that I am able to lead a healthy life on the GF diet and I
wasn't on a regular one.  I had enough tests done prior to that point
to rule out various other GI problems so I am not concerned about any
other conditions that could become serious health hazards if not
treated, therefore, if the GF diet works for me (and it does) why on
earth should I go off of it?  I think that you need to satisfy
yourself regarding the status of your own health and keep looking for
a doctor who is knowledgeable about CD, wheat allergies, etc.  By the
way, if you are allergic to wheat, a GF diet will work but it is much
more restrictive than just avoiding wheat and its by-products.  I
think you ought to satisfy yourself on whether or not you have a wheat
and/or other food allergies before committing to a GF diet -- ditto
for your son.  You realize, of course, that this is just a
layperson's personal opinion and not medical advice.  Good luck and
happy holidays!
Jane (in VA)
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