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Hello,

I asked for advice regarding whether to remain on a GF diet prior to biopsy
(more than three months).  Responses varied-  some said feeling better is
enough confirmation so forget the biopsy, or blood tests are enough.  Some
said only the biopsy was good enough for them.  Some suggested that it could
be difficult to get compliance/assistance in hospitals, insurance coverage,
etc., without definitive diagnosis, but one person suggested that lack of
definitive diagnosis might help in certain insurance situations (e.g., if
you plan to switch insurance plans and they don't cover pre-existing
conditions for several months).  Healing time seems to vary a lot-- one
symptomatic person with 10 yrs damage tested negative on biopsy and blood
tests after only 5 days gluten-free.  Others thought, based on recentl
research and medical advice, that it would probably take at least 3 months
to heal even partially if symptomatic, but depends on severity of damage.
Gluten challenges tended to range from 3 weeks to several months.

On a happier note, I was successful in getting some attention from doctors.
When I first tried to communicate with them, I was firmly routed to nurses
who were sympathetic and willing to help, but trying to pass
information/questions through them to the doctor is nearly impossible since
most nurses don't seem to know the subject and the questions are technical
and complex.  A lot gets lost in the "translation."  I tried a different
approach this time.  Typed a formal, polite letter outlining informed
questions and the basis for concerns; cited the Celiac Disease Foundation
website, CSA/USA online, and some medical journal articles; and faxed the
letters to both GI specialist and family doctor, asking them to coordinate
their efforts.  Then contacted nurses who tried to assist me previously and
asked that they help me in getting the doctors' attention by making sure
they saw the faxes. They have more time to listen and have pull with the
doctor.  Got prompt calls back from both doctors or their offices today and
immediate action.  Apparently they are banking that the damage is still
there after only a month gluten-free, with one accidental slip last week and
purposeful gluten ingestion for a few days before tests.  I'm getting tests
next week instead of next year.  Moral of the story-- doctors might be busy
rather than uncaring, and may pay attention if you ask informed questions in
writing, with the help of nurses and this group :-)  Thanks to the many
people who offered advice and sympathy.  Hope this helps someone else.

Erin
State College, PA

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