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I'd like to thank the 20 or so people who replied to my mail.  I know I was
whinging a bit, but it did me so much good to give vent to my frustration at
having to wait so long for help from the medical profession.

Most of the replies were very personal and moving, offering me their
personal experience and heartfelt support.  Their messages were very
uplifting for me and I am so grateful.

In summary:   Around 14 of the replies described a very different weight
history from the stereotypical medical view of the 'wasted and frail' celiac
patient.  4 had experienced considerable weight gain before diagnosis and
had lost weight when on a GF diet.  The others had maintained a normal (for
them) weight prior to diagnosis, or gained less than a stone during their
illness. 16 reported long waits for diagnosis, but stayed on gluten rich
diets for the purposes of the tests - they strongly advised me to stay on
gluten.  3 asked me why I didn't just forget the tests and go GF.  (This is
something I cannot afford to do, as if you have a low income in England, you
can claim free GF prescriptions - GF foods cost a fortune here).  Also I
feel I need the recognition of a clear diagnosis and further investigation
of lymph nodes and bones etc.  6 of the replies commented on having
'atypical symptoms', that is, they or their families had no diarrhea prior
to diagnosis.  Several mentioned having a single vague symptom such as
fatigue or nausea, but no other signs.  About half of the messages commented
on the lack of knowledge among their diagnosing doctors and on negative
initial tests which were later followed up with positive biopsies.

All of the replies were really supportive and encouraging.  Since I have
joined this list, I have not felt so alone.

Thanks
Sheila (Stockport, England)