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

A few weeks ago I posted regarding my difficulty getting a diagnosis,
and promised to summarize to the list.  A verbatim summary would be much
too long to post.  However, I will briefly describe the gist of the
suggestions.

 -Continue to eat gf since it makes me feel better, whether or not I
ever get a definitive diagnosis.  I got lots of support from people in
the same situation as me, not being able to get positively diagnosed.

 -Several people reccommended contacting Dr. Joe Murray at the
University of Iowa to get a reinterpretation of my lab results.  Another
doctor suggested was Martin Kagnoff, phone # available on Don Wiss's
webpage.

 -I was referred to several articles discussing the accuracy of
serological tests, and the relationship of the gf diet to the test
results.

 -Alternative methods of diagnosis including rectal gluten challenge and
saliva tests were also suggested.

 -One person reported having an abnormal Anti-Nuclear Antibody test, and
no known autoimmune diseases besides CD.  (I had asked about this as I
also had an abnormal ANA test).

If you want more details on any of this, email me privately
([log in to unmask]).  Thanks everyone for all the information, and
support--I appreciate it very much.

On a related note, I'm really enjoying the discussion about the
difficulties of not having a definitive diagnosis.  Various people
mentioned:  the respect you get from having that diagnosis. . . having a
baseline. . .  regretting not having a biopsy before going gf. . . and
"having the tiniest question in the back of my head."  And I relate to
all of it!  (I have to admit I keep thinking, "What if I'm just allergic
or 'sensitive', and maybe I don't need to be so strict about things like
vinegar, etc, as they don't seem to bother me?")   And then of course
there's the whole thing about the UK Coeliac Society won't even talk to
you if you don't have that diagnosis - even researchers!!!

Anyway, it's very nice to have these problems acknowledged and know that
there's a lot of us in the same boat.  It's renewed my will to pursue a
diagnosis more agressively, and also, to go by how I feel whether or not
I ever get that "blessing" from a doctor.  Thanks again.

Jenn
[log in to unmask]
Seattle, WA USA