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

Erin wrote:

>Sometime ago I posted a message entitled "Confused after visit to
>GI".  {snip}...  AARGGH!!!  Please tell me I'm not
>alone in my frustration....

You're not alone, Erin!  I'm so glad I joined this list  (just joined
this week), if for no other reason than to be able to read your message.
 I didn't get to see your original message, but your situation sounds
very similar to mine.

I was diagnosed  (symptomatically, no biopsy)  with CD when I was about
1 year old  (I'm 28 now).  Grains were reintroduced at 3 or 4 years of
age.  About a year ago, my mom's friend dragged me to the annual meeting
of the Gluten Intolerance Group.  I walked in thinking, "I can't be
celiac, I'm overweight!"  But I walked out 99% sure that I am celiac.
Some of the more conclusive evidence includes:  symptoms which disappear
when gf, my mom has Lupus, I have slight but longstanding B12 and
ferritin deficiencies, and generally poor health since I had mono at 16.
. . . and the list goes on and on.  All these symptoms and problems I
previously thought were unrelated suddenly fit together like the pieces
of a big puzzle.

It took two months to get in to see a GI doctor, during which time I ate
gf  (I know, I know, but I felt so much better!)  First he gave me a
blood test (don't know which one) which came back negative.  I
specifically asked him if the test would be affected by a gf diet and he
said no, it tested genetic potential.  But I read a webpage last week
that said the opposite.  Can anyone enlighten me on this  (maybe point
me in the direction of some reference material?)

He told me to challenge gluten for a week before my biopsy, but I did it
for three weeks to be on the safe side.  He only took duodenal biopsies.
 Looking at the photos, he said he saw a little inflammation.  But the
test came back negative.  (I believe my damage may be patchy and/or very
subtle, and it went to my HMO lab, so I'm not that surprised.)

I then spoke with the GI on the phone.  He would not even *consider* the
fact that the test results could be innacurate.  He didn't care that I'd
seen a lecture by a prominent specialist in CD (Dr. Driscoll of the
University of Washington)  on the potential for innacurate biopsy
results--he wouldn't listen. Since I'm with an HMO, if I want a second
opinion by an outside doctor, I have to pay for it all myself.  I have
been so strapped that I can't, but I would like to try and see Dr.
Driscoll at some point when I can afford it.  Meanwhile I'm eating gf
but it's hard to live this way when you don't know for sure.

Sorry to go on so long!  If there's ANYTHING anybody knows that might be
helpful to me, or if you have any diagnostic suggestions, please send me
private email.  I'll summarize back to the list.  Also, specifically,
does anyone know if an abnormal Anti-Nuclear Antibody test can ever be
indicative of CD?  It can indicate Lupus - and other diseases - so I was
wondering if CD is one of them.  Thanks, everyone.

Jenn
[log in to unmask]