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

Many thanks to all who wrote - you have been an enormous help to me and the
information is valuable and reassuring.

6 people wrote that their symptoms had changed over time, and confirmed my
experience and what I have been reading; that celiac symptoms can range from
obesity to underweight, diarrhea to constipation, loss of appetite to
increased hunger.  One person said celiac is often described as "The Great
Masquerader" in his "letter to newbies."

Re celiac testing:

1 was diagnosed on positive serology alone
1 had different biopsy reading on second opinion
3 had positive serology and negative biopsy
2 had negative serology and biopsy (or equivocal), but improved on GF diet
1 had positive biopsy (before antibody tests were developed)

Many offered information that their doctors had given them:

It is recommended that 12-20 areas be biopsied; most doctors only do 3.
It is important to have the right lab.

A stool antibody test has been developed in TX, and is more accurate.
Serology tests are conclusive.

No way the intestine could heal in 3 days - her doctor is a CD expert and
says that celiac is patchy and the damage is often missed.  She also heard a
CD expert speak at a convention in Iowa City (U of Iowa), who said the blood
test is the most conclusive, and that the biopsy must be done 4-5 times, very
invasively, for it to be accurate.  (Note - no thanks!)

A doctor on the list says to "believe the antibodies."  The EMA is 100%
specific (no false positives.)

Thanks again to all of you, who confirmed what I believed; that the antibody
tests were enough to be conclusive.  I had read that an endoscope only goes
so far into the duodenum, and that if the celiac is patchy, it misses the
affected area which is often in the transverse segment of the duodenum or the
jejunum.

Validation is important to me, partly because I have been so ill for so long
with nothing but a diagnosis of fibromyalgia and virtually no help
symptomatically.

Meanwhile, I am responding positively to the GF diet (now 20 days).  Whether
10 1/2 years of neurological damage and arthritis can be reversed remains to
be seen, but I have reason for optimism now.

Eileen