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First a huge thank you to everyone for your supportive responses!  I am
incredibly grateful!

I received about 65 responses to my inquiry about help after a negative
biopsy and trouble I was having with the doctors.

I need to clear up a few things that kept coming up in the responses I
received.  First, I've now been gluten-free for 8 months.  My initial
statement about 4 months of gluten free was back a ways after an initial
endoscopy - that was performed before I even knew what gluten was.  I
was never biopsied, doctors weren't looking for Celiac.  I didn't expect
my endoscopy a week ago to produce positive results since I have been
gluten-free for 8 months now.  Because of the incredible amount of pain
I was having, the doctor insisted on another endoscopy - I figured,
while he's there, take a look and biopsy - but again, I didn't expect
positive results.

So with that out of the way, I'll fill you in on what wonderful advice
all of you gave me. :-)

The overwhelming response was that if I feel better following a
gluten-free diet, then by all means, keep following it.  I was surprised
that of those who mentioned their own cases, many were in my positive
and did not have a positive diagnosis for Celiac either, but felt better
just on the diet.  I did receive 2-3 emails stating that I should
undergo the gluten challenge, to have a positive diagnosis (all agreed
it sounded like I have Celiac), to help the cause so there's an exact
number of people who definitely have Celiac and to help doctor's realize
just how real this is.  While I completely respect that idea, knowing
what just the slightest bit of gluten does to my system, I must
respectfully decline ever eating gluten again.

What I may have experienced, since I couldn't trace this episode to an
accidental gluten ingestion, could have been a simple virus.  As one
shared, taking care of the Celiac doesn't exempt us from virus' and
other sicknesses.  I just had to chuckle and remind myself how true that
is - I guess even a gluten-free diet can't keep away a common cold. ;-)

Many said my doctor's partner's response (bordering on rude and
insensitive) isn't rare, but there are very sympathetic doctors out
there and I should not see his partner - something I decided not to do
as well.

Now for my doctor's response from the appointment.  My first question to
him was why did he ever mention gluten 8 months ago when I asked about
the Ensure drink.  He told me Ensure makes a big deal about it and I
pressed further with a but why did you mention it.  He said a lot of
people with IBS have trouble processing gluten filled foods because of
the heaviness and the gasiness; digesting them causes a lot of pain.

He said he didn't feel comfortable mentioning I try pulling all gluten
out of my diet because there was no definite proof I had Celiac (I had
been eating gluten all my life before the initial endoscopy, but
apparently, the villi looked healthy enough because a biopsy wasn't
done).  He said without the definite proof, he felt uncomfortable
recommending I try such a difficult diet - don't we know that?!  He was
initially surprised at the route I took, but commended me and said if I
feel better not eating it, and I can handle the strictness of the diet,
by all means, I should continue.

I know it's weird, but I felt relieved hearing that.  He continued and
said that many of his patients just want the pain gone and take so many
medications to get to that point, he's very glad a natural route like
the diet is so helpful for me.  He also said based on my results, he
will be mentioning it as a viable alternative for others who want to
take more of a proactive stance in their healthcare.  He was thrilled to
hear the positive results the diet has had on my agoraphobia as well.
(As for the restaurants, I'm a vegetarian so the most I've had out is a
salad without dressing or fruit, so I'm not too worried about
cross-contamination.)

Another interesting mention was a medicine called Lotronex.  It's
developed for IBS and helps with problems in that area.  A friend who
also has panic disorder mentioned it me because part of what it does is
help the serotonin triggers in the stomach which help bring on the fear
(it's partly an SSRI - serotonin reuptake inhibitor).  I'm starting on
that this morning, maybe that will be of help as well.

Sorry for the length, just trying to be super-thorough!  Thank you all
immensely, I greatly appreciate your assistance and support. :-)
Aviva
(Chicago area)