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Hello Listmates,

I could use some input right now.  I'm going to try to make this as
quick and consise as possible.

Last November I was in the hospital with stomach problems (I've suffered
with trouble since I was 10.. had my gall bladder removed at 20, though
the trouble was over, but at 30, it's not).  I left the hospital then
not knowing what anything was after tons of tests.  I got the same "It's
just IBS" response and that I could eat a meal one day and be fine and
eat the same meal another time and get sick (I get severe diarrhea).
Elimination diets previous to my gall bladder surgery only showed
sensitivities to meat/chicken and dairy.  Dairy I can tolerate
sometimes, the other I haven't had in almost 10 years.

Well, going home back in November I didn't want to eat.  Now I had a
fear that my pain couldn't even be stopped in a hospital - there was
nothing they could do.  How could I proactively help myself?  I called
my GI about Ensure, figuring that would be how I could get nutrition.
He had said that it's both lactose free and gluten free.  That's the
first time I heard about gluten.  I picked up on its mention and asked
about it.  I started researching online and found tons of information as
well as this wonderful group.  I pulled gluten out of my diet and within
four months of being gluten-free, I felt better than I have my entire
life.

During that initial time, I called to ask if my small intestine had been
biopsied during the endoscopy I received while in the hospital (only
results were severe gastritis, no H-Pylori either).  I had requested it
because there is a history of colon cancer in my family, but with the
information I had, knew I could be tested for Celiac based on that
biopsy.  It hadn't been done.  I was furious.  I was told here about the
bloodwork tests and had those done.  Negative, however here I'd heard
about those who had positive biopsies and negative bloodwork.

I was losing weight (to date 95 lbs), starting to feel better and
frankly, didn't care if I had a positive diagnosis.  If nothing else, I
was definitely gluten sensitive/intolerant.

I have had a few severe reactions when I've accidentally eaten a food
with gluten in it.  I could always trace it back and eliminate the
food/ingredient.  However, two weeks ago, I couldn't.  I had severe
pain, diarrhea and could only keep Gatorade in.  My GI was on vacation,
but I figured I'd just let him know.. maybe I needed a different
medication (I take Robinul - an anti-spasmodic and Prilosec for stomach
problems).  He heard what had happened and wanted me admitted and on IV
immediately.

So I spent three days last week in the hospital.  More bloodwork,
another endoscopy - this time getting a biopsy for celiac.  Well, I just
found out the results - nothing, negative.  I feel so down and
frustrated.  I have an appointment with the GI first thing in the
morning, I'm still not feeling real great and can't trace this back to
an accidental ingestion of gluten.  I was poked and prodded in the
hospital.. talked with a classroom (seriously) of residents about this
(I feel like a guinea pig).  My doctor was supportive, telling the
residents who are working with him I'm "religious" about watching
everything with gluten.  His partner was less than supportive and edged
on insulting and hurtful.

Finally my question - would you continue with the gluten free diet
knowing you feel better, but having no results to back up the decision
and doctors who ask rather rudely "So why did you remove gluten?"  (I
get asked that, but not in that manner, typically.)  What questions
should I ask my GI tomorrow (Friday) morning?  Could this be something
else?  I feel so lost and confused and frustrated and just plain angry.
I'm sick and tired of feeling sick and tired.  One side note - being
gluten free has seemd to help.  I developed agoraphobia as a result of
all the diarrhea.  I've been back out - doing my own grocery shopping
and fun shopping and have been in a restaurant a handful of times in the
last couple months (I hadn't been in a restaurant in nearly 9 years).

I'm sorry for the length, but figured who else but you could understand.

I greatly appreciate any input.  Thank you in advance!

Aviva
(Chicago area)