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

Hi

I've been on the list for about 8 months now---give or take--but this is the
first time I've written in. I want to apologise in advance as I know this has
been kicked around more times than can be counted--but I see that each case
is different--so I feel that I still must ask. In my case--I had been sick
only a few years--had an earlier diagnoses of IBS--stress--any number of
other things. When I lived in NYC I had the good fortune to go to a lady
there who thought she recognised my symptoms as CD. She had me go through an
endoscopy--checked the entire length of my colon with her little camera and
took samples from several places. NOT an experience I wish to
repeat--LOL--I'm sure many of you can relate. Anyway--the results came back
borderline--the villi were not completely flattened--just partially--the
chemical changes were there in the tissue, but not in large quantities. The
blood work done prior to the biopsy was negative. However--after going on the
diet--I got better. If I made an error and accidently ate glutten, I had
abdominal pain in my tummy I could literally feel making its way through the
colon (or so I think LOL). The doctor said she felt that it was CD, in large
part based on her talks with me on my history and on the fact that I got
better on the diet. I did my best on the diet--but still had some small
reactions from things like ketchup and other condiments with vinegar. (I know
these are controversial items---but it seem important to mention them here
because I was still getting diarrhea after going gf--and I could trace it
back to the condiments...I might also add that to this day I do not consider
myself one of the ultra sensitve Celiacs, since my realctions have never
incompacitated me...thank the good Lord!)

So--Sometime afterwards--over a year later--I read in some support group
newsletter or other that I should have a checkup with additional biopsy to
make sure the healing was going well etc--(Do you all do this--is that
unpleasant experience really necessary multiple times even if there's no
outward sign of ill health? Awe, do I have to...???) Since I had good
insurance then and --and since I'd still been having some troubles (as I
described above) I wanted to make sure everything was ok, so I attempted to
call and make an appointment--but found that my Dr had dissapeared on
sabatical (I think she had a child)---never to be seen again. I got the name
of another Dr in NYC from the same support group of the newsletter above and
made an appointment. He looked at my results--still available from the
hospital, thank goodness--and decided it was inconclusive. He decided to do
his own biopsy--a small bowel biopsy--the kind where you swallow the little
pod thing attached to a line and he waits 'til it gets to the right place,
then takes a sample, and then retrieves the whole mess---rather like fishing
LOL. (Sorry for being graffic--Its been long enough that I'm not sure I have
the terminolgy correct, and felt a description was more accurate.) I had at
that time been gf for well over a year, to the best of my ability, with my
copy of the Canadian Celiac Association's (I may have the exact name wrong
here--sorry--its a wonderfully helpful group!) little blue book of suspect
ingredients in hand on every shopping trip--but was uninformed that this
would effect the outcome--he was the specialist--I assumed he would know what
the deal was. Naturally the test came back negative. (sigh) He gave his
opinion that I was definately not Celiac and that I might have an
intollerance to wheat (since in his opinion there was no such thing as an
"allergy" to wheat) or something else--then he gave me small vial of pure
*wheat* glutten and told me to sprinkle it on my food as a glutten challenge.

I asked why it was to be *wheat* gluten if he thought I had an intollerance
to wheat--to which he didn't have much of a reply--something about the gluten
part not being the part people were usually intollerant of, or something to
that effect.  I must add that his whole attitude was so very dismissive of my
intelligence and concerns, that I lost confidence in him and never went
through with the gluten challenge. This same man is still quoted as a leading
"expert" in the field all the time. (In fact, just this week his name was
invoked on this very list!) It was some time later (maybe another year or so)
that I read in another newsletter that healing of the intestines occurs, and
that after being gf for that long, it *would* come out negative. In the
following years I had occasion to move overseas and experience an
unintentional gluten challenge as I got used to all the unfamiliar foods (and
if you think labeling is bad *here*!...) and I assure you--I have a
reaction--classic gastrointestinal distress with dizziness, bloddy stools and
etc. (In a country where I was practically the only celiac, too--what fun
LOL) So--now what? I have been living as a celiac for years and enjoying the
benefits---but should I consider my first diagnoses suspect and still look
for the illusive definitve diagnoses?  Do I need to go back for periodic
checks? I guess its more accademic than anything--since I doubt I'd ever have
the courage to deliberately make myself sick in a gluten challenge--but I am
interested in what you all might think about it.

Thanks in advance for any and all help you may be able to offer. I will of
course summerize.

Barbara