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

Hi all,
I received 14 replies to my post regarding my significant other's (SO's)
biopsy and non-results.
To summarize:
Leslie in Atlanta said a false negative was entirely possible due to the
length of the small intestine. She went on to say:
>There are only a few GI people around who can add up all the facts
>of a case to determine whether the patient has CD or not, given negative
>tests. My daughter had an "iffy" biopsy, not at all clear-cut, but my GI
>person put her whole history together and declared her to have CD, thank God.
>Your Dr. and the vast majority of other ones I've heard about would have
>dismissed her and possibly killed her in the process.

Ron Hoggan in Calgary sent this:
>The literature indicates that it can take up to two years for villous
>damage to recurr. A two week challenge is inadequate.
>You might consider attending the 1999 national conference of the Canadian
>Celiac Association in Calgary. Our keynote speaker is Dr. Michael N. Marsh.
>He has pioneered the only protocol that I know of that can lead to an
>accurate diagnosis whether g-f or not. It is called a rectal challenge, and
>the name is reflective of the procedure.
Ron, you pack a lot of information in such a short message. I'll be there.
The procedure you describe has me thankful it's my SO ... not me. Eeeek!

Gail described another "bad" gastroenterologist with a holier-than-thou
attitude and go-away-you're-bothering-me exit line. Gail's biopsy was
positive. She wrote:
>I think that because the treatment
>for this disease is a gf diet vs. some medical intervention, they are not
>really interested in finding out or hearing about what happens after the
>diagnosis is made.

Lucy from The Gluten Free Kitchen (How do I get invited for dinner,Lucy?) said:
>If he was gluten free for a while, it is very possible to come back
>negative even with a gluten challenge. The Villi corrects itself if on a
>gluten free diet. My ex-Dr. took my blood about a year ago for anemia and
>ran a test for celiac sprue. He said this test is negative, you are in
>remission. I am not in a remission where I can eat gluten as he thought. I
>know that it makes me very ill

Elizabeth and Jenny said two weeks was not a long enough gluten challenge.

Ginny in New Jersey suggested getting another gastro to look at the results.
I'm going to look into that. There are two teaching hospitals in Vancouver
but it takes over 6 months to get an appointment. That's why we opted for
the gastroenterologist in Surrey, only 2 month's wait. Thanks Ginny.

Eleanor pointed out how fortunate we are to live just outside of Vancouver,
BC, Canada where there is awareness of CD. You're right, Eleanor.

Barb in Ohio and Carol in Central NY asks:
> did he have the blood tests?
No, these kinds of blood tests were not offered by SOs general practioner,
instead, before seeing the gastro-guy SO saw an allergist who admitted his
tests would be inconclusive. The results  showed reactions to wheat and
barley and about a dozen other things. But a high score on wheat.

Barb in Ohio sez:
You might want to contact Dr. Murray in Iowa and
>see what he recommends.  I know people who live near me in Cleveland OH who
>have driven to see him.  He is the best!>Good luck, Barb from NE Ohio
I'm hoping I'll find someone closer to home. Your country doesn't like us
old hippies.

Leslie in Atlanta sez:It sounds like your SO
should definitely stay GF, as hard as it is, and trust his body.
and Kim sez:
>I believe that improvement on a GF diet is the best test.  It
>certainly is good enough for me.

Regarding packed lunches:
Caroline in Charlotte, NC on lunches: Cook extra for the evening meal and
pack and chill.
Doing that. I've become a fridge-o-sealTM owner.
Lori in Philadelphia liked the subject line and steered me towards a packed
lunch list. Thanks Lori.

Thanks everyone for your replies. We were a bit discouraged for a while but
we're back on track. Eating is much easier than it was, we're getting good
at the GF diet one dish at a time. SO has had big success in the pizza
department. I'm working on burgers. We're eating more fresh and organic
food. Personally, I feel great!

Your support has been invaluable. Ron looked positively healthy this
morning :-))
Thank you again.
Eileen