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

At 11:00 AM 8/10/1999 -0500, MYERS,KAREN wrote:

>While I agree that Ayn brought up a good topic, I think we need to
>address another problem that Ayn brought up that has not been mentioned.
>
>Ayn does not have celiac disease.  Her biopsy was negative.  I feel
>that Ayn needs to be discussing her problems with her doctor.  Abdominal
>pain of unknown origin and loss of friendships over this suggests
>something else to me.  I was told that biopsy is the ony definitive way
>to diagnose celiac disease.  If the biopsy is negative, you should look
>for other causes. I do not want to be unsympathetic to Ayn, but I am
>concerned that something else is the cause of her problems, and that is
>what needs to be addressed .

A negative biopsy doesn't mean diddley. It certainly doesn't mean she isn't
celiac. The biopsy can be negative (20 to 50 percent of the time according
to which study you read) for any of many reasons: 1. that you have been
eating GF for awhile, which I believe Ayn said she was, though
inadvertently; 2. the doc doesn't know what the hell she's doing, which is
legion; 3. they biopsy the wrong spot on the lining, where only a few spots
are damaged and they are hard to find sometimes if you don't know what
you're doing, even if you do; 4. the biopsy was sent to the wrong lab; the
following quote was sent to me by Prometheus laboratories: "In fact, at the
recent International Celiac Disease Meeting held in Marina Del Rey, CA, Dr.
Peter Green from NY described a case where a specimen was sent to one lab,
and came back negative.  Due to his suspicion, he then had the specimen
sent specifically to Prometheus, which he uses regularly.  Result:
Positive.  And now, correlated with biopsy." I think this is very common.

There are five or six labs in the country that are expert at diagnosing
biopsies, and most docs don't know that and don't use them.

If a person get badly sick when they eat anything with a touch of wheat,
rye, barley, or oats, and don't get sick when they dont' eat that, chances
are very good that they are celiac. -vance