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Many thanks to all who replied to my question about biopsies; I'm sorry I
was unable to reply to everyone in person, but your posts were much
appreciated!

My questions were: (1) My bloodwork was negative; is it necessary for me to
have a biopsy? (2) Is it possible to have CD and it not show on blood test
or biopsy because it is not yet in acute stages?

Most of the replies indicated that, as the bloodwork can give false
negatives, and as I'm already in the middle of a gluten challenge, might as
well have the biopsy since it's painless anyway. One told me, "For what
it's worth, my blood tested negative.  It was even retested at the same
time as I had a biopsy.  Results:  blood test negative, biopsy
unquestionably positive."

The opinion that most respondents shared: "You need to know whether you
have CD or not so you don't mess around with this disease.  Get the biopsy.
It's painless." (I'm going in a week from today!)

Some warned that the biopsy can also give a false negative: "my dr and I
discovered that you can miss damaged areas by millimeters  .... and that
even a CD specialist can miss damage."

Many are living GF without biopsy diagnosis, either after a negative biopsy
or just never having one. "We all know that the blood tests are not
perfect.  Many of us are living gluten-free without benefit of biopsy, but
you may not want to do that." I guess if my biopsy is negative, I'll just
have to figure out thru individual food challenges if it's just wheat alone
or all gluten that I am sensitive to.

One respondent said it well: "It seems there is a continuum between being
healthy with a genetic predisposition to celiac and having active celiac
(damage)." Apparently nobody really knows at what point damage starts
showing in your gut; if you're not already in the extreme stages of CD, it
could be minimal damage and therefore almost impossible to diagnosis from
biopsy.

Other possibilities were mentioned in conjunction with my list of symptoms:

"I had very similar symptoms that you had. I was negative on the biopsy....
My gastro and i have decided to give it (GF) 6 months and see if my
symptoms improve or ortherwise be considered having fibromyalgia."

"Have you been tested for a thyroid problem.  Many of your
symptoms can be thyroid related.  Also my Endocrinologist said
they are diagnosing quite a few people with a thyroid
problem who also now have Celiac."

Hope this helps others. I'll be happy to forward all of the posts I
received to anyone interested in reading them.

Carma in Phoenix (US)
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