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Dear All,

I received so many responses to my question that it will take all
morning to reply and summarize :-). Thank you all soooo much, I was
really depressed, you really have made me feel optimistic again!

I'm not the only one in this situation. Quite a few people asked me to
summarize. Here it is:

Regarding the question "Can 6 weeks of gluten-free diet cause a false
negative biopsy?":

==> I got a lot of responses all saying, "yes the villi can heal
that quickly"

some excepts:

==> "My doctor said the villi can heal back in 6-8 weeks"

==> "if you had been GF for even as much as two weeks before the biopsy, my
gastroenterologist said I'd have to go back on gluten again for three months
for the biopsy to be accurate"

==> "Yes, the villi can heal very quickly in some patients, and the damage
may have not been too extensive.  From what I have learned, you have to
ingest gluten for about 3 weeks prior to a biopsy in order for a true
reading, and even then it might not register properly."

==> "According to my GI, It takes six days for the villi cells to repair
themselves.  What takes so long is getting your body to tolerate and digest
foods properly again."

About the last one: This is new to me, do the villi really heal in 6
days? Can anyone confirm this? I would really like more information on
this. I does explain a lot if it's true.

One person (he was "just" an internist with CD, he told me, the doctor
who did the biopsy was also a internist anyway) was surprised about the
quick realing-rate. But nobody told me it was impossible.

Some other possibilities that were mentioned:
==> wheat allergy
==> another food allergy/intolerance
==> any other GI problem
==> placebo-effect
==> problem related to blood-type (have to read the book)
==> pseudo-celiac: sensitive to gluten but without clear damage to
       the villi. I think the experts don't believe this exists.
==> the doctor did't know enough about celiac to read the slides
       correctly. (I think just someone in the lab did it, but I'm not sure)
==> the doctor just happened to have done the biopsy on not damaged
       part of the small intestine (it was a "blind" biopsy, more specialized
       hospitals can do a "visual" examination of the jejunum (requires a
       special endoscope (enteroscope).
==> CD has certain stages. Maybe I started on a gluten-free diet
       before the villi were very much damaged. This would cause a rapid
       regrowth of the not so badly damaged villi.

I got the following recommendations:

==> Let the doctors go to h*ll ! Forget about the diagnosis. If
       being gluten-free makes you feel good, stick to the diet.
==> Have the blood tests done. At least one of them might still be
       positive at this time (the endomysial-antibody test).
==> Do a gluten-challenge for at least 3 weeks (maybe longer) and
       have another biopsy done.
==> Have a skilled gastroenterologist look at your slides. The
       regular doctor might have missed the signs, especially when there has
       been some healing. As I understand it it is not so easy to see as I
       thought. There are more things to look at (elongation of the crypts,
       lymphocytes etc.)

Conclusion:
===========

Someone who suspects CD should NOT do a gluten-free diet yet. FIRST have
(all) the tests done. If you do it the other way around, you will have
to do a gluten-challenge, which may NOT be fun.
You should see a doctor who really knows about CD.
Yes, even a short period of gluten-free diet might cause the tests to
become negative. You should be eating gluten for at least 3 weeks before
doing the biopsy.

It's a big dilemma, or stick to the diet and never being absolutely sure
you have celiac, which is uncomfortable to me. Or do a gluten-challenge
and feel real sick for at least a month, which is also a torture.
I can still try the endomysial blood-test. It might still be positive. I
could do do HLA typing, if it's negative, it is _very_ unlikely I have
CD. There is an "in vitro" test (in a test-tube), I think it's rather
specialized, you have to find a lab that does it.

I will be seeing a real gastroenterologist soon (at last). Maybe he can
give me more information. I hope he will believe my story. I hope he
will ask the first doctor to show him the microscope-slides (if they
still exist (?)). I hope I can convince him (or her?) to do all the
blood tests and the genetic test. I hope he doesn't tell me I HAVE to do
a gluten-challenge before he will help me.
If I get more important information I will post it to this list. There
seem to be a lot of people like me.

One final remark: Don't just trust everything the doctor says. You're
the one who's sick, not the doctor. So you know best how you feel,
always listen to your body!


I would like to thank everyone who responded once again. This list is
great, it's my primary source of information.


Good luck and health to everybody. Being healthy is the most important
thing in life.

Gluten-free greetings,

Sander Graswinckel