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After traveling from the depths of humiliation, "This doctor persuaded me and
my kids to make drastic changes to our diet for no reason!", to outrage, "How
dare they tell me my symptoms aren't diet related!"  I have been trying to
calmly, mindfully, evaluate my situation.  The astonishing 45 articulate
replies I received have been salve for my wounds.  To those of you who
advised me to dump these doctors, I have already dumped a few, but these are
the new ones recommended from various listmates at the University of Michigan
Hospitals.

After feeling increasingly miserable, I decided to revert back to the gf/df
diet despite my negative biopsy.  Five days later, just as I was starting to
digestively perk up again, I received a call from our pediatric
gastroenterologists's nurse practitioner.  After the Selsun Blue episode from
our family practitioner, the dippy waffling about our constitutional natures
from the wholistic D.O., and the perky nurse from the gastroenterologist
telling me, "Your biopsy is negative, you can eat whatever you want!"  I
could only ask, "What now?"

In dramatic contrast to all the foggy information of yore, I received
clarity.  She stated that after any change in the diet there would be a six
to 12 week adjustment period which could involve digestive misery.  After the
four miserable weeks glomming wheat for the biopsy, I might have as many as
three more months before my body could properly adjust to the change.  Only
after that interval could I determine with certainty that I had an
intolerance to gluten or dairy, and then I could back off to a tolerable
level.  The same goes for the kids who have negative blood tests.  She said
that this is something that only I could determine and that a doctor probably
couldn't identify as well as myself.  But finally here is a solution to why I
would feel so miserable if I got a trace amount of gluten and don't have
celiac, my body wasn't used to it and didn't know how to handle it.  And the
answer to why my daughter's diapers have changed so drastically since our
diets changed.

I received volumes of mail.  Rather than quoting each, I can tell you that we
have a remarkably consistent story from many who biopsy negative yet
experience digestive misery from gluten.  The gastroenterologist and
pediatric gastroenterologist both stated that there was one recorded case in
the literature of a person who is gluten intolerant yet not celiac.  They
both suggested that this condition was improbably rare, yet I've now made the
acquaintance of 45 listmates who seem to have it!  I even heard names for the
condition: "pseudo-celiac" and "gluten allergy".

I was also interested to hear from those of you who had rashes that weren't
DH in response to wheat.  My son is developing a good case of one right now,
but I'm just letting it grow until he complains.  The explanations of the
different kinds of floating stools, oily vs. gassy, are helpful, a sort of a
field guide to the spoor of the intolerant.  It is interesting to hear how
subjective, and wrong, the reading of biopsy slides can be.  I was delighted
at the many suggestions that I dump my friends and family, but I'm not quite
ready for that step.

So for the next three months, we will be following a regular diet to try and
see what our tolerance level really is.  I know that many of you will
disagree with this course of action, in particular the considerable "listen
to your body, not the doctor" faction, but doing so will allow me to
understand better where my children and I are at for the future.  I can
always go back to glutenfree/dairyfree, and frankly it tastes pretty good.

Thanks to all!

Adele