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My thanks to everyone who e-mailed me.

People have widely varying opinions on this.  Some recommended additional
blood tests, including a total IgA to see if I'm deficient.  Many, many people
said they had similar test results and were later diagnosed with celiac disease.
 Some people advised that I should go directly to a biopsy, while others
warned that even that is not infallible, especially for someone in the early
stages of the disease.  Several people said it took more than one biopsy before
they were diagnosed.  Still others noted that it's possible that I'm gluten
intolerant, or allergic to wheat, even if I don't have CD.  Several recommended
testing through EnteroLabs, although others warned me that not all doctors will
accept EnteroLab results as being diagnostic.

The advice that made the most sense to me, given that I don't have a lot of
money (I have insurance, but it only pays so much), and I really hate going to
the doctor, not to mention having tests, is to give a gluten-free diet a
trial, and see if it helps.

I have since done lots more reading on testing for CD and related diseases,
and it appears to me, after reading several medical journal articles on the
subject, that the real "gold standard" test for CD is the diet.  Doctors tend to
refer to a biopsy as the "gold standard," but immediately recommend that it be
repeated or expanded if other tests are positive, or if the symptoms don't
resolve, or if other causes of the symptoms are ruled out.  They note the
possibility of "patchy" damage, which a biopsy can miss, or early disease that
hasn't caused enough damage to be detectable, or labs that aren't experienced and
miss characteristic damage.

Quite frankly, I don't have the time, the energy, the money, or the patience
to spend years pursuing a formal diagnoses.  I'd rather spend 6 months or so
gluten-free and see if it helps.  If it does, I'll consider myself diagnosed
with something that means avoiding gluten, call it what you will, and go from
there.

Forgive me getting on a hobby horse, but it's easy to see why health care
costs are going nowhere but up!  If I pursue a formal diagnosis for this, what
with additional blood tests, at least one biopsy, numerous doctor visits,
including specialists, and then follow-ups, I would easily spend thousands of
dollars (either mine or the insurance company's).  If I do the simple and
inexpensive thing, and simply try living gluten-free, then I've been warned repeatedly
that doctors won't accept this as diagnostic.  If the diet works, it seems
silly to spend a lot of money to know WHY I can't eat gluten, when the obvious
fact will be that I can't, for whatever reason.  What name you give it doesn't
matter.

There, I've vented.  I'm sure any doctors on the list will disagree with me,
but I've always been one to think outside the box, sometimes even WAY outside
the box.

Thanks for listening!

Lois

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