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I was going to respond just to Jessica about this issue, but then
realized that my family's story might have some relevance to a wide
range of folks on the list.

I find myself under circumstances similar to Jessica -- being on a GF
diet without being tested first.

I didn't even know what celiac disease was, but my two older brothers
had had some luck with their severe joint pain (which I shared) by
"not eating wheat."  I tried it, reluctantly, and it took 6 months,
but I realized that it was almost a miracle.  Because I did not want
to go back to feeling that way, I just stopped eating gluten
altogether.  There are some other symptoms that being GF has lessened
greatly, including one that is clearly neurological.

THEN, I found out about celiac disease.  All this time, I just
thought I had some kind of simple allergy to wheat.  Now, as I look
back over my life and health, I realize that I do have CD, as do both
my older brothers, and my mother (now deceased, and plagued by so
many things attributable to this disease).  My oldest brother (who
has been on and off GF food) is now suffering from a degenerative
brain disease; there is no way to know for sure, but it has all the
earmarks of gluten ataxia, which is degeneration of the cerebellum,
caused by gluten.  His prognosis is extremely grim.  Because he HAD
been off of the GF diet for a couple of years, he did get tested.
His tests were positive -- though, because the blood tests aren't
100% positive, amazingly all his doctors don't believe them.  (It
makes me want to scream.)  He is too ill to have the biopsy test.  He
is now on a GF diet, knowing that it may or may not help his brain
disease ... but convinced that he does have CD.

I heard an interesting statistic one day from a speaker from the
program at the University of Chicago ... she said the people who
fared the worst with CD were those who went on and off a GF diet.
That is, she said they had a 6-times greater mortality than did
people who stayed on a GF diet, period.  That scared the heck out of
me, as far as doing a "gluten challenge."  She also said, in the same
speech, that testing was critical.  WHY I do not know, if symptoms
all point to the conclusion that you have CD.  I raised my hand and
asked, of course, how could you be tested if you were on a GF diet?
She said, also of course, that you had to be eating gluten to be
tested.  How much?  The equivalent of at least 3-4 pieces of bread a
day for 3 MONTHS!  I followed up with the query of -- "well, isn't it
dangerous, as you just said, to go on and off a GF diet?"  She wasn't
a doctor, but a spokesperson for CD awareness for the University; I
clearly threw her for a loop.  She did not have an acceptable answer.
But the answer for ME is to assume I have CD, and I don't need tests
to know that gluten is NOT my friend.  If I went off of my diet for 3
months, I probably couldn't walk.  So, forget it, as far as I'm
concerned.

I truly hope that this country becomes more aware of CD, so that
people like you and I will know how important it is to get tested.
AND that we might have doctors that will be able to see the signs and
recommend tests for their patients, before they stop eating gluten.
The irony of all this?  My oldest brother, who has the brain disease,
IS a doctor -- though a cardiologist, I would safely say that he had
zero "real" knowledge of CD until a few months ago, even though he
knew that eating wheat increased his joint pain.

Best to all of you,

Suzanne

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