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I understand the feelings of the physicians on this list that in an ideal
world, a biopsy is necessary and desirable in the diagnosis of celiac
disease.  This assumes that the patient is eating a gluten-containing diet,
because a celiac following a strict gluten-free diet will test negative on
both blood antibody tests and the biopsy.

Time after time people have sent out pleas for guidelines on what is
necessary for a gluten challenge, and I have seen no response from any
medical professional.  People have written in about their own experiences,
but there is no consensus about how much gluten needs to be eaten for how
long to produce positive blood tests or biopsies, particularly in adults.
Only in a post by Mike Jones in January on the blood antibody testing have I
seen anythinbg that looks like a real guideline, and there it is stated
that positive results to the blood antibody tests will occur sometime
between two months and two years back on a gluten-containing diet!!!!  This
is a far cry from the single saltine cracker a day for a week challenge that
sometone described for their child!

For those of us who have been on a strict gluten-free diet for over two
years and thus presumably have completely healed guts, this gluten challenge
might apparently take two years before a positive biopsy could be obtained.
Unless one is in a completely asymptomatic class of celiacs, it would be
EXTREMELY debilitating to go back on a gluten-containing diet for such a
long period of time.

Though I hold some physicians in the highest esteem, I would cheerfully wish
the hell I went through as a gluten intolerant teenager on the half dozen
of Boston's "finest" gastroenterologists who failed to test me for celiac
disease because I was "too tall", and who told me that my "irritable bowel
syndrome" was all in my head.  If I had not started figuring out what was
wrong on my own (after a 1984 trip to Peru, where I ate only potatoes, rice,
and fruit, with a little meat for 3 months and felt better than I ever had
in my life), I would certainly be very sick right now (or perhaps not
living).

I'll ask all of you who are against self-diagnosis one question: which is
preferable-- self-diagnosis or misery?  Those happen to be the only options
for those of us who were not fortunate enough to have a physicain do a
biopsy before adopting a gluten-free diet.

Laura Johnson-Kelly
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Ithaca, NY, USA