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My family and I participated in a free blood screening for Celiac
Disease performed jointly by the Center for Celiac Research, UMAB, and
the Celiac Sprue Associations in Hampton Roads, Virginia.  We
participated in the study more as a sign of support for my sister-in-
law, diagnosed with the disease in the early '80s, than out of any
expectation that we might have the disease.  Penny had encouraged us to
participate as much because she knew our medical histories made us
likely to be celiacs, as to advance celiac research.  We are so lucky
have benefited from her knowledge!  My husband had entirely normal blood
work, but mine was completely positive for celiac and our two son's both
have suspicious results.  One son, 11 yrs. old, was IgA-AGA deficient,
while his 17 yr. old brother's IgA-AGA was elevated, both had elevated
IgG-AGA, both proved negative for EMA(IF method), and both were
recommended for biopsy.

Dr. Tania Gerarduzzi and Pam King from Baltimore have been responsive to
my emails but I hate to take them from their research efforts when my
concerns can be fully answered by those of you who have been through the
stage in which I find myself.

My Questions:

How do you convince a doctor to provide the biopsy when none of us show
the traditional symptoms (diarrhea, weight loss[my younger son's red and
white blood cell counts were normal])and I haven't yet had the biopsy
myself?

If I do manage to get my sons biopsied, if the biopsy proves negative
does this mean that they don't have the disease?  Maybe it just hasn't
been triggered yet?!

I believe myself to have Dermatitis Herpetiformis (not yet proven by
biopsy), must I go to a dermatologist for diagnosis of this?

I am awaiting my first visit with a gastroenterologist in late February
and have already gotten a letter from my HMO questioning my eligibility
for coverage.  What luck have others had with HMO's and celiac?

If we all were to go gluten free without official diagnosis, what would
that mean for future health maintenance?

Any advice those of you who have been down this road could give will be
greatly appreciated!

Jane Noga [log in to unmask]

I will summarize!