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Dear Diane Boyd and celiac list-

I read your mailing on your daughter's lack of an antibody response.  I am a
graduate student at Stanford in immunology, and although I do not do research on
celiac sprue, I understand more of the immunologic background of the disease
from my studies.  I have done some library research in this area due to my own
interest in the disease since I have it.  I also had very "atypical" symptoms
before diagnosis, but I think that what is medically considered "atypical"
probably isn't so unusual in the real disease course.  My gastroenterologist
says he has diagnosed one person whose only symptom was depression, and another
whose only symptom was impotence.  We may not tell our doctors every symptom if
we have a lot or think that they are unrelated to our condition.  Especially
with children it may be difficult for them to describe a certain symptom.

Since celiac disease is an inherited condition, I would highly recommend that
you put your second daughter on a gluten-free diet as well.  I find it hard to
believe that one child could have been positively diagnosed with celiac and the
other child merely has "irritable bowel syndrome," which at this point the
medical community believes is caused by stress.  This is probably unlikely for a
10 year old girl.

In regards to the negative antibody test, it is more likely to get a false
negative on a test like this than a false positive.  That is why the antibody
test is very useful in a positive diagnosis, so if the results are positive you
may not need to go ahead with the biopsy unless you want absolute proof.  In the
case of a negative result, however, this does not say that you do not have
celiac disease.  It merely says that you are not producing a detectable number
of antibodies.

Celiac disease is a T cell mediated disease.  For poorly understood reasons, the
body's own immune cells called T cells begin to attack the cells lining the gut
when these gut cells are exposed to gliadin from our diets.  One of the
consequences of these T cells becoming activated to do this damage is that they
release factors that cause other immune cells to release antibodies, some of
which end up in our blood.  It is these antibodies that are measured in the
test.  From the current understanding of these types of diseases, it appears
that these antibodies are probably not necessary for the disease to occur, but
are instead a byproduct of the T cell immune response to the gut.  For this
reason, it may be possible that the T cell damage could go on without seeing any
antibodies produced.  For these reasons, in your situation I would have your
daughter get the biopsy or just go straight to a gluten-free diet to see if this
clears up the symptoms.

At a Celiac Group of the Bay Area meeting, I heard Don Kasarda speak about
research in this area he is doing with Martin Kagnoff at UCSD.  He may have a
comment on this subject if you want to contact him.

Sorry for the length of this message. Good luck.
--Ann Herman