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This is a long one.
I thank everyone who responded to my earlier posting, Optional routes
to GF diet. Of 37 responses, 35 expressed support for the views I put
forth. Two held me to task for not accounting for the effects of peer
pressure on young people. This posting is an expansion of my earlier
one, an attempt to explore how we look at ourselves.
Is CD truly a disease, or is it a genetic condition aggravated by the
foodways of a society that imposes a diet of industrial-strength
gluten on its members, whether they can tolerate it or not?
This is an important question because our answer bears strongly on how
we look at and present ourselves. Is there something wrong with us? Or
are we ok, and happen to belong to a society that unwittingly rides
roughshod over the variability of its members?
As one who has gone to a string of doctors over 45 years, without once
obtaining relief from the symptoms I presented, I have been tempted to
dismiss the medical profession as a bunch of bumbling incompetents.
But that judgment would be unfair to them, as certain practitioners
have been unfair to me in dismissing or misdiagnosing my complaints.
That is a discussion I do not intend to reopen.
In good conscience, I cannot blame the doctors I have seen any more
than I can blame myself. I am ok. They are ok. We all do the best we
can with what we've got in the time allowed. The problem with celiac
so-called disease is in the fit between certain individuals and the
society in which they live.
In a very real sense, we are not sick, nor can we blame our society
for making us miserable. The rub occurs in the interaction between us.
Since society is largely unprepared to manage that interaction, if the
situation is to be improved, it is up to us as individuals to do
something about it.
Rather than seeing ourselves as misfits or, worse, as diseased, we can
accept responsibility for managing our condition in ways that minimize
any discomfort to ourselves or to those around us.
This is particularly important for young people in developing a sense
of competence and self-worth. They are not sick. They do not have a
disease. They are not misfits. Like everyone else, they are who they
are, people with a unique set of individual characteristics, one of
which in their case happens to be gluten intolerance, which is a fact
of life and nothing to apologize for.
The upshot of this argument is that how we manage our lives is up to
us. Society will not bail us out. It is a waste of time and energy to
indulge in self-pity or casting blame. The question we all face is,
how are we to live our lives? We have a choice. We can make ourselves
dependent on others who do not understand our condition, insuring we
will suffer till the end of our days. Or we can build a life from the
inside-out, based on our own self-knowledge, being who we are instead
of wishing we were someone else.
As a first step, I propose we rename ourselves as a constituency
characterized by gluten intolerance (GI), instead of seeing ourselves
as victims of celiac disease (CD). Managed sensibly, the disease goes
away, leaving us with a lifelong intolerance to gluten. If we lived in
a GF society, we'd never know we were "sick." Our challenge is to
create cells of such a GF society in the midst of our broader
gluten-addicted society. This list gives us the means of doing just
that. I have wallowed in ignorance most of my life. With the help of
those who sustain and contribute to this discussion, I have seen the
light. Thank you all, and let's not rest till we make a GF society
accessible to everyone with a birthright of gluten intolerance.
Steve Perrin
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