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Dear List,
As a follow-up to my question about why friends and family with
possible symptoms or at an obvious genetic risk for celiac (i.e.,
they are related to us) resist being tested for celiac, Explicitly or
implicitly, not wanting to go on the diet is by far the biggest
reason for resistance.
I asked why people on the list were able to go on the diet without
first-hand experience of its positive effects-in other words, why we
ourselves did not resist the diet.
The answers, it turns out, are pretty self-evident-which accounts,
perhaps, for the small number of replies (a dozen or so) I received.
1. Most people were very very sick, so sick they were ready to try
anything. A year or so ago someone on this list pointed out to me
that the preponderance of people here were quite sick before they
were diagnosed, in contrast to the majority of celiacs, who are
either asymptomatic or do not realize that their health is much less
good than it ought to be. In other words, with respect to our
willingness to be vigilant about the diet, we may not be
representative of celiacs in general.
2. A couple of people (myself among them) went on the diet despite
not being very sick because of undeniable evidence of the disease: a
positive biopsy.
This last, it occurs to me, is a good reason for having a biopsy.
Because the evidence, I was never tempted to resist or to stray from
the gluten-free diet, despite feeling at first that the whole thing
sounded like hypochondriacal overkill. "Isn't that killing an ant
with a machine gun?" I remember asking. Nope, it's not. Only later
did I realize how many problems, including terrific problems with
fatigue and brain fog, I had come to accept as normal.
As for my question about how people deal with resistance:
1. I found the diet change relatively easy at age 45 because I've
always been into cooking & food. (With people who resist being tested
I emphasize) the positive: many more foods are GF than not. There are
lots of delicious things to eat. Downplay and don't talk too much
about it
2. I have not dealt with a lot of new Celiacs, but those I've talked
to seem to respond positively to my analogy. I have an absolutely
rabid allergy to anything that comes out of the ocean, including sea
salt and any form of iodine. The only thing I can do is check labels
and remember things I react to. I just absolutely have to avoid
eating those things. Eating a portion seasoned with sea salt will
make my face swell up like a balloon, leaving me slits to see
through. An ounce of shellfish will put me in the Emergency Room
with Giant Hives.
3. One selling point for testing for people who don't like MDs is
that managing this chronic condition AT HOME may keep you from
needing medical help for a lot of other chronic conditions about
which they've been avoiding talking to a doctor.
4. I do feel a responsibility to "warn my neighbor" about celiac
disease, but once I've done that I let go. The rest is in their
hands & God's.
Thanks, everyone.
best regards,
Mary B.
NYC
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