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Date: | Thu, 6 Sep 2007 08:45:20 -0400 |
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<<Disclaimer: Verify this information before applying it to your situation.>>
Dear List,
I asked for everyone's ideas and experiences relating to why people
resist being tested for celiac. The question seems to have touched a
nerve. A great many of us have experienced the frustration of being
reasonably certain that a relative or dear friend has celiac, only to
have the idea rejected out of hand.
Thank you, everyone, for your illuminating insights. What an amazing
group! In less than twenty-four hours, 52 people took the time to
write thoughtfully on the topic. Most offered more than one
explanation, so the total of reasons given in the summary is greater
than the number of people who replied. People being the complex
creatures they are, it seems probable that most people who resist
testing do so for at least several reasons.
The amount of interest in the subject seems to justify a reasonably
detailed summary, so I have put it into three installments plus a
fourth about possible approaches to overcoming resistance a follow-up
question about listers' ideas on the subject.
I've organized responses into rough categories, with no claim of
statistical or analytic exactitude. There is a lot of overlap; I
include some arguably redundant reasons in the summary because I am
interested in the nuances. Perhaps you will be, too.
Diet-related:
Explicit fear of the diet and perceived deprivations 26
social & life style challenges associated with the diet 7
The need to explain oneself at every turn is tough 2
Can be isolating, especially for kids 2
don't want to be seen as "different" 4
1. Mistaken belief that celiac and the gf diet would be another
burden in addition to the symptoms that arouse suspicion of celiac.
2. I find people in general are very preoccupied with guilt
surrounding their food choices....The fact that I can give up so much
(I also do not eat any sugars) and not have a problem with it, only
makes them feel more guilty about their food choices.
3. Fast-food culture plus: cereal/sandwiches/pasta/pizza are the
staples of our diet. Giving it up for most is like giving up water,
if not worse.
4. Failure to see the the decrease in dollars spent on fast and
convenience foods will more than make up for the increased cost of
gluten-free food at the grocery store.
Fear of bearing the celiac label:
What will people think if I have a disease?
Fear of being dx with a chronic illness
Celiac "is horrible and complicated"
Didn't want another "label" health problem, though friend/relative
feels better now that (s/he) has stopped eating gluten.
Don't want to acknowledge the possibility of a genetic disorder
and a variant on the theme:
Overwhelmed by unrecognized celiac symptoms, especially anxiety
and/or depression, and not wanting to take on anything extra.
Head-in-the-sand-ism:
"what I don't know can't hurt me" 4
don't want to know, because then they'd have to do
something 5
simple denial - "that could not be it" 4
don't want to know if they feel "good enough" now 1
The next installment of the summary is about the nature of the
condition, testing issues and the medical profession.
Mary B.
NYC
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