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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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