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A few people offered ways of thinking about resistance to screening for celiac.

Responses to the resistant:

1. So far the only thing that has worked for me is to promise to quit 
hounding them if they will  get screened to eliminate celiac as the 
cause.

2. Sometimes I wonder if I go too far and people are sick of me 
suggesting celiac.... kind of like -- just because you have it, that 
doesn't mean that everyone else in the world does!

3. Lots of times people like the attention they get when they whine 
about being sick...If they refuse testing, you can tactfully 
suggest....that (you are sympathetic about illness but) don't need to 
hear them complain unless they have ruled celiac out with 
testing. ...No testing, no sympathy from you!  ....This is especially 
true if prescribed treatments from various conditions haven't worked 
& they are being dx with new ones.

The sum of the replies gives me the feeling, to put it into one 
oversimplified sentence, that celiac can sound a little cultish-an 
unlikely-seeming condition with numerous but vaguely defined symptoms 
requiring constant vigilance and a weird diet, and about which many 
physicians are so skeptical as to be dismissive. If my sense of 
things has merit, it's a view of ourselves as others see us, and 
perhaps suggests ways of approaching the resistant.

We already know that we need increased public awareness, better 
physician education and more accurate testing.

In the meanwhile, my experience suggests that emphasizing the dire 
potential consequences of celiac just scares people off, particularly 
if they have come to accept subpar health as normal. Underplaying 
celiac seems to be more helpful because it is reassuring.

What do you suggest as potentially effective approaches?

The diet is obviously a huge hurdle. When people say "That must be so 
hard!" I counter with remarks about how much I can eat, say it's not 
nearly as bad as it sounds (I like the rat poison analogy), and maybe 
add that it's pretty lucky to have something that can be so easily 
treated.

Of course "easy" is a relative term. If it were easy to change one's 
diet we'd be a slimmer nation  subject to a lot fewer strokes and 
heart attacks. So why were you able to go onto (and stick to) a 
gluten-free diet? Feeling better is of course a huge motivator, but 
we all embarked on the gluten-free diet before we'd proven to 
ourselves that it works. Why do you think you were able to change 
your eating habits?

Mary B.
NYC

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