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......second installment of the summary on why people resist testing 
for celiac. This group of replies has to do with the nature of the 
condition, of testing and of the medical establishment.

Celiac just seems too odd:

1. I get the feeling that this remains a very mysterious and 
complicated disease to most people. The very nature of the condition 
seems fantastic...i.e. "if I put a piece of bread in my mouth it 
could have life-threatening consequences."

2. A gazillion cultural slants and references label anyone with an 
interest in dietary cures or organic food as not quite with it 
mentally and Southern California trendy and effete. People do not 
like to have their cherished world view upset, and no one wants to be 
labeled as a mystic or kook. (People cannot believed they could) be 
cured by a mere change in diet.  That's too simple and not 
'scientific' enough.  'Everyone' knows that whole wheat bread is 
'good' for you!

3. Have the information, but lack acceptance or understanding....Sort 
of an intellectual understanding but a gut reaction of How can this 
be bad for me?  We have all for a long time thought that grains are 
good, healthy and a staple of the diet.

4. Also, there is a lot of talk out there that it is the "disease du 
jour."  Honestly -- I think people are actually afraid they will look 
like a fool, asking their doctor to test them. I'm pretty sure that 
many of my family members think I am a nut case and some kind of 
paranoid, now that I eat GF.

5. ...has been looked at as one of those kookie illnesses of OCD 
people. Sort of like VEGANS only worse. You know, like, oh maybe, 
reverse bulimia.

6. Doesn't sound like a "real" disease: no pills, and most people 
still haven't heard of it.

7. Don't believe I am gluten intolerant; if they test positive, then 
they have to admit that I have what I say I have.

Reliability of the tests and problems with the testing process:

1. Testing is so unreliable, no wonder many people don't believe it. 
If so many negative results are actually false-negative, why should 
one believe in positive results?

2. Doctors are ill-informed or non-informed in the vast majority of 
cases...not only about the syndrome itself, but how to properly test 
for it (which I believe is a major factor.)

3. I think one problem may be that testing is not definitive once and 
for all....you could get a negative at one point and later it would 
develop.

4. The biopsy is a barrier, because
		a. it would be too hard on an already-sick adult or 
child and/or
		b. the thought of it is off-putting and/or
		c. many doctors and labs are ill-informed about 
correct procedures.

Physician/medical misinformation:

1. the (pediatrician) said if my sister doesn't have it, the kids can't.

2. family member thinks s/he had it and grew out of it

3. Doctors' belief that if you are not emaciated, you couldn't have celiac

4. My brother was more than happy to nix the idea when his doctor 
balked at ordering the test due to the lack of obvious symptoms.

5. The doctor said - well you're in your 70s - if you would have had 
Celiac - you would have known by now.

6. A respondent who identifies herself as a nurse in a teaching hospital wrote:

"It is not uncommon for patients to bring the subject of testing up 
with their doctors, and be matter of factly told that 'oh you don't 
have that, stop worrying' and imply that thinking about celiac 
disease is akin to worrying 'what if it's not just a headache, what 
if its a brain tumor'.  Also I have heard more than one Dr. state 
that the gluten free diet is so hard that it is not worth trying, it 
is better just to treat the symptoms (control the diarrhea, 
nutritional supplements, etc...)"

The third installment of this summary is additional remarks and a 
couple of stories.

Mary B.
NYC

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