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Hi, List -

A number of replies have come in since the first summary of answers 
to my question about how vigilant people are. I am posting a 
follow-up summary because there has been so much interest.

First, just the numbers:

In addition to the original 52 replies, there are 27 new ones.

22 classify themselves as "super-vigilant"
5 describe themselves as "semi-vigilant"
1 used the term "just vigilant"

Combining the totals:

66 people put themselves in the "super-vigilant" category.
16 call themselves "semi-vigilant"
1 "just vigilant" - maybe that means "you is or you ain't."

A number of people correctly pointed out that my passing reference in 
the last summary to "self-selection bias" underplays the degree to 
which those who responded are a subset of a subset, and not 
representative of Celiacs as a whole.

Furthermore, we know there are a great many undiagnosed Celiacs in 
the US, many of whom do not define themselves as sick although, 
post-diagnosis and post-diet, they might very well realize that they 
feel a lot better than they used to. Given that, it seems safe to 
assume that non-compliant Celiacs who do not become obviously sick 
from eating gluten are less motivated than others to change their 
dietary ways, look for answers and participate in forums.

Two writers put it succinctly (parentheses mine):

1.
>Super vigilant is typical among people who active on a forum like 
>this, but I don't think...the people who are active on this listserv 
>are representative of the general celiac population. Folks who are 
>active here and elsewhere generally are more sensitive, have been 
>sicker and often have problems other than celiac. Most folks who are 
>active in forums slowly drop out as they adjust to the diet, so the 
>average person (on this list) is also less experienced and probably 
>more hyper-vigilant.

-on the other hand, some become more careful with experience.....see 
below, after #4

2.
Your survey almost necessarily will get a result skewed to the more 
vigilant side.  First of all, people are not likely to be on this 
list if they are not at least somewhat vigilant.  Second those who 
read your post and answer are likely to be more vigilant than 
listmates who are less so. Finally the standard of vigilance is very 
subjective -- there are people who consider eating out ever as lack 
of vigilance.

People on either side of the "eating out vs. not eating out" consider 
theirs to be the standard of vigilance. A case in point:

3.
.....I know several people who have celiac but never read or 
participate in any forums, and all of them take educated chances when 
eating out or socializing frequently. My own doctor, for instance, 
has celiac and is fairly sensitive, yet he eats out regularly, taking 
no precautions other than avoiding the obvious. He also doesn't worry 
about whether or not prescription meds have gluten because virtually 
none do (I still check).

Others called themselves "semi-vigilant" because they do eat out.

Another writer made this point about how subjective measures:

4.
I absolutely will not rely on personal testimony to determine if a 
product is GF.  So, when I read on this list that this product or 
that product is GF or not GF I pay absolutely no attention to that. 
I have no way of knowing....what standards they apply in deciding to 
tell me that something is GF.  So, I do my own checking.


Some people said that with experience, they become more careful.

A personal note: as I was not obviously sick at the time of 
diagnoses, the details of the diet sounded ridiculously picky. 
"Killing an ant with a machine gun," I said. Um, no. I went from 
avoiding obvious gluten to investigating sources to knowing that 
buffets are hazardous unless I get there first....and on and on. I do 
eat out, but not in places that mass-produce the food. I rarely get 
hit but, since I have no antibodies, my gluten reactions now are much 
more dramatic than they were before diagnosis. On the other hand, the 
joint pains have long since gone away, I don't live on aspirin for 
limitless headaches any longer, I am usually pretty cheerful, I am 
not bone-weary when I wake up, I don't get outbreaks of DH and my 
brain (such as it is) functions.

On the subject of experience:

5.
At our Celiac Support group, someone said that they had read that in 
a Celiac one-eighth of a teaspoon of flour can cause damage in the 
small intestine. Even after 15 years of GF diet, that got my 
attention and I re-evaluated the foods I was eating. Dropping the 
Campbell's condensed soups, Kellogg's Rice Krispies, and Knorr sauce 
mixes. There was a noticeable difference in my health. These foods 
weren't causing 'big' celiac reactions, but minor symptoms that I 
hadn't associated with Celiac before (like small rash on my chest).

6.
I ate Russel Stover Sugar-Free items (which all say that it is made 
in the same facility as products containing wheat) for months before 
I finally accepted that it was causing my DH. If I had experienced 
worse symptoms, I would have given it up much quicker. And, it's 
because of these products as well as Smucker's Sugar-Free products, 
and others that have made me as vigilant as I am.



.....okay. That's enough for one e-mail. Replies on motivation and 
compliance in my next post.

Thanks to everyone who responded so helpfully and thoughtfully.

Mary Brown
NYC

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