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This post addresses the question,  Is the concern expressed in this list
and elsewhere in the celiac community about minimal gluten exposures
excessive?  I hope this discussion is interesting to others, and that
people will post directly so we can all see the full breadth and depth of
responses.  Apologies to any listies who are put off by the volume and
length of this and other related posts.

Down further, if you're willing to stick with me, I respond to the aspect
of this that focuses on what the science means and doesn't mean
concerning "safe' levels of gluten exposure for any given individual.
First I want to give a full response to the fanaticism/paranoia question.
 In that area, I have to be clear that my perspective doesn't pretend to
be more scientific than personal.   I really don't think that anyone can
consider this question and escape a response that reflects their personal
experience  (or lack of it)  regardless of academic training or intent.

What extent of concern about gluten exposure is excessive?  This question
reminds me of the anecdote about Kinsey's definition of "promiscuous".
Kinsey's definition: "Someone who has more sex than you do."  Similarly,
whose concern about gluten exposure is excessive? Someone whose concern
is greater than your own.

I don't expect anyone who hasn't experienced reactions to minute levels
of gluten to understand that experience -- such experiences are too far
beyond the norm.  By the same token, I know that I can't expect those
outside it to fully understand the concerns a repeated pattern of such
experiences are likely to induce, either.  Nonetheless, some of us do
have these experiences, and we have concerns that arise from them.

An understanding response to such unusual and mostly private experiences
is a blessing.  The impulse to trivialize, minimize, deny  or discount
such experiences is only human nature.  Before I was thrown into the
realm of these experiences personally, I was guilty of such responses
myself.   These experiences _do_ defy common sense ideas of what it
should take to provoke illness.

However, regardless of how reasonable such skepticism may be, I know that
I was sick  this week.  I was sick because one night I goofed, and in the
dark I grabbed the "wrong" tooth paste. I spat it out and rinsed my mouth
immediately. The amount of any grain based substance that could have
gotten into my system from this brief exposure has to be incredibly tiny.
But yet I was ill.

I have had a number of such experiences during my learning curve with
this condition.  Most of these experiences were "blind" in the sense that
I didn't know I had consumed something likely to contain a trigger.  Most
often, I would get sick and then have to go about eliminating things to
isolate the problematic substance. Sometimes I would take a known chance
(e.g. new brand of chocolate with apparently safe listed ingredients),
and get burned. Often the process of figuring out the source was
complicated by denial. This was certainly the case with Rice Dream. I
love the stuff, came only reluctantly to the conclusion that I had to
eliminate it, and even then went back to it a few times before I got
tired enough of the consequences.

The impression I get from talking to others I've met, through the local
GIG, and through reading publications and the posts to this list, is that
such experiences are not  uncommon -- not universal, but not uncommon.
Once the condition expresses itself,  many seem to find that they have to
keep striving and striving to become careful enough with the diet before
they get relief.  Over and over, they find they have to study and work
and take additional levels of care beyond what they ever thought
reasonable, necessary or even possible, with illness as the consequence
of failure. I don't expect anyone who hasn't gone through this experience
to understand it, either.

From experience, I now know that the amount of these substances needed to
make me  ill is minute. I learned this by getting sick, sometimes very
sick, over and over and over again, and suffering the misery, limitations
on activities I keenly wanted to get out and enjoy, the discomfort, the
profound fatigue (and anger and grief) of those experiences, until I
learned exactly how careful I had to be to stay well.

Would I describe my behavior concerning food as hypervigilant?
Absolutely.  Moreover, when I've gotten ill, I tend to become afraid of
eating for awhile and to stick to foods with which I feel super safe.
Even when I've been careful and well for awhile, I don't try new foods
much.  (When should make those experiments? On Friday night, so if I'm
wrong I'll be sick all weekend? During the week so if I'm wrong I'll miss
more work? Is any food really worth the risk of another bout of illness
with the loss and discomfort that entails? How does one answer these
questions?)  Do I consider this kind of  hypervigilant thinking and
behavior irrational given the circumstances?  I don't.   The limits
imposed by the condition are extreme.

Nor do I wish these concerns or the difficulties involved in watching the
diet that closely on anyone. It is a true disability -- an unwelcome
limitation against which I frequently chaff, and which I hate.  I didn't
start out with the assumption that I'd be among the super sensitive.
Quite the opposite. I didn't imagine that there was such a thing as a
"wrong" toothpaste. I started out assuming that concern about gluten free
toothpaste was excessive. My beliefs changed reluctantly, and only
because my experience demanded it.

At the same time, I know that there _are_ psychological factors in play,
as well as reality problems.  When I'm ill with this stuff, I experience
depression and moodiness.  (Some of that is from simple  dehydration.  I
experience a full blown reaction as being much like garden variety food
poisoning, which also can have those kinds of impacts on the emotions.)
Will this depression color my attitude toward the world around me? That
is what it means to be depressed! Might it amplify my reality based
concerns (discussed above)? Pretty likely.

The immediate stress of illness aside, the nature of adjusting to a
disability is by itself difficult, and involves sadness, grief and anger.
 Adjusting to one that is invisible, difficult to adapt to,  and
susceptible of being so easily misunderstood and discounted by others, is
even more so.  The mistake/illness dynamic is by its nature anxiety
inducing.  It can also be difficult not to experience it on a feeling
level as punishment or an attack.  As Jax Lowell puts it:  you have to
forgive it; it doesn't forgive you.

Do these experiences color my attitude toward the world around me and
amplify my concerns, or at least how they are expressed? Unquestionably.

To go a bit further:  Little could be more natural than the wish to be
able to eat freely without discouragement or unpleasant consequences.
One doesn't have to be Sigmund Freud to imagine that chronic frustration
of this wish would result in certain problems.  Might one's reactions to
those frustrations spill over into one's attitude toward,  just for the
sake of discussion, the manufacturers of Rice Dream?  Of course.

So, some of us have personal experiences which demonstrate, painfully,
the reality that minute amounts of gluten can indeed have an effect on
us.  For a lot of reasons, we might ALSO have a chip our shoulders.
Neither factor negates the reality of the other. And, unless we segregate
the existing community into separate communities of more and less
sensitive individuals, we are going to hear about each other's
experiences and concerns.  I think we need to try our best to respect
each other's truths, and accept that they may be different.

Myself, if I didn't react to Rice Dream, I'd probably be drinking it
daily and defending it as innocuous. I'm not that good at thinking
outside my own experience.

As to the science involved, I don't think anyone can claim it provides
much in the way of absolutes.  The immune system is an extremely complex
and subtle thing that is only beginning to be understood with any depth.
As with any other discipline, do enough well-constructed studies, and you
will probably develop a sound basis on which to found some useful
generalizations. They will still be just that, generalizations.  That's
why the best doctors learn the odds well, and play by them, but always
also remember that they are just that, only _odds_,  not rules.

Most people aren't sensitive to gluten at all.  Does that mean it is safe
for everyone? Hardly.  Perhaps it has also been proven that most people
who are sensitive to gluten aren't harmed by some minimal amounts of it.
I'm not entirely clear that this has been proven; but, if so, it is great
news.  Would it mean that these minimal amounts are universally safe for
everyone?  Such an absolute negative (no possible harm) is very unlikely
to ever be proven.

Given a lack of absolute knowledge, one is in the realm of personal
judgment.  At that point, I don't think one can do better than to advise
careful study and consideration and respect for personal experience.
Everyone gets to choose some of their own risks in this life.  On the
other hand, my guess is that there are more gluten sensitive people out
there being harmed by lack of knowledge and denial than by excessive
care.  Which perspective should the community's communications primarily
address? Regardless of the answer, I certainly don't think we should
sensor our own internal dialog.