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To date, I have received 91 responses to my poll on fanaticism in the
celiac community (I did not include those that have been posted to the
list).  There is no way I can effectively summarize every point made in
these posts but I will try to hit the high points.  There were 49 responses
from people that felt fanaticism was a distinct problem, 26 who thought
that the health risks justified extraordinary caution, and 16 who seemed
split down the middle.  Some people were offended by my use of the terms
"fanatic" and "paranoid".  Please don't be.  I'm afraid tact is not one of
my virtues.  The terms mostly reflect the way I often feel about my own
state of mind.  Happily, I received little hate mail; I've had worse from
posts I though were far less inflammatory.  Some of you were worried about
me cheating on the diet.  Please don't be.  I am following a diet which is
probably stricter than that which is recommended in every country but the
US and will continue to do so.

In reading through all of these posts, there were several things that
became clear but which are hard to summarize from short quotations.  Many
of the people who posted seem completely unaware of the relative risks of
different foods.  They tended to put a piece of french bread in the same
category as a teaspoon of vanilla extract.  If there is one thing the US
celiac organizations could do better, it would be to help celiacs
understand these relative risks.  Maybe they could come up with catagories:
1) Things that are absolute no no's  (bread, pasta, HVP, etc.)  2) Things
that are controversial because they have measureable gluten levels that are
below the Codex limits.  3) Things that are controversial because they
might be cross contaminated 4) Thing that are controversial because they
are made from a gluten containing grain but have no measurable remaining
gluten.  This kind of list would help a lot of people.

I found it interesting that most of the people who thought that
hypervigilence was justified had been very ill prior to diagnosis and many
of them still experience hyper-sensitive reactions.  It's easy to
understand how that kind of experience would tend to make you super
careful.  It would be stupid for me to advocate that anyone eat anything
that makes them sick.  Still, it is incorrect to assume that just because a
food makes one celiac ill, that food harms all celiacs.

Because this post is so long, I will put my summary first so that it is
more likely to be read.  My questions were intended to address long term
health effects and were not aimed at immediate gluten reactions.  As I
stated in my original post "Now that I am feeling well, my concern is about
how carefully I need to monitor my diet to insure that I do not suffer any
long term health problems like lymphoma."  Based on the responses to this
poll, there are many celiacs who feel the same way.  We want some clear
guidelines from the medical community and the celiac societies that will
help us to assess the real risks of eating different foods.  We want to
take every reasonable precaution to safe guard our health with our
constantly worrying that some tiny gluten slip will kill us ten years down
the road.

It helps me to put numbers on things.  If you ingest 10 mg/day of gluten,
you have eliminated 99.98% of the gluten in a typical diet.  If you eat a
tablespoon of distilled vinegar a day, you are getting at most 0.000001% of
the gluten in a typical diet.  The extra effort it takes to eliminate that
tiny fraction of a percent of gluten from our diets is enormous.  Assuming
that we have no symptoms of maladsorption and that we are feeling well, is
it worth the effort it takes to eliminate that last molecule of gluten in
our diets?  While it is impossible to prove that such low levels of gluten
cause no harm, no scientific study, of which I am aware, has found any long
term health risk associate with ingestion of trace amounts of gluten.  It's
great that we have specialty food companies like KinnickKinnick who are
willing to manufacture 100% gluten free foods.  But research into every
ingredient, preventing cross contamination, detailed labeling which are
required to meet that standard cost companies a lot of money.  That's why
gluten free foods costs so much.  Considering this, how can we get the FDA
and large food companies to cooperate with us if we are pushing a standard
that is scientifically untenable?

Here are some selected sections from some of the letters

Kinnikinnick Foods Inc. :  " There will be probably no general answer to
this, as all celiacs and/orgluten intolerant people are totally
individualos in their reactions to gluten.

I guess the answer would be to do exactly what you are doing on a personal
level. To determine what you except for your own standards. If you feel
fine to eat certain foods and only go by symptoms,that is fair. You would
have a hard time however to justify the same measures on your celiac
friend. Although it is true that there are higher levels of risk foods and
lower ones like flavours, it is also true that a lot of celiacs get sick
from very low levels like flavours.

As a manufacturer we can only go by zero tolerance in manufacturing and
processing glutenfree foods, regardless of the reaction differences of
customers.  This will provide safe foods without being fanatical about it.

If after that you decide for yourself to take chances can only be an
individual decision."

"As a physician (My specialty is public health.) and recently diagnosed
celiac, I agree with you that this is the case. . . . IMHO, CSA/USA is the
primary cause of this.  They have many items on their "forbidden" lists
(like buckwheat and guar gum) that do not contain gluten, but that "some"
celiacs have problems with.  I'm not sure how they decide what goes on the
lists, but it just makes life a lot harder for all of us.  (At least they
describe the vinegar controversy fairly well in their literature.)  I just
wish they would be more scientifically rigorous before they add items to
their lists. . . . Celiacs in other countries seem to do just fine on less
restrictive diets, leading one to believe that the US groups are overly
cautious.  (I personally wouldn't recommend eating items containing wheat
starch, which is permitted in some European countries.)"

"I have recently stopped my membership with CSA in part because of the
subject that you wrote. I don't believe that it's necessary to go to the
extreme limit that they propose. This diet can be hard enough. To go to the
extent that they say you should go is too much for me.
        While I cannot deny that there are those who do react to distilled
vinegars and they would be better off to avoid them, I cannot believe that
their reaction is due to gluten. I don't think it is fair to say that
distilled vinegar should be exempt from a gluten free diet. Nor do I agree
with quinoa, millet and other grains being exempt from a gluten free diet."

"I am a non-celiac mom w/a 5 yr. old celiac daughter.  I constantly
struggle to find a comfortable place between paranoia and complacency.  By
complacency, I mean, letting her have a product w/distilled vinegar, or
when in a social situation letting her have I am
something I'm reasonable sure is gf, but not 100% sure is gf"

"thanks for speaking out, I was wondering if I was the only one
who wondered about some of the folks out there.  Sometimes I think maybe
people are having an allergic reaction to something besides gluten when
they have such an immediate, severe reaction."

"Bravo!! You have expressed my thoughts far better than I could have. I
have been on a gf diet for over 15 years. If I worried  about
inadvertent gluten ingestion as much as  many of the people in this
community, I would destroy my quality of life, if not my mental health."

I also completely agree with your belief that the 0% tolerance policy that
the US groups carry is what causes manufacturers to run scared.  We live in
a time of severe litigation, and if they are wrong who is to say that
someone won't sue.  I did notice heightened paranoia during the great
vinegar discussion of last month (I think that was when it was).  It is
chemically (according to a couple of different chemists I have talked to)
improbable that we are being affected by white vinegar, yet many of the
posters kept claiming that they were affected and that the rest of us are
wrong.  I do think that for the most part we are shooting off our own feet
as a group.  Such heightened and encouraged paranoia are what make the
various communities (medical, food, restaraunt) wary of us.  Add to that
fact, the problem that the major celiac groups (GIG, CSA, etc..) do not
agree on what causes us problems and what doesn't.  It is no wonder we
don't get more help and recognition from the non celiac community.  If we
don't know, how can they help us?"

"I can not help but agree with you that there seems to be a wide-spread
paranoia in the celiac community.  Partly due to this paranoia, I did not
subscribe to this list for more than a year -- I just got too depressed and
annoyed from reading messages about not being able to ingest vinegar, vodka
and vanilla flavorings.  I felt there was a border-line militant attitude
about the zero tolerance for gluten."

"I often tell friends that the particular foods I have had to give up aren't
the hardest part of Celiac Disease.  I can live without pizza or beer or
(wheat) pasta.  What wears me down is never being entirely sure, especially
when I'm eating out, that what I'm eating isn't going to make me sick.

Now, I realize that there's going to be some of that uncertainty from now
until the time I depart this Earth, but it's especially hard to achieve even
a reasonable level of comfort when most salient voices of the Celiac
organizations, it seems, treat gluten as some kind of malevolent force, a
single molecule of which is endowed with magical powers to injure at great
distance.  Worse still, there is a kind of Celiac Orthodoxy at work, whereby
the "purest" attack the opinions of those who, say, think that the presence
of wheat starch in charcoal briquettes or wall board is not worth fretting
over."

"Yes, as a mother of a 2-1/2 year old celiac child, I made myself a near wreck
this past year by overseeing any threatening foods.  I think as a parent, it's
even harder when you're responsible for a child's welfare.   At least celiac
adults can choose to venture into gluten-risk areas ... and go by trial &
error.   But, when a child is in your care, you feel an obligation to bring no
harm and may be overcautious.  Yes, I wish there clearer guidelines about
certain foods such as vanilla & vinegar.  It would take the fear out of
every bite that goes into my son's mouth.  I would love some relief!"

The information I dont have and would like to get is, how much gluten is
there in foods.  This is especally important for those food which only
contain a little.  A labeling standard which allows a statements like
"Gluten in a single serving is less than 1mg" might make a lot of
off-limit foods available.

"From my perspective, in a country where Codex Alimentarius wheatstarch is
allowed, this means that I am reluctant to post as freely to the List as I
otherwise might -  for example, I would not feel comfortable posting a
recipe using a wheatstarch-based flour mix, despite the fact that I use this
all the time.  I know that other European coeliacs are also using it and yet
I rarely see this mentioned even though this is meant to be an INTERNATIONAL
list, so I feel there is a sort of self-imposed unwritten censorship at
work.  I would like to see a more truly international list where all
coeliacs would feel comfortable and not have to apologize that their diet is
less strict even though they are following the advice of the Coeliac Society
in their own country."

"Too many people are in denial or as we use to say have their
heads in the sand and are just too lazy to take the extra time and effort
to take care of themselves.  Only half the members listed on the roles of
my support group ever show up.  Of those only half seem to think it
necessary to pay much attention to their diet especially when eating out
because they don't have severe symptoms. Many of these people were luckier
than they know, they actually had doctors who knew something about CD and
so were Dx before serious symptoms or damage had occurred.  This is amazing
to me since I struggled so long to find out what was wrong with me and have
had so much damage done to my health.  What is even worse is the attitude
among family members of many celiacs.  Personally I cannot get anyone in my
family (even those with obvious symptoms) to even have a blood test (much
less read literature) to determine the possibility of their having celiac
disease.   In my estimation, often, if a person hasn't suffered enough they
can't appreciate the blessing of being able (to a great extent) to have a
large role in determining the status of their health.   The exception to
this rule seems to be the majority of contributing members to this list!
So I will reiterate, fanaticism NO, borderline indifference YES !"

"Why do people like yourself try to impose your own thinking on others
based on the fact that this or that does not bother you. The real
question here is not why people who have real and often severe
consequences to gluten ingestion react with what you think is paranoia,
but rather why you are trying to gauge what happens to others based
solely on your world of experience.

Is it such a big leap of faith for you to believe that others may be
suffering different and more severe consequences to gluten ingestion
than you?"

"As far as the difficulties that newly-diagnosed celiacs have in
restructuring their life around a gluten free diet, well, those are the
breaks, and they may as well get angry and then get over it. We have every
right to expect manufacturing companies to comply with our demands if they
want our money!!!"

"I can see what you mean about being paranoid over a GF diet,
but I'd rather be safe than sorry.  There have been so many controversies
on this list about amaranth, quinoa, buckwheat, vinegars, etc.  Until some
professional can tell me that these things are safe,  I try as hard as
possible to stick to the lists that I have of foods that are proven to be
GF.  I make just about everything myself and rarely eat out."

"I'll vote for the fanaticism.  Many people are totally uneducated about foods.
If the shoot for 0 gluten, they'll still have enough accidents to reach any
allowable amount.

Last summer in a local restaurant, I asked the waitress if there was any wheat
in a certain dish on the menu.  She asked the cook.  The reply from the cook
was that she used all purpose flour and did not know if there was any wheat in
it.

If that cook were to be diagnosed with celiac disease, how would she handle
her diet?  I'm suprised at the what people do not know.  It is sad.  Until
people are better educated they are safer being fanatics."