<<Disclaimer: Verify this information before applying it to your situation.>>

I would like to take an informal poll.  How many of you think that
fanaticism and paranoia have becoming a problem in the celiac community?
How many of you think that the health risks associated with very low levels
of gluten consumption justify this fanaticism for most celiacs?

Please read the rest of my letter discussing this issue before you send me
your vote.

For some time, I have wanted to write a letter about the problem of
paranoia and fanaticism among celiacs.  In writing this letter, I recognize
that I am bound to offend many people and that I will probably receive a
bunch of hate mail, but I think this issue is serious and needs to be
discussed.  Let me apologize in advance.  Please do not take personal
offense at what I am about to say.  It is not a response to any specific
comments I have seen on the list server or to any individuals but rather to
a general atmosphere that prevails here and in many other US celiac groups.

First, let me explain the issue from my perspective.  I was diagnosed with
celiac disease last fall.  I immediately removed all major sources of
gluten from my diet and then started doing research on the subject to
eliminate the minor gluten sources.  With in six weeks of my diagnosis, I
was feeling great.  My serum iron levels, which had been about half the
normal level, were back up to the middle of the normal range.  In the past
nine months I have put on a lot of muscle, and I am feeling better than I
can ever remember feeling. Since my diagnosis I have never knowingly
cheated on the diet.  I've made a couple of minor slips but nothing big.
I'm not sure whether I have "celiac symptoms" when I eat a small amounts of
gluten.  Some day when I think I have time to be sick (yeah right, when am
I ever going to have to get sick), I may try eating some gluten just to see
what happens but I haven't yet.

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.  I want to be able to lead a normal life with out
worrying about every little thing I eat.  If I'm not sick, how careful is
careful enough?  Unfortunately, the overt "celiac symptoms" are not a good
indication.  Research has shown that some patients can do a lot of damage
to the gut with no symptoms and while others show severe "celiac symptoms"
with no observable damage to their intestinal villi.  If I can't tell
whether I'm damaging my gut by how I feel, How can I tell?  I can't go for
a biopsy after every meal and I don't want to spend my whole life worrying
about whether I'm getting traces of gluten.  Worry alone is bad for your
health.  Psychological factors have been shown to have a strong influence
on our immune systems both for bad and good.

All the US celiac organizations recommend a zero tolerance limit for
gluten.  While I understand their reasoning, I think that this zero
tolerance is promoting paranoia and fanaticism that are ultimately harmful
to the disease.  Everyone agrees that it is impossible to achieve the zero
gluten level.  Because our organizations promote "zero tolerance" they
don't prioritize the risks.  Cous cous is listed right along with vanilla
extract.  They give us no help in determining what things we should worry
about most.  Because of their recommendations, many US celiacs have become
paranoid.  Not only do they avoid foods that every scientific source claims
are safe, they are insistent that celiacs who don't follow suit are harming
themselves.  The problem is well summarized by a health care professional
quoted below.

"Many celiac patients in the US are avoiding anything made with grain
alcohol, shampoos with wheat germ extracts, white vinegar (which is mostly
made from corn-based alcohol), and so on. Some are concerned to the point
of wondering whether they should induce vomiting or use a purgative upon
accidentally ingesting gluten or ingesting what they think is "hidden
gluten." Is this justified?  . . . I think the question coming up here is
something like this: if you have no obvious response to gluten, are you
doing yourself harm to, say, use vanilla flavoring that comes in a (wheat)
grain alcohol base. I think the chances of harm from this are not worth
considering, yet apparently large numbers of celiac patients in the US
wouldn't think of using such an alcohol-containing flavoring."  (From
Maximum tolerable level of gluten, pg. 11,
http://rdz.acor.org/lists/celiac/mxgluten.html,  Copyright by Michael
Jones, Bill Elkus, Jim Lyles, and Lisa Lewis 1995, 1996).

I think this type of paranoid behavior is very damaging to the celiac
community.  Besides making our lives unnecessarily difficult, it tends to
promote the perception that we are all "kooks", "nuts", or hypocondriacs.
It makes starting the celiac diet very confusing and overwhelming for newly
diagnosed celiacs.  The denial and depression experienced by many celiacs
might be reduced if the diet could be simplified.  Health professionals
agree that there is a much larger problem from celiacs who eat grams of
gluten a day because the diet is just too hard than there is from celiacs
who accidentally ingest a few mg.  This 0% gluten rule make it very
difficult to deal with many manufacturers.  Many manufacturers who are
unwilling to produce a gluten free list because they can't guarantee that
the dyes and flavorings they use weren't processed with a grain based
alcohol.

I know that the position of this list server and many of the US celiac
societies is that until scientific proof is found for a maximum tolerable
dose, they will promote 0% gluten.  They maintain that celiac patients
should decide with the help of their doctors whether this standard is
appropriate for them.  The unfortunate reality is that most of us are
treated by doctors who have only one or two celiac patients.  Most of our
doctors only knowledge of celiac disease is the few paragraphs in the
common medical reference books.  We end up educating our doctors about the
disease.  It would be terrific if each of our doctors would take the time
to survey the current medical research and then help us to understand
exactly how to apply that research to our situation.  They reality is most
doctors won't do that and most patients do not have sufficient medical
training to be able to understand the medical literature on their own.  We
all end up doing our own research on this disease and it can be very
difficult to distinguish what is a valid concern and what is not.

Because I am an engineering professor and have been involved in medical
research for the past 12 years I feel very comfortable going to the medical
literature and evaluating the current research on celiac disease.  Based on
my surveys of the literature and my personal knowledge of biochemistry and
my discussion with my doctor I have been able categorize different risks.
For example, a typical slice of wheat bread weighs one ounce.  If I assume
that the bread is 70 percent wheat flour and wheat flour is up to 15%
protein.  That means that 1/100th of a slice of about 30-mg of gluten.
This is right in the gray area where it might cause damage.  To me, that
means it's worth my time to avoid crumbs.  On the other hand, one Tbsp. of
distilled vinegar made from a wheat based alcohol contains at most (this is
a very conservative upper limit) 0.0005 mg of gluten.  This is 20,000 times
less than studies indicate is the maximum allowable dose.  That's a big
difference in risk.

I know accepting 10mg as a safe dose of gluten is very controversial but
can't we at least agree that 20,000 times lower than that is safe for the
vast majority of celiacs?