<<Disclaimer: Verify this information before applying it to your situation.>>
 
Kerwin Myler <[log in to unmask]> said:
 
>I've been diagnosed for about three weeks now. .. snip...
>My gastro-enterologist seems to think that the occasional consumption of
>trace amounts of gluten will not be harmful. What do you think?
 
Kerwin, welcome to one of the central controversies of the celiac world!
Two months ago, we made a special post on this topic, which I will
repeat here for the benefit of other new subscribers:
 
Date:         Sat, 16 Mar 1996
From:         Bill Elkus <[log in to unmask]>
Subject:      CEL-PRO Summary:  Maximum Gluten Discussions
 
<<Disclaimer: Verify this information before applying it to your situation.>>
 
On February 8th, I sent the following post to the professional
discussion group on celiac ("cel-pro"):
 
>Much of the disagreement about products on the lay-Celiac List, and
>generally within the Celiac community, is ultimately due to confusion
>about the maximum tolerable daily level of gluten.
>
>Can anyone help?  Even though this issue is not fully settled (and
>probably varies amongst individuals), discussing even vague boundaries
>would still be very useful to Celiacs who are confronted with daily
>decisions on which foods to avoid.
 
This resulted in a lengthy discussion on the concept of how much
gluten a typical Celiac can tolerate in a day without damage.  The
listowners have edited and compiled the discussions, and have created
a downloadable file (about 15 pages) which anyone can access by sending
an email to [log in to unmask] with GET CELIAC MXGLUTEN in the
body of the message.
 
The Listowner's summary of (and commentary on) the discussion follow:
 
1) We should say at the outset that the everyday reality of many celiac
clinicians is that some patients are consuming thousands of milligrams
of gluten per day, either through lax attitudes or inadequate
information about what products contain gluten.  Therefore, a
discussion on the fine details of 4 to 100 mg of gluten may seem
esoteric to some clinicians.
 
2)  The maximum gluten question is inherently difficult to answer.
It's almost impossible to scientifically "prove a negative" -- i.e.
that no damage has occurred.  How does one define the number of places
to look for damage?  Just the intestines?
 
3) Even if a study could be designed to "prove the negative", it is
very hard to find confirmed celiacs willing to subject themselves to
experiments that may injure them, especially in sufficient numbers to
create a large study group.
 
4) The use of special low-gluten wheat starch in many European
countries, with its small (but non-zero) amounts of gluten, is seen by
some as establishing a de-facto lower limit where no damage has been
detected to date. One study (Ejderhamn) put this in the 4 to 14
milligrams per day range. Another European estimates it typically at
40 mg per day.
 
5) On the other hand, there was one study (Catassi) showing at 100 mg
gluten per day, some adverse changes in the intestine could be seen.
 
6) Most U.S. Celiac support groups, and some professionals, feel that
due to (a) the many current scientific unknowns, (b) the inadvertent
gluten consumed due to cross-contamination in the manufacturing
process of some foods, and (c) the availability of gluten-free
alternative foods, there is no reason to intentionally ingest any
amount of gluten.  Others feel this position is too extreme.
 
7) Personal symptoms may be an indication of gluten ingestion but they
are not scientific proof of gluten damage, or even of gluten ingestion!
There are other ingredients that can give false "celiac symptoms" in
allergic and/or susceptible individuals.  These symptoms are extremely
diverse and vary according to the individual and their sensitivity.
If you experience "celiac symptoms" then it is your personal choice
whether to avoid the product.  It is prudent to investigate the
product's ingredients and processing methods to determine the source
of the gluten or your personal "allergic reaction".
 
8) On the other hand, it is equally important to realize that the LACK
of "celiac symptoms" is NOT proof that no damage is being caused.
Celiac clinicians report many examples of previously undiagnosed
celiacs with abnormal biopsies and no obvious gastrointestinal
symptoms.  One value of a post-gluten-free-diet biopsy is to confirm
that your diet is working properly, even if you do not have obvious
celiac symptoms.
 
9) Our personal "bottom line" is that it is impossible to state with
confidence a limit below which no damage occurs from gluten, so we
attempt to maintain a zero-gluten policy.  However we recognize this
as our personal choice, not necessarily scientific reality, and we feel
it is inappropriate to criticize others who have come to a personal
decision to use a low-gluten diet.  (Remember that 40 mg of gluten is
contained in about 1/100th of a slice of regular full gluten bread!)
 
Sincerely,
Bill Elkus, for
The Listowners