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Part 1

Some time ago I sent a message to the list about my reactions to white,
distilled vinegar, and about a previous posting that seemed to me to deny
the possibility of those reactions being related to gluten. I'm sorry to
say I don't have a copy of that original post. In part my response was:

"I happen to be one of those who cannot tolerate white, distilled
vinegar. No problems with other vinegars - rice, balsamic, wine, and
cider vinegars are just fine for me. Even thought I have no problem with
balsamic vinegars, I have recently read a posting from someone who has a
negative reaction to that, as well. [My recollection is that this list
has been told that balsamic vinegar is not made from anything that
relates to gluten/gliadin, but I could be mistaken.] It seems to me that
the recent postings on that subject have denied the possibility that
some of us really do have celiac or celiac-type reactions when we
accidentally - or even intentionally - ingest distilled, white vinegar.
Yet there was a most forceful posting on Tuesday stating that the odds
of that happening were like the odds of winning the lottery - 50,000 to
one, or whatever the number was. This is one lottery I would rather not
have won.

  I find that the statements about gluten/gliadin/celiac type reactions to
distilled vinegar being well-nigh impossible deny the realities of my
situation, and there must be a few others on the list who fall in the same
category or there would not have been so many posts about this topic. I
think this LIST needs to be mutually supportive, rather than accusing
others of malingering or having an "it's all in your head" reaction.

I wrote that it is only a very infinitesimally small part of the gliadin
molecule that actually causes celiac problems - not the whole gliadin
molecule. Is that correct? Is it possible that that mini-microscopic
fragment is indeed small enough to get thru the distillation process?

As we have established on this list that some celiacs present with
diarrhea (steatorrhea) as a major symptom, while others have
constipation, and a few even have only irrational anger or DH as symptoms
of celiac disease, I think we have learned what many doctors seem to have
trouble accepting - that is that gluten/gliadin cause(s) different
symptoms in different people. We also know that some people are only a
little bit sensitive while others react to a mere crumb on the butter or
from the toaster. No one on the list denies the differences in reactions
to the same type of poison.  It seems that denying symptoms of some of
the group in  talking about distilled vinegar is a real insult to the
person or persons who has/have celiac symptoms after ingesting distilled
white vinegar.

The posting then went on to mention that some alcoholic beverages are
distilled from gluten-containing grains and have been found BY SOME to
cause celiac-type symptoms.

Here follows a partial section of quotes pro and con that came in after
that message: [I can find no way of including sources without contacting
everyone, so here are first names only, with two exceptions]

***
 From Bill K:
 First I'd like to congratulate on a very good, very well thought out
argument.  I rather enjoyed reading it, and seeing that I am not the
only one on the list who will avoid gluten derived products.  I'm a
scientist myself, and I refuse to believe that these products are free
of the portion of the gliaden protien that proves to be toxic to we
celiacs.  (The main reason is that many companies do not produce their
products under the same scientific conditions that are present in the
lab.  For instance, part of the primary mash is frequently added to the
distilate when whiskey is made, meaning that the whisky contains
protiens from the mash)

***
From Joanne:
The only thing I can say conclusively is that many distilled white vinegars
cause problems for me.  Not all,  But many.    Not only do they affect my
GI tract, but they also make a itchy, papular, then oozy rash on my sacral
spine area erupt.  It is easy to blame the GI effects on other
possibilities.  However, to my knowledge, nothing except gluten can cause a
DH rash to erupt.  Therefore, *I* choose to avoid it because it *appears*
as if many distilled grain vinegars and alcohols contain gluten.

Even saying this, there will be people who doubt me and will make all
kinds of suppositions because they choose to believe otherwise.  However,
this is MY truth, *I* know it, and anyone can argue with me until they are
blue in the face, and it won't change my reality, nor my interpretation of
it.  To me, distilled vinegars can and do contain gluten.

***
WITH THE NEXT POST I HAVE INSERTED A COUPLE OF RESPONSES IN ALL CAPITAL
LETTERS
From Jim Lyles:
I don't doubt that there are many people who react to distilled vinegar.
But I am inclined to agree that this reaction is NOT due to any gluten
content in the vinegar.  I believe this is a separate sensitivity.

The distinction is quite important.  If the reaction were from gluten,
then all celiacs would need to avoid distilled vinegar (with one caveat--
I'll get to that later).  If the reaction is not from gluten, then most
celiacs would be able to consume distilled vinegar.  This second view
seems more reasonable to me, especially after Bonnie's excellent post on
the distillation process.  So if distilled vinegar causes you problems,
then of course you should avoid it.  But if it doesn't bother you then
I believe it is perfectly safe to consume.

 I DON'T THINK ANYONE HAS EVER SAID THAT OUR REACTIONS TO DISTILLED
VINEGAR ARE A SEPARATE TYPE OF ALLERGY AND NOT CELIAC RELATED.
On the contrary, I believe that is the case, and I think others have
suggested this as well on the list in the past.

 IF WE CAN TOLERATE OTHER VINEGARS THAT DOES NOT SEEM LIKELY.  AND THE
DISTILLED VINEGAR IS, AFTER ALL, MADE FROM A GLUTEN CONTAINING GRAIN

Okay, now it is time for the caveat.  SOMETIMES distilled vinegar is
made from a gluten-containing grain.  But quite often it comes from corn,
simply because corn is a cheaper source.  So if you find yourself
reacting to ALL distilled vinegars, that is further proof that it is
not a gluten reaction, but some other kind of sensitivity.

HERE I MUST SAYA THAT I WAS COMPLETELY IN ERROR.  I HONESTLY THOUGHT THAT
ALL DISTILLED WHITE VINEGAR IS MADE FROM WHEAT.

IN RESPONSE TO MY STATEMENT THAT PERHAPS GLUTEN WAS "GETTING THROUGH THE
DISTILLATION PROCESS, JIM WROTE:

It is not a question of "getting through".  It is a question of whether or
not the gluten proteins (or peptide fractions, or whatever you call them)
can evaporate along with the alcohol.  It seems pretty clear they cannot.
This is fairly consistent with other proteins, such as those found in
meats, bread, etc.; none of these proteins can be "boiled away", which
(as I understand it) is essentially what you do in the distillation
process.

I do not deny the symptoms that some people have after consuming
distilled vinegar.  I do not claim it is "all in their heads".  It
seems clear the symptoms are the same as those from consuming gluten; of
course many people have these same symptoms after consuming lactose,
soy, MSG, corn, or any number of other foods.  What I do disagree with
is the notion that these symptoms are caused by gluten.

I SAID:WE ALL SEEM TO AGREE THAT ONE CAN HAVE FOOD SENSITIVITIES IN
ADDITION TO GLUTEN SENSITIVITY.  THE PRODUCT UNDER DISCUSSION, WHICH IS
DISTILLED FROM WHEAT, SEEMS TO FALL IN A DIFFERENT CATEGORY FROM THE
OTHER ITEMS THAT BILL MENTIONED.

Not if you take into account that a lot of distilled vinegar comes from
corn, and therefore cannot contain toxic gliadin/gluten.

THIS LAST PARAGRAPH REFERS TO AN EARLIER POST FROM DR. BONNIE TYLER:

Bonnie made it clear in her second post that the process used to make
distilled liquors is completely different, and therefore any liquor
derived from a gluten grain is suspect. I agree with this. But distilled
white vinegar is an entirely different matter. It often is distilled
from corn, and even when it is distilled from wheat it seems clear that
the end product would have no gluten (so long as none of the source
material is added back in to the distillate, but in that case it would
no longer be pure distilled vinegar).

***
From Alex: Has anyone considered that the vinegar sensitivity may
have nothing to do with its gluten content, which one chemical engineer
has pointed out, but that one may have been conditioned to elicit a
physiological response because they have ingested products with vinegar
and gluten in it? Even after taking gluten out of your diet, which does
not not have a noticeable taste or smell (to my knowledge), the vinegar
can clearly be detected by a person's powerful sense of smell and have
could have made an association with the vinegar smell to remove the
offending food(s) from your body quickly. You may recall Pavlov,
Skinner,...etc. This can be, and most probably is, an unconscious
association.

This is my theory on the issue.  Any behavioral psychologists out there
who can shed some light on this issue?

To be continued.