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From:
"David D." <[log in to unmask]>
Date:
Mon, 24 Mar 1997 02:42:40 EST
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<<Disclaimer: Verify this information before applying it to your situation.>>

Kemp,

This topic seems to be hitting a few of my hot buttons, so I felt inclined to
add my comments:

>> to insist on an absolutely gluten free diet for all who are sensitive to
gluten.  That leads to commercial companies signing off on GF lists, as Kraft
has done.  We can safely have some variety in our diets with the right
attitude.

We *can* have some variety in our diets AND insist on an absolutely gluten free
diet.  I do it all the time, and am quite fine with it.  Kraft has its own
business/political/legal reasons for declining.  It all depends upon what your
definition of variety is.

However, I cannot accept that someone who has a healed intestine will
automatically be excluded from having a *celiac* response which is of an
immediate nature.  First, I wonder what the definition of immediate is.   If
immediate is bloating a couple hours after eating, and diarrhea a couple days
later, it seems quite likely that there could still be a non-allergic, non-IgE
mediated reaction responsible for this.  It could be IgG reactions if such
antibodies are still in circulation... which I'm sure they are to some degree
(not necessarily postive test level... but any will be reactivated if the
offender comes back on the scene again).

To extend that further, it may have nothing to do with allergic reactions at
all.  There could also be a psychogenic component triggered by presence of
proteins, etc. which could cause immediate vomitting.  I'm not saying its *not*
a legitimate gluten response just because the word psycho- is in there  Many
studies, starting from the time of Pavlov, have shown that such responses can
and do occur on the subconscious level.  The subconscious mind is often more
aware of and tuned into reality than the conscious mind is!

The point is, we know it can and does happen.  We don't know exactly why in each
individual case.  Yes, IgE could be one possibility.  But then, so could there
be others, equally valid, which should not be scoffed at.  The key to remember,
is individuality.  Even in the best of science, we have standard deviations, and
confidence intervals, etc.  In such tests, there are always those which are
normal who are still outside three standard deviations.  There are also those
who are abnormal, and still fall within normal ranges.  These are, in fact,
false positives (which are mentioned all the time) and false negatives (which
are rarely mentioned, and sometimes even denied).

The point is, all humans are individuals and until every individual factor in
each and every person can be accounted for on an incident by incident basis,
nothing will (CAN) ever be completely 100% accurate!  That is a problem that
science has not, and probably will not be able to solve in the next couple
generations of lifetimes.  Because of that, it is prudent to take everything,
scientific or not, with at least a small grain of salt.

I have personal experience whereas I have fallen in the most incredible of odds
(at least three different times and circumstances) where I fell into the .1% (or
worse) category!  Indeed!  I find myself wondering how ONE person could fall on
that side of the odds so often.  So unusual this seems to me, that I find myself
questioning the tests themselves, and science itself, for failing me so often!
Indeed, my experience with science, hence my faith in it, has been somewhat
weakened.  When a mother knows her baby is sick, she KNOWS her baby is sick,
regardless of what science says.   Sometimes the mother DOES know best!  There's
nothing more powerful than one's gutt intincts! <pun intended>

>>Neuropathy, only through vitamin deficiency (K and E)

Well, I think this IS an assumption.  We know that such vitamin deficiencies can
and will do this over a prolonged period... but is that the ONLY possiblity?
There could be other causes of neuropathies in an individual that are immuse
mediated, which become triggered if the immune system in activated.  I believe
this is an accepted medical fact.  In the case of celiac disease, it may be
possible that some antibodies reside in and around nerve tissue the same way as
they are in skin tissue (DH), which become triggered into action (inflamatory
condition) upon exposure to gluten?  That is my personal medical hypothesis
which I came to after personal experience.  In fact, I doubt if skin and nerve
are the only ones... I'd also suspect other connective tissues may be involved
in such a process.  It is certainly logical!  Unfortunately, more celiacs will
have to become cadavers and volunteer themselves for study to confirm this.

>> Another  autoimmune caused by eating gluten? NO, NO, NO.
...
>> Genetic connection only: each autoimmune diease has one or
more pairs of genes plus an environmental stimulus that cause it

Hmmm.  Isn't that what DH is classified as?  Is it possible that there are
others which have not been identified yet?  Couldn't the eating of gluten BE one
of the environmental stimulus that triggers other genetically predispositioned
autoimmune diseases?

Further, to state that an environmental stimulus is required is actually
conjecture itself.  No study has ever PROVEN this to be true.  It is assumed
because of some reports of increased incidences following a handful of different
events... but this is all just speculation which remains to be proven.  No one
*knows* if the trigger to autoimmune disease is environmental, or internal.

Perhaps the timing of autoimmune diseases are encoded in the DNA along with many
other things.  To date, science has been unable to account for the function of
over 90% of DNAs structure    Yet, we do know that many other functions of
timing in the human body are controlled by timing of DNA (like the rate of cell
division, etc.)  Since its still not known what triggers autoimmune disease
later in life, nor do we know all of what DNA does, yet we KNOW DNA is partly
involved in determining who will get autoimmune disease, it seems likely that
there are other functions of DNA that may be responsible for triggering it as
well.  This seems especially likely in the case of a timing question, since we
know it already *times* other events in the body.

Its always good to know what a study *says*.  It is just as important to know
what it *doesn't say*, and not assume it says more than it does.

Anyway, thats just more to think about.  Since there are so many people on the
list, and many may rely on such statements made here, I feel it just as
important to point out where there may be areas of, shall we call it, grey,
rather than black and white.

Joanne

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