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Valerie Wells <[log in to unmask]>
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Date:
Tue, 15 Oct 2002 20:11:36 -0700
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<<Disclaimer: Verify this information before applying it to your situation.>>

I originally posted my doubts that we would ever see an effective enzyme
pill that would enable celiacs to eat whatever we want [lasagna] as long
as we take a pill.  Most people said they had been thinking along those
same lines, but that a gluten/gliadin splitting enzyme pill might be
useful when eating out to possibly make us safer from accidental
ingestion.  Others shared very interesting thoughts on genetic
manipulation and possible drugs targeting the immune system.  A few were
angry that I posted my opinions & sent me personal criticisms.  But one,
Kelly, who disagreed with me, very courteously responded with information
about related studies from Stanford.  I didn't include Kelly's response
with my summary because I felt it was too long, but encouraged her to
post it to the group independently. Here are samplings representative of
the responses I received. [My comments are in brackets.]
---------------
I don't know as though I'd want to try it.... I think you've definitely
got something there though on the possible profit!!! Let's hope more
money comes in!!   ~Diane
-------------
Unless somebody could prove its complete effectiveness I would probably
use it only in a social situation where I would still avoid obvious
gluten but would be at least somewhat protected from the accidents and
contamination. ... To me, the ideal would seem to be discovery of a
process that somehow removes the trigger or poison from the wheat before
we even ingest it. With genetics the way they are today, I would think
this could be possible. Probably not much money in it though and how
would you get everybody to use it in their products?  ~Richard
------------
I had very similar thoughts.  If even a little gluten can damage people,
and knowing that an enzyme can't digest ALL the gluten in anything, then
this pill just isn't going to work.  Perhaps it does have application
though when you go out to a restaurant - just as extra protection in case
some gluten does sneak in - to reduce it as much as possible.  The
downside of this is then that people might get the wrong  idea and might
assume they can be careless.  I would like to see the enzyme used in
industry, to consume the gluten in foods - perhaps to digest gluten in
rye before distilling off the alcohol, just to minimize contamination.
In reality, I think that would be very expensive, and I think for the
meantime at least, nothing is going to change.  It makes me wonder what
the celiac diet will be like in ten years!  ~Ingrid.
---------------
I must say that I think you are right.  The very fast reacting people are
probably allergic as well as intolerant (different reaction pathway for
this than intolerance). As the Radiation Protection Adviser of a fair
sized UK University with both a Medical School and a Vet School and with
my own background as a research technician, I am more than somewhat
suspicious of what I have so far seen (and I still haven't had time to go
get our latest password - from the Med School Library - so I can read the
actual paper).  There are two possible scenarios which I always hold in
mind:
-That the researcher may claim more than the facts warrant
-That the media may make unwarranted claims for the value of some
research
-These two are not even mutually exclusive.
I'm more concerned because I feel that the gut reaction <sorry, but not
very> of an old researcher is that there are several different types of
coeliac.  They may be differentially sensitive to differing gliadins
(using "gliadins" in the broadest, most generic sense).  We know that
spelt lacks the alpha gliadin and that there are coeliacs who claim that
it is safe to eat (it maybe for THEM). I would be unsurprised to find an
eventual classification of 4 or even 6 types of CD.  They might be
sensitive to differing polypeptide chains, and we might therefore need
more than one magic pill (if they work)....On the positive side, imagine
being able to go to a party where they have TRIED to produce GF food, and
not have to worry about the odd crumb of cross contamination (this is
what my wife, the coeliac of our house, said she'd feel was a great
advance, even if it could only do that and no more). ~David Walland
----------------
I seriously doubt there is any way to bind the enzyme to every single
gliadin molecule to prevent reaction.  I certainly won't be in front of
the pack that gives this a go, as much as I would like to.  Besides, I
just had lasagna last night, with Tinkyada noodles...can't tell the
difference anymore.  But maybe this can lead to some sort of genetic
replacement that would allow us to react like non-reactives.  I didn't
say non-celiacs, because
now I am wondering if intestinal involvement is just a fraction of the
problems of gluten ingestion. God, am I turning into one of those leaky
gut/ wheat is poison nuts?  Maybe so!  ~Kit
---------------
This is not related to that directly, but I just went out and bought a 12
pack of Michelob Ultra. Here's the story:
Someone ... recently posted a message(link) that had a lot of g/f drinks
on it.  Smirnoff Ice was on it, and that is a cooler brewed with a barley
malt.  I confronted the company and they are aware of the protein in
barley and said that it might affect some celiacs.  It has a very high
sugar content so that turned me off. (I'm a T-1 diabetic) ... I called
the Budweiser company to urge them to make a g/f beer, and the rep told
me that Michelob Ultra is made from rice, but barley is used in the
brewing process and in fact is turned into amino acid during the brewing
process. ...Here is my line of thinking.  I will be 63 years old next
month.  I have been on a g/f diet over 6 years without cheating once.  I
am going to at least drink one bottle of it.  My wife is on a low-carb
diet and will help me out as it has only 2.6 gms of carbs.............so
go ahead and blast me. ~Charles in SC
[Go for it, Charles!!!]
--------------
I don't believe you are correct about celiacs reacting to gluten contact
anywhere in the GI tract. I have never heard that from any reputable
medical source. People who react instantly to gluten are having allergic
reactions, not celiac reactions. The two reactions are separate disorders
and probably don't involve the same peptides as allergens (that would be
pure coincidence) so the "glutaid" pill almost certainly wouldn't help
those people. ...  ....However, I agree with all your other comments.
Gluten concentrations in food of more than a few hundred PPM have been
shown to be harmful to celiacs. Using a thousand PPM as a round
proven-harmful number translates into a requirement for the pill to be
99.9% effective within the hour or two that the gluten resides in the
stomach before travelling on into the small intestine. I'm sceptical that
that is achievable. ...   ~Tom

[Dr. Braly & Ron Hoggan describe a rectal challenge test for celiac
disease in his book, "Dangerous Grains" that involves measuring the
immune response after a gluten slurry is instilled rectally.]
-------------
I have had similar thoughts.  I am lactose intolerant ...  I have found
that taking enzymes to digest milk sugar has no effect.  ... It might
seem to work (i.e. reduce symptoms in less sensitive people) but I think
the major league celiac docs will be very hesitant about this approach.
It would take long term research to verify whether damage to the mucosal
lining was occurring.
------------
Should be made more effort to force food and drugs processors not to mix
that stuff everywhere, unless is necessarry.  ~Kevin
------------
[This fresh perspective from Carol]
I think gluten is a snap, compared to trying to go soy, dairy, corn and
pork free, and actually envy those whose only problem is gluten.  Dairy
and the lack of cheese is the big one for me.  I guess it is all in the
perspective.  Then on the bright side, I think about the Children of
Israel, wandering around in the desert upset because they only had manna,
or others who can't even get enough food for subsistence, and I thank God
for all the fruits, veggies, meat, fish and breads and deserts I can
have.  I guess we are spoiled as Americans, but I am thankful for all the
substitutions.
------------
I'm not a scientist or medical person but I, too, have doubts. And my
intuition seldom fails me. Something doesn't ring true in this new
research and you may have put your finger on it. All I know is that I
won't be first in line for trials. -deb
------------
In one news article I saw Joseph Murray at Mayo quoted as saying
essentially the same thing about the enzyme - that it would have to
completely break down all of the gluten to be effective.  Diane
-----------

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