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From:
George & Gayle Kennedy <[log in to unmask]>
Date:
Sun, 27 Sep 1998 09:52:30 -0400
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<<Disclaimer: Verify this information before applying it to your situation.>>

As my initial letter raised a question that is beyond my scientific
comprehension, I'll just send along the initial letter and the responses
and you can take it from there:

>Meanwhile, I want to run a thought by all of you that now seems NOT to be
>true, but I'd like your feedback.  When first diagnosed, I read and read
>in the U. of MN Medical Library about celiac sprue, and concluded that
>celiacs were missing some enzyme that would help us digest gluten. As a
>result of that reading, I theorized that if that enzyme could be
>identified and put in pill or liquid form, then we could all return to
>eating gluten with no ill effects, not unlike the way diabetics take
>insulin. (I realize that is an oversimplification.) I have seen nothing
>about that theory for years, and if Hirdler's ideas are correct, then the
>enzyme theory is of no value, but has anyone ever followed up on the
>enzyme possibility?

Responses:

>I'm pretty new to this (diagnosed about a month ago) but I'm currently
>receiving M.D. and Ph.D. degrees at the University of Iowa.  Although I
>haven't had the time to read up on Celiac's Disease as much as would like,
>the cause of the disease seems to be an inappropriate immune response to a
>particular peptide found in gliadin and other similar proteins in the
>other no-no grains.  One hypothesis as to why antibodies in the intestine
>are exposed to this peptide is that gliadin is an extraordinarily stable
>molecule that is refractory to sufficient digestion in the stomach.
>Gliadin may undergo partial digestion but it is not enough to cleave the
>reactive peptide into its constituent amino acids and thus render the
>peptide unable to illicit an immune response.  IF this hypothesis is
>correct, then an enzyme capable of cleaving the antigenic portion of
>gliadin would do the trick.
>
>I don't think we who have CD are lacking an enzyme, I just think that
>something about our immune system or our intestinal lining makes us
>reactive to the gliadin peptide (in other words I think that everyone is
>probably exposed to the gliadin peptide because of incomplete digestion
>but that some of us are reactive to it).
>
>Another possible way of dealing with CD is to generate genetically altered
>wheat in which the antigenic portion of gliadin has been mutated to
>something nonreactive OR mutating portions of gliadin in order to create
>less stable gliadin that is more easily hydrolyzed in the stomach.
>There may be a hint of truth in what Mr. Hirdler says about the genetic
>changes that have taken place in humans over the years but I don't think
>what he says invalidates your enzyme idea in any way.
>
>Cam Arrington

>You could do worse than go paleo! Go visit <http://www.panix.com/~paleo>
>and <www.sofdesign.com/neander> (the .com might not be in there, if it
>doesn't work, leave it out!)
>
>There is also, of course, a paleofood list, and the "technical" paleodiet
>list. :-)))
>
>Anne Washburn

>Gayle,  I addressed the replacement enzyme theory with my GI when I was
>first diagnosed over 25 yrs. ago and he explained that it would be
>possible to synthesize the enzymes but impossible to get them through
>the upper GI system (stomach) to the mid-gut where they are needed
>without them first being destroyed.  I like the idea but I'm afraid it's
>just that.  I do otherwise agree with Hirdler's notions that we possess
>immune systems that are simply out of sync with modern day life.  I
>don't know about others, but I seldom catch any of the common viruses
>that circulate on a seasonal basis and aside from the gluten
>restriction, feel myself to be pretty darn healthy (for an old man).
>All the best, Thom Haney, Duke University Medical Center

> Regarding the genetically altered wheat, the gliadin would
>still be present and giving wheat its appealing characteristics, it would
>just be changed in a way to make it more susceptible to digestion by the
>acid and enzymes in the stomach.  So in principle, a Celiac-safe wheat
>could exist someday (the only caveat is that it would probably cost an arm
>and a leg, but I guess some would give their right arm to eat well again.)
>
>Cam Arrington

>I have many food allergies and intollerances besides gluten and have assumed
>that there must be a digestive deficiency somewhere that could cure it if
>corrected; but there is no successful research on finding it. I have gathered
>from the failure that there must be some other explaination.
>Gmaldridge

>Yes, that was the thinking at one time, I'm not current on it.  However, the
>Europeans have worked steadily since WWII to attempt such a thing and have not
>found replacement possible.  Enzymes are tricky and they still are not sure
>that the 'missing enzyme' is the actual problem.
>
>Diet is easy and I eat just about everything.  Lack for nothing-even creme
>puffs and chocolate eclairs if I want them (rice flour based of course).
>Sadly, my excellent cook books (not that Hagman stuff) are apparently out of
>print.
>Sandy Rieser

>I'm sure Don Wiss will send you this address and you may already have been
>there, but just to make sure:
>
>http://www.sofdesign.com/neander
>This book by Ray Audette is probably the best out on nutrition. He cured
>his own Rheumatoid Arthritis and diabetes eating vegetables, meat, fruit,
>nuts and seeds. The Neanderthin site will take you to Don Wiss' Paleolithic
>Diet Pages and the address for the Paleolithic List.
>Read Roger MacDougall's article about curing his MS paleolithically.
>I have never had more energy and all symptoms of disease have disappeared!
>Susan Carmack

>Arthur Hirdler has raised an interesting hypothesis.  However, it raises
>many questions.  In particular, how is celiac disease different from any
>other auto-immune disease?  It would seem that ALL auto-immune type
>diseases are part and parcel of a superior immune system.  This type of
>labelling  seems to be a question of  semantics.
>
>-MS patients, for example, have been shown to have elevated titers of
>antibodies directed to a number of viruses (19) including measles and
>herpes simplex.  To date, the adeno -12 virus appears to be the virus
>researchers link to celiac disease.  Yet, not all celiacs show elevated
>titers of antibodies to this virus.  Given the recent study which suggests
>a link between measles and autism and inflammatory bowel disease, perhaps
>studies are warranted to determine if in SOME cases, measles vaccine and
>other immunizations such as oral polio virus are somehow involved in the
>appearance or worsening of symptoms seen in celiac disease.
>
>Hirdler states that in celiac disease, this superior immune system  defends
>against some organisms for which most non-Celiacs lack defense.  It would
>appear that this does not include all  organisms such as Candida and
>certain bacteria such as those involved in urinary tract infections.
>Otherwise, these infectious agents would not be seen as complications of
>untreated celiac disease.   Our superior immune systems seem to be
>incapable of warding off these infectious agents, particularly when gluten
>is being ingested.
>
>Like you, I would very much like to see studies done to determine if the
>deficiency of an enzyme(s) required to completely break down the peptide
>chains of gluten is somehow involved in celiac disease since untreated
>celiac patients show increased levels of these peptides in their urine.
>Marilyn McCool

That wraps it up.  Interesting subject - still up in the air I think.  GK

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