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From:
George & Gayle Kennedy <[log in to unmask]>
Date:
Sat, 29 Jan 2000 08:55:20 -0500
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<<Disclaimer: Verify this information before applying it to your situation.>>

This message relates to the recent information

>on the LIST about the differences between allergy, intolerance, and celiac
>disease...
>
>My question to the list is two fold. How can we believe what the medical
>professionals tell us, when their literaturem presumeably written for the
>patient sitting in the waiting room to read, says that celiac disease "is a
>type of food intolerance involving the immune system" and that people "with
>intolerances can sometimes eat small quantities of offending foods without
>any side effects."   And, more importantly, why are they saying that celiac
>disease is an "intolerance," when they have just said that an intolerance
>involves the metabolic system and gluten-sensitivity involves the immune
>system and is, by their definition, an allergy. The author and the
>profession seem to have trouble admitting that we celiacs have a foot in
>both camps.
>
>Has anyone on this LIST ever tried using an antihistamine to deal with a
>gluten-reaction?  Does anyone know of any medical testing along those
>lines?
>
>The irony of all this is that I have recently had ALLERGY treatments that
>have removed my gluten sensitivity.  Does that mean that I was a celiac who
>had a reaction to gluten in my immune system, indicating that the reaction
>was an allergy and could have been cured with antihistamine? or does that
>mean that my reaction to gluten was an intolerance and, by the definition
>in this article, involved a metabolic problem?...or is there a third
>category called celiac disease that is neither allergy nor intolerance, but
>a combination of the two?

************

First, let me say that I received one irate response saying that returning
to a gluten-containing diet after allergy treatment was life threatening
and dangerous and that I was endangering the lives of list members by
writing about it.  A very emotional message that I did not save,but later
decided  it needed to be included in the summary.  I apologize to the
sender for not saving that message.

In response, I'd like to say that a gluten challenge for three months has
always sounded dangerous to me - making one's self sick in order to take a
test...Returning to gluten has not made me sick in any way.

********

>Great article and great questions!!!  Sorry I can't answer any of them.
>Look forward to what you get.

********

>The confusion seems to me to be the result of letting a
>journalist into a medical problem.
>
>The etiology of coeliac is still far from clear.  The
>evidence that many coeliacs CAN eat tiny amounts of gluten
>is in my view unequivocal (though I seldom put it that way
>on the list).  The number of poor tests for this are
>legion, while the ongoing MAJOR numbers tests (totally
>blind) in the UK, Denmark and Sweden for certain, involving
>numbers not dissimilar to 100,000 coeliacs (because they
>don't know any different) are ignored.
>
>Incidentally, if it's any comfort to you, I doubt many
>doctors really understand the allergy/intolerance
>differences.  I certainly wouldn't dare to claim I've got
>it right (but then I'M not a medic).
>
>I THINK that the part of the immune system involved in
>coeliac is intracellular, while the part of the immune
>system involved in normal allergy reactions is
>intercellular.  There also appears to be an element of
>damage before the disease appears.  Recent papers (one
>published in Danmark Teknisk Universitat by a Mexican PhD
>student seems to have clarified a good deal about previous
>theories as to what was happening - she appears to have
>shown that this theory is not possible) have cleared the
>decks for action, I suspect, rather than actually finally
>pin down "the cause".

********

>I got the tape from the Louisville KY blood screening.  (It was a very poor
>quality tape, but the info was excellent.)  Either Dr. Horvalth or Fasano
>explained that the immune system makes several types of antibodies--A, G, E,
>& others (don't have the tape now or I would look it up).  True allergic
>reactions are typically IgE reactions.  Celiacs reactions involve the IgA and
>IgG antibodies.  Blood tests for celiac disease detect these types of
>antibodies.  Most of them look for IgA sensitivities. Unfortunately about 1
>in 500 don't make IgA antibodies, so those test don't work to detect their
>celiac disease.  They have to rely on the one test that is IgG sensitive and
>a biopsy.  Since there are fewer tools to use, diagnosing them is more
>complex.

********

>Something that might help clarify for you (in my limited understanding) --
>IgE is the antibody seen in allergies (causes the Histamine release) and can
>be normal levels in Celiacs.  IgA is what they measure when looking for an
>antibody response to gluten. You could have had both.
>
>I'd like to add an "Amen" to your opinion of the medical community!

********

>You are right....   It seems that the more information that you are
>exposed  to...the more confused you become, on all but one topic.     I
>find that as long as I remain totally GF that most of the  problems stay
>at bay.   And it's been the most relief that I have had for years now.

********

>I just read somewhere that the biggest sources of food intolerances in
>North america are wheat and Lactose. In Asia the biggest source is rice.
>Since Wheat is in everything we eat, don't you think we're just getting too
>much of a good thing?

********

>I live on benadryl and I still got all the diarrhea and constipation and
>other digestive problems anyway.  Getting rid of the wheat and gluten fixed
>it. :)
>
>I have a LOT of allergies, mostly to dust and airborne stuff.

********

>If you get a good answer, please post it to the list.  I'm sure there are
>many of us who are interested in the answers to your questions.
>I was diagnosed last May, and there are times now I still wonder if the "life
>sentence" is accurate.  I know I was very ill and now feel like my old self
>since going gluten free.  I don't want to be sick again, so I don't cheat,
>but I still wonder if there is another answer.

********

>I am not a medical professional, but from what I have read and learned,
>allergies are generally IgE mediated and will respond to antihistimines
>whereas celiac disease is IgA mediated and will not respond to
>antihistimines.
>
>There are also non IgE mediated responses and an example of this might be my
>son who throws up and has diarrhea after eating shrimp.  You can study this
>further in the JAMA December 10, 1997, Vol 278, No 22.  If my son had an IgE
>mediated response, then he would probably have hives or have trouble
>breathing.
>
>The  JAMA (Journal of American Medical Assoc) journal that I recommended you
>look into, goes into all the allergies, intolerances, even Celiac disease
>and they give a pretty good description of it.

********

>I am not a professional, rather a sufferer with a strong scientific
>background.
>
>Perhaps my problems can be illustrative of the true nature of the
>problem with many advanced celiac sufferers.
>
>I target my first problems starting ~18 years ago with a case of walking
>pneumonia. Over the next 15 years, like the rest of the USA, I too
>starting eating lots of pasta.
>
>Three years ago after a couple of major anaphylaxis type reactions I
>started the process of going GF.
>
>My disease has progressed to the point where I am not only gluten
>intolerant but highly allergic to most foods. When I am exposed by skin,
>by breathing, or by eating I develop subcutaneous hives or an early
>stage of the histamine cascade reaction (allergic reaction).
>
>My allergic reactions are directly related to my celiac damage.
>
>Here is how:
>The original gluten damage left me unable to properly absorb vitamin
>B-12.
>
>This in turn reduced the amount of stomach acid (HCL) that I produced.
>As I eat meat (one of the few foods that I can eat) the stomach with the
>reduced HCL production is unable to properly breakdown the meat proteins
>into short chain amino acids which can then be absorbed with little or
>no problem. Since the partially digested amino acid chains are longer
>than normal, when they are absorbed into the damaged intestinal wall the
>immune system sees them as invading microbes. The immune system attacks
>the area causing swelling that further inhibits my ability to absorb
>B-12 there by completing the circle. So what started out as classic
>celiac symptoms caused by wheat intolerance has evolved into real
>allergic responses based on increased intestinal permeability and low
>HCL production both caused by the celiac damage.
>
>In my case, I have begun B-12 shots with some promising results. My
>intestinal pain is diminishing, my appetite is reduced, and I am slowly
>becoming less reactive. The hope is that when I can stabilize my HCL
>production and reduce my reactivity, I can begin taking L-glutamine to
>heal my gut and chromalyn to reduce my reactivity. Whether I will ever
>be able to eat more than the 6-7 foods I can eat today remains to be
>seen. If I can become less reactive and less likely to die from a
>allergic reaction, then I will be satisfied that I can lead a more
>normal life.
>
>PS - If we can get some good discussions going on the List about ways
>members have found to survive CD, then maybe all this what is the latest
>chocolate recipe chit-chat will go away and the number of truly useful
>posts like yours will increase.

********

>Thanks for the interesting post.  I am curious to hear about your responses.
>Because my daughters' health issues cleared up almost immediately after
>diagnosis (which was quick as well), I have not spent too much time
>researching this facet of CD, but rather the psycho-social implications of
>growing up in our society with this disease.  This week's issue:  slumber
>party for my 10 year old, with pizza and ice cream cake, and another child
>who is invited to the same party who tends to make fun of my daughter because
>of her CD (this is Elizabeth's perception anyway).  I am glad to read posts
>like yours that bring my understanding of CD to a new level.

********

>I am not a medical doctor (PhD in genetics with lots of biochemisty), but
>it is my understanding that a typical allergic reaction and the celiac
>reaction differ in the mechanism of the immune system response. In a typical
>allergic reaction - the immune system directly attacks the foreign
>substance that has been introduced into the body - by bee sting or eating or
>whatever. It is my understanding that, in celiac disease, the immune response
>commences when the gluten (or gluten-derived polypeptides) has in some
>way interacted with the intestinal villi (binding in some way?). Then the
>immune system attacks the villi - or the gluten/villi complex - not the
>gluten per se. Thus the mechanism is not quite the same as that for a true
>allergy. And since this happens in the intestinal tract (which is
>theoretically outside the body), a full scale allergic reaction is not
>triggered within the body. I am a biopsy diagnosed celiac - with no overt
>symptoms. I do try pretty hard to stay gf, but with essentially no overt
>reaction - it is difficult to tell if I have accidentally ingested gluten. So
>I'm not sure if this is correct but this explanation makes sense to me
>because it seems to explain my case.

********

> that's a keeper.  It certainly does define some of the
>differences.
>
>According to what you've quoted, the author does use "one exception" with
>respect to intolerance and celiac disease.  What probably should have
>been re-emphasized in later paragraphs is that intolerant people, celiacs
>excluded, could eat small amounts of the offending foods without
>consequence.
>
>Antihistamines are clearly noted for allergies, not for intolerances.

********

>I would put celiac disease in the third camp of autoimmune
>diseases--I like to think of it as an autoimmune disease where the
>environmental trigger is known.  Many other autoimmune disease
>sufferers are not so fortunate.  I went to the cell biology conference
>in Washington, D.C. this year and someone had compared the wheat
>gliadin sequence to the known parts of the human genome and had found a
>number of different human genes that were similar to gliadin.  The
>proteins made from those similar human genes are all potential sites
>for attack of our own tissues by the immune system.
>
>I think perhaps a letter to that magazine is in order.

********

> I am not a professional, but I doubt any  "professionals" can clear up
>this issue about allergy vs. intolerance. I believe  the only true
>professionals are the people with celiac disease, and if I ever  find a GI
>with CD, I will be ecstatic!

********

>Here is the web site where you may be able to ask your questions.
>http://www.gastro.org/digest/index.html

********

>I confess I'm as confused as anyone about allergy/intolerance....  I
>just know I can't eat gluten and am hoping for a cure.

********

>I am not a medical professional, but I would like respond to your review
>of a general article about food allergies and intolerances.  This article
>seems technically accurate, but missing some of the in between details
>that would help one understand better the difference between celiac
>disease, food allergies, and food intolerance.  The article only briefly
>mentions celiac disease and I don't think it intended to give advice on
>celiac disease or really focus on celiac disease at all.  Here are some
>excerpts with explanations which I hope will make the sparse information
>available in this article more clear.
>
>Traditionally, a true food "allergy" involves the immune response of IgE
>antibodies.  Food "intolerances" involve the inability to digest certain
>food because of the lack of digestive enzymes or other factors.  People
>with "celiac disease" have a gluten intolerance PLUS they are genetically
>predisposed to react to gluten with IgA and IgG antibodies which causes
>damage to their intestines and sometimes their skin.
>
>While people with celiac disease do have an immune response to gluten,
>this is not a true food "allergy" because it does not involve elevated
>IgE antibody levels.  So to answer another question, traditional
>antihistamine blockers would not be useful in treating celiac disease
>since antihistamine blockers only affect IgE antibodies.
>
>Generally, it is true that people with food intolerances can sometimes
>eat small quantities of offending foods without side effects.  However,
>this is not the case with celiac disease because the immune system is
>involved.
>
>It is possible to have an allergy to gluten without having celiac
>disease.  This would be the case for a person who has IgE response to
>ingesting gluten, but no IgA and IgG response and consequently no damage
>to the small intestine.
>
>I believe it may also be possible to be intolerant to gluten without
>having celiac disease.  This might be the case if a person experiences
>discomfort when trying to digest gluten, yet tests negative to all
>allergy and celiac tests.
>
>The article ends by suggesting   www.foodallergy.org   as another
>recourse.
>
>I too have been impressed with the information available from FAN (Food
>Allergy Network) and recommend that anyone interested in food allergies
>visit this excellent site.

>I am glad allergy treatments have helped you with your ailments.  It
>sounds as though you may have a true food allergy.

********

>Interesting!  Actually, my take on that would be that they were stating
>that celiac >is a gluten intolerance (true) with allergy-like reactions (true
>in some cases).
>
>And it is true that we can tolerate a certain very low level of gluten (or at
>least the europeans would like us to), but what the article really fails to
>mention is that unlike a straight food allergy or intolerance, a celiac who
>ingests gluten is doing damage to her body that may result in morbid effects,
>such as cancer.
>
>I too went through an "allergy" treatment to reduce my reaction to wheat
>gluten, and it definitely worked - but I'm still very gluten
>intolerant/allergic/celiac/whatever.  Just now I don't nearly pass out when I
>encounter it, I can still breathe, and the "attacks" don't last three days!
>
>It boggles the mind what they can print - betcha they didn't check with a
>celiac organization or doctor before printing that!

********

>It comes down to trust and critical thinking!

********

Long winded, but perhaps helpful to some.  Thanks to all who responded. Gayle K

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