<<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