This file contains postings made by the following professionals: Dr. Karoly Horvath--an associate professor of pediatrics ath the University of Maryland at Baltimore. Dr. Horvath set up the Pediatric Gastrointestinal and Nutrition Laboratory, and is now director of this lab. Donald Kasarda--a grain specialist working for the United States Department of Agriculture. Dr. Vijay Kumar--President of IMMCO Diagnostics. Dr. Joseph Murray--a gastroenterologist at the University of Iowa, USA, where they have a mutidisciplinary service for the clinical care of people with celiac disease. They are also involved with clinical research and medical education related to celiac disease. Paul Shattock--Senior Lecturer in Pharmacy, Autism Research Unit, School of Health Sciences, University of Sunderland; Sunderland, England. He is doing research on the relationship between gluten/casein and autism. His work has application to other developmental and mental disorders. ========================================================================= Date: Tue, 2 Jan 1996 00:24:58 +0000 From: "P.SHATTOCK" (hs0psh@ORAC.SUNDERLAND.AC.UK) Subject: Re: castor sugar? On Mon, 1 Jan 1996, Joy Garmon wrote: > After living abroad for a few years, I believe that castor sugar is > simply what we would refer to as regular granulated sugar. Castor > would be the term used in Great Britain. Hope it helps! TTFN, jg I am not an experienced or skillful cook but I can confirm that, in the UK at least, castor (or caster as some of the packets spell it) sugar is just ordinary granulated sugar but the grains are much smaller. Cooks seem to prefer it that way. I have seen my wife, in cases of emergency, grind up ordinary sugar in the coffee grinder to get smaller particles. If she overdoes it we get icing sugar. And you say TTFN in the USA too? Paul Shattock. ========================================================================= Date: Tue, 2 Jan 1996 11:54:21 -0500 From: Kevin Lawson (IMMTEST@AOL.COM) Subject: Re: diagnosis, blood tests and biopsies I enjoyed reading J. Murray s comments related to the diagnosis of celiac disease and agree that taking multiple biopsies is still the gold standard of diagnosing CD. However, I am sure he will agree that there are limitations in the histopathological methods of diagnosing CD. As we know, histological features occur in continuum, with flat lesions at one end of the spectrum and a mucosa with normal villus and crypt architecture but abnormally high density or count of villus intraepithelial lymphocytes at the other, which may be reported normal. In addition, patients with silent, atypical or occult CD may exhibit normal or mild villous atrophy and histopathology may not be diagnostic. The best example would be patients with dermatitis herpetiformis (DH). As we know, all DH patients have gluten sensitive enteropathy, but only 60-70% of DH patients exhibit characteristic histopathology diagnostic of gluten sensitive enteropathy. In this regard, there has been a constant effort to put forth a simple serological method that is a specific and sensitive indicator of gluten sensitive enteropathy. There are basically three antibody markers (ARA, AGA and EMA) that could be used for diagnosing CD and DH. Our studies indicate and corroborate with the others that the AGA test is a sensitive but not very specific marker of CD. On the other hand, ARA is very specific but not sensitive. We described in 1984 the endomysial antibody test and we felt very comfortable reporting that this EMA test has >99% specificity and sensitivity for gluten sensitive enteropathy. We reported cases of DH who were biopsy negative but EMA positive in which the histopathological changes consistent with CD could be induced on an increased gluten intake indicating thereby the sensitivity of EMA tests. The following table is a summative of our studies on the utility of various serological methods of diagnosing CD. Comparison of Sensitivity, Specificity, Positive and Negative Predictive Value of AGA, ARA, and EMA in ActiveCeliac Disease Antibody Sensitivity % Specificity % Predictive Value Pos. % Neg. % Gliadin IgG 88 92 88 92 IgA 52 94 87 74 Reticulin 65 100 100 72 Endomysium 97 98 97 98 I shall be glad to discuss the utility of serological methods in diagnosing CD with anyone interested. Vijay Kumar ========================================================================= Date: Tue, 2 Jan 1996 11:54:32 -0500 From: Kevin Lawson (IMMTEST@AOL.COM) Subject: Re: Dermatitis Herfetiformis I would recommend that your brother visit a local dermatologist. The diagnosis of DH could be based upon clinical presentation confirmed by immunofluorescent studies of a punch biopsy of the skin. The immunopathological studies of the biopsy of the skin are the hallmark of DH. These biopsies could be sent to any other specialized laboratory. Any questions? Vijay Kumar, Ph.D., FACB ========================================================================= Date: Tue, 2 Jan 1996 18:45:06 PST From: "Donald D. Kasarda" (kasarda@PW.USDA.GOV) Subject: wild rice Comments from Don Kasarda, Albany, CA I am not personally knowledgeable about wild rice, but my previous statement still stands as follows: "At least according to Hitchcock, Manual of the Grasses of the United States 1950, wild rice belongs to the tribe Zizanieae whereas oats belongs to the tribe Aveneae. I see no obvious relationship between wild rice and oats in Hitchcock's taxonomy." Furthermore, in Hitchcock's taxonomy, wheat, rye, and barley are in Tribe 3, oats in Tribe 4, rice in Tribe 9, while Zizanieae is the name of Tribe 10, millets are mostly in Tribe 12, sorghum is in Tribe 13, and maize (corn) in Tribe 14. The tribe number in taxonomy has a limited relationship to evolutionary relationship, but it is moderately safe to say that species with neighboring tribe numbers are more likely to be closely related than those with more distant numbers. Of course, taxonomies are not perfect, but in the absence of detailed molecular analysis of all possible proteins from all possible species, which we are not likely to have in the foreseeable future, they are about the best we have to go on. On the basis of Hitchcock's taxonomy then, I would say that wild rice and rice are moderately closely related (approximately as close as wheat is to oats), but both are fairly distant in relationship to wheat, rye, barley, and oats. As usual, there is always a potential for contamination with wheat (as someone else pointed out) and there is always the problem of human sensitivity (of a different type from that responsible for celiac disease) to many different components of the diet. Some people are allergic to rice and corn and probably some are allergic to wild rice as well, possibly through IgE immunoglobulin-mediated responses (celiac disease does not seem to involve IgE antibodies in any fundamental way and may somewhat arbitrarily be distinguished from an allergy in that respect). This is not meant to be medical advice. I am a wheat protein chemist, not an immunologist. Perhaps someone specializing in immunology will comment on the question of allergy vs. celiac disease and the extent to which they can be distinguished. If any taxonomists read the list, they may wish to comment on my interpretation of tribal relationships within the grass family (Gramineae) ========================================================================= Date: Thu, 4 Jan 1996 11:03:53 -0500 From: Kevin Lawson (IMMTEST@AOL.COM) Subject: Re: iso M.D. with clinical experience managing Celiacs CD presents with varied clinical symptoms and many patients in fact, may be asymptomatic and have a silent form of the disease. In addition, the classical presentation of the disease is rare in adults. Because of these factors many internists and even gastroenterologists may not have enormous experiences dealing with such cases. However, if you go to a gastroenterologist and present to him/her the possibility of CD in the differential it may help. Additional literature and testing information on this disease can be obtained From: IMMCO Diagnostics 963 Kenmore Avenue Buffalo, NY 14223 716-876-5672 Vijay Kumar, Ph.D., F.A.C.B. ========================================================================= Date: Thu, 4 Jan 1996 11:04:13 -0500 From: Kevin Lawson (IMMTEST@AOL.COM) Subject: Re: diagnosis, blood tests and biopsies Gluten sensitive enteropathy (GSE) is commonly referred to as celiac disease, celiac sprue, non-tropical sprue. Patients with gluten sensitive enteropathy are intolerant to gluten. The incidence of this disease varies. However, some of the recent studies indicate that its incidence may be as high at 1:300 and that many of the patients may be asymptomatic. As I responded above, GSE and CD are basically the same and there is a genetic preponderance as with other autoimmune diseases. Thanks for your questions and I hope the answers are satisfactory, Becky. Vijay Kumar, Ph.D. IMMCO Diagnostics IMMTEST@AOL.COM 1-800-537-TEST ========================================================================= Date: Fri, 5 Jan 1996 15:52:26 -0500 From: Kevin Lawson (IMMTEST@AOL.COM) Subject: Re: Blood testing for IGG/IGA There are basically three serum antibody tests that help towards the diagnosis of celiac disease. The specificity and sensitivity of these tests varies depending upon the test method and the skills of the laboratory performing the test. These tests will become negative in CD patients who are on gluten free diet. Our laboratory specializes in these and experience indicates that one month or longer on a gluten-containing diet should yield positive results in celiac patients. Vijay Kumar, Ph.D., F.A.C.B. IMMCO Diagnostics, Inc. IMMTEST@AOL.COM 1-800-537-TEST ========================================================================= Date: Sun, 7 Jan 1996 16:18:02 PST From: "Donald D. Kasarda" (kasarda@PW.USDA.GOV) Subject: mono- and diglycerides Comment from Don Kasarda, Albany, CA In response to past requests for information on mono-and digylcerides, although I didn't think there should be any concern about them, I had contacted a knowledgeable industry scientist for his opinion on whether these food additives might contain gluten or might be added to products with a gluten-containing carrier, such as wheat flour. I cannot guarantee the accuracy of his comments, but he is someone I have known for many years and whom I respect. On that basis, I provide his opinion. He felt that mono- and diglycerides are synthetic materials that are supplied in quite pure form to the food industry and that there is no reason he could think of why commercial users of these products would incorporate them with a flour or gluten containing carrier in conjunction with adding these products to foods that do not otherwise contain harmful grain components. On this basis, there does not seem to be any need for concern about mono- and diglycerides. Obviously, there are a great many users of mono- and diglycerides and someone, somewhere could mix them with some wheat flour (just as an example) before adding them to a product. This could be said, however, of any and every food additive or component and doesn't seem to me to be the basis for reasonable concern. Each of you should, of course, to make your own judgement in the matter. ========================================================================= Date: Mon, 8 Jan 1996 09:27:27 -0600 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) Subject: Re: CELIAC Disease and blood in stool Blood in the stool in celiacs may be related ot the celiac disease or not. Visible blood is usually not directly related to the celiac disease and needs to be investigated. Blood found on testing the stool( occult blood) may be related to the inflammation of celiac disease or it may be related to host of other problems, which include, eating red meat before the test, polyps in the colon, ulcers, bad esophagitis( from heartburn), anti-inflammatory drugs or aspirin, tumors in the colon, hemmorrhoids. The detection of blood in the stool needs careful evaluation by a physician to determine the individuals needs for further tests. Well treateedd and healed celiac disease should not give rise to positive blood in the stools. not medical information Joe Murray ========================================================================= Date: Mon, 8 Jan 1996 10:13:10 -0600 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) Subject: Re: CELIAC Disease and diabetes There is a an association between type one diabetes and celiac disease. Type one diabetes usually comes on before the age of 40yrs, is not associated with obesity before diagnosis and usually needs insulin therapy from the beginning. There medical ways to differentiate it form the so-called adult onset type or type 2 diabetes. The association is genetic in nature at the genes associated with type one diabetes and celiac disease are probably close together on the chromosome and may be more likely to be inherited together. There is much less of a connection between the adult onset ( type 2 diabetes ) and celiac disease. However damage to the small intestine from any disease may give rise to glucose intolerance and diabetes. Not medical advice JOE Murray ========================================================================= Date: Wed, 10 Jan 1996 16:47:47 -0500 From: Kevin Lawson (IMMTEST@AOL.COM) Subject: Re: Question on RAST test RAST testing is indicated in situations where one is allergic and the reactions are prompted soon after intake of the allergen. In your situation, the doctor is thinking that your son may have an allergic response to gluten. The type of antibody in allergic reactions is IgG. The other possibility in your situation is that your son may have gluten sensitive enteropathy (celiac disease). This disease is manifested by the presence of anti-gliadin, anti-endomysial, and anti-reticulin antibodies. I do not understnad why the latter group of tests are inconclusive. If I can get the results, I might be able to provide further information. You may want these tests repeated in another laboratory that specializes in this such tests. Vijay Kumar, Ph.D. Research Associate Professor ========================================================================= Date: Fri, 12 Jan 1996 16:37:31 PST From: "Donald D. Kasarda" (kasarda@PW.USDA.GOV) Subject: constipation/celiac disease Comment from Don Kasarda, Albany, California Probably the first published description (I think there have been others since) of constipation in celiac patients before diagnosis was published in 1972, where 12 out of 112 children were noted to have been constipated at some time before diagnosis. The exact reference follows: Bridget Egan-Mitchell and Brian McNicholl. 1972. Constipation in childhood celiac disease. Archives of Disease in Childhood 47:238-240. ========================================================================= Date: Tue, 16 Jan 1996 16:19:03 +0000 From: "P.SHATTOCK" (hs0psh@ORAC.SUNDERLAND.AC.UK) Subject: Re: Cream of Tartar On Tue, 16 Jan 1996 teeter@ARGON.MPIBP.UNI-FRANKFURT.DE wrote: > Several delicious sounding recipes like the refrigerator sugar cookies > that have been posted have cream of tartar included in them. I am > currently in Germany for 10 mo. and have not found the equivalent material > here. I'm pretty sure that it is a salt of tartaric acid but I'm not sure > which one. In German, Weinsaeure is tartaric acid and Weinstein is > presumably cream of tartar... Confirmation that "Cream of Tartar" is Potassium Hydrogen Tartrate C4H5KO6 known in German as Weinstein. Paul Shattock ========================================================================= Date: Sun, 21 Jan 1996 17:04:32 PST From: "Donald D. Kasarda" (kasarda@PW.USDA.GOV) Subject: Re: gf beer Kathy Coughlin wrote: >I've been intrigued by the idea of gf beer, which has been batted around >some on this list. My brother (who brews) says that if beer is well enough >filtered, all the protein will be removed. I tested the Negra Modelo with >the gluten-free pantry's gluten test kit and it came out negative. Although much of the intact protein may be removed in filtering beer, some proteins have been demonstrated to remain intact in commercial beer, although these proteins are not the ones that likely cause a problem in celiac disease. The enzmye action in malting and fermentation does, however, break down the intact hordein proteins (hordeins are the problem proteins) to smaller pieces (often referred to as peptides). These smaller pieces may have activity in celiac disease because it was demonstrated by Frazier almost 30 years ago that the combined action of the enzymes pepsin, trypsin, and chymotrypsin fails to deactivate wheat gliadin proteins even though they are broken down quite considerably by the enzymes. Finally, if the test being used is the Australian test, this is based on antibodies to certain intact proteins (omega-gliadins) that result from immunization of animals with the intact proteins. It is uncertain to what degree the antibody would react with the breakdown products of the C hordeins (which are the barley equivalents of omega-gliadins) that might be present in beer. They might and they might not. As far as I am aware, this hasn't been investigated or, at least, published. Consequently, the Australian test being negative for beer might not signify that the beer is safe for celiac patients. Further research on the type and structure of peptides in beer is needed to settle the question of whether beer contains any harmful peptides or not. If any harmful peptides remain in beer, however, the amount is likely to be small. Don Kasarda Albany, California ========================================================================= Date: Fri, 26 Jan 1996 23:58:42 -0500 From: jomurray@BLUE.WEEG.UIOWA.EDU Subject: re elderly celiacs I am responding with comments about the elderly individual with celiac disease. Quite a number of celiac are now diagnosed at an advanced age. Some as late as the mid 80's. The length of time they have been affected is unknown but in many there is a long history of suspicious symptoms or medical abnormalities. Many of the older patients may not entirely heal their mucosa. I am unsure why this is. I could speculate that it is related to more compliance problems, or more poorere generation related to age, or the effects of lifelong exposure to gluten. It may be a combination of these. I certainly have elderly patients who become quite well if they adhere to the diet. The other issue is whether there is an associated lymphoma. This can be the first presentation of celiac disease in an elderly person. Most nursing homes if they are the receipients of federal funds may be governed by the americans with disabilities act and if you regard a celiac as intestinely challenged, then that is a possible "stick" Not medical advice. Joe Murray ========================================================================= Date: Mon, 26 Feb 1996 10:21:00 CST From: "Joe Murray, M.D." (Murray@INTMED-PO.INT-MED.UIOWA.EDU) Subject: re elderly celiacs I am responding with comments about the elderly individual with celiac disease. Quite a number of celiac are now diagnosed at an advanced age. Some as late as the mid 80's. The length of time they have been affected is unknown but in many there is a long history of suspicious symptoms or medical abnormalities. It is possible that the CD has been there all along and just did not get bad enough to become symptomatic or to produce symptoms that led to the diagnosis. there are some cases of truly latent celiac disease where the intestinal biopsy was normal and then some years later the biopsy became flat. Many of the older patients may not entirely heal their mucosa. I am unsure why this is. I could speculate that it is related to more compliance problems, or more poor re- generation related to age, or the effects of lifelong exposure to gluten. It may be a combination of these. I certainly have elderly patients who become quite well if they adhere to the diet. The other issue is whether there is an associated lymphoma. This can be the first presentation of celiac disease in an elderly person. Not Medical Advice. Joe Murray ========================================================================= Date: Mon, 26 Feb 1996 11:07:00 CST From: "Joe Murray, M.D." (Murray@INTMED-PO.INT-MED.UIOWA.EDU) Subject: re skin biopsy for DH The skin biopsy is usually done by a deramtologist. Often 2 separate samples are taken one is processed in the routine way and the other is frozen and immunopatholgy is preformed to look for the skin deposits that distinguish DH from. The latter type of processing is essential. If this confirms the DH then that all that is necessary to show that someone has a gluten sensitive condition. If the patient or the doctor feel it is nbecessary to confirm that there is a lot of damage in the intestine then an intestinal biopsy is needed. The intestinal biopsy does not necessarily confirm that the skin condition is DH but makes it very likely. The bottom line is still a GFD if either biopsy is positive. the dermatologist may also offer mediaction to suppress the itch. Not Medical advice Joe Murray ========================================================================= Date: Mon, 26 Feb 1996 16:22:04 PST From: "Donald D. Kasarda" (kasarda@PW.USDA.GOV) Subject: maltodextrins Comments on maltodextrins (and on the list format) - from Don Kasarda, Albany, CA I have checked with two industry professionals who are with companies that make maltodextrins. They told me that as far as they know all maltodextrins in the US are made from corn starch and with enzymes that are not derived from wheat, rye, barley, or oats. On that basis, there seems to be little basis for concern about maltodextrins in relation to celiac disease. Of course, none of us can absolutely guarantee that there is not now or never will be someone or some company making maltodextrins from wheat starch and/or with enzymes from wheat, rye, or barley. With regard to the new list format--the new format is better for me as a professional because it was taking a long time to screen through so many messages to find which ones might be of interest. Subject headings are not generally of much help and so I open almost every message. Messages sometimes amounted to no more than a hello to someone else who had posted a message or a sentence or two of moral support to someone. I think these would have better been sent directly to the individual concerned. I try to reply to messages when I have special knowledge that is pertinent, but I am hard pressed for time, and I often don't reply if the subject has come up before on the list. I stick out the list partly because of my specialized knowledge, which I think may be of occasional value to people on the list and partly because of financial support I received in the past from "Road-to-a-Cure." Road to a Cure was a fund raising road race originated and operated for several years by Bill Green in New Jersey. His efforts have made it possible for me to continue a small amount of celiac disease research and to continue support for a key research assistant whom I would have had to let go for lack of funds. Out of gratitude, I try to be helpful to celiac patients in various ways, one of which is providing information to the Celiac BBS. I can understand the reluctance of many patients to give up the old format and I defer to the list owners in making an informed decision about what format to follow. I think they have done an outstanding job with this list at what must be an enormous cost of their personal time. They deserve great credit. I have seen the celiac patient organizations progress from early beginnings in the Midwestern Celiac-Sprue Association, Des Moines, IA, which I think was the first (organized about 1980 by the late Pat Garst, who asked me to be one of the group consultants) through so many excellent groups operating now, and on to the amazing high-tech world of this E-mail BBS. I can assure you all that progress has been almost unbelievable. The ignorance about the disease, grains, safe foods, and so on among patients was vast in 1980. Much remains to be done, particularly in informing the average physician in the US about how to recognize celiac disease, but the developments I have witnessed are simply astounding to me. I never expected the rapid progress that has been made since 1980, and, catalyzed by the Celiac BBS, is accelerating in pace. ========================================================================= Date: Tue, 27 Feb 1996 10:35:00 CST From: "Joe Murray, M.D." (Murray@INTMED-PO.INT-MED.UIOWA.EDU) Subject: re alopecia universalis and celiac disease I read with intereest the posting from the individual with alopecia Universalis. I have never seen a patient who has had both diseases. I would expect that there would be a slightly increased propensity for these to occur in the same individual or family as they are both autooimmune diseases. If the GFD affects the alopecia I think it would and should be reported in the mediacl literature. If the individual starts to feel generally better on the GFD but without improvement this can be due to severl things 1. they have CD 2. a placebo effect of the GFD 3. Some othe intolerance for a food substance that is also contained in the gluten food that is being avoided] 4. some other undefined reaction to gluten ( gliadorphin etc ) I think that a general proscription on gluten is akin to vegetarianism. It may be better for some but the evidence that it is good for all is lacking. Also while wheat is bad news for celiacs it is the #1 staple crop worldwide Not medical advice Joe Murray ========================================================================= Date: Wed, 28 Feb 1996 11:03:17 PST From: "Donald D. Kasarda" (kasarda@PW.USDA.GOV) Subject: white vinegar Comment from Don Kasarda, Albany, California As I have said several times before on this list, I know of no reason why celiac patients should avoid white vinegar. If it doesn't agree with you, I have no problem with that, but I don't think it should become yet another article of faith among celiac patients that it contains harmful gluten. There is no proof that it does and no proof that it doesn't, but you can say the same for hundreds of other food substances. And I recall vaguely that someone else posted to this list that they had checked with the Heinz people who said that they did not use alcohol from wheat in their white vinegar--although I don't think that is important. ========================================================================= Date: Mon, 4 Mar 1996 10:52:00 CST From: "Joe Murray, M.D." (Murray@INTMED-PO.INT-MED.UIOWA.EDU) Subject: Re UGI xray and celiac disease The use of an UGI xray to diagnose celiac disease is quite limited. The ugi xray consists of giving barium solution and then taking xrays of the stomach and intestines as the barium goes through. The barium blocks xrays so it shows up white on the black xray. The radiologist looks at the silluoette that the barium makes. This can tell alot about the lining. However the UGI cannot readily identify even most cases of celiac disease, because the damage is often microscopic. In the old days the barium was make by hand on site by mixing the powder with water and then drinking the mixture. This mixture was easily diluted by excess fluid in the intestine leading to a snow storm like appearance on the xray. The pattern was one often seen in untreated celiac disease due to the excess fluid in the celiac intestine. HOWEVER modern barium formulations are specially made not to diluted by intestinal fluids( it makes the siluoette clearer ) and hence areless sensitive for the diagnosis of celiac disease. This change known by most radiologists may not be known to the clinicians interpreting the tests as some of the old discriptions are still in the old textbooks. I use UGI xrays in some celiacs not to discover celiac disease but to look for complications, or other diseases such as Crohn's disease Not medical advice Joe Murray ========================================================================= Date: Wed, 6 Mar 1996 11:00:00 CST From: "Joe Murray, M.D." (Murray@INTMED-PO.INT-MED.UIOWA.EDU) Subject: re ceclor Our clinical pharmacist Had contacted Eli Lilly about the potential for gluten content in their products and they responded in writing to the effect that all of their drug products are not made with gluten containing substances. So as far as their professional liason people can tell us the Ceclor should be gluten free. Not medical advice Joe Murray ========================================================================= Date: Mon, 11 Mar 1996 12:23:00 CST From: "Joe Murray, M.D." (Murray@INTMED-PO.INT-MED.UIOWA.EDU) Subject: burger king stealth fries The name for the new fries from burger king "stealth" is ironic. I called the info line today and this is what I had found out. The stealth fries will be terst marketed in smae selected stores in some states. Any store that markets it willnot carry the regular Un-stealthy fries. It will be clearly marked at the drive up and in the store. There are none planned test sites in Illinois or Nebraska. The spokeswoman claimed that it would be obvious which stores carry it and the fact that a store will only carry one type makes cross contamination between french fry types very unlikely. The chain does get good points for voluntarily reporting this to the allergy network. If only other manufacturor's would be as open. She was not able to tell me WHY BK was introducing stealth fries at all. they are not lower fat. Not medical advice Joe Murray ========================================================================= Date: Mon, 25 Mar 1996 15:27:03 -0500 From: Kevin Lawson (IMMTEST@AOL.COM) Subject: Re: IS CD AN ALLERGY CD is not an allergic disease. It is an autoimmune disease and can be controlled by diet. If the clinical manifestations are gut related, you should see to a gastroenterologist. If there are skin manifestations, visit a dermatologist . Both of these diseases can be diagnosed easily by blood tests and biopsy studies of the skin. Vijay Kumar Research Associate Professor ========================================================================= Date: Mon, 25 Mar 1996 15:26:49 -0500 From: Kevin Lawson (IMMTEST@AOL.COM) Subject: Re: IS CD AN ALLERGY CD is an autoimmune response triggered initially by gluten resulting in an IgA-type immune response. It is not an allergic disease. Allergies are associated with hypersensitivity and IgE immunoglobulin response. Vijay Kumar Research Associate Professor ========================================================================= Date: Sat, 30 Mar 1996 10:17:07 EDT From: Bill Elkus (Bill_Elkus@JEFCO.COM) Subject: Cel-Pro on Saliva Test for Celiac Back on 7 Feb 1996 Elizabeth Welch (TertButyl@AOL.COM) asked: EW> Has anyone heard of IgA antibody testing done using saliva ("spit EW> test")? ..(rest deleted) And Lynn Worden (wordenl@ADSNET.NET) replied: LW> ....I know about that test--I have had the secretory IgA test from LW> Diagnos-Techs(it is specific for anti-gliadin antibodies). Dr. LW> Busher, M.D. of Bellevue, WA regards it as an excellent test. (snip) LW> LW> My ex-husband(John Thoreson) is very good friends with Dr. Ilias, LW> the research biochemist who developed this test and owns LW> Diagnos-Techs....I was told was that if my diet was scrupulously LW> gluten free, my IgA levels would drop, but probably not below the LW> 40's. When the levels get high, they never drop to normal ranges LW> again....All people have a titer of anti-gliadin anti-bodies on this LW> test, because gluten causes a small amount of villi damage in LW> everybody. (snip) LW> LW> I asked hard questions about the reliability of this test, and was LW> assured that it is highly reliable, with essentially no false LW> positives (well below 1%). I can't remember the rate of false LW> negatives....but it is also very low....It is a relatively new test. The Listowners forwarded this information to cel-pro and asked for advise. We received several replies which will be summarized below. In addition, Dr. Ilias provided me with enough test kits to try out my whole family. I can report that despite the above statement " When the levels get high, they never drop to normal ranges again"-- My Celiac son, whose endomysial, reticulin and gliadin antibodies were very high prior to his GF diet, had a single digit SIgA level on Dr. Ilias' saliva test. My whole family was well within the normal range, but his was the lowest! For those of you who want more information about the test, the labs' phone number is (206) 251-0596. The test only costs $30. It was more difficult to get my children to properly deliver the saliva than I had expected. Unlike a blood draw, this requires active cooperation. Dr. Ilias told me that in the 12,000 tests he has done to date he consistently gets about 14% to 15% positive results, which is about 35 times greater than the incidence of celiac disease in Europe (1:250). Thus, the test may be a screen for general allergy or intolerance to gluten, not just formal Celiac. Before reviewing some of the comments about the test itself, I wanted to forward a comment to this statement in the reply post: LW> ...All people have a titer of anti-gliadin anti-bodies on this test, LW> because gluten causes a small amount of villi damage in everybody. On this point Don Kasarda replied: DK> I don't know anything about the saliva test, but I am not personally DK> aware of any scientific evidence for the above statement that gluten DK> causes a small amount of damage to villi in everybody. As for the test itself, those who commented on it made it clear that the test has not been validated as being either sensitive or specific enough for diagnostic work in Celiac Disease. It appears to be one of a number of a number of unproven, and not-completely-tested alternatives to the current state of the art endoymsial/reticulin/gliadin panel, which approaches 100% accuracy when done by an experienced lab. >From Erkki Savilahti, M.D., who was one of the authors of a study comparing the saliva test to the current serology tests in DH: ES> Our study (Eur J Oral Sci 1995;103:280-4 Patinen et al.; Salivary ES> and serum IgA antigliadin antibodies in dermatitis herpetiformis) ES> did not find salivary antibodies very useful in dermatitis ES> herpetiformis; in fact IgA antigliadin antibodies in saliva were not ES> increased in any of the 10 untreated patients and there was no ES> change after the introduction of gluten free diet. ES> ES> Altogether the measurement of salivary antibodies is plagued with ES> many drawbacks; it is difficult to stimulate and collect resulting ES> in very variable levels. Serum tests for example to study ES> endomysium antibodies may be done on a small sample taken by skin ES> puncture and is acceptable for children. Moreover, the specificity ES> and sensitivity of these antibodies are superior to determination ES> of gliadin antibodies: in a submitted manuscript we found the ES> sensitivity for umbilical cord antibodies to be 0.94 and specificity ES> 1.00 in a large material of pediatric patients. Dr. Karoly Horvath called Dr. Ilyia to get more information about the saliva test, and send the following email: KH> I talked with Dr. Ilyia about the saliva antibody test. Evidently, KH> he states that this is a very helpful test for people looking for KH> any help for the gastrointestinal problems. Several patients who had KH> increased saliva antibodies reacted well for gluten withdrawal. KH> This sounds great. However, from methodological point of view there KH> are several steps to validate the test: KH> KH> - There is no data about the specificity and sensitivity of this KH> test in celiac patients. If somebody introduces a new test it KH> should be compared with the clinical diagnosis based on other KH> test(s) with high specificity and sensitivity or with a KH> pathologic diagnosis (e.g. intestinal histology in celiac KH> patients or skin biopsy in patients with DH). This saliva test KH> was compared only with the serum antigliadin antibody levels of KH> the same patients. The clinical correlation of the results KH> based on the patients subjective response to elimination diets. KH> Dr. Ilyia states that the saliva test is positive when the serum KH> antibody level is not elevated (returned to the normal level). KH> KH> - They have not compared yet their test results with endomysium KH> antibody titers. They have not compared the results with the KH> histology of celiac patients. KH> KH> Dr. Ilyia mentioned to me that he has talked with Joe Murray, KH> and they are planning to perform studies with the participation KH> of 22 patients with celiac disease. ... KH> KH> - They did not evaluate the antibodies in healthy people, and KH> there is no data on the percentage of normal population, who may KH> have increased levels without celiac disease (normal control KH> group)... KH> KH> - There is no data whether people with other documented KH> gastrointestinal diseases (e.g. Crohn's disease) have salivary KH> antibodies more frequently than the healthy controls (GI control KH> group).... KH> KH> I tried to focus on questions which are addressed when somebody KH> comes out with a new test. All these issues have been clarified for KH> the serum serological tests between 1985 and 1991. That is why we KH> have data about the specificity, sensitivity, positive and negative KH> predictive value of the celiac serum serological tests. For a real KH> judgement of the saliva test it should undergo the same steps of KH> evaluation. Bill Elkus Los Angeles
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