This file contains postings made by the following professionals: Richard Abrams, Ph.D.--a retired professor of biochemistry at the University of Pittsburgh. Karoly Horvath, M.D.--an associate professor of pediatrics at the University of Maryland at Baltimore. Dr. Horvath set up the Pediatric Gastrointestinal and Nutrition Laboratory, and is now director of this lab. Donald D. Kasarda, Ph.D.--a research chemist with the United States Department of Agriculture. Dr. Kasarda has worked on grain proteins in relation to grain quality for 30 years. He has colloborated with medical groups working on celiac disease for about 25 years and has often been used as an informal consultant by support groups. Vijay Kumar, M.D.--president of IMMCO Diagnostics, one of the labs that performs celiac antibody blood tests. Joseph Murray, M.D.--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. Kalle Reichelt, M.D.--Senior researcher at the Department of Pediatric Research, University of Oslo, Norway. Dr. Reichelt is looking into the impact of gluten intolerance on certain individuals with developmental delays. Paul Shattock--a pharmacist and founding chairman of "Communities for Autistic People", a charity which owns and operates four group homes and a college and various support services for young adults with autism. Phil Sheard, Ph.D.--researcher in the Developmental Biology Unit, Department of Physiology, University of Otago Medical School, in Dunedin, New Zealand. ((Disclaimer: Verify this information before applying it to your situation.)) ========================================================================= Date: Tue, 9 Apr 1996 23:47:46 -0400 From: Jim Lyles (lyles@SUN.TIR.COM) Subject: How much gluten in wheat? starch? The Listowners are in the process (which may take months) of making revisions to the FAQ, and from time to time we will post additions which we feel would be of immediate interest to the listmembers. The following material was done in cooperation with Don Kasarda (thanks, Don!) Q. How can I determine the amount of gluten from the weight of the wheat in food? A. For 100 units of whole grain wheat, about 70 units of white flour results from the milling process. The rest is separately sold as wheat bran or wheat germ. Those 70 units of flour are about 10%- 15% protein, thus about 7 to 10 units of protein for 100 units of whole wheat. The protein is about 80% gluten, thus about 6 to 8 units of gluten for 100 units of whole wheat. Since one typically sees wheat flour as an ingredient, appying the 70% factor implies 8 to 12 units of gluten per 100 units of wheat flour. Q. Sometimes I see references to the amount of prolamin or gliadin instead of gluten. A. To cereal scientists, gluten is the same as prolamin, but in some older terminology only the gliadin fraction is termed prolamin. Gliadin makes up about half of the gluten. The other half is often called glutenin, but it is very similar to the gliadin half in composition and structure and I suspect that it is toxic to a large extent. It would be simplest to say that gluten equals gliadin equals prolamin as far as toxicity is concerned. Q. How is wheat starch made? Why is some starch said to be more toxic than others? A. Most of the wheat grain and of white flour is made up of starch granules. Starch granules make up about 75% of grain or of white flour. In the processes used to make wheat starch, a small amount of the gluten protein (actually mostly the gliadin fraction, but not entirely), sticks to the surface of the starch granules. The amount depends on the washing method, how many times the granules are washed, and factors like that. Wheat starch can be made very low in surface protein and it is only the surface protein that is of concern (there are some internal granule proteins, but we are pretty sure that they are not gluten proteins). Q. How much gluten is in wheat germ and wheat bran? A. I don't know how much gluten they contain, but my feeling is that it is likely to be more than you would find in wheat starch and so best avoided by celiac patients. ========================================================================= Date: Wed, 10 Apr 1996 14:44:01 PDT From: "Donald D. Kasarda" (kasarda@PW.USDA.GOV) Subject: methylcellulose Comment from Don Kasarda, Albany, CA, on use of xanthan gum and guar gum. I think people who are having problems with the above gluten replacements might find methylcellulose to be a good substitute. A rice bread formula for celiac patients based on methyl cellulose as gluten substitute was developed by Maura Bean of this lab many years ago and the formula seemed to work well. I think EnerG Foods sells the methyl cellulose. It should be a more pure, less complex substance than the natural gums. Consequently, I think it might be less likely to cause allergic reactions or other harmful effects, although I don't personally have any experience with it. ========================================================================= Date: Thu, 11 Apr 1996 12:29:04 -0400 From: Kevin Lawson (IMMTEST@AOL.COM) Subject: Re: Increased IgG: non-Celiac cause? It appears from your message that the daughter of the member of your society has been tested for antibodies to gliadin. It is a known fact that anti-gliadin antibody tests, especially of IgG type, are not very disease specific. It may be that the results obtained on the girl are false positive. It would be advisable that she be tested for endomysial and reticulin antibodies. These antibodies are highly specific for CD when on a normal diet. If any of these tests turn out positive then you can bet that she has been taking has some gluten in her diet. If you have any questions, you can write or call: IMMCO Diagnostics 963 Kenmore Avenue Buffalo, NY 14223 800-537-TEST Vijay Kumar Research Associate Professor ========================================================================= Date: Thu, 11 Apr 1996 12:29:00 -0400 From: Kevin Lawson (IMMTEST@AOL.COM) Subject: Re: Skin Biopsies vs. Small Bowel Biopsies You are absolutely right that skin biopsy studies are useful and indicated only when DH is in the differential diagnosis. Only 2-3% of patients who initially present with CD go on to develop skin lesions consistent with DH. As to the question of the tests for diagnosing CD, you are also right in assuming that biopsy is the gold standard. However, I must say that serum tests, especially for endomysial antibodies, are very specific for CD. Vijay Kumar Research Associate Professor firstname.lastname@example.org ========================================================================= Date: Thu, 11 Apr 1996 19:14:28 -0400 From: Bill Elkus (Bill_Elkus@JEFCO.COM) Subject: Biopsies and Blood Tests (Part 1 of 3) The Listowners are in the process (which may take months) of making revisions to the FAQ, and from time to time we will post additions which we feel would be of immediate interest to the listmembers. The following material on biopsies and blood tests is especially critical to every celiac and his/her family. Therefore, even though it is long, we are posting the information in full. We are splitting this post into 3 segments to make it easier to download on certain mail systems. This file was prepared in cooperation with Vijay Kumar, M.D., Research Associate Professor at the University of Buffalo and President and Director of IMMCO Diagnostics, and Karoly Horvath, M.D., Ph.D., Associate Professor of Pediatrics; Director, Peds GI & Nutrition Laboratory; University of Maryland at Baltimore. Both run laboratories which provide services in the areas of autoimmunity, including tests for celiac disease. Thanks to both! Bill Elkus, for the CELIAC listowners ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Q. How long must gluten be taken for the serological tests to be meaningful? K (Dr. Kumar). There is no simple answer to this question as the susceptibility of the patient to developing CD is dependent upon several factors. One factor is the amount of gluten intake. Another is the genetic makeup of the individual. However, we feel that several weeks of gluten intake, especially in doses of 2 gm gluten/day, should result in positive serology in patients with CD. H (Dr. Horvath). The result of serological tests depends on the diet. Generally, three to six months of a gluten-free diet may result in normal antibody levels in a new patient. A strict gluten-free diet for more than three months may result in inconclusive serological tests in patients, who have started a diet without any diagnostic test. In this case a gluten challenge should be introduced for a proper diagnosis. Each patient has different sensitivity to gluten for reasons that are unclear. The period of gluten challenge and the amount of gluten necessary to provoke serological immune response are individually different. A 0.3 g/kg body weight/day of single gluten challenge causes immunological changes (cellular immunity) in the intestine (J Pediatr Gastroenterol Nutr 1989; 9:176-180) in patients on a gluten-free diet, however, the serological response is much slower. Our recommendation is to ingest at least 0.3 g/kg/day of gluten for two months prior to the serological tests. However, if somebody experiences symptoms during the gluten challenge we recommend to perform serological tests earlier. The protein content of wheat flour is between 7-15% and approximately 90% of the protein content is gluten. That means a slice of bread may have 2-3 g of gluten. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Q. What is the probability of false positive and false negative results from the serological tests? K. The three serological tests that are used for diagnosing CD are: Anti-endomysial antibody (EMA) Anti-reticulin antibody (ARA) Anti-gliadin antibody (AGA) Each of these three tests provide a certain degree of reliability for diagnosing CD. Of these, endomysial antibody is the most specific test. The following table is taken from our studies (Lerner, Kumar, Iancu, Immunological diagnosis of childhood coeliac disease: comparison between antigliadin, antireticulin and antiendomysial antibodies). [Editor's note: view this in a monospaced font, such as Courier, to get the numbers and titles to line up] % Sensitivity % Specificity Predictive Value % Pos. % Neg. EMA 97 98 97 98 ARA 65 100 100 72 AGA IgG 88 92 88 92 IgA 52 94 87 74 The following definitions related to sensitivity, specificity, positive and negative predictive values may help. Sensitivity is the probability of a positive test result in a patient with disease. Specificity is the probability of negative test result in a patient without disease. Positive predictive value is the probability of disease in a patient with positive test result. Negative predictive value is the probability of no disease in a patient with negative test result. H. The summary below shows the results of the main serological tests based on several publications including 388 patients with CD, and 771 healthy subjects. SENSITIVITY- the proportion of subjects with the disease who have a positive test. It indicates how good a test is at identifying the diseased. IgA AGA: average: 78% range: 46-100% IgG AGA: average: 79% range: 57-94% IgA EMA: average: 97% range: 89-100% SPECIFICITY- the proportion of subjects without the disease who have a negative test. It indicates how good a test is at identifying the nondiseased. IgA AGA: average: 92% range: 84-100% IgG AGA: average: 84% range: 52-98% IgA EMA: average: 98.5% range: 97-100% POSITIVE PREDICTIVE VALUE- the probability that a person with positive results actually has the disease. IgA AGA: average: 72% range: 45-100% IgG AGA: average: 57% range: 42-76% IgA EMA: average: 92% range: 91-94% NEGATIVE PREDICTIVE VALUE- the probability that a person with negative results does not have the disease. IgA AGA: average: 94% range: 89-100% IgG AGA: average: 94% range: 83-99% IgA EMA: average: 100% range: 100% REFERENCES: McMillan SA, Haughton DJ, Biggart JD, Edgar JD, Porter KG, McNeill TA. Predictive value for coeliac disease of antibodies to gliadin, endomysium, and jejunum in patients attending for jejunal biopsy. Brit Med J 1991;303:1163-1165 Ferreira M, Lloyd Davies S, Butler M, Scott D, Clark M, Kumar P. Endomysial antibody: is it the best screening test for coeliac disease? Gut 1992;33:1633-1637. Khoshoo V, Bhan MK, Puri S, Jain R, Jayashree S, Bhatnagar S, Kumar R, Stintzing G. Serum antigliadin antibody profile in childhood protracted diarrhea due to coeliac disease and other causes in a developing country. Scand J Gastroenterol 1989;24:1212-1216. Chan KN, Phillips AD, Mirakian R, Walker-Smith JA. Endomysial antibody screening in children. J Pediatr Gastroenterol Nutr 1994;18:316-320. Bode S, Weile B, Krasilnikoff PA, Gdmand-Hyer E. The diagnostic value of the gliadin antibody testing celiac disease in children: a prospective study. J Pediatr Gastroenterol Nutr 1993;17:260-264. Calabuig M, Torregosa R, Polo P, Tom s C, Alvarez V, Garcia-Vila A, Brines J, Vilar P, Farr C, Varea V. Serological markers and celiac disease: a new diagnostic approach ? J Pediatr Gastroenterol Nutr 1990;10:435-442. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ ========================================================================= Date: Thu, 11 Apr 1996 19:25:17 -0400 From: Bill Elkus (Bill_Elkus@JEFCO.COM) Subject: Biopsies and Blood Tests (Part 2 of 3) Q. Should I just test endomysial antibodies or also do gliadin/reticulin? H. Serological tests are performed at the time of diagnosis of celiac disease and they are repeated later to estimate the efficacy of the gluten-free diet. It is recommended to perform a full serological test-panel in patients with suspected celiac disease. These tests measure antibodies belonging to both the IgA and IgG classes of immunoglobulins. The incidence of selective IgA deficiency is much higher in celiac patients than in the general population. In patients with selective IgA deficiency only the IgG antigliadin antibody may be present, however, this antibody is less specific. It means that the IgG-type antigliadin antibody may be present in otherwise normal individuals. If somebody had a positive endomysial antibody test at the time of diagnosis he/she may choose to use only this antibody test to monitor the effect of the diet. There are individual differences in the disappearance of serum antibodies. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Q. Is it important to use experienced laboratories for reliable test results? K. Absolutely yes. For the test to provide meaningful results, it must be validated using a large number of clinical documented subjects. In addition, the two tests, endomysial and reticulin are immunofluorescent tests where the readings are subjective. Experienced laboratory personnel are needed to read such tests. H. There are several advantages to use a laboratory experienced with the celiac serological tests: -technically, the test are more reliable, and the internal and external control of tests are better established than in laboratories where the CD serology panel is only one of the routine tests -more importantly, laboratories specialized in celiac serological testing have larger numbers of positive and negative samples to validate their tests and they are able to set up more accurately the negative, intermediate and pathologic values -a laboratory specialized in these tests generally has a clinical background, and the physicians with experience in CD may help in the interpretation of the results and they are happy to consult with other physicians and they can answer the questions of patients. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Q. How can I convince my doctor to do these tests, and do them at an experienced lab? K. Convincing the doctor initially depends upon the patient. However, the laboratory to which the test is sent should be available to answer questions the doctor may have. Our laboratory always encourages such questions. H. Lot of physicians in the USA did not get appropriate training to recognize the protean manifestations of celiac disease. However, if the classical symptoms are present--chronic diarrhea, weight loss, protuberant abdomen, foul-smelling stools, etc.--it is absolutely indicated to test the patients serum for antigliadin and antiendomysium antibodies. Professionals participating in this discussion group are educating physicians on an almost daily basis. Generally, it is useful to supply the physician with a review article or a textbook chapter describing the values of serological tests and protean manifestations of celiac disease. If that does not help, you can ask the help of professionals participating in the Cel-Pro list. They have helped several patients by calling physicians and convincing them about the necessity of serological testing. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Q. How often must a negative test be repeated in suspect individuals? This question has two aspects: for an individual with existing symptoms, and for a sibling of a known celiac. K. If the test is negative and there is a strong suspicion of CD, it must be repeated after several weeks (3-4 weeks), especially after a high gluten intake. We did a study of two cases with DH who were serologically negative. However, a gluten challenge 1g/Kg body wt/day resulted in positive serology; the results became normal on a gluten free diet. If you are a relative of a CD patient and are on a regular diet and the serology performed by an experienced laboratory is negative then there may not be any need for retesting until and unless clinically justified. H. There is no rule for it. If a family member with previous negative tests experiences any gastrointestinal symptoms associated with CD, he/she should undergo serological testing as soon as possible. It is well known that up to 15% of the family members of a patient with celiac disease may have the asymptomatic (latent or silent) form of celiac disease, although they have positive serological tests and have the pathological changes in the upper part of the small intestine. It is also evident that there are at least three developmental stages of mucosal lesions (Marsh MN. Gastroenterology 1992;102:330-354) and celiac disease may manifest at each period of life. That is why we recommend a repeat test every 2-3 years in first degree relatives of celiac patients. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Q. Suppose the biopsy or serum tests are inconclusive. What do you do? K. The biopsy may be inconclusive. Serum, if tested for gliadin, endomysial and reticulin antibodies, should provide unequivocal information. Ours and other studies have provided a strong reliability of the serum tests. H. The biopsy may be inconclusive in a small percentage of patients with so-called patchy lesions in the duodenum. It means that there are histologically normal looking spots with finger like villi and pathologic spots showing flattened mucosa in the upper half of the duodenum. If CD is suspected, the gastroenterologist should obtain several biopsies from different spots of the whole duodenum. Most of the endoscopists routinely examine only the upper half of the duodenum (duodenal bulb and the descending part). The transverse segment of the duodenum is not viewed routinely. Few endoscopic centers have an enteroscope, which is a longer and more flexible endoscope for examining the entire duodenum and jejunum. The enteroscopy allows you to obtain biopsies even from the jejunum. The histological examination of a single biopsy specimen may increases the risk of false negative diagnosis. The experience of the pathologist in the interpretation of small intestinal histology is important. In centers specializing in celiac disease the gastroenterologist routinely reviews the histologic slides together with the pathologist. There is still a possibility of inconclusive results if multiple biopsies are obtained and the histological interpretation is appropriate. All disease has a developmental process. It means that it takes time for the pathological changes to be evident. There are cases when the symptoms suggest CD, however, the histology is not conclusive. This problem occurs in only a few cases. A repeated biopsy may be necessary after a period of higher gluten intake. However, if the antiendomysium antibody test is positive and the histology is not conclusive a gluten-free diet is recommended. The serology test may be inconclusive if: -the sample handling and shipping is inappropriate; e.g. the serum was shipped at room temperature for days -the patient has IgA deficiency, which occurs in one out of 600 people in the general population and much more frequently in patients with CD. In these cases the antigliadin IgA and the antiendomysium IgA tests give negative results. If the tests are performed in a laboratory specialized in celiac serological tests, the laboratory recommends a test for immunoglobulins. If a patient has IgA deficiency and positive antigliadin IgG test, he/she should undergo further absorptive tests and/or an intestinal biopsy. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ ========================================================================= Date: Thu, 11 Apr 1996 19:20:19 -0400 From: Bill Elkus (Bill_Elkus@JEFCO.COM) Subject: Biopsies and Blood Tests (Part 3 of 3) Q. One case I know of had elevated gliadins (both types) but normal EMA and ARA, plus an inconclusive biopsy. Do you see this often? K. If the tests are performed using well standardized tests with known positive and negative predictive values then you can make the statement that if the serological tests are negative CD can virtually be ruled out. The problem is that some of these assays, especially the gliadin, can give you false positive results. In our laboratory we rarely see positive AGA results in the absence of EMA and ARA antibodies. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Q. Are there any unique factors to be considered for children? I've heard that the serology has a lower predictive value for children under age two, since IgA may be depressed, or with anyone who has a condition which depresses IgA. K. Not really. It is not true that the serological methods have lower predictive value in children less than two years of age. In all the studies that we did, there was 100% correlation of the EMA to the disease activity irrespective of the age. H. There are age dependent changes in several blood parameters during childhood. It is well known that immunoglobulin levels depend on the age of children. E.g. the IgA class immunoglobulins reach the adult level only by 16 years of age, and the blood level of IgA immunoglobulins is only 1/5th of adult value below two years of age. A large study from Europe (Brgin-Wollf et al. Arch Dis Child 1991;66:941-947) showed that the endomysium antibody test is less specific and sensitive in children below two years of age. They found that the sensitivity of the EmA test decreased from 98% to 88% in children younger than 2 years of age. It means that 12% of their patients with celiac disease, who were younger than two years of age, did not have an increase in their endomysium antibody levels. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Q. How important is it for a confirmed celiac to have repeat biopsies or serology when on a gluten free diet? K. It is important for the serum tests to be negative in patients with CD. These tests provide strong indicators that the gluten free diet followed is effective and is free of gluten. Sometimes drugs or other intakes may be contaminated with gluten that may continue sensitization and the disease process which may be subclinically. We and others believe once the diagnosis of CD is confirmed and the patient is on a gluten free diet, repeat tests once in 3-6 months may be sufficient. H. If a patient has histologically (endoscopy) and serologically (antibody tests) proved celiac disease, and his/her symptoms disappeared on a gluten-free diet, a repeat biopsy is not necessary. The serological tests are useful tools for estimating the effectiveness of the diet after 3-6 months on a gluten-free diet. The disappearance of antibodies from the blood takes months, if there was not any accidental gluten challenge (dietary mistake). ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Q. There are different practices amongst g/i's on repeat biopsies vs. serology, and on gluten challenges. My son's g/i, for example, took the position that since my son's symptoms stopped on a GF diet, and his previously sky-high EMA and ARA went back to normal, that it was unnecessary to do either a repeat biopsy or a gluten challenge. From the celiac list correspondence, I now see that my g/i is rather liberal. K. I think your son's GI is doing the right thing. That is, if the EMA, ARA are normal (1:2.5) and he is on a gluten free diet then there is no need to perform biopsy studies. The previous studies relating the EMA to biopsy studies tend to confirm this impression. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Q. Should my child have general anesthesia or conscious sedation prior to the biopsy? H. The biopsy is a small piece of tissue, such as from the inside lining of the intestine, that has been removed to look for diseases. The biopsy itself is not painful, because there are no pain-sensitive nerves inside the small intestine. An intestinal biopsy can be done in either of two ways depending on the age of the children and the tradition of the institution. Sometimes a blind biopsy procedure is performed by a biopsy capsule. This is thin flexible tube with a capsule at the tip, which has a hole and a tiny knife inside the capsule. This capsule is introduced into the intestine under fluoroscopy (X-ray) control. Alternatively, with an endoscopy the doctor can see inside the digestive tract without using an x-ray to obtain biopsies. The biopsy specimens are processed and viewed under the microscope to identify or exclude celiac disease. An important basic rule is that the biopsy should be performed safely. For a safe procedure children (and adults) should be sedated. There are two methods of sedation: unconscious (general anesthesia) and conscious sedation. During both kinds of sedation the vital parameters (heart rate, blood pressure, oxygen saturation) of patients are continuously monitored. The method of choice depends on the child. Conscious sedation is performed with two different intravenous medications. One of them is a sedative medication (e.g. Versed), which causes amnesia in 80-90% of children, and even older children do not recall the procedure. The second medication is a pain-killer type medication (e.g. Fentanyl), which further reduces the discomfort associated with the procedure. In addition, the throat is sprayed with a local anesthetic in older children, which makes the throat numb and prevents retching at the introduction of the endoscope. During general anesthesia the anesthesiologist uses sleep-gases (e.g. halothan) and intravenous medications and then places a tube into the trachea. Children are completely unconscious. This is a safer way to perform endoscopy, because the patients are fully relaxed and their airway is protected. However, the anesthesia itself has certain complications. ========================================================================= Date: Thu, 11 Apr 1996 17:41:05 PDT From: "Donald D. Kasarda" (kasarda@PW.USDA.GOV) Subject: cigarettes and gluten Comments on the letter from Charlie in The Big Apple about the possibility that cigarettes might incorporate a glue made from gluten. from: Don Kasarda, Albany, CA First, of all, it would be helpful to me to know how Charlie was diagnosed as having celiac disease and if the diagnosis was solid. Secondly, I would like to know if it was definitely licking the envelope that caused him intestinal distess. It is possible, I think, for people to make the unwarranted jump from, "I licked the envelope" and "I got sick" to "licking the envelope made me sick." If, in fact, Charlie is that sensitive to gluten, however, I will predict that either he does not have celiac disease, but rather a Type I immediate hypersensitivity to gluten, one probably mediated by IgE antibodies, or that he has both the Type I sensitivity and a Type IV delayed hypersensitivity-- the latter being considered characteristic of celiac disease and determined primarily by a cellular response (involving T cells) rather than an antibody response. There may be a semantic problem or an arbitrary difference in classification terminologies, but some immunologists (e. g., Janeway and Travers, Immunobiology 1994) would consider both Type I and Type IV reactions as coming under the general heading of "allergy," whereas I have tended to consider (possibly incorrectly because I am not an immunologist) that only Type I responses are true "allergic" reactions. I suspect that anyone who reacts with strong symptoms within a couple of hours of eating gluten has the Type I response, which may or may not be accompanied by their having true celiac disease. A Type I response could, in theory, be caused by proteins found in wheat that are not gluten proteins and do not initiate the processes in celiac patients that ultimately damage the absorptive surface of the small intestine. I have discussed this question of IgE antibodies with Vijay Kumar and he has offered to try to obtain some test results for IgE antibodies that might shed some light on my proposal. I suspect that Charlie is unlikely to suffer any harm (at least, harm related to celiac disease) from smoking a cigarette with a glue containing gluten in it unless he is concerned about touching the glue with his mouth--in which case, he might try getting himself a cigarette holder. I would guess that any gluten peptides are unlikely to carry through in the cigarette smoke. They should be degraded in the burning. If, in fact, Charlie had a gluten-like reaction from cigarette smoke while using a cigarette holder, that would be an interesting case--one worthy of description in the scientific literature as it would indicate that the gluten peptides can survive in truly trace amounts when a cigarette burns as detected by a truly hypersensitive individual. This is my personal opinion and it should not be considered medical advice in any legal sense. ========================================================================= Date: Fri, 12 Apr 1996 14:13:20 PDT From: "Donald D. Kasarda" (kasarda@PW.USDA.GOV) Subject: Beer Information from Don Kasarda, Albany, CA We have started doing a little research on gluten peptides in beer and find it a very difficult area of research. However, it has caused me to read the past literature more carefully, understand it better, and also to communicate with other researchers. One point that might be of interest is that, according to published work in which an antibody to a peptide derived from alpha-gliadin was used as a probe (Julia Ellis et al. in the UK), a pint of barley-based beer contains the equivalent of about 1.5 mg of gliadin. Another researcher tells me that he has found a similar amount in Danish beers brewed from barley, but much more (about 30 times more) in wheat-based beers (weissbier). I think these results seem reasonable. However, it is possible that further research may up the amount somewhat, but also might decrease it substantially. As I said, the analysis is quite tricky and more work needs to be done to substantiate or change the results obtained to date. ========================================================================= Date: Tue, 23 Apr 1996 10:25:00 CST From: "Joe Murray, M.D." (Murray@INTMED-PO.INT-MED.UIOWA.EDU) Subject: re biopsies There is much variation in the findings seen on biopsy of the intestine in celiac disease. There are also many conditions that can mimic the pathological finddings of celiac disease. However in adults in the US other causes for complete villous atrophy with inflammation are unusual except in well defined and often easily recognised circumstances. The major area of debate centers in the less that classic biopsy. often times these biopsies may be interpreted as non-specific inflammation and celiac disease discounted as a possibility. However in some cases on review and with the benefit of hidsight the biopsies may have had subtle findings that would allow a more specific identifaction or at least suspicion for celiac disease to be entertained. Are there any intraepithelial lymphocytes, is there crypt hyperplasia ( thickening of the basement level of the lining) enethough some tall villi can be seen. This can be a difficult area for the pathologist to deal with, coorelation with the clinical picture is essential to put it all together, this gets even more challenging as the definition of what constitutes celiac disease may change somewhat. This is just one challenge that celiac disease presents for patients, parents, doctors, and pathologists. Joe Murray Not medical advice ========================================================================= Date: Tue, 23 Apr 1996 10:52:00 CST From: "Joe Murray, M.D." (Murray@INTMED-PO.INT-MED.UIOWA.EDU) Subject: re biopsies There has been some questions about whether a celiac patient can have complete resolution of the intestine on a gluten free diet. i believe that they can, Earlier reports of failure to heal really did not necessarily control for dietary compliance. While reviewing the accuracy of the original diagnosis of celiac dsiease may be an important exercise when seeing a patient for the first time many years after the original diagnosis, One should not discount the diagnosis on the basis of a normal biopsy after years of a gluten free diet. It may be a sign of success!! The first step should be to obtain the orginal records and if possible the biopsy slides and report upon which the diagnosis was based. ## I think it is good idea to get copies of reports at the time of diagnosis to keep in a personal health file at home or safety deposit box, especially for children. One does not know when later in life there would be a need for records. This is especially so for a lifelong condition such as celiac disease. Many hospitals only retain records for 21 years in the case of children, and as little as 7 years in adults ( usually 7 years of inactivity) I frequently am faced with reconfirming a childhood diagnosis in adulthood, and lack of these records is a problem. Pathology slides are a different matter. These may be retained for up to 21 years in some places ( retrival may take a while). Few health care organisations can afford to keep records and path slides indefinitely. ### This is not medical advice Joe Murray ========================================================================= Date: Wed, 24 Apr 1996 11:33:50 -0400 From: Kevin Lawson (IMMTEST@AOL.COM) Subject: Re: Inconclusive biopsy results The presence of endomysial antibodies is the hallmark of CD. Not all patients with CD and positive endomysial antibodies are gliadin antibody positive. In addition, there are subjects with positive endomysial antibodies with no apparent clinical symptoms. Such patients usually have asymptomatic manifestations of CD with patchy changes of the gut. It appears from the information provided that your child, even though the biopsy findings are inconclusive, has CD. As for you and your wife, negative tests for endomysial antibodies when on a normal gluten containing diet for a reasonable period of time. This suggests that neither of you have CD. I hope you find these explanations satisfactory. Vijay Kumar, Ph.D. Research Scientist ========================================================================= Date: Wed, 24 Apr 1996 20:24:02 -0400 From: Richard Abrams (abrams+@PITT.EDU) Subject: Vinegar and alcohol Alcohol and vinegar P sources of gluten? It has been common practice among celiac support groups and others offering advice on gluten-free diets to proscribe white (distilled) vinegar and alcohol as potential sources of gluten. The assumption is made that any product manufactured from a gluten-containing grain is probably contaminated with gluten proteins or peptides. But to those with some chemical training (myself plus others who have posted comments on this subject in the past), distillation is a highly effective method for separating volatile substances such as alcohol from non-volatiles such as proteins or peptides. Vinegar, especially white vinegar, is a common ingredient in commercially prepared foods. Because I object to dietary restrictions that are unnecessary and that further limit an already restricted diet, I have tried to learn something about the manufacturing process. The following summary is for others who might like to know how white vinegar comes into being and what the level of gluten contamination, if any, is likely to be. My sources of information have been the biotechnology literature and telephone contacts with knowledgable people in the industry. I personally have had no hands-on experience in vinegar making. From grain to starch to fermentable sugar: White (distilled) vinegar is of course not distilled, but the ethyl alcohol from which it is made is distilled from a yeast fermentation mixture. (In the UK, however, I believe that 'distilled vinegar' has a different meaning, that it is made from malt and that it is in fact, distilled.) In most of the world, molasses, which can be fermented directly by yeast, is the major source of alcohol. Alcohol is also made synthetically from petroleum products but I do not believe that alcohol from this source is much used in the food industry. In the U.S., starches derived from grains are the major source, mostly (about 85%) from corn. Starches are mixtures of large straight and branched chain polymers of the simple sugar, glucose. Since yeast is incapable of fermenting starches, whether from corn, wheat, potatoes or any other source, the grain starches must be pre-digested with amylases, enzymes that are capable of splitting the starch molecules into smaller fragments. Depending upon the nature of the amylases, the end products are usually maltose (a disaccharide of two linked glucoses), some free glucose, and small amounts of assorted dextrins (small polymers of more than two glucoses). In the brewing industry, the source of the amylases is usually barley malt, barley that has been allowed to sprout until the amylases and proteases needed to digest the nutrient stores in the seed have developed and then heated enough to stop the sprouting without inactivating the enzymes. For industrial alcohol, including the food industry, it is common to replace malted barley with cheaper, partially purified amylases prepared from bacteria (several species of Bacillus can be used) and/or a mold such as Aspergillus niger or Aspergillus oryzae. Alcoholic fermentation: After the starch is largely transformed by the amylases, yeast is added and the temperature adjusted to initiate fermentation. The small polymers in the digest such as maltose (glucose-glucose) and maltotriose (glucose-glucose-glucose) are hydrolyzed by the yeast cells to glucose. Glucose is then converted by fermentation to ethanol and carbon dioxide, releasing energy in the process which is used by the yeast for growth. Fermentation results in conversion of roughly 90% of the original starch to alcohol plus smaller amounts of other volatile products such as aldehydes, ketones, fusel oils (higher alcohols), phenol derivatives, and esters. These volatile contaminants which vary with the yeast strains used and with the bacterial contaminants in the fermentation mixture contribute significantly to the flavors of alcoholic beverages but must be removed in the production of purified neutral spirits. Alcohol is purified by distillation: After fermentation, alcohol and other volatiles are separated from the non-volatile components by distillation. There is often a first crude distillation in which the fermentation mixture is boiled and the vapors are condensed back to a liquid phase that contains about 50% alcohol plus other volatile products. While vigorous boiling can drive off microdroplets of the pot liquor (that contain non-volatile components) along with the alcohol containing vapors, industrial fractionating stills are built as tall refluxing columns with sections of transverse plate barriers that are designed to trap entrained droplets followed by multiple plates to rectify the vapors, i.e., to concentrate the alcohol, separate it from the other volatile constitutents (and purify them as byproducts), and to act as a further barrier against non-volatile material. The problem for the distiller is not the relatively simple task of avoiding carry over of the non-volatile material in the distilling pot, but rather the separation of the various volatile products from one another. Is there nitrogenous contamination in the distillate? I spoke to an official of a firm in Iowa that provides U.S.P. grade 95% ethanol to Heinz and other vinegar producers. I was informed that their product which undergoes repeated distillations contains no detectable nitrogen using an assay whose limit of detection is 0.1 parts per million. Assuming that all the hypothetical nitrogenous impurities are protein or peptide, this limit level corresponds to about 0.7 mg protein per liter of 95% alcohol. The alcohol undergoes about a 20-fold dilution in its conversion to vinegar (4 to 5% acetic acid), so that, if all of the hypothetical protein survives the acetous fermentation, its final concentration is less than 0.035 mg per liter of vinegar. This worst case scenario represents the limit of detection; the actual amount present may be far less, and if it exists, it may have originated from yeast protein (non-gluten) as well as from seed protein. Is 0.035 mg/liter dangerous? Assuming that the maximal daily consumption of vinegar by an average person is of the order of 30 ml ( 6 teaspoons), the daily dose of protein or peptide originating in the yeast fermentation mixture would be less than 0.001 mg (1 microgram). The significance of this maximum level can be judged by comparing it to the estimated gluten level in European GF diets that are based on wheat starch from which the gluten has been removed by washing (see the March 16 summary by Bill Elkus of a CelPro discussion of a possible gluten tolerance level). Estimates of residual gluten in these "gluten-free" diets are in the range of 4 to 40 mg per day. To reach the lower estimate of this possible "tolerance" dose would require a daily consumption of at least 100 liters of white vinegar. This might well be dangerous to one's health, but not because of its gluten content. The conversion of alcohol to vinegar: I should perhaps comment on the conversion of alcohol to vinegar, a process in which no distilllation or elaborate purification is involved. This process involves a second fermentation (the alcoholic yeast fermentation being the first) that uses bacteria, a species of Acetobacter, in place of the yeast. The procedure is basically the same whether the alcohol is U.S.P. grade or the crude alcoholic mixtures in fermented apple or grape juice. The bacteria in the vigouously aerated vinegar reactor may be in suspension or on the surface of wood chips, and the liquid phase contains in addition to the alcohol source, a nutrient mixture to keep the Acetobacter growing while they oxidize alcohol to acetic acid. The nutrient mixture is said to consist of a variety of salts and some carbon and nitrogen sources such as glucose, citric acid, ammonium phosphate, some yeast extract or dried yeast, and hydrolyzed soy flour. At the conclusion of the fermentation the vinegar is not distilled, but rather is filtered to remove microorganisms and particulate material and diluted to bring the acetic acid level down from values as high as 15 to 20% to roughly 5%. Can gluten be introduced during the acetous fermentation? Since it is possible that traces of the nutrient mixture could persist into the finished product, one might wonder whether gluten-containing grains were ever used instead of or in addition to soy protein. I spoke to the president of one of the major suppliers of nutrient mixes to vinegar manufacturers. While he would not give me a detailed list of ingredients (trade secret!), he assured me that his product is gluten-free, and he further stated that he was familiar with the composition of other such products in use on both sides of the Atlantic, and that they were all gluten-free. The nutrient mixture is used in cider vinegar as well as in white vinegar, although in significantly smaller amount. Can vinegar be a food allergen? I have not searched the allergy or toxicology literature. It is evident that with any vinegar there is a finite content of dissolved solids that consists of inorganic salts, trace metals, and nitrogenous and other organic materials that could originate from the nutrient mix or as byproducts of the metabolism, death and lysis of the Acetobacter, or in the case of cider vinegar, from the variety of materials pressed out of the apple cores and peels and juice or produced in the yeast fermentation that yields alcohol for the subsequent acetous fermentation. Total solids in vinegars may approximate several percent, practically equal to the acetic acid concentration, and there may be constituents to which some people, celiac or not, are sensitive, but it is inconceivable to me that a gliadin or a gliadin peptide could be one of those constitutents. ========================================================================= Date: Mon, 29 Apr 1996 12:07:24 +0100 From: "P.SHATTOCK" (hs0psh@ORAC.SUNDERLAND.AC.UK) Subject: Methyl Cellulose Just for the record (and to correct a mistake inspired by the Ener-G spokesperson). Methyl cellulose is not a petroleum derivative. It is formed from cellulose which is a glucose polymer derived from the cell walls of plants. It is formed by reaction of the cellulose with methanol to produce methyl ether groupings at the primary (C-6) and secondary (C-2 and C-3) alcohol groups of the glucose units in the cellulose chain. The grade used pharmaceuticaly has 2-3 (average) ether groups per glucose unit. (Apologies for the technicality of the reply - a colleague prepared it for me and I felt obliged to send it as written.) It is used like xanthan gum though. Paul Shattock ========================================================================= Date: Fri, 3 May 1996 09:10:01 EDT From: Bill Elkus (Bill_Elkus@JEFCO.COM) Subject: Re: Fecal Occult Blood, Elevated Liver Enzymes This week, there were two posts about the New England Journal of Medicine article on blood in the stools of celiacs, and elevated liver enzymes. The following is being forwarded with Dr. Horvath's permission: From: khorvath @ umabnet.ab.umd.edu (Karoly Horvath) @ MHS Date: 05/02/96 08:20:20 AM FECAL OCCULT BLOOD The cited NEJM paper found occult intestinal bleeding in patients who had some degree (partial and total) of intestinal villus atrophy. However, this paper have certain methodological problems. The first, and most important -as you can read in the editorial comment- that they did not place the patient on specicific diet before collecting the stool. It is a rule that the patients should be on a diet which eliminate all the peroxidase containing food. So this may increase the number of false positive cases. The second problem that the hemoccult test is only a screening method, which does not give information about the degree of blood loss. The test can be positive in the presence of small amount of blood in the stool. While this paper has limitations, I should accept that patients with mucosal atrophy and inflammation have small amount of blood loss. So I do not have any doubt regarding the final conclusion of paper, that patients with active CD have blood loss in the stool. This is not surprising and not a novel finding. To avoid any panic in the celiac community I do not recommend to post this finding without appropriate comment to the Celiac List. We should emphasize one sentence from this paper: "ALL THE PATIENTS WITH PREVIOUSLY DIAGNOSED AND TREATED CELIAC SPRUE HAD NEGATIVE TESTS FOR FECAL OCCULT BLOOD." LIVER ENZYMES It is well known that patient with intestinal inflammation may have elevated liver enzymes. The well known examples are patients with inflammatory bowel disease. Because patients with active CD have significant accumulation of inflammatory cells in the mucosa it is not suprising that a percentage of patients with active CD have elevated liver enzymes. However, this is a temporary elevation, which disappears on gluten-free diet. The explanation is not clear for this finding. The simplified explanation is that there is an increased permeability in the inflammed intestinal segments and different toxins, which normally are detoxified by the enterocyte Cytochrom P450 enzyme system, enter the portal circulation and there is an increased toxin load into the liver. Karoly Horvath, M.D., Ph.D. Baltimore ========================================================================= Date: Fri, 3 May 1996 19:04:04 EDT From: Bill Elkus (Bill_Elkus@JEFCO.COM) Subject: Re: Call for opinions. Kerwin Myler (email@example.com) said: )I've been diagnosed for about three weeks now. .. snip... )My gastro-enterologist seems to think that the occasional consumption of )trace amounts of gluten will not be harmful. What do you think? Kerwin, welcome to one of the central controversies of the celiac world! Two months ago, we made a special post on this topic, which I will repeat here for the benefit of other new subscribers: Date: Sat, 16 Mar 1996 From: Bill Elkus (Bill_Elkus@JEFCO.COM) Subject: CEL-PRO Summary: Maximum Gluten Discussions On February 8th, I sent the following post to the professional discussion group on celiac ("cel-pro"): )Much of the disagreement about products on the lay-Celiac List, and )generally within the Celiac community, is ultimately due to confusion )about the maximum tolerable daily level of gluten. ) )Can anyone help? Even though this issue is not fully settled (and )probably varies amongst individuals), discussing even vague boundaries )would still be very useful to Celiacs who are confronted with daily )decisions on which foods to avoid. This resulted in a lengthy discussion on the concept of how much gluten a typical Celiac can tolerate in a day without damage. The listowners have edited and compiled the discussions, and have created a downloadable file (about 15 pages) which anyone can access by sending an email to LISTSERV@LISTSERV.ICORS.ORG with GET CELIAC MXGLUTEN in the body of the message. The Listowner's summary of (and commentary on) the discussion follow: 1) We should say at the outset that the everyday reality of many celiac clinicians is that some patients are consuming thousands of milligrams of gluten per day, either through lax attitudes or inadequate information about what products contain gluten. Therefore, a discussion on the fine details of 4 to 100 mg of gluten may seem esoteric to some clinicians. 2) The maximum gluten question is inherently difficult to answer. It's almost impossible to scientifically "prove a negative" -- i.e. that no damage has occurred. How does one define the number of places to look for damage? Just the intestines? 3) Even if a study could be designed to "prove the negative", it is very hard to find confirmed celiacs willing to subject themselves to experiments that may injure them, especially in sufficient numbers to create a large study group. 4) The use of special low-gluten wheat starch in many European countries, with its small (but non-zero) amounts of gluten, is seen by some as establishing a de-facto lower limit where no damage has been detected to date. One study (Ejderhamn) put this in the 4 to 14 milligrams per day range. Another European estimates it typically at 40 mg per day. 5) On the other hand, there was one study (Catassi) showing at 100 mg gluten per day, some adverse changes in the intestine could be seen. 6) Most U.S. Celiac support groups, and some professionals, feel that due to (a) the many current scientific unknowns, (b) the inadvertent gluten consumed due to cross-contamination in the manufacturing process of some foods, and (c) the availability of gluten-free alternative foods, there is no reason to intentionally ingest any amount of gluten. Others feel this position is too extreme. 7) Personal symptoms may be an indication of gluten ingestion but they are not scientific proof of gluten damage, or even of gluten ingestion! There are other ingredients that can give false "celiac symptoms" in allergic and/or susceptible individuals. These symptoms are extremely diverse and vary according to the individual and their sensitivity. If you experience "celiac symptoms" then it is your personal choice whether to avoid the product. It is prudent to investigate the product's ingredients and processing methods to determine the source of the gluten or your personal "allergic reaction". 8) On the other hand, it is equally important to realize that the LACK of "celiac symptoms" is NOT proof that no damage is being caused. Celiac clinicians report many examples of previously undiagnosed celiacs with abnormal biopsies and no obvious gastrointestinal symptoms. One value of a post-gluten-free-diet biopsy is to confirm that your diet is working properly, even if you do not have obvious celiac symptoms. 9) Our personal "bottom line" is that it is impossible to state with confidence a limit below which no damage occurs from gluten, so we attempt to maintain a zero-gluten policy. However we recognize this as our personal choice, not necessarily scientific reality, and we feel it is inappropriate to criticize others who have come to a personal decision to use a low-gluten diet. (Remember that 40 mg of gluten is contained in about 1/100th of a slice of regular full gluten bread!) Sincerely, Bill Elkus, for The Listowners ========================================================================= Date: Wed, 8 May 1996 12:28:02 EDT From: Bill Elkus (Bill_Elkus@JEFCO.COM) Subject: Dr. Murray on 'curing' CD Gayle Kennedy (firstname.lastname@example.org) said: )....I met a Peace Corps couple (retired folks) whose daughter )was diagnosed with celiac disease back in the 40's in NYC. The doctor )said he could cure her if she ate a diet completely void of carbohydrates )for one full year. .....(snip) )after a year the daughter returned to a normal diet - now in her 50's she )continues to eat everything and has had no recurrence. ...(snip) ) )You doubters may think it was an incorrect diagnosis. Others may think )she will eventually develop symptoms or worse, but almost 50 years is a )long time of a regular diet with no complications. The following reply is being posted with Joe Murray's permission: There have been a number of attempts to put Celiacs in remission back on a gluten containing diet. (also known as challenge). The length of time to relapse varies enormously from weeks to years and may or may not be associated with the same or even symptoms. The diagnosis of celiac disease in the 40's was more difficult than now in that no biopsies were available to confirm the diagnosis and it is hard to know it there was celiac disease in the first place. Many patients put back on the gluten do not actually eat very much of it and may not have very bad symptoms but most if not all will eventually develop the problem in the intestine eventually. Not medical advice Joe Murray University of Iowa. ========================================================================= Date: Sat, 11 May 1996 23:15:29 +0100 From: "P.SHATTOCK" (hs0psh@ORAC.SUNDERLAND.AC.UK) Subject: Gluten Free Beer (Update) Last November (I think it was but I have deleted my post) I mentioned that we were trying to develop a genuinely gluten free beer which would be suitable for people with Coeliac Disease. An undergraduate student has been working on this as her final year project and produced a couple of brews prepared from Sorghum grains. First the Good News. The beer is clear and reasonably coloured; the head is acceptable; the alcohol content is high enough (5.1%) and it appears to be genuinely gluten free (limited tests using 2 Dimensional gel-electrophoresis). The odour is not too attractive. Now the Bad News. The brews scored the lowest marks ever recorded by our panel of regular "beer tasters". I have to agree with the "tasters". The aftertaste was particularly "memorable" and required several pints of regular commercial ale to dislodge from the palate. Our "Brew Master" is not too discouraged though and has a few ideas which he (seriously) believes will ameliorate the problem. I would be interested to know if any other brewers out there have been successful. Paul Shattock ========================================================================= Date: Wed, 15 May 1996 09:41:00 CST From: "Joe Murray, M.D." (Murray@INTMED-PO.INT-MED.UIOWA.EDU) Subject: re breastfeeding and celiac disease Breastfeeding is highly desirable from the infant's point of view. It does place special nutritional demands on the mother, for calories, calcium and other nutrients as well as the fatigue that goes with having a small infant to care for. There should be no specific contraindication for breastfeeding. Many peoples around the world very adequately feed their infants up to the age of 2 , both gluten free and often with marginal nutrition at best. This would be the case in asia especially. I suggest to my patients in general 1. to precook as much as possible before delivery (its obviously a chore to prepare food and look after a infant.) 2. eat a diet a diet high in calories and really emphasize the fluid intake, drink lots and lots of fluids more than you think you need by thirst alone avoid caffiene of course. 3. Take plenty of calcium and 100% of multivitamins. Extra vitamins only if there is a specific deficit and then only under close doctor monitoring. 4. Get as much help with holding and changing the baby etc as you can. 5. And relax about the breastfeeding as much as possible, A good rocking chair or glider is a wonderful aid for this. Not medical advice Joe Murray ========================================================================= Date: Fri, 24 May 1996 10:49:19 PDT From: "Donald D. Kasarda" (kasarda@PW.USDA.GOV) Subject: Re: allowed vs. not allowed Personally, I think Karen makes some good points and I think the Canadian Celiac Association has always done a good job in keeping things in balance. My one question has to do with malt vinegar. I don't know how malt vinegar is prepared, but have assumed (perhaps wrongly) that it probably is not a distilled product because of the color and strong flavor. Is there no extract of barley malt incorporated into malt vinegar? If any barley malt is included for flavor, then there may be some harmful barley hordein peptides in the vinegar. These would not distill over into the vinegar, however, so it comes down to whether or not undistilled material is included in a barley malt vinegar. Perhaps someone reading the list is knowledgeable about the process used for making malt vinegar. I don't think there should be any problem related to celiac disease with white vinegars made from distilled alcohol because the harmful peptides are not volatile and would not distill over into the alcohol. Don Kasarda, Albany, CA )There are some problems with generalization since in Canada the Canadian )Celiac Association has caramel color on the ALLOWED list. We also have )alcohol (not beer or some wines) and vinegar including malt vinegar on our )ALLOWED list because of the distillation process. ) (snip) )Karen, Edmonton, Alberta, Canada ) )email@example.com ========================================================================= Date: Fri, 24 May 1996 23:24:48 -0400 From: khorvath@UMABNET.AB.UMD.EDU Subject: Re: Oat consumption and CD There is an other work supporting that oat prolamines are not innocent for the celiac small intestine. The Journal of Pediatric Gastroenterology and Nutrition (1996;22:414) published the abstracts of the forthcoming ESPGAN Meeting (June 4-8, Munich, Germany). Troncone et al will present their work: "Oat prolamines activate mucosal immune response in the in vitro cultured treated coeliac mucosa" The conclusion is that "oat prolamines are able to activate the T-cell mediated mucosal immune response in the coeliac jejunum, and represent a warning against the inclusion of oats in the diet of coeliac patients." Karoly Horvath, M.D. Baltimore ========================================================================= Date: Sun, 26 May 1996 17:14:36 PDT From: "Donald D. Kasarda" (kasarda@PW.USDA.GOV) Subject: oats Comments from Don Kasarda (Albany, CA) on the recent post by Dr. Horvath. The work from Prof. Auricchio's laboratory (Troncone et al.) in Naples is certainly of interest and I shall look forward to seeing the details, but I will just point out for the sake of balance that studies with patients who ingest, or have instilled into their intestines, the substance to be tested represent the "gold standard" and in vitro testing (that is, in glass, or in the test-tube), while valuable, does not carry as much weight. The results from the Finnish group and from Dr. Feighery's group (not yet published), Dublin, Ireland, are very impressive. The results based on in vitro testing would have to be truly exceptional to undermine the excellent work that has been done on the safety of oats. So, we shall have to wait and see, but I doubt there is reason to be overly concerned just yet. ========================================================================= Date: Mon, 27 May 1996 12:38:04 PDT From: "Donald D. Kasarda" (kasarda@PW.USDA.GOV) Subject: caramel color Comments from Don Kasarda, Albany, CA Don Wiss, who does excellent research and provides an enormous amount of valuable information to celiac patients, posted a message that included the standard of identity for caramel color, which follows: Caramel Color The problem with caramel color is it may or may not contain gluten depending on how it is manufactured. In the U.S.A. caramel color must conform with the FDA standard of identity from 21CFR CH.1. This statute says- The color additive caramel is the dark-brown liquid or solid material resulting from the carefully controlled heat treatment of the following food grade carbohydrates: Dextrose (corn sugar) Invert sugar Lactose (milk sugar) Malt syrup (usually from barley malt) Molasses (from cane) Starch Hydrolysates and fractions thereof (can include wheat) Sucrose (cane or beet) (Also acids, alkalis and salts are listed which may be employed to assist caramelization). Now, there is certainly a possibility that some toxic peptides might end up in caramel color made from two of the seven possible sources listed above--from malt syrup or from wheat starch. A person who has decided that strictly defined zero gluten is his or her goal, should avoid caramel color on that basis. However, for those of you who like to hear the other side (I know there are some because you send me messages occasionally), I will point out that: 1) the amount of gluten peptides likely to end up in malt syrup or wheat starch is very small, hence the amount that ends up in caramel color will be very small. 2) Many Europeans eat wheat starch products without any clear evidence that the vast majority are harmed by this. 3) The amount of caramel color used in products makes up a small amount of the product. 4) The process of caramelization might destroy active peptides although this has not been studied to my knowledge. Is caramel color worth worrying about? I think the decision is up to the individual and his or her personal risk tolerance. If you have a Type I hypersensitivity response to gluten (this is the type of response that can, in its extreme manifestations, kill a person who is stung by a bee or eats a single peanut), of course you should avoid even minute amounts of gluten. It is my impression that very few celiac patients have a Type I response (perhaps others will comment on this). Disclaimer: I am a research chemist, and not a physician. This is not medical advice. It is information provided for the purposes of education and discussion. ========================================================================= Date: Mon, 27 May 1996 17:57:36 PDT From: "Donald D. Kasarda" (kasarda@PW.USDA.GOV) Subject: Carolyn Burket/spelt Carolyn, I am going to post this to the list rather than just to you because it may be of interest to others. Spelt simply is wheat. It is not some other grain, not an alternative to wheat. Spelt does have alpha-gliadin. It also reacts positively in the Australian antibody test. Several papers indicating this have been published recently. I will dig up the references upon request. I think you are probably doing yourself harm by eating spelt if you have celiac disease or wheat allergy. Many celiac patients do not have immediately recognized symptoms from eating wheat. Some younger patients have returned to a normal diet for years before finally breaking down again. Again, this is documented in the literature and I will dig up references upon request. Don Kasarda, Albany, CA ========================================================================= Date: Sat, 1 Jun 1996 08:15:45 GMT From: William Elkus (Maxwell@LAMG.COM) Subject: Honey, Milk and Meat GF? George V. Spanos (72253.3372@COMPUSERVE.com) said: )I remember reading something about not all honey being gluten-free. )Is this true? I have never heard any reputable source claim that honey is not GF, and would be interested in hearing from anyone who has. From time to time, the issue arises whether animals who somehow digest parts of a gluten- producing plant can carry though the intact gluten into foods: milk, meat, or even honey. Months ago, we asked this question to the cel-pro group, but no one had a response. The listowners are not aware of any research on this issue. Don Kasarda, in private email (reprinted here with his permission) had the following to say about honey and milk: DK) ...honey should not be a problem as far as the bees are concerned. DK) All grasses have florets, essentially flowers, but these would not DK) have any gluten proteins in the pollen produced within them (and DK) gluten protein synthesis doesn't begin until pollination has DK) occurred). Also, I don't think bees bother much with grasses DK) (don't know for sure) because the flowers are so small and access DK) to pollen is somewhat limited. DK) DK)The processors of honey products? I don't know if they would have DK)any reason to add gluten. DK) DK) ...although I feel pretty certain about the situation with honey, DK) I don't know of any actual research regarding, say, the possibility DK) that if a cow is fed wheat some gluten peptides might end up in the DK) milk. My guess is that ruminant digestion being different from DK) human digestion, this may not happen, but I can't be sure of DK) course. In the early days of our List, Dr. Reichelt posted citations to journal articles showing that there are detectable amounts of gluten in mother's milk, although the amounts are very small. If anyone has seen research on this issue, please post it. Bill Elkus Los Angeles ========================================================================= Date: Tue, 4 Jun 1996 19:37:00 -0400 From: Don Wiss (donwiss@PANIX.COM) Subject: Reichelt on: Bladder control. Many parents report that their children suddenly gain control of their bladder or bowels after beginning a gluten/casein free diet. Dr. Reichelt was asked if he knew why this occurs. His reply follows: Date: 4 June 1996 6:25 AM Subject: Bladder control. From: Kalle Reichelt,K.L.Reichelt@rh.uio.no Hi. I really have no idea why this is possible. We have noticed that many children on diet stop soiling themselves and this is especially the case where stool control has been lacking. Could it be that maturation of the central nervous Systems picks up again????. After all opioids, like the exorphins that we have demonstrated in autism, inhibit brain maturation.(1-2). A meeting abstract point in similar direction(3) Ref: 1: Zagon IS and Mclaughlin PJ (1984) naltrexone modualates body and brain development in rats: A role for endogenous opioid systems in growth Life Sci 35: 2057-2064. 2: Zagon IS and McLaughlin PJ (1987) Endogenous opioid systems regulate cell proliferation in the developing rat brain. Brain Res 412:68-72. 3: Tenconi B et al (1991) Prenatal exposure to opiates alters reactive pruning and regeneration of serotoninergic neurons. Brain Dysfunct 4: 49-50. All the best Cheers TINY K. Reichelt Pediatric Research Institute N-0027 Oslo, Norway Tel: +47 22 86 90 45 Fax: +47 22 86 91 17 E-mail: K.L.Reichelt@rh.uio.no ========================================================================= Date: Thu, 6 Jun 1996 20:11:53 PDT From: "Donald D. Kasarda" (kasarda@PW.USDA.GOV) Subject: over-the-counter medications Comments on over-the-counter medications from Don Kasarda, Albany, California I have been reluctant to get into the whole medication question because I cannot offer solid proof for my opinions and many list members are extremely conservative when it comes to the question of avoiding gluten, even to the extent of refusing to drink or eat anything that might have grain alcohol in it. In consideration of the large amount of continuing discussion on this list of medications, however,I will just say I suspect that medications are hardly worth worrying about unless you are consuming them in very large amounts over long periods of time. I would guess that almost all are "gluten-free" in the celiac sense, whereas those that are not would, with some possible rare exceptions, have very little gluten in them. I doubt that traces of gluten (less than say 5 mg per day) are significantly harmful for 99 and 44/100 percent of celiac patients. With regard to the following from a recent posting: )He began by )confirming that the product is gluten free and then added that one of the )ingredients--zein--is sometimes derived from gluten but insisted that when )their customer service people say the product is gluten free that this is )correct information. He finally did agree that celiacs should probably not )use it, but continued to insist that the customer service reps were giving )out correct information! Pretty unbelievable. He did say, by the way, )that he is a pharmacist. Once again, we run into semantic problems. Zein is a protein from corn (the equivalent of gliadin in wheat). Most unfortunately, in recent years some companies have begun calling the protein residue left after starch processing, corn gluten. This residue does contain zein proteins. I suspect the contention that zein might be prepared from gluten is related to this use of the term corn gluten. Strictly speaking, gluten is only found in wheat, but celiac patients began extending the term to any harmful proteins and peptides, such as those from rye and barley, so I guess we can't condemn the maize (corn) processors too much for also appropriating the term. My guess is that the customer service reps were indeed giving out correct information to celiac patients. Disclaimer: As I said, I cannot offer solid proof for these opinions and I do not offer them as medical advice. ========================================================================= Date: Sat, 8 Jun 1996 18:28:00 PDT From: "Donald D. Kasarda" (kasarda@PW.USDA.GOV) Subject: Re: about the genetically engineered rice Comment from Don Kasarda, Albany, California I largely agree with Javier's comments. Although about 50-100 genes code for the gluten proteins in wheat, the genes that were used to increase resistance in rice were almost certainly not genes coding for gluten proteins. I do think, however, that celiac patients have reason to be wary of what changes are genetically engineered in plants. Working towards proper labeling seems reasonable. ========================================================================= Date: Mon, 10 Jun 1996 20:11:54 PDT From: "Donald D. Kasarda" (kasarda@PW.USDA.GOV) Subject: gluten function The gluten proteins in wheat are seed (grain) storage proteins that provide a source of nitrogen and amino acids for the new plant upon germination of the embryo. The high levels of glutamine and proline in wheat gluten proteins are present presumably because these amino acids can be efficiently transformed by the plant into all the other amino acids (and then all the many different proteins) needed by the new wheat plant for differentiation and growth. Don Kasarda, Albany, CA ========================================================================= Date: Thu, 20 Jun 1996 16:00:08 +0000 From: Phil Sheard (phil.sheard@STONEBOW.OTAGO.AC.NZ) Subject: ayurvedic medicines Shashi Pathak wrote requesting info on the components Livotrit Plus. I looked up a multi-volume encyclopedia entitled "Indian Medicinal Plants" published in 1994 by Orient Longman. Unfortunately, our library has only the first 3 volumes! It seems these agents have been used for many years in Hindu medicine (hence the term "ayurvedic"). I was able to find the following: Andographis paniculata, the green chinetta, used for hyperdipsia, burning sensation, wounds, ulcers, fever, malaria, inflammation, cough, bronchitis, skin diseases, leprosy, pruritis, intestinal worms, dyspepsia, flatulence, colic, diarrhea, dysentery Boerhaavia diffusa, hogweed or pigweed, used for inflammation lumbago, myalgia, scabies, cardiac disorders, jaundice, anaemia, dyspepsia, constipation, cough, bronchitis and general debility Eclipta alba, trailing eclipta, good for blackening and strengthening the hair, stopping heamorrhages and strengthening gums. Seeds good for increasing sexual vigour Berberis aristata, barberry, used primarily as antidiarrhea, as is Tinospora cordifolia (they both contain the alkaloid berberine). These lists are abridged, and their reputed usefulness in many cases is much more extensive than in the lists I have included here. Note that large doses of many of these agents cause the symptoms they are supposed to alleviate, for example, high doses of berberine cause diarrhea Looks to me as though this has been formulated to alleviate diarrhea and gastrointestinal malaise, among other things. I guess you'll never be able to walk past a hogweed again without wondering.... Hope you find this helpful Phil Philip Sheard Developmental Biology Unit, Department of Physiology, University of Otago Medical School, Dunedin, New Zealand. Ph (64 3) 479-7344 Fax (64 3) 479-7323 ========================================================================= Date: Thu, 20 Jun 1996 12:14:51 PDT From: "Donald D. Kasarda" (kasarda@PW.USDA.GOV) Subject: Re: Request help from chemists Comments from Don Kasarda, Albany, California I wrote the following reply before seeing the post by Jim Barron. I agree with his comments and will add my own even though they duplicate what he has said. The kicker in this description (which is copied after this message) is amino acids and low molecular (weight?) peptides. Even though most gluten proteins contain at least 250 amino acids linked together like beads on a string, peptides resulting from breakdown of gluten proteins that contain even 14 amino acids linked together have been shown to be toxic in celiac disease. In order to say that the soy sauce was not harmful to celiac patients, it would be necessary to show that the low-molecular-weight peptides produced from gluten by the hydrolytic action of the various enzymes do not include any remaining peptides with 14 amino acids or more. Furthermore, if any peptides of 14 amino acids or more remain, then amino acid sequencing would be necessary to determine whether or not they might fit with known toxic sequences. Of course, quantities would be important. I have some doubt that minute quantities (below a certain level of daily intake) of potentially harmful peptides are worth worrying about by most celiac patients, but other scientists may disagree. Technically speaking, however, I would be mighty surprised if soy sauce produced from wheat did not contain at least some harmful peptides derived from the breakdown of gluten. )Have recently received a letter from Kikkoman International, Inc. concerning )soy sauce with the following body ) )All - please read with caution ) )"Re: No wheat gluten in kikkoman soy sauce" (Caution read on) ) )"Kikkoman soy sauce is produced from water, soybeans, wheat and salt using a )natural brewing process which consists of enzymatic actions of specified )micro-organisms. The brine fermentation takes approximately six months and )results in the fermentation of various acids, alcohols and other flavor )compounds by yeasts and lactic acid bacteria. ) )During this process all soybeans and wheat proteins are completely hydrolyzed )to amino acids and low-molecular peptides by the action of proteolytic )enzymes of the Koji-mould used. ) )It is free from wheat gluten as the result of enzymatic hydrolysis during )fermentaion." end of quote. ) )So all of you with a chemistry background, is this really possible if you )begin with wheat as one of the ingredients? My feeling is that it is NOT )gluten free. ) )Any help in clarifying this matter will be much appreciated. ) )Please reply to firstname.lastname@example.org ) )Thank you Marjorie Rogers ========================================================================= Date: Sat, 29 Jun 1996 17:50:24 PDT From: "Donald D. Kasarda" (kasarda@PW.USDA.GOV) Subject: FDA Comments from Don Kasarda, Albany, California I have read the posting by Herb Bolz on the FDA and the follow-up postings by AMS and Jim Barron. I strongly support the views expressed by Herb Bolz and consider them well balanced and reasonable. As someone who has worked as a scientist in private industry (Du Pont, the old AT&T Bell Labs), at the University of California, and for a long time as a government scientist with the Agricultural Research Service of the US Department of Agriculture, I would say that the FDA is an outstanding agency, one that functions better than most (conservative adjective) private companies, and that Dr. Kessler is an outstanding director. We are all are quite fortunate to have this organization protecting us. It isn't perfect--I haven't seen an organization that is--but I think the insulting comments about FDA employees by AMS are highly unwarranted. My personal feeling is that we need to seek balance and reason in our views, and that the approaches recommended by AMS and Jim Barron will achieve little for celiac patients in the long run.
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