This file contains postings made by the following professionals: Dr. Ivor Hill--a pediatric gastroenterologist at the University of Maryland School of Medicine in Baltimore. Dr. Hill is attempting to establish a network of collaborators that will be involved in gathering preliminary data to support his belief that if we actively look for CD we will diagnose many more cases at an earlier age. Donald Kasarda--a grain specialist working for the United States Department of Agriculture. 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. Dr. Kalle Reichelt--involved in research in Norway. He is looking into the impact of gluten intolerance on certain individuals with developmental delays. (Disclaimer: Verify this information before applying it to your situation.) ========================================================================= Date: Sun, 1 Jan 1995 16:24:07 PST From: "Donald D. Kasarda" (kasarda@PW.USDA.gov) Subject: cost of testing lab )Bill Elkus raised a fascinating point below about the possibility of creating )an independent lab. Might Don Kasarda or Joe Murray have an idea about how )much $$ it might cost to set up and maintain one at a university? George Balch asked if I could estimate the cost of a testing lab for products. It is somewhat difficult because the cost would depend on the situation. For example, will the site (university?) eat the cost of laboratory space and equipment, or will that have to be provided. Will the work be carried out by addition of one or two people to an existing unit, or will an independent operation be set up. That sort of thing. I would guess that a minimal amount would be around $100,000 per year. Long term funding would, of course, be desirable. A Ph.D.-level scientist worth anything will expect a salary somewhere between $35,000 and $60,000 per year depending on background and experience (even more for the very best with highly pertinent experience). M.S. level people will cost only slightly less. B.S. level people will be paid in the $20,000 to $40,000 range, but would usually serve mainly as assistants. B.S. level people in science are usually not qualified to operate independently (obviously there are be major exceptions to this; there is no magic in a degree at any level), because many of the better graduates at the bachelor's level have tended to go on for advanced degrees during the past few decades as a consequence of abundant teaching and research assistantships for science graduate students. Also, it is difficult to hire decently-trained scientific people for short terms. Good people who have sweated through 4-10 years of university education in scientific fields are seldom willing to work for six months here and six months there. Adaptation to new work is often slow for people who have been working in another area--months, sometimes years, depending on the techniques to be used, how difficult the problem to be addressed is, and the background of the person involved. In my area, which is largely involved with understanding the fundamental molecular structure of gluten proteins, their interactions, and the implications of both for wheat quality (and celiac disease), I have found that even very good new Ph. D.'s take 2-5 years to approach solid understanding of the area, to become at ease with the many different techniques we use, and to develop a capablity to contribute independently. One could argue with almost every point I have brought up, but my own feeling is that if the effort is too much based on a shoestring level of funding, you will probably not get the quality of output that is desired. Some of the problems with products are difficult to address. A major one is that manufacturers often buy ingredients from the cheapest sources, which often change month by month. One source may have a gluten-free ingredient, while the next one may not. Often the ingredient manufacturers are protective of their information and will not tell the next-stage manufacturer how they made the product or what ingredients were involved in the process (for example, was the source of a particular enzyme a crude, malted barly extract, or was it bioengineered product from bacteria?). Consequently, even with good will, a very large manufacturer will often have difficulty saying if the product is gluten-free or not. And even though such large companies could contract for gluten-free ingredients, this would cost them money and I doubt the celiac market is sufficient to recompense them for this. Hope this isn't too far off what George Balch wanted to know. Don Kasarda ========================================================================= Date: Tue, 3 Jan 1995 11:32:39 PST From: "Donald D. Kasarda" (kasarda@PW.USDA.gov) Subject: Re: testing for gluten )Can Don (Kasarda), and/or others, please comment on two points? ) )(1) What is the cost, availability and reliability of home gluten testing )kits? The Gluten Free Pantry offers a kit from Australia, I have never tried )it. Are there others available? If the food manufacturer whose brand name )goes on the product cannot honestly tell us whether or not there is gluten in )their products, because they really don't know, then it seems the only other )alternative is for the consumer to test the food --- or everyone cooks their )own food from fresh raw ingredients, which is not practical these days. ) )(2) Which types of ingredients are the most (or least) subject to the hidden )vendor problem outlined about? At least we could know which types of foods )have the most accidental gluten risk. ) )Thanks, ) Bill Elkus Bill, I can't say anything much about your second question, but in regard to the first: We have used the Australian (developed by John Skerritt) home test kit to check proteins in wheat starch. Although we did not do extensive studies, the test seemed to work exactly as it was supposed to. One sample that should have had enough protein to show up in the test did so with a clear light blue color. The other sample, which was quite low in protein (although by later testing this sample was found to have gluten proteins in minute amounts) and should have been below the stated sensitivity of the home test, did not show any color. The Australians also market a lab test kit that has about 10-fold higher sensitivity than the home test kit. This kit is quite expensive and we did not buy it, but I think it would have indicated the gluten in the low-protein starch sample. I think the Australian tests work well with fairly simple materials like wheat starch or bread. It would probably show up flour used on conveyor belts to prevent sticking of candy bars, for example. However, I think it is difficult to be sure that the test will always work well when used to analyze a product with various complicating ingredients. Mary Alice Warren has told me that the Australian test gives a blue color with certain acid solutions, including pure lemon juice (if I recall correctly). Thus, there may be problems in testing complex foods having many other components that might interfere with the test. I think it will be difficult to come up with a test that is insensitive to all possible complicating substances in complex foods (gravy, casseroles, "nutrition" candy bars, and so forth). There may be similar products to the Australian test on the market in Europe. I know some were headed for commercialization, but I don't know if they are now available or not. My guess is that, because of the chemistries involved, there will always be at least a slight chance of an incorrect result no matter what test is used. To sum up, the Australian test seems like a pretty good one to me, and worth trying for many products, but I doubt it is absolutely failure proof. I think, in general, it is still best to track down the manufacturing information and avoid anything that doesn't check out rather than hoping for a simple universal test that will never give you the wrong answer. On the basis of my experience, I would say that analysis of many materials requires a certain amount of research because no single, simple test will give you the correct answer. I suspect, but cannot be absolutely sure, that the concern of many about trace amounts of gluten in foods that on the whole are not likely to contain gluten (grain alcohol, white vinegar,for example)is unwarranted, that the whole thing is being overblown, but without human testing and double-blind studies, who knows? Sure, there may be someone who reacts to a single dose of, say, 0.1 mg of gliadin in some serious way, but I think such people are very rare. If this happens to 1 person in 10,000, or one in 100,000, or 1 in 1,000,000, is it worthwhile for everyone concerned to avoid all manufactured foods and make everything from scratch. As usual, we can only say that it is a personal decision that each person must make for himself or herself. Personally, I think that many potentially gluten-sensitive people are seeking a risk-free world that will never exist. When you cross the road, drive a car, fly in an airliner, you are taking a certain amount of risk, but you feel you are prepared to take that risk. To some extent, the same decisions apply to eating. Pay attention to what your body tells you and avoid things that don't seem to agree with you (I do), but be skeptical and perhaps carry out some experimentation of your own. Maybe try the food again when you are feeling well. Perhaps you will not have the same reaction. Don Kasarda ========================================================================= Date: Tue, 3 Jan 1995 10:25:00 GMT From: Kalle Reichelt, (K.L.Reichelt@rh.uio.no) Subject: Intestinal permeability in schizophrenia The data on this are conflicting and have been studies using different techniques. 1: Wood NC et al (1987) Brit j psychiat 150:853-856 used the cellobiose/mannitol test and found increased permeability in chronic schizophrenics in 11 out of 32 patients. 2: Lambert MT et al(1989) Brit J psychiat 155,619-622.:used Chromium labelled EDTA and found no difference in 12 schizophrenic patients , 12 patients in remission and normals. 3. We do however, all take up trace amounts of intact protein after a meal ( see eg.Husby S et al (1985)Scand J Immunol 22:83-92) so that a decreased breakdown of fragments of these proteins could easily lead to accumulation. One molecule of gluten contains 15 opioid sequences (Fukudome and Yoshikawa (1991)FEBS Letters 296:107-111) and even 2.5 nanomoles of protein per ml blood could therefore cause an "avalanche" of peptides being formed. The more so because peptidase defects regularly cause peptiduria (Watanabe Y et al (1993) Res Comm Chem Pathol Pharmacol 81:323-350; Abassi Z et al (1992) metabolism 41:683-685;Blau N et al (1980) J Inherit metab Dis 11 (Suppl 2) 240-242). Peptidura is of course a sign of hyperpeptidaemia. We do not really need increased uptake to get into trouble although that would accelerate the process and if sufficiently large it could overwhelm even normal breakdown capacity. That there is gut to blood to mother milk transport of intact food proteins is illustrated by papers where intact antigens were found in mothers milk (Axellson I et al (1986)Acta paed Scand 75:702-707;Kilshaw PJ and Cant AJ (1984)Int Arch Allergy Appl Immunol 75:8-15; Troncone R et al (1987) Acta paed Scand 76:453-456;Stuart CA et al (1984)Clin Allergy 14:533-535) 4. We all have IgG antibodies to food proteins indicating uptake of immunologically active proteins in trace quantities. In schizophrenia IgG antibody increases against gluten have been reported ( Dohan FC et al(1972)Biol Psychiat 5:127-131;Hekkens W Th et al (1980)in Biochemistry of schizophrenia and Addiction ( edit : Hemmings G ) Lancaster ,MTP press;Rix KJB et al (1985) PSYCHOL MED 15:347-354). Increased IgE antibodies to food proteins were also found in schizophrenics ( Sugerman AA et al (1982) Annal Allergy 48:166-171). Ashkenazi A et al (1979)Amer J psychiat 136:1306-1309: found that leukocytes reacted to a fraction of gluten in a fashion intermediate between coeliac disease and normal controls. Finally we have ( Reichelt Kl and LandmarkJ (1994) Biol psychiat :in press) found IgA antibody increases in schizophrenics diagnosed after DSM III and sex and age matched controls .These IgA antibodies were mainly against gliadin, gluten, lactoglobulin and casein. Unfortunately it is extremely difficult to finance research into diet and psychoses.Neuropharmacology has become very dominant for obvious reasons . The dismal state of the patients and their social integration in many cases clearly makes more research an urgent matter 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: Tue, 3 Jan 1995 21:39:01 PST From: "Donald D. Kasarda" (kasarda@PW.USDA.gov) Subject: Re: Gluten home testing )It sounds to me like home testing is worth a try. I understand that the )Austrailian kit is fairly reliable. Does anyone )know how I might go about getting one? Thanks. We bought our Medical Innovations Limited, Gluten Home Kit from Food Analytics, Inc., P. O. Box 43, Route 37, Massena, NY 13662 (Tel. 800-263-3677) for about $50. As a government employee, I guess I should add a disclaimer. The name of the product used is given for information purposes only and is not meant to exclude others that may be suitable, or to imply endorsement by the U. S. Department of Agriculture. ========================================================================= Date: Wed, 4 Jan 1995 16:21:25 PST From: "Donald D. Kasarda" (kasarda@PW.USDA.gov) Subject: Re: millet, buckwheat, quinoa etc. )Does anyone know the latin name of teff? Or its botanical )classification (plant family)? I refuse to try "non-wheat" grains until I )know whether they are closely related to problematic grains. Does anyone )know what kamut is? ) )Laura Johnson-Kelly )email@example.com ) Two of the Latin names for Teff are Eragrostis Tef and Eragrostis Abyssinica. Kawmut is Triticum polonicum and is very closely related to durum wheat, which is commonly used for pasta making. Triticum polonicum is more closely related to bread wheat than is rye or barley. Teff is a grass, but is likely to be safe for celiac patients on the basis of being more closely related to corn, sorghum and millet than to wheat, rye, barley, oats. Quinoa, amaranth, and buckwheat are not grasses, not even monocots, and so distantly related to wheat that, on that basis, they are unlikely to be active in celiac disease, although individuals may not tolerate them for some other reason. Don Kasarda ========================================================================= Date: Tue, 10 Jan 1995 17:59:17 PST From: "Donald D. Kasarda" (kasarda@PW.USDA.gov) Subject: Re: Gluten in OTC and Prescription Drugs Bill Elkus wrote: )...I was given a copy an article entitled "Gliadin in Pharmaceutical )Products" by Dr. S.S. Schiffman, Dept of Psychology, Duke )University, Bldg 9, Durham NC 27706 in the "Jof Pediatr Gastroenterol )Nutr, Vol 19, No. 1, 1994, page 27-33" ) )It tests for gliadin in 59 different frequently prescribed drugs and )OTC medications, and most of them came up positive, including )Tylenol, Actifed Plus, Benadryl, Excedrin and many others... Reply from Don Kasarda: I was sent the article in question by Michael Jones for my comments. Although I can not say that the results are invalid, I have some reservations about the use of a commercial antibody to gliadin that might cross react with minor components in the drugs. There was no mention in the article of control experiments that I think would be important for me to feel confidence in the results (although such experiments may have been done and not mentioned). For example, were control experiments to check for cross-reaction of the antibody preparation with corn starch and other gluten-free components of drugs carried out? Because the antibody preparation is crude, it will likely contain antibdodies to various other substances in addition to gliadins (perhaps even dietary components of what was fed to the animal used to make the antibodies), although these other antibodies would likely be present in much smaller amounts. Additionally, I would guess that the major drug companies are now aware of the potential problems with gluten in their products and I find it surprising that so many preparations showed up positive in this work. Until my questions are satisfied, I reserve judgement on this work. Elaine Hartsook, GIG, Seattle, has commented on this paper in one of her recent newsletters. I don't have time right now to pursue the matter with the authors of the paper to see what controls were done. Perhaps someone else does. ========================================================================= Date: Wed, 11 Jan 1995 17:56:42 PST From: "Donald D. Kasarda" (kasarda@PW.USDA.gov) Subject: CD and cancer Quotes from the paper by Richard F. Logan et al. 1989. "Mortality in celiac disease." Gastroenterology 97:265-271. "As anticipated, our study confirms the greatly increased relative risk of small intestinal lymphoma in celiacs." "Nevertheless it is clear that the absolute risk of a celiac dying from small-intestinal lymphoma is small, particularly when those whose lymphoma developed shortly after diagnosis are excluded." ========================================================================= Date: Fri, 13 Jan 1995 17:52:00 -0600 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.edu) Subject: experience with kidney disease either in CD or in family members of CD Has any one had experience with kidney disease either in CD or in family members of CD. Joe ========================================================================= Date: Mon, 16 Jan 1995 16:21:23 -0600 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.edu) Subject: Re: CeliAC DISEASE AND KIDNEY DISEASE. My inquiry about renal/kidney disease and celiac disease was specifically to inquire about individuals experience with the occurance of any of the various forms of nephritis in someone who also had celiac disease or in someone who had a close blood relative with celiac disease. I have already done a medline search and there is some conflicting research on the topic. Joe Murray ========================================================================= Date: Wed, 18 Jan 1995 21:18:13 -0600 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.edu) Subject: Re: iritis and CD I have heard of a case of iritis in celiac disease. This was (if i recollect properly) autoimmune in nature. The treatment is determined by the eye condition itself.. the coexistence of the two conditions does not alter the treatment of either. Interestingly Iritis is also seen more frequently in ulcerative colitis. Joe Murray PS if I find the original citation I will post it. ========================================================================= Date: Wed, 18 Jan 1995 21:28:25 -0600 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.edu) Subject: Re: Re infections and celiac disease Celiac patients may be prone to certain bacterial infections, This risk relates to functioning of the spleen that may be defective. The spleen is important in the response to certain bacteria especially pneumococcus. Older celiac should discuss with their Dr. about whether they should get Pneumovax which might help protect against this type of infection. another situation is IgA defeciency which a specific type of defeciency in one type of antibodies which affects about 2-3 % of celiacs. The presence of this antibody defect can make that individual more susceptible to infections also. It can be detected by measuring the level of IgA in the blood. I also leads affected individuals witha greater chance of giardia infections in the bowel that can cause celiac like damage( usually less severe and mostly short term). Joe murray ========================================================================= Date: Wed, 18 Jan 1995 21:37:27 -0600 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.edu) Subject: Re: The accidental ingestion of gluten The decision to induce vomiting in anyone who has ingested a potential problem substance is based on the substance and the potential or expected effects of the ingestion. In short if you know the kid is going to get really sick with several days of severe illness then immediate induction of vomiting with a pediatrician prescribed method may be justified. ( never use salty water). If the effects of the gluten are short and relatively mild then itys probably better to ride out the effects of the ingestion. Discuss it with the kids pediatrician as there are some kids who are at risk for aspiration with vomiting,(That means the vomit going into the lungs) Joe Murray This is provided as general information not as specific medical advice. ========================================================================= Date: Thu, 19 Jan 1995 17:13:17 GMT From: U165 (INFORMM.U165@UIAMVS.WEEG.UIOWA.edu) Subject: re celiac resources in western europe One of my patients is travelling to England and hence to Germany later this month. I would be grateful if any one out there has info on sources for GF foods or other resources that would be helpful for a joun eying student. He will be away for 5-8 months. Joe murray ========================================================================= Date: Mon, 23 Jan 1995 16:16:26 -0600 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.edu) Subject: Re: CEliac disease prevalence in the general population In response to the comment on the icellandic study. I am aware of 2 studies done on healthy individuals to screen for the prevalenvce of undiagnosed gluten senstivity. One in Linkoping Sweden and the other in northern Ireland. Both looked for gliadin antibodies in the blood of healthy individauls in the Irish study it was done on volunteer blood donors( who by selection are asymptomatic and have to weigh more than 110 pounds and have a normal blood count. In the Irish cas it was claimed that 1 in 100 were positive. In the swedish study one in 300. These stuies did not confirm all of the cases with biopsies so it is not clear how many positives were false positives. nevertheless it suggests that there is a signifigantly larger number of individuals whpo may harbour gluten senstivity. Regarding info in the USA. There are 2 studies one in children from Buffalo which suggestted a prevalence of 1 in 10,000 in western New York state. and A study reported last year from the Olmsted county epidemilogical project based at the mayo clinic which suggsted 1 in 5000 inhabitants of that county as having a diagnosis of CD. These two studies represent only the very tip of the iceberg. One study reported from Utah on the prevalrence of dermatiis Herpetiformis ( a skin manifestation of gluten sensitivity) suggested a prevalence of 1 in 10,000 for it in the Utah pop. This is interesting in that in Europe DH is thought to be much less common that CD. ???? are the ratios reversed here or is celiac disease much underdiagnosed? My guess based on my experience in Iowa is that it is underecognised and may even be more likely to present in more subtle ways here than elsewhere. It has been recognised in Scotland and other places that the rate of diagnosis does parallel suspicion for the illness by the physicians. What could, should be done to fill the information void. We and some others are looking at the preva;lence of CD in what are known in Europe to be high risk settings such as individuals with autoimmune disease. The screening of a large cohort of 'normal individuals with serology, would be the definiative study and others would like to do. What stopping us? Expense. To do this study requires a large amount of money. To get government funding you have to have preliminary data. To get prelimuinary data one has to do the study. To do the study one has to have the money. So you see the problem with this type of speculative study. Any ideas that anyone would like to suggest on this topic would be gratefully recieved. Mmeanwhile we'll keep nibbling away at the problem. Joe Murray ========================================================================= Date: Mon, 23 Jan 1995 16:21:39 -0600 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.edu) Subject: Re: CELIAC Disease and hair loss5 Hair loos in patients with celiac disease may be due to several things Malnutrition associated alopecia areata( patches of hair loss ) or universalis( total hair loss) both autoimmune conditions associated thyroid disease esp hypothyroidism Lupus ( the above is not an exhaustive list) Unrelated hair loss due male pattern baldness which can affect both men and women Often these problems can be helped by appropriate treatment. joe murray ========================================================================= Date: Mon, 23 Jan 1995 16:34:16 -0600 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.edu) Subject: Re: CELIAC disease and bone density5 Most celiacs who are diagnosed in adult live have deminished bone density when tested. The drop in bone density is likely due to either the malabsorbtion ( or decreased intake of calcium in dairy products) of calcium and possibly magnesium. In a smaller number of patients it amy be due to the malabsorbtion of vitamin D. In children it v=can cause rickets which is waekening and subsequent deformity of the bones primarily due to vit D deficiency. Botht he adult bne denstiy and the childhood changes usually reverse with the gluten fre diet. It is not clear how well post menopausal women can remineralise their bones. Some adults can present with what are pseudo-fractures of osteomalacia ( which is the equivalent of rickets. This can cause pain in the hip and shoulder girdles as well as back pain. There is as yet not research results in on the ue of so-called bone density building drugs that used by some specialists in osteoporosis. Hopefully most individuals can remineralise their bones witha GFD and supplementation of calcium intake. "maxing" out on Vitamin supplements is not recommended as some of the fat soluble vitamins can reach toxic levels if not carefully monitored. For example a dozen small carrots has lots of good things like b-carotene but if comsumed daily can result in life threatening vit A toxicity. That c=was common when carrot juice was in vogue. Joe Murray ========================================================================= Date: Mon, 23 Jan 1995 16:41:57 -0600 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.edu) Subject: Re: celiac disease and diabetes There is a well known association between CD and diabetes mellitus. Case series fromn Europe have documented a rate of association of about 3-10%. Our experience witha recent study hopefully soopn to be published is in agreement with that. Usually the DM is diagnosed first and the CD later if at all. It is certainly a dietary DOUBLE WHAMMY!! I may have advantages for the diabetes in that the control may improve after the introduction of the GFD due to more reliable absorbtion of the nutrients. If our estimates are right then there should be thousands ofpatients with type 1 diabetes out there who have CD aand dont know it. I currently care for about a dozen people with the combined disorders. Joe Murray ========================================================================= Date: Tue, 24 Jan 1995 19:58:27 -0600 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.edu) Subject: Re: Visits to the G/I Bill elkus asked> ) Do parents of a CD child on a strict GF diet, with confirmed negative CD ) antibodies once the diet has been establish, no adverse g/i symptoms (i.e ) bowel, cramps, stool), good growth and otherwise normal health....does this ) child still need to be seen by a g/i periodically, and if so, what does the g/i ) do during the exam Joe Murray answered ( general info only not specific mediacl advice) If the original biopsy was that of classic CD disease and there was a complete clinical response to the GFD, i.e.symptoms gone, deficiencies corrected, antibdies going from abnormal to the negative when done in a reliable fashion. then follow up biopsy is not necessary. Growth sudden be a along a reestablished path. The child is compliant with the gluten free then there may not be a need to continue to see pediatric GI. A reason to continue to do so maybe evry other year or so would be interact with resource people like dietitian, and mediacl update on developements as they may relate to the individual patients. I realise that may of the celiac community obtain this type of information themselves through support groups. In life long conditions that are diagnosed in childhood it is all too easy and frequent that the patient as they grow up forget about the problem and with changes in mediacl providers the Drs. forget about the significance of the diagnosis in later life. I see all too many pateitn with a childhood diagnosis of CD who have forgotten about it and drifted off the diet, who then present later in life with " ulcers" colitis" or irritable Bowel"n who undergo misdirected tests when the corect diagnosis is in their old history. This would be one advantage of a personel health data card that would follow people for life. In situations where the diagnosis is in some doubt there should be some careful follow up by the pediatric GI. Joe Murray ========================================================================= Date: Tue, 24 Jan 1995 20:11:46 -0600 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.edu) Subject: Re: Family incidence of celiac disease I am not sure if my monograph on the family incidence has been posted in the past to this listserve, I must must respond to the suggestion that a GFD could be started in family members who suspect that there is a problem in a family member of a celiac without confoirmation. I frequently see people who have already stared on the diet who after a variable lenght of time want to find out mostly because the diet is not all that easy especially if you're not a 100% sure yopu need to be on it. The diagnosis is much more complicate in someone already on a gluten restricted diet, the findins may be equivocal and hard to interpret. Blood are less reliable on a gluten free diet. In older individuals other more serious co=nditions may be missed like cancer of the bowel. Other disease are also more prevalent in family members of celiacs. If undertaken in a child without reasonable proof it is quite unfair to restrict someone unneessarily. I recognise that doctors are often to blame in ignoring or downplaying the risk. The patients who are fanmily members of confirmed celiacs should seek a further opinion if their doctor refuses to listen. This is becoming a problem with some of the HMO's in the US who may want to cut corners cost wise. I would be happy and frequently answer physiicans concerns or inquires about testing for celiac disease in relatives. Joe Murray ========================================================================= Date: Tue, 24 Jan 1995 20:19:50 -0600 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) Subject: Re: steatorrhea and celiac disease To clarify the meaning of the word steatorrhea, it is indeed the passage of smelly, bulky, bouyant, palke greasy stools. These may be liquid or semi formed. The causes of steatorrhea include celiac disease pancreatic disease cirrhosis other livert diseases malabsorbtion due to other causes giardia infection vasculr disease whipples disease small bowel crohn's and about a 100 other diseases kidney disease does not cause it as far as I know joe murray ========================================================================= Date: Tue, 31 Jan 1995 10:53:07 PST From: "Donald D. Kasarda" (kasarda@PW.USDA.gov) Subject: small amounts of gluten )I've seen that this coloring can contain gluten, but if it's a small )change of trace contamination to a minor ingredient, I'm wondering if this is )a real risk to someone without an extremely sensitive gluten intolerance. )Has anyone had good or bad reactions to eating this cereal? -- David Scheim Ejderhamn et al. (Karolinska Institute, Stockholm) report (in Coeliac Disease:100 years, Eds. P. J. Kumar and J. A. Walker-Smith, Leeds, 1988, pp. 294-297) that, "There was no evidence of small intestinal mucosal damage in our patients with coeliac disease, who had been on wheat starch-containing gluten free products for a mean of 14 years and for 10 years after the diagnosis was confirmed.. The gliadin content in their gluten-free products exceeded 1 milligram/100 grams flour." Additional comments by me: This study included counting of intraepithelial lymphocytes, considered a highly sensitive indication of harmful effects from gliadin/gluten. Daily gliadin intake was considered to be between 4 and 8 milligrams. Eleven patients were studied. 1 milligram/100 grams had been proposed as the new upper level standard for gluten-free products in the Codex alimentarious. Donald D. Kasarda ========================================================================= Date: Tue, 31 Jan 1995 14:24:00 -0800 From: Ann Herman (aeherman@LELAND.STANFORD.edu) Subject: Re: antibody tests/biopsy Dear Diane Boyd and celiac list- I read your mailing on your daughter's lack of an antibody response. I am a graduate student at Stanford in immunology, and although I do not do research on celiac sprue, I understand more of the immunologic background of the disease from my studies. I have done some library research in this area due to my own interest in the disease since I have it. I also had very "atypical" symptoms before diagnosis, but I think that what is medically considered "atypical" probably isn't so unusual in the real disease course. My gastroenterologist says he has diagnosed one person whose only symptom was depression, and another whose only symptom was impotence. We may not tell our doctors every symptom if we have a lot or think that they are unrelated to our condition. Especially with children it may be difficult for them to describe a certain symptom. Since celiac disease is an inherited condition, I would highly recommend that you put your second daughter on a gluten-free diet as well. I find it hard to believe that one child could have been positively diagnosed with celiac and the other child merely has "irritable bowel syndrome," which at this point the medical community believes is caused by stress. This is probably unlikely for a 10 year old girl. In regards to the negative antibody test, it is more likely to get a false negative on a test like this than a false positive. That is why the antibody test is very useful in a positive diagnosis, so if the results are positive you may not need to go ahead with the biopsy unless you want absolute proof. In the case of a negative result, however, this does not say that you do not have celiac disease. It merely says that you are not producing a detectable number of antibodies. Celiac disease is a T cell mediated disease. For poorly understood reasons, the body's own immune cells called T cells begin to attack the cells lining the gut when these gut cells are exposed to gliadin from our diets. One of the consequences of these T cells becoming activated to do this damage is that they release factors that cause other immune cells to release antibodies, some of which end up in our blood. It is these antibodies that are measured in the test. From the current understanding of these types of diseases, it appears that these antibodies are probably not necessary for the disease to occur, but are instead a byproduct of the T cell immune response to the gut. For this reason, it may be possible that the T cell damage could go on without seeing any antibodies produced. For these reasons, in your situation I would have your daughter get the biopsy or just go straight to a gluten-free diet to see if this clears up the symptoms. At a Celiac Group of the Bay Area meeting, I heard Don Kasarda speak about research in this area he is doing with Martin Kagnoff at UCSD. He may have a comment on this subject if you want to contact him. Sorry for the length of this message. Good luck. --Ann Herman ========================================================================= Date: Tue, 31 Jan 1995 14:38:59 PST From: "Donald D. Kasarda" (kasarda@PW.USDA.gov) Subject: Re: Ann Herman/Diane Boyd comments I think Ann Herman covered the situation on antibody levels so well that I can't think of anything to add. I did wonder which antibody tests were done: IgA, IgG, endomysial? Also, it might be worth trying again in a few weeks (or even right now) with another testing laboratory. Mistakes can be made once in a while. Inconvenient and perhaps expensive, but still perhaps worth doing before considering a biopsy. Don Kasarda ========================================================================= Date: Wed, 1 Feb 1995 00:07:26 -0600 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.edu) Subject: Re: CELIAC Digest - 29 Jan 1995 to 30 Jan 1995 Re dependability of antibody tests to rule out celiac disease as a possibility in a family member of a celiac, who has symptoms that are suggestive of CD. The antibody are occassionally wrong. This happens in the best of labs and is related to natural variation or IgA deficency!!. It has been my practice to advise consideration of biopsy in family members who have symptoms. Measuring IgA levels might indicate IgA deficiency state which would indicate a possible reason for the negative test. There would be a variation on one of the tests that could be done on the blood sample if the patient was IgA deficient that we have found helpful. That is to do the IgG endomysial antibody test, which is often positive in IgA deficient patients who have celiac disease. Nothing in medicine is perfect, even biopsies which are subject to interpretation and sampling problems. Joe murray ========================================================================= Date: Wed, 1 Feb 1995 00:12:07 -0600 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.edu) Subject: Re: CELIAC Digest - 29 Jan 1995 to 30 Jan 1995 re papain If my memory is coorect the reference to papain digestion of gluten was in vitro ( in a test tube ) and then the digested substance was given to 2-3 celiac patients who did not have an obvious symptom reponse. Not an acceptable basis for trusting your health to. I will attempt to refind the original article in our library basement. Joe Murray ========================================================================= Date: Wed, 1 Feb 1995 00:21:59 -0600 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.edu) Subject: Re: More on antibody tests In our experience antibody tests can have both false positives and false negatives. That means that you cannot fully depend on them to make the diagnosis. If all the antibodies ( Iga gliadin IgG gliadin and IgA endomysial are positive then it is likely that the person has celiac disease. But that is not always the case. The tests are not standardised either in the lab methods or in interpretation. The normal values vary from age and population. Joe Murray ========================================================================= Date: Wed, 1 Feb 1995 23:53:41 -0600 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.edu) Subject: Re: Tax deductibility of medically prescribed special diets I am not a tax practiitioner, but My understanding is that the extra expenses involved in adhereing to a medically prescribed diet is regarded a tax deductible medical expense as defined and limited to those who itemise deductions. Like everything else you who need to keep careful record of all extra expenses used to comply with the diet and have a note from your doctor stating the necessity for the diet. This recommendation may already be contained in the medical record letteres etc. The celiac disease foundation has a handout on it and similar sheets have been reproduced in newsletters etc. Obviously this may not apply outside the USA. Joe Murray ========================================================================= Date: Thu, 2 Feb 1995 11:41:33 PST From: "Donald D. Kasarda" (kasarda@PW.USDA.gov) Subject: Kenmei problems There have been several messages related to the demise of Kenmei rice cereal by Kellogg. I had been involved in the attempts by Kellogg to make the cereal gluten-free and perhaps some of you might be interested in what took place. One of the problems was that Kellogg felt that they could not afford to assign separate machinery and separate work space for the production of Kenmei from that which they used with wheat cereals. They agreed, however, that they would thoroughly clean their machines in between the different runs and discard a considerable amount of the Kenmei that came through immediately after the transition in order to avoid any contamination with wheat that could not be completely cleaned from the processing machinery. This seemed to work for a while, but I think they may have had some difficulties in keeping on top of production staff in regard to these procedures and at least once some evidence of apparent contamination turned up. I suspect that these difficulties, along with the fact that Kenmei was evidently not a big seller among non-celiacs, caused Kellogg to give up on it as a non-profitable item. This is unfortunate as many celiac patients seemed to like Kenmei very much, but I think you have to see the company's side of things. They really did try to make it work, but a big company has trouble adjusting to niche markets. Don Kasarda ========================================================================= Date: Thu, 2 Feb 1995 17:43:46 PST From: "Donald D. Kasarda" (kasarda@PW.USDA.gov) Subject: efforts to sell Kenmei Having been involved personally, I feel that Kellogg Co. did make rather exceptional efforts in regard to Kenmei. They worked closely with me as a representative of Phyllis Brogden (Greater Philadelphia) and other celiac support group chairpersons (who had requested that I represent them to Kellogg) and the Kellogg's people kept me pretty well informed. I had ready access at the Vice-Presidential level. My telephone calls were never turned away. In regard to marketing efforts, I recall full-page, four-color adds in major magazines and advertising supplements. And they put Kenmei on practically every supermarket shelf in the country. I think that costs some money. After all, Kellogg is not a non-profit organization. If you happen to own shares (I don't--I haven't any connection whatsoever with the company), or your mutual fund does, you probably hope the company makes some profits. In my opinion, there is a limit to what can be expected of a company competing on the open market with regard to responsiveness to special problems like celiac disease. In the ordinary course of things, they wouldn't think twice about killing a product that wasn't doing well. In the case of Kenmei, I would say they did at least think twice. Don Kasarda ========================================================================= Date: Mon, 6 Feb 1995 11:37:19 -0500 From: Ivor Dennis Hill (ihill@UMABNET.AB.UMD.edu) Subject: Re: childhood Celiac vs. Growth Isolated growth failure is now well recognized as an early manifestation of celiac disease. Studies on children attending clinics for short stature have shown that as many as 10% of them have celiac disease. Providing the condition is diagnosed and correctly treated before puberty, the children will show good catch up growth. If left untreated until after puberty there will be some permanent effect on the height of the individual. On Mon, 6 Feb 1995, Karen Bulmer wrote: ) Just a curiosity as to whether any studies have been done in regards to ) children diagnosed with Celiac disease and they growth patterns before and ) after. I was never diagnosed as a child and I am short for my family. ) Older brother 6'5", younger sister 5'11", me 5'6". Mother 5'9", father ) 6"....Anyone else have or know of similar problems pre and post diagnosis? ========================================================================= Date: Wed, 8 Feb 1995 10:19:26 PST From: "Donald D. Kasarda" (kasarda@PW.USDA.gov) Subject: Re: Gluten in Skin Products Amy said: )This may sound strange, but as a fairly new Celiac I'm trying to absorb all )this information and I have one question about non-food items. I thought CD )was a intestinal problem with gluten getting in to the intestine and )damaging the villi. Now, how does a skin care product affect the intestine, )if it were absorbed thru the skin, wouldn't it be in the bloodstream? Maybe )someone could help me understand this. In reply: I am not personally aware of any published evidence that gluten exposure by way of the skin is harmful to celiac patients. I think this concern has no more factual basis than the harmful peptides or proteins in grain alcohol story. In previous postings to this list, some celiac patients reported kneading wheat flour doughs and baking wheat bread for non-celiac family members without noticing any effects or problems. There may be people with allergies to wheat or wheat products that show up as a skin response, but this is not likely to be the same as celiac disease. In the absence of solid information showing harmful effects from gluten containing skin products, it is difficult for me to understand why they should be avoided by celiac patients. Donald D. Kasarda ========================================================================= Date: Wed, 8 Feb 1995 23:30:32 -0600 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.edu) Subject: Re: dapsone dosage What is a,safe dose of dapsone? The most common side effects of dapsone are on the blood cells specifically the red cells It can break them up ( hemolysis) or if can interefere with their ability to carry oxygen. While there are other side effects ( skin rash, nausea, liver dysfunction bone marrow effects theese are rarer) The lowest dose that controll the rash is the best dose. Adhereing to a gluten free diet will reduce the requiremnet over about 2 years to the point that many peolpe will be able to stop it altogether, Need to be a strict diet. While some one is on dapsone they need to have regular blood counts and liver blood tests to check for side effects. There are other drugs that are sometimes used but these also have their side effects. Joe Muuray Not specific medical advice but an educational service- consult your physician. ========================================================================= Date: Wed, 8 Feb 1995 23:39:36 -0600 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.edu) Subject: Re: Growth and celiac disease Celiac disease may inhibit childhood growth and some times that is the only sign of it. It can also not inhibit growth in height but make skinny kids or in some cases you can have some quite tall celiacs. The tallest celiac ( not diagnosed until 34yrs was 6' 8" and tallest female was 6' 3". The heavyiest untreated patient was 400 lbs with most of my patients being normal or overweight at the time of diagnosis. The nutritional impact of celiac disease depends on many factors both the extent and duration of the damage the ability of the body to compensate for the defect and dietary compensation. The growth patteerns can raise the suspicion of celiac disease but a normal growth pattern should put the doctor off either. The adage " you cant have that because you are too tall or too heavy" is wrong. Joe Murray ========================================================================= Date: Wed, 8 Feb 1995 23:51:47 -0600 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.edu) Subject: Re: Discrepancy between antibody tests and biopsies These descrepancies are of two, types 1. Blood test positive - biopsy negative: the antibody tests could be false positive ( some times happens especially with gliadin IgG ) , the antibody test may reflect a latent gluten sensitivty that ha s not done any damage ( by definition this individual should have no symptoms), or the biopsy is wrong because of too small a sample , just one taken , or an error in interpretation due to lack of awareness on the part of the pathologist of subtle changes of celiac disease ( marsh MN , gastroenterology, feb 1992. ) 2. Blood test negative and biopsy positive: the blood test might have preformed incorrectly or if gliadin alone is used it does not pick up all celiacs. The blood test may also go negative if gluten has been reduced in the diet before it is drawn. If the patient is IgA deficient it will often be negative. The other possibility is that it is not celiac disease on the biopsy there are some other things that can mimic celiac disease on biopsy. All in all no tests are perfect Joe Murray ========================================================================= Date: Mon, 13 Feb 1995 14:40:16 -0500 From: Ivor Dennis Hill (ihill@UMABNET.AB.UMD.edu) Subject: Re: Antibody Test Reliability In response to your request for information on laboratories performing serological tests for Celiac disease - our Division of Pediatric Gastroenterology and Nutrition at the University of Maryland School of Medicine in Baltimore has a certified clinical laboratory offering a variety of specialized investigations for disorders of the gastrointestinal tract. Included in these are the antigliadin IgA & IgG and antiendomysium antibody tests. For those wishing to use the laboratory, the contact person is Dr. Karoly Horvath, (Laboratory director) - phone # (410) 706 1997. ========================================================================= Date: Mon, 13 Feb 1995 21:43:10 -0600 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.edu) Subject: Re: Digestion of Fats Fat malabsorbtion in celiac diasese is due to a combination of effects of celiac disease. These include loss of the surface that is needed to absorb fat, loss of digestive enzymes that would be produced by the lining of the intestine. The enzymes produced by the pancreas may also be reduced by the degree of malnutrition of the individual. Motility( contractions of the intestine may also be increased ( or decreased ) in patients with celiac disease because of the infllammation. All of these factors come together to impair the ability of the intestine to handle fat.. All of these should also correct with the healing response to a gluten free diet. Occassionally there may be a need to add pancreatic enzymes to help with digestion. I have also on occassion have to give a mediaction to aid gastric emptying. Constipation has been desrcibed as affecting 20% of new celiac patients.. In my experience this may be due to the passage of large stools and cramping in some, while others will have typical constipated stools with hard stools passed every 4-5 days. This can sometimes get better with the diet but sometimes it can get worse due to a lack of fibre. The use of pure rice bran apples pears and a small amount of prunes can help. Never ever use Gluten as a laxative. Rarely a condition called pseudoobstruction can coexist with celiac disease. This is the most severre type of constipation and needs very special attention. It is much rare than celiac disease. The fat malabsorbtion is associated with specific fat-soluble vitamins defeciencies such as Vit A, D, E and K. These usually correct with a gluten free diet, but sometimes need specific suppplements. On Sat, 11 Feb 1995, ROSALIE JALBERT wrote: ) Besides lactose intolerance, could you tell me more about problems with ) digestion of fats. Could it cause a mobility problem or constipation? ========================================================================= Date: Tue, 14 Feb 1995 13:03:56 -0600 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.edu) Subject: Re: Man with autoimmune diseases and family hx of CD/DH I can only comment on a hypothetical man as described who has a parent with DH and has GI symptoms and other autoimmune diseases. He should insist in as clear a manner as possible that he be specifically investigated for celiac disease. He not only has a family history but has other associated symptoms. This should be done before going on a gluten free diet. While blood tests ( antigliadin and endomysial antibodies could be done first, I would be biopsying this type of individual. Joe Murray Iowa ========================================================================= Date: Tue, 14 Feb 1995 13:28:09 -0600 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.edu) Subject: Re: re antibody testing sites In response to the query ?recommended labs for testing The Univ of Maryland ( see recent message from Ivor Hill Dr. Kumars lab in buffalo NY specialty LAbs santa monica do a lot Some other large labs do them even though it is not clear which method or if they further contract them out. And of course they are available through our immunopathology laboratory at the University of Iowa. Joe murray iowa ========================================================================= Date: Tue, 14 Feb 1995 13:35:51 -0600 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.edu) Subject: Re: How to persaude your doctor to test for CD If there is a strong family history of celiac disease, point out that you have heard from a specialist speaking at a meeting, or writing on the interenet or in a newsletter that this does run in familys. If you get the response that you could just go on the diet, point out that that was specifically not recommended. If the Dr. is just plain uncooperative seek another opinion. If it is a HMO and you dont have any choice, write the quality assurance dept of the HMO asking for their intercession. It is quite difficult to ignore a patient who is very specific in their information and requests. If you have written information about celiac disease bring it with you to your dr's visit. And Good Luck Joe Murray Iowa ========================================================================= Date: Tue, 14 Feb 1995 13:15:33 -0600 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.edu) Subject: Re: permeability tests as a screening test for celiac disease The reference to the use of permeability in the diagnosis of celiac disease is interesting. However it is important to put it's usefulness into context. It detects increased intestinal permeability which is seen in most untreated celiac patients. However other diseases frequently give rise to the same increase in permeability. Hence I feel that the utility of the test needs to be put in the context of the clinical question. Is a family member at risk of having CD also? How is someones CD doing on a GFD? These questions above may be answered by measuring permeability. The question " does this patient have celiac disease?" is not answered by detecting increased permeability. Biopsy remains the standard. Gliadin antibodiess ( esp IgG) can be seen in other diseasees. Endomysial antibodies seem to more reliable than gliadin and rarely occur in oter diseases( Note : this conclusion is based on our experince in Iowa and published series from research labs in europe> We do not know how good( reliable ) this test will be in general usage, as more and more labs start doing it. Joe Murray Iowa ========================================================================= Date: Thu, 23 Feb 1995 19:49:21 -0600 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.edu) Subject: Re: Comments on comercial foods lists While by and large these lists are quite helpful one must exercise vigilance especially when it comes to foods that are going to be eaten in large amounts or often. If you are planning on eating something on a regular basis you must not only ensure that it gluten free at the outset but recheck it every 2-3 months. Things change. For large lists such as the CSA/USA lists especially if they are garnered from many individuals efforts will have occassional mistakes either because the company rep did not understand what GF was exactly ( may have the bakers definintion of gluten or not not considered barley as "gluten" Oats and oat flour are best avoided as a routine food ingredient for celiacs. Joe Murray Iowa ========================================================================= Date: Thu, 23 Feb 1995 20:02:41 -0600 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.edu) Subject: Re: Fibre supplements I have recently met someone who had problems with citrucel and metamucil given as fibre additives causing a continued problem with diarrhea. She told me that when she called the citrucel co. first that it was gluten free. after several weeks of symptoms she tried again and this time they told her was a little gluten but it probably did not matter. She then went on metamucil which caused a similar problem. This was the orange flavored "smooth textured metamucil, whose ingrediant list had 95% pysllium seed. and some other colors and natural flavors. I wonder what the other 5% was. Since stopping the metamucil her symptoms have stopped. I suspect that this was called the sunrise smooth variety of metamucil which I used to tell people to avoid that type. It seems that now the sunrise part of the label is no longer being used. My advice if you need supplemental fibre use apples pears and rice bran as reasonable and safe sources of fibre. Has anyone else had experiences with these agents. Also as with all mediacation if one dose size of a tablet is GF does not mean that every dose size will be also. For example Biaxin ( a new and expensive antibiotic) the 250mg tablet has pregelatinised starch as an ingredient ( which may be wheat derived) whereas the 500mg does not. One form of the solution may alo have gluten in it also. Joe Murray Iowa ========================================================================= Date: Thu, 23 Feb 1995 20:05:01 -0600 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.edu) Subject: Re: myasthenia gravis The association between the myasthenia gravis and celiac disease is due to the fact that they both occur in people with a predisposition to autoimmune diseases. Joe murray ========================================================================= Date: Mon, 27 Feb 1995 16:54:15 PST From: "Donald D. Kasarda" (kasarda@PW.USDA.gov) Subject: buckwheat and millet Selected comments from communication of Laura Johnson-Kelly )However, I think it is wise for doctors and other dietary specialists )to point out that many celiacs do have problems with millet and )buckwheat, just as they point out that many celiacs have problems with )lactose intolerance. Maybe these foods do need to be removed from the )"never eat" lists to the "eat at your own risk" lists, along with dairy )products, to allow for these individual differences. Saying that people )"shouldn't" react to eating millet and buckwheat when some obviously do is )too terribly reminiscent (at least to me) of the doctors who say that an )individual can't possible have cd because it is such a rare condition, or )the individual doesn't show stunted growth, etc. etc. Response from Don Kasarda: I would mainly be concerned about an implication that responses to buckwheat and millet (an implication that I do not attribute to Laura) have something to do with celiac disease. They may or may not, but there is no scientific evidence that they do and some that they do not--at least for buckwheat. People of all sorts are sensitive to all sorts of things. I feel that celiac patients should be wary of attributing all their own personal sensitivities or problems to their celiac disease. For example, lactose intolerance is certainly a problem for many people who don't have celiac disease. I suspect that because of somewhat indiscriminate testimony, large numbers of people with celiac disease are avoiding many foods that are harmless for them. Perhaps some sort of disclaimer would be helpful: "I have a problem with this or that food. I don't know if this has any connection with my having celiac disease. It may or may not, but you may want to watch out for it." Along these lines, I think it would be appropriate for any celiac organization that puts out a list of foods to be avoided to have some sort of justification on file for each food proscription on the list and be prepared to make that justification public upon request. I don't think the fact that several people said they had a problem with eating "X" is sufficent. If it is NOT possible to say at the very least that 100 people or more (preferably more) with biopsy-defined celiac disease (perhaps these days, antibody-defined might be acceptable) were polled randomly and 20%, or 50%, or 90%, whatever, said they had a problem with X, then X should not be on the proscribed list. The grain alcohol/white vinegar proscription is one example where I doubt there is any justification. Conversely, if an organization cannot offer any public justification for a proscription, then it should remove the item from its list or put it in a "possible concern" category. I have no problem with scientific studies of buckwheat, millet, or any other suspect food in relation to celiac disease, but properly done studies are enormously expensive and the problem of finding a suitable number of well-characterized celiac patients to participate in any study is great (they would almost certainly have to submit to several biopsies and be followed closely for months). Accordingly, I am not too optimistic about such studies being carried out. ========================================================================= Date: Wed, 1 Mar 1995 10:06:42 PST From: "Donald D. Kasarda" (kasarda@PW.USDA.gov) Subject: Re: The Danger of Relying on Symptoms Extract from communication by Jim Lyles: )However, ALL celiacs will have villi damage when they ingest gluten, )whether they feel anything or not. If it is only a small amount of )gluten, then there is only a small amount of damage, but the damage )occurs none-the-less. May we have your references to the medical literature for this statement? I have posted a reference to the contrary on the list. Thanks, Don Kasarda ========================================================================= Date: Fri, 3 Mar 1995 12:15:06 PST From: "Donald D. Kasarda" (kasarda@PW.USDA.gov) Subject: gliadin amounts Some comments from Don Kasarda (Albany, CA) on continuing discussion about whether or not small, perhaps trace, amounts of gliadin are harmful to celiac patients. First of all, I thank Jim Lyles and Peter Hyatt for their thoughtful, well balanced statements. There is much key information we don't have yet and even professionals differ in their opinions. I have no problem at all with people making informed decisions about what they are willing to risk or not risk in the way of foods. I certainly would not encourage anyone to cheat on the diet, but when it comes to malt flavoring and wheat starch and white vinegar, I think there is room for a decision to risk it, at least once in a while. Just as an example, let us consider the cancer question. The studies carried out in England indicated an increased risk of lymphoma (small in absolute terms, but nevertheless a significant rise over background) in celiac patients who do not follow a gluten-free diet or who cheat regularly. In the control group, on a strict gluten-free diet there was no increased risk. Yet, because, during the period of this study, wheat starch was considered an allowable part of the celiac patient's diet in England, the control group on a strict gluten-free diet was very likely eating one-to-ten milligrams of gliadin per day. This study involved hundeds of patients. I wrote some time ago to Dr. Holmes (the senior author of the study) asking him if he agreed with my analysis. Unfortunately, he hasn't replied. But I would be interested to hear comments from those in England familiar with the recommended diet in the 1970's and 1980's. There is a seemingly good study carried out in Switzerland showing that ingestion of wheat starch over a period of years was not harmful in the small group (12) of patients studied. There may well be people with higher sensitivities who just didn't end up in the experimental group. The amount of gliadin (strictly speaking, hordein peptides) that might end up in barley malt flavoring is small, and not likely to be more risky than eating wheat starch. Personally, I think the attitude in the UK towards foods is the more realistic one and that the US attitude is too extreme, but that is obviously an opinion. Anyway, from my analysis of the literature, if you decide to eat Rice Krispies, or MacDonald's french fries, or white vinegar, you are on about as firm ground as the people who choose not to. The solid information just isn't there in my opinion. I know some physicians will take issue--they tend to follow the old adage, "Give 'em an inch and they'l take a mile, " and probably figure you will be putting croutons on your salads before long if they don't scare you thoroughly. As usual, each person must make his or her own decision. I would just like to have that decision made in as informed an atmosphere as possible. Finally, just to roil the waters even more, the latest studies of oats (by Irish and Finnish groups) seem to be coming up non-toxic! The results have not been published yet, but from what I have been told, they seem to have been carefully done. So the scorecard on oats is: one seemingly good study (although no biopsies) says toxic, and two other seemingly good studies (that included biopsies) say non-toxic. (This doesn't include the Finnish study about which I have no experimental details.) ========================================================================= Date: Tue, 7 Mar 1995 17:24:43 -0600 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.edu) Subject: re speed of gluten reaction Food ingested starts to reach the small intestine after only a few minutes. Most food eaten is in the small intestinine in just 3-4 hours. Individuals vary in the speed of the gluten reaction. In some of the acute challenge studies in the UK changes were evident inside a few hours. Others have delayed reactions days or no acute reactrtion at all. Joe Murray ========================================================================= Date: Tue, 7 Mar 1995 17:19:36 -0600 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.edu) Subject: re MS and celiac disease The coincidence of MS and CD in 2 sibs of one family may be just that a coincidence in a family possibly with a predisposition to autoimmune disturbances. There is however the other possibilty that is that the MS patient sufferes from a neurologic complication of undiagnosef CD. about 5% of CD patients get nerve damage that can vary from tingling and numbness in the feet to confusion, memory loss, dizziness and loss of balance, visual abnormalities. Thes sometimes happen in the absence of GI symptoms. Any sibling of a person with celiac disease should be screened for celiac disease. it's a long shot that neurological problems would be due to a covert case of CD but IT should be checked none the less. This is not specific medical advice. joe murray ========================================================================= Date: Wed, 8 Mar 1995 11:15:53 PST From: "Donald D. Kasarda" (kasarda@PW.USDA.gov) Subject: Re: "Glutinous" Rice Flour? )I know glutinous rice flour = sweet rice flour, but why is )the term "glutinous" (which means gluey or sticky) used? It )certainly gives pause to those of us with a search image for )gluten when reading labels. ) )David Kesler Reply from Don Kasarda, Albany, CA. Just one of those things. Gluten is sticky--same meaning, I guess, but the term glutinous rice does not imply wheat gluten. Another confusing usage is corn gluten for proteins of corn (maize). Traditionally, since the 18th century, gluten is the elastic, cohesive ball of protein remaining after starch is washed away (by kneading in a stream of water) from a dough. This can be achieved effectively only with wheat. It doesn't even work well for rye. It doesn't work at all for barley and corn. Yet gluten-free for celiac patients has come to mean free of any grain that has harmful peptide sequences in its proteins. It seems strange when a celiac patient asks me how much gluten there is in, say, amaranth. For a cereal chemist, that question requires translation into, "Are there peptide sequences in the proteins of amaranth that might cause damage in celiac disease." There is certainly no gluten in the traditional sense. ========================================================================= Date: Wed, 8 Mar 1995 11:00:40 GMT From: William Elkus (Maxwell@LAMG.COM) Subject: Gluten in Breast Milk? In the post from the Sprue-nik Press, it said: )Dr. Alessio Fasano, University of Maryland ------------------------------------------ )A question was raised: Can a baby receive gluten through breast milk? )Dr. Fasano stated that it has never been described that gluten can go )through breast glands Although I have never read the journal articles myself, Dr. Kalle Reichelt, a Norweigan researcher,has cited several articles as evidence that dietary proteins in general, and gluten/gliadin specifically, can be transfered to a breast-fed baby: The following is from a post written by Reichelt to another internet discussion group, but if you do a CELIAC archives search on 'reichelt' you will find very similar posts on our own discussion group: ) ..food proteins can be demonstrated in mothers milk (3-6) as intact ) proteins. This could easily therefore take place also during pregnancy. ) 3: Kilshaw PJ and Cant AJ (1984) The passage of maternal dietary ) protein into human breast milk. Int Arch Allergy and Appl ) Immunol 75: 8-15. ) 4: Axelsson I, Jacobsson I, Lindberg T, and Benediktsson B (1986) ) Bovine lactoglobulin in human milk .Acta Paed Scand 75: 702-707. ) 5: Stuart CA, Twiselton R, Nicholas M and Hide DW (1984) Passage ) of cow s milk protein in breast milk .Clin Allergy 14:533-535. ) 6:Troncone R, Scarcella A, Donatiello A, Cannataro P, Tarabusco A and ) Auricchio S (1987) passage of gliadin into human breast milk . ) Acta paed Scand 76: 453-456. Since Ihave not read the articles, I have no idea whether the amounts of these proteins would be sufficient to trigger a Celiac (or other autoimmune) response in a susceptible child. If anyone makes a copy of these articles and is willing to fax or mail me a copy, please email me privately, as we are expecting another baby soon. Bill Elkus firstname.lastname@example.org ========================================================================= Date: Thu, 9 Mar 1995 08:28:38 -0600 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.edu) Subject: MS and celiac disease The coincidence of MS and CD in 2 sibs of one family may be just that a coincidence in a family possibly with a predisposition to autoimmune disturbances. There is however the other possibilty that is that the MS patient sufferes from a neurologic complication of undiagnosef CD. about 5% of CD patients get nerve damage that can vary from tingling and numbness in the feet to confusion, memory loss, dizziness and loss of balance, visual abnormalities. Thes sometimes happen in the absence of GI symptoms. Any sibling of a person with celiac disease should be screened for celiac disease. it's a long shot that neurological problems would be due to a covert case of CD but IT should be checked none the less. This is not specific medical advice. joe murray ========================================================================= Date: Thu, 9 Mar 1995 13:41:28 GMT From: William Elkus (Maxwell@LAMG.COM) Subject: Fwd: Trace amount of protein in milk. )From Dr. Reichelt in reply to my post yesterday, in which I wondered )whether the amounts of gluten in mother's milk is significant: Hi. It should be stressed that the amount are small. However, the point is that even trace amounts can be important because if the proteins are not properly broken down peptides will accumulate. After all the uptake of proteins from the gut into blood has also been demonstrated:Husby et al (1985) passage of undegraded dietary antigen into the blood of healthy adults .Scand j Immunol 22: 83-92. Other references in brief : Bloch KJ et al (1979) gastroenterology 77:1039-1044. Thomas et al (1974)Immunology 27:631-639. Walker WA et al (1974) gastroenterol 67: 531-550. Because gluten contains at least 15 opioid sequences per molecule (Fukudodme S-I and Yoshikawa M (1991) Opioid peptides derived from wheat gluten :Their isolation and characterization .FEBS Letters 296:107-111.) It is therefore clear that one molecule could theoretically give 15 opioids . This means that trace amount of peptide could quickly become very important. 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: Fri, 17 Mar 1995 11:48:21 PST From: "Donald D. Kasarda" (kasarda@PW.USDA.gov) Subject: millet Reply to query from Jim Lyles by Don Kasarda (USDA not FDA), Albany, CA. Perhaps some background information on my qualifications to comment would be helpful. I am a cereal chemist who has worked primarily on wheat proteins in relation to wheat mixing and baking quality for the past 30 years. Through collaborations with various medical groups over the past 25 years I have become somewhat familiar with celiac disease, particularly as it relates to grain proteins. I have attended three of the five major international celiac disease symposia that have been held during the past 25 years, including the last in Dublin, Ireland, held in 1992. My position on millet is stated in the grains letter that many of you on the list have requested (and, I hope, received). Evidence so far on millet proteins (also millet taxonomy) indicates that millet proteins are closely related to corn proteins. If corn is accepted as a safe grain, then millet is likely to be safe as well. Of course, millet proteins have not been studied as extensively as corn proteins, so if you are extremely conservative, you may wish to avoid millet, but I am not aware of any evidence that indicates likelihood of toxicity for millet in celiac disease. I would very much appreciate hearing from CSA representatives as to why they include millet on the forbidden list. As for any food, millet may not agree with everyone, but I don't know of any evidence that would link millet to celiac disease. I think it would be desirable for celiac patients to be aware that many restrictions have no scientific basis--that there doesn't seem to be any scientific evidence to back them up (wheat-based distilled alcohol, for example). I do not say that anyone should not act on his or her own gut (if you will pardon the expression) feelings, but in counseling others, I think it should be made clear whether a recommendation has some scientific basis or is mainly opinion. Granted, opinion might some day turn into scientific fact--then again, it might not. Scientists are far from understanding all the complexities of celiac disease and conditions that may or may not be related to celiac disease (for example, allergy-like symptoms from breathing grain dust). Also, there is no grain for which we have complete sequence information for every protein, including rice and corn. I can only provide my personal opinion based on my knowledge of the scientific literature, which is far from perfect given the enormous amount of information accumulated there. I do, however, make considerable effort to keep up with the literature on both cereal grains and celiac disease. My comments must be considered in that light as general information and not specific medical advice to anyone. ========================================================================= Date: Fri, 24 Mar 1995 10:40:15 PST From: "Donald D. Kasarda" (kasarda@PW.USDA.gov) Subject: Re: Communion Wafers )Does anyone have a source or a recipie for GF communion wafers? Our )son's First Communion is coming up on May 7th. See the American Celiac Society newsletter, vol. 2, 1994. If you can't find it, I will make a copy and send it to you. E-mail me directly with your address. The wafers are made with wheat starch (the church seems to require that the wafers be wheat-based) and there is a very small amount of residual gluten present, but they would be a great improvement over the normal wafer. Don Kasarda (email@example.com ========================================================================= Date: Mon, 27 Mar 1995 17:53:34 PST From: "Donald D. Kasarda" (kasarda@PW.USDA.gov) Subject: Re: Wheat intolerance vs. CS Reply to Linda Blanchard from Don Kasarda, Albany, CA. Linda, Some of your questions are not easy to answer, at least for me. There may or may not be a difference between wheat intolerance that shows up mainly through intestinal damage and celiac disease. However, both milk and soy have been shown (scientific journal articles) in at least a couple of instances to produce the flattened mucosa (damaged epithelium) that is characteristic of celiac disease. Does this mean that milk and soy allergies (?) are no different from celiac disease? So, it at least seems possible that there may be two different disease mechanisms at work in the case of gluten damage to the intestine, one that represents true celiac disease and the other, a form of wheat allergy, the latter response perhaps mediated by the IgE class of immunoglobulins (usually involved in allergic reactions), which is not usually thought to be involved in celiac disease responses. Perhaps, the former cannot be outgrown and the latter can be. I don't know the answer--just noodling around. I am not an immunologist so someone more sophisticated might care to comment. Your question about beer is easier to answer. Beer may have barley hordein peptides; these are equivalent to wheat gluten (gliadin) peptides. Beer is not distilled as is alcohol--what ferments and becomes soluble in water (and dilute alchohol) is what you get. So when the fermentation process breaks down the proteins of the barley into small pieces (polypeptides or peptides), some of those small pieces may still be big enough to contain the harmful amino acid sequence(s) that cause damage to the intestine of celiac patients. I would say this is pretty likely in most beers, but at present a clearly toxic peptide sequence derived from beer has not been described in the literature (just a cautionary note and not to be taken as indication that such a peptide isn't there). In addition, these peptides are much more soluble than the parent proteins. The heavier and more tasty the beer, the more likely it is that it contains harmful peptides. There is a recent paper demonstrating gliadin-like (probably harmful) sequences in malted barley (Ellis et al. 1994. Demonstration of the presence of coeliac-activating gliadin-like epitopes in malted barley. Int. Arch. Allergy Immunol. 104:308-310). Also of interest is the paper by Kauffman et al. (1994. Immunological characterisation of barley polypeptides in lager foam. J. Sci. Food Agric. 66:345-355). Don ========================================================================= Date: Fri, 31 Mar 1995 10:14:40 PST From: "Donald D. Kasarda" (kasarda@PW.USDA.gov) Subject: Re: Arsenic Disease ))Norman Dewar (ndewar@BUD.PEINET.PE.CA) wrote: )) ))This may seem a trivial question but why is the word disease )) used in connection with celiac. Personally I feel I have a live )) long condition but I don't have a "disease" . It isn't in many )) ways a disease in the typical sense of the word. Comment by Don Kasarda, Albany, CA The term 'gluten-sensitive enteropathy" was coined, I think, by Dr. Warren Strober of NIH, Bethesda, MD, some years ago and is fairly popular amongst physicians. In many ways, it is a more descriptive term.
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