This file contains postings made by the following professionals: Dr. Karoly Horvath--an associate professor of pediatrics ath the University of Maryland at Baltimore. Dr. Horvath set up the Pediatric Gastrointestinal and Nutrition Laboratory, and is now director of this lab. Donald Kasarda--a grain specialist working for the United States Department of Agriculture. Dr. Vijay Kumar--President of IMMCO Diagnostics. Dr. Markku Maki--Professor of Pediatrics at the University of Tampere in Finland. 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. Paul Shattock--Senior Lecturer in Pharmacy, Autism Research Unit, School of Health Sciences, University of Sunderland; Sunderland, England. He is doing research on the relationship between gluten/casein and autism. His work has application to other developmental and mental disorders. ========================================================================= Date: Tue, 3 Oct 1995 15:26:48 EDT From: Jim Lyles (lylesj@CADCAM.ATG.GMEDS.com) Subject: CD and Birth Defects--Two Experts Respond As a result of the discussion a few weeks ago on spina bifida and CD, I sent the following message to the CEL-PRO list, a private list for professionals treating and researching celiac disease (CD): * * * * * Date: September 14, 1995 2:52 pm There was a post on the CELIAC list recently which suggests a complication of [untreated] CD of which I had not previously heard. I'll try to summarize that post: A young mother, who is quite thin, "...was diagnosed with sprue [CD] in high school, but she got over it." (This, of course, is nonsense.) She has a young daughter with spina bifida. The post suggested a possible link between spina bifida and low maternal folic acid. The question raised in the post is: Could the spina bifida in the daughter have been caused by malabsorption of folic acid in the mother during pregnancy, with the malabsorption being a direct result of untreated celiac disease in the mother? If that is the case, then we have a child inflicted with a life-long condition due to untreated CD during pregnancy. Meanwhile the young mother could easily have another child, and is apparently unaware that she still has (and always will have) the sprue [CD] she thought she got over in high school. I wonder how many other birth defects relating to nutritional deficiencies during pregnancy might be caused by celiac-related malabsorption. Does this connection seem plausible? Are there any studies comparing birth defects for untreated celiac mothers with birth defects in the population at large? Could such information be easily gathered? I'd welcome any comments you may have on this topic. If there is a correlation between birth defects and untreated CD, I think it would be a powerful motivator for celiac women of childbearing age to not cheat on the diet. People who won't take care of themselves will often go to extraordinary lengths to protect their current and future children. It would also demonstrate the importance of screening the US population for celiac disease, even in the absence of apparent symptoms. * * * * * There were several responses to this message. I received permission from two of the doctors to widely distribute their responses; these I will repeat here for you. The first came from Dr. Markku Maki, a Professor of Pediatrics at the University of Tampere in Finland. He was one of the speakers at the Baltimore conference. Dr. Maki's response: * * * * * From: Markku Maki, MD Date: September 15, 1995 5:25 am Jim Lyles wrote: )The question raised in the post is: Could the spina bifida in the )daughter have been caused by malabsorption?....I'd welcome any )comments you may have on this topic. At the Celiac Disease Study Group in Tampere, we want to respond. We have discussed this lately and we are going to do an inquiry to the Finnish Coeliac Disease Society members about this. Dr. Kati Holm has a case you might be interested in: The first child of the mother suffered from spina bifida and meningomyelocele (boy). Two pregnancies that followed resulted in abortion because of intrauterine diagnosis (confirmed meningomyelocele at autopsy). During the fourth pregnancy anemia and folic acid deficiency were noticed. The mother was treated with vitamins, folic acid and iron. The pregnancy resulted in a healthy girl. After this there were again several abortions because of detected menigmyelocele. The mother contacted Dr. Kati Holm (PhD on celiac disease) because of diarrhea and anemia and subsequently celiac disease screening tests were performed among other studies. IgA class reticulin autoantibody tests were positive and a jejunal biopsy revealed the typical lesion for celiac disease. She was prescribed a gluten-free diet, after which symptoms disappeared. The iron and folic acid deficiencies disappeared at the same time as the mucosa recovered. One pregnancy resulted, without any other therapy, in a healthy child. All this by chance alone?? Prof. Markku Maki Institute of Medical Technology University of Tampere P.O. Box 607 FIN-33101 Tampere, Finland * * * * * The other response came from Dr. Karoly Horvath, Associate Professor of Pediatrics and director of the Pediatric Gastrointestinal & Nutrition Laboratory at University of Maryland: * * * * * From: Karoly Horvath, MD, PhD Date: September 17, 1995 5:47 pm The relation between folate deficiency and neural tube defects is well documented. Several studies have demonstrated a significant reduction of neural tube defects in the newborns of folate supplemented pregnant woman. The risk reduction varies between 58-91%. The different studies used different supplementation and doses. A recent review article summarizes the up-to-date information in this subject (Czeizel AE, "Folic acid in the prevention of neural tube defects", Journal of Pediatric Gastroenterology and Nutrition 20: 4-16, 1995). The other association between folate deficiency and absorptive problem is not questionable, and does not need to be proven. I do not have any doubt that that the babies of women with non-diagnosed CD have an increased risk for neural tube defects. We can collect information retrospectively, however, it will not be easy and convincing. A prospective study is easier if we found a center treating mostly children with neural tube defects and we can get blood samples from the mother shortly after giving birth for folate level determination and celiac serologic tests. Karoly Horvath University of Maryland * * * * * Thank you to Drs. Maki and Horvath for sharing their knowledge with us on this important topic. -- -- Jim Lyles -- firstname.lastname@example.org -- Holly, Michigan, USA -- ========================================================================= Date: Fri, 6 Oct 1995 23:42:43 +0100 From: "P.SHATTOCK" (hs0psh@ORAC.SUNDERLAND.AC.UK) Subject: Re: Vitamin E I have to say that I don't really know for sure since I do not have any of the product to hand. I would, however, be very surprised if it did contain yer-actual yeast as I imagine someone would have checked it out before now. If you mail me a small amount I can easily check it out microscopically and report back. Paul Shattock On Fri, 6 Oct 1995, David Taylor wrote: ) Do you think it likely that the Super Nuthera could ) compromise the yeast free diet? ========================================================================= Date: Mon, 9 Oct 1995 12:11:58 +0100 From: "P.SHATTOCK" (hs0psh@ORAC.SUNDERLAND.AC.UK) Subject: Re: menstruation, ovulation, and cd Mary Courtney shared with us her own observations on the effects of the menstrual cycle on her own gut motility, cramps etc. As some of you may know, we have been looking at the urinary peptide profiles of people with autism for some time now but, as in all experiments, we sometimes get "false positives" from amongst the normal population. It seems that in some women there is an increase in material at certain times of the month and we suspect that peptide material is leaking through the gut wall in greater than normal quantities at this time. Our results would not (yet) stand up to critical analysis but the trends are pretty clear. Basically, our model would support that proposed by your GI specialist except that we would add that the hormones, as well as affecting gut motility could also affect gut permeability. These peptides might, in their turn, cause other effects in the body. Of course, if foods liable to produce these suspicious peptides (eg gluten containers) are avoided the problems would be minimised. We will be looking at this in greater detail over the next few months and it is possible that the story may collapse when we do. Perhaps I should not use this forum for such speculation but I thought it might be of interest. It would be interesting to know whether women who have gone gluten free have observed any reduction in PMT symptoms. Paul Shattock ========================================================================= Date: Mon, 9 Oct 1995 14:43:24 PDT From: "Donald D. Kasarda" (kasarda@PW.USDA.GOV) Subject: Re: Cellulose Cellulose is a carbohydrate polymer of D-glucose. It is the structural material of plants, such as wood in trees. It contains no gluten protein. Methyl cellulose is a chemically modified form of cellulose that makes a good substitute for gluten in rice-based breads and so forth. I think that methyl cellulose can be purchased from Ener-G foods in Seattle. Don Kasarda, Albany, CA ) Sorry if this question has come up before...does anyone know what ) cellulose is? Just noticed it on another posting saying it was ) "safe." Thank you. ========================================================================= Date: Mon, 9 Oct 1995 23:49:12 +0100 From: "P.SHATTOCK" (hs0psh@ORAC.SUNDERLAND.AC.UK) Subject: Re: menstruation, ovulation, and cd Thanks for the response Susan, I am concerned that I might end up asserting something that I cannot demonstrate to be true so I hope folks will bear with me when I say, once again that our results are preliminary and will require a lot of loop-hole filling before being accepted for publication. However, I am aware that another "urinary-peptide man" is turning up results not dissimilar to our own. I was very interested that such problems, with the monthly migraines, should occur in your family given the presence of autism etc. The discerning reader may have noted that I did not mention at what time of the month we found this (presumed) increased leakiness to be most common (and I have to say that it is not always precisely the same). It would be interesting to note at what time of the cycle these problems are most apparent. Columbo is being repeated on the TV and this is a ploy that he has often used in such situations. Forgive me for not getting involved in the amino-acid profiles; I would prefer to leave that to others but I am glad that you have highlighted the involvement of B6 in these reactions as they tend to get ignored. The trouble with B6 is that it is a co-enzyme for so many reactions in the bdy and if it is effective in ameliorating the symptoms of autism there must be at least half a dozen explanations as to why. I do appreciate the personal reports. After all, they are clinical facts whereas much of what is written is interpretation of these facts or hypotheses based around them. Paul S. ========================================================================= Date: Tue, 10 Oct 1995 22:24:56 -0700 From: scott adams (sadams@HOOKED.NET) Subject: milk I just received the following from Dr. Reichelt in response to my e-mail regarding the possibility of gluten in cow's milk due to their diet: )Hi, )I do not know and I think this has not been adequately studied. Feeding )cows large amounts of grain is a fairly modern development and would if )they behave like humans, cause increased frequency of autism undoubtedly. )The dairy industry is causing trouble for such investigations. Sorry KL Reichelt )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 If anyone knows where I can obtain more information on the subject, please post the information, or send it to me directly. Thanks, Scott Adams - San Francisco, USA Celiac Website: http://www.hooked.net/users/sadams/ ========================================================================= Date: Sat, 14 Oct 1995 07:27:26 -0500 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) Subject: Re: CEliac disease and seizures Not medical advice There is now a reported association in the medical literature between celiac disease and seizure disorder. In children there may be severe epilepsy with the initial focus being in the occipital or temporal lobes( the rear end of the brain). It may respond very well to typical seizure drugs. There may also be a build of calcium in that part of the brain on CAT scan. There is not much reported on adults with seizure disorder other than the fact that it is more common for celiacs to have a seizure disoder than the general population. I certainly have seen patients whose seizure disorder is worse when they have not been gluten free. However this may be due to better absorption of the antiepileptic drugs as an alternative explanation rahter than a direct toxic effect of gluten or a nutritional deficit. Joe Murray PS there was an international symposium in April in San Marino devoted to the epilepsy in celiac disease. ========================================================================= Date: Thu, 19 Oct 1995 14:09:13 PDT From: "Donald D. Kasarda" (kasarda@PW.USDA.GOV) Subject: oats Comment from Don Kasarda, Albany, CA, on oats safety. I have not seen the NEJM article from the Finnish group although I had heard second hand about a meeting presentation of the work. I have no reason to doubt the results. I am coauthor of a paper from an independent study carried out by the laboratory of Dr. Conleth Feighery, Trinity College, Dublin, Ireland, and this study (paper submitted) also supports the lack of toxicity for a pure oats sample. I will remind people that it is easy for oats to be contaminated with wheat both in the field and in processing. I have no reason to think that oats must be limited to small amounts, but, of course, it isn't good to focus one's diet too much on a single food, so moderation of the normal sort is probably good. There are bound to be some people who are sensitive to oats, possibly through an allergic reaction to one component or another (just as there are people allergic to rice), but this sensitivity, on the basis of current results, seems unlikely to be celiac disease in its strict sense. The term gluten in celiac disease is not used in a proper sense (in that sense it is present only in wheat), but rather as a shorthand term for peptides derived from prolamins (proteins) that include the harmful amino acid sequences found in wheat. These peptides set off (in an unknown way) a series of reactions that ultimately may lead to flattening of the mucosa, malabsorption, and possibly other effects as well. Wheat, rye, and barley have prolamins that contain the toxic sequence(s). The finding that oats is (are?) not toxic indicates that the key sequences are not found in the avenins, the prolamins of oats. Comparison of the amino acid sequences of avenins and gliadins yields clues to possibly important differences and I am pursuing the significance of these differences. ========================================================================= Date: Sat, 21 Oct 1995 20:46:07 -0500 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) Subject: Re: Gastrocrom Not medical advice gastrocrom is an oral form of cromalyn sodium, which better known as an asthma mediaction. It prevents one of the common allergy cells ( mast cells) from releasing its packet of nasty chemicals in response to some allergen. Once an allergic response has happened it doesnot stop it. The oral form Gastrocrom is used by some to reduce food allergies. There is very little research to prove that it is effective in this way. It certainly has no role in treating celiac disease as the mechanism for the damage of celiac disease is not blocked by this agent. Joe Murray ========================================================================= Date: Sat, 21 Oct 1995 21:04:12 -0500 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) Subject: Re: Endomysial and gliadin blood tests Not medical advice There are two classes of antibodies seen in untreated celiac disease. Antibodies directed against a fragment of gluten called gliadin and antibodies directed against some tissue in the body itself, endomysial(the covering of muscle), reticulin ( the framework for kidney and liver) and there are some other. The actual tests are done using blood from the patient. LT 5ccs of serum is usually plenty. The blood cells are removed. The gliadin tests is usually an automated machine read test. While this means there is little room for interpretor error, there are no standardised tests, normal ranges, or even methods in use in the US. The endomysial tests are more dependent on the experience and ability of a pathologist in looking at a pattern of staining produced by the patients serum on a slice of monkey esophagus. While this test is done in similar way in most labs there are differences in how these are interpreted. How good are these tests? If all of the tests are positive then they are pretty accurate, 90% right. However there are several reasons and circumstances when they are not so accurate. IGA and IGG are two diffrent varieties of antibodies we have in our immune systems. The IGA gliadin and IGA endomysial tests are the most accurate and also become negative relatively quickly after stopping gluten ( 3-6 months). The IGG is not as specific( it can positive in non celiacs). However it is important to do both, as about 4% of celiacs have no IgA at all. The biopsy is still considered the goal standard to confirm the diagnosis. If one is screening for celiac disease it is important to make sure that the patient have been on a gluten containing diet. The tests may also be useful in following up a known celiac to help confirm that the diet is free of large amounts of gluten. Also blood tests results may not be directly comparable from one lab to the next. Needless to say the interpretation of mixed results some positive and some negative is complicated. also the interpretation and use of these tests in infants may be different. Not medical advice Joe Murray ========================================================================= Date: Mon, 23 Oct 1995 10:08:10 -0500 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) Subject: Re: CELIAC Disease and diabetes The link between diabetes mellitus and Celiac disease does not relate to gluten or malabsorption causing pancreas damage. It is due to the similar tissue types that occur in both Type 1 diabetes and celiac disease. type one diabetes comes on in young people and is associated with lack of insulin( also called juvenile onset). These two diseases have tissue types that can be similar, and reports suggest up to 10% of type one diabetics of causcasian extraction may have celiac disease. In iowa it is about 6 %. Usually the diabetes is diagnosed first. The symptoms of type one diabetes are usually obvious, with weight loss, passing a lot of urine , increased appatite, blurring of vision. it is the celiac disease that can remain hidden. Not medical advice Joe murray ========================================================================= Date: Wed, 25 Oct 1995 12:05:04 -0500 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) Subject: Re: CELIAC Disease and lupus, etc There very little info on the statistics for the coexistence of celiac disease and other autoimmune disease. They certainly can co-exist, however good studies are lacking. The association with lymphoma is better described. However the risk in non compliant biopsy proven celiacs is still quite low 5% lifetime risk. it is lower still in compliant patients. Are there individuals who have a higher risk of getting it, other than the compliance issue, age may be another factor. The older a patient is the greater the risk. As more atypical patients are diagnosed with CD the % who get lymphoma will likely fall. not medical advice Joe Murray ========================================================================= Date: Thu, 26 Oct 1995 06:49:46 EDT From: Bill Elkus (Bill_Elkus@JEFCO.com) Subject: gluten in mother's milk A little while ago, there was discussion of whether a mother eating gluten could transfer it to her nursing baby. Here is some additional input, reposted with Dr. Horvath's permission Bill Elkus To: Bill_Elkus @ lanet1.jefco.com (Bill Elkus) @ MHS From: khorvath @ umabnet.ab.umd.edu (Karoly Horvath) Date: 09/29/95 08:06:05 AM Subject: Re: dietary proteins in mothers milk Proteins ingested by mother can appear in the breast milk. There is well known disease in breast fed babies called eosinophilic colitis, which causes eosinophilic infiltration in the large intestine of the babies and clinically presents as rectal bleeding. The therapy is very simple: the mother stops ingesting cow milk and cow milk products and the babies do not have bleeding and they are completely well. Based on this clinical syndrome, I do not have any doubt that gluten peptides can be in the circulation. I recall a study (in some dermatological journal) detecting circulating gluten in the blood of patients with DH. Karoly Horvath Baltimore ========================================================================= Date: Fri, 27 Oct 1995 08:05:09 -0400 From: Karoly Horvath (khorvath@UMABNET.AB.UMD.EDU) Subject: Re: Autoimmune diseases and CD There is an old and excellent publication about "Celiac disease and immunological disorders" (Cooper BT, Holmes GKT, Cooke WT. Britsih Medical Journal, 1978:1:537-539.) Out of 314 patients with CD, 63 had associated disorders of known or suspected immunological cause. 52 autoimmune diseases were found in 45 patients. An important point: most of these diseases developed when the patients were on NORMAL DIET. Karoly Horvath, M.D., Ph.D. Baltimore ========================================================================= Date: Mon, 6 Nov 1995 13:43:08 -0600 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) Subject: Re: swelling arm Not medical advice after a mastectomy a rare complication is lymphedema of the arm on the same side. this a blockage of the lymph channels in the arm pit. It may be helpful to maintain great care in protecting that arm from injuries, cuts etc. Elevation might help. aproblem like should be discussed with the doctor/ surgeon who did the operation. Joe Murray ========================================================================= Date: Fri, 10 Nov 1995 23:38:49 +0000 From: "P.SHATTOCK" (hs0psh@ORAC.SUNDERLAND.AC.UK) Subject: Re: grain alcohol Being a keen beer drinker myself I realise that there may be those on this list for whom such delights are impossible and I wondered if there was something that could be done about this sad situation. On our campus there exists a "Brew Centre" where people can train in this subject. Apparently many of our "graduates" have gone on to found their own micro-breweries in various parts of the world. It occurs to me that it should be possible to make a beer which can be guaranteed to be gluten free (or at least free from wheat, barley or oat prolamins). I have discussed it with the top man and he is quite keen to try out a few ideas. Clearly this would not be a great money spinner as the market is comparatively small but I just wondered if any of the folk who do have a problem with beer would be interested in such a project or think that it is worthwhile. If no-one is interested we will not bother. If anyone would be interested in such a product perhaps you could let me know. If there is an interest it would encourage further efforts in this direction. Cheers, Paul Shattock ========================================================================= Date: Wed, 15 Nov 1995 13:17:42 PST From: "Donald D. Kasarda" (kasarda@PW.USDA.GOV) Subject: sorghum/millet beer comment from Don Kasarda, Albany, CA, on beer question. There is no adequate standard analytical method (that I know of) to test for gluten peptides in beer. Of possible interest, however, is a box included within an article that was part of an section about Africa in New Scientist (October 7 issue, I think), a British publication. Because some of their staffers had indicated that African beers made from sorghum and millet, which they had encountered during the visit to Africa to prepare the section, were quite tasty, the magazine editors sampled some African beers that are available in Britain as a side comment to the article. The claim was that these beers are made with millet or sorghum and without barley malt, but rather fermented with a bacterial enzyme. Consequently, if this is true, the beers should be free of any barley, wheat or rye components. I doubt that these beers would taste like a barley-based beer, but they did say that some of the beers consumed in Africa were quite good--the few brands that could be bought in Britain were maybe less good. ========================================================================= Date: Thu, 16 Nov 1995 00:50:44 +0000 From: "P.SHATTOCK" (hs0psh@ORAC.SUNDERLAND.AC.UK) Subject: Gluten Free Beer There has been quite an encouraging response to my previous posting about the desirability of such a product. Don Kasarda has described precisely what we had in mind for this product. We have been checking out the possibilities for a "beer" based on sorghum or on millet. My understanding is that these grains would be low in the amylase enzymes which are required to convert the starch into fermentable sugars. Therefore enzymes from some other source must be added and these are available from bacterial sources. Personally I have not knowingly tasted the African products which are made in this way but I am told they are perfectly acceptable. I will try to get hold of some and perform some organoleptic tests. I must also agree with Don that it is very difficult to test for gluten content in beer and so it would be necessary to be able to guarantee that the starting materials are all totally clean. However we will try to think of something which will work. Katriina Mdkinen has reported that a number of very well known European brands of beer are claimed to be "gluten-free" by the Swedish Coeliac Association. I am only guessing here but I would imagine that this status is obtained by filtration of the proteins. It has been reported that it is not necessary to have the whole molecule of gluten to get the classic coeliac response so presumably soluble peptide elements (from breakdown of the protein) could still evoke this response in a technically "gluten-free" beer. Am I correct on that one Don (Kasarda)? I have been censured for asking personal questions on this list but I thought the question and the hoped for response might be of general interest. Good Health, Paul Shattock. ========================================================================= Date: Wed, 15 Nov 1995 18:43:55 PST From: "Donald D. Kasarda" (kasarda@PW.USDA.GOV) Subject: beer proteins/peptides Paul Shattock asked: )It has been reported that it is not necessary to have the whole molecule )of gluten to get the classic coeliac response so presumably soluble )peptide elements (from breakdown of the protein) could still evoke this )response in a technically "gluten-free" beer. )Am I correct on that one Don (Kasarda)? Yes, Paul is correct. A typical gliadin (or hordein) protein will contain approximately 300 various amino acids of 20 types linked end-to-end in a specific sequence into a necklace-like chain. During the enzyme action in the process of beer making, however, the chain is broken down into smaller pieces. Testing for the intact protein will probably show nothing because there are no (or only very small amounts of) intact proteins of the gliadin or hordein types remaining and there are no good standardized tests for the smallest peptides that might be harmful to celiac patients. There is pretty good evidence for a 19 amino acid residue peptide having toxicity (Ciclitira and coworkers, Lancet). This small size peptide would require very special research to be carried out in order to enable its identification in beer. It would not be filtered out from the beer. Electrophoresis of the proteins of beer shows no intact hordeins. This does not mean that the harmful peptides are not present. They may or may not be present. I don't think the subject has not been researched adequately. Don Kasarda, Albany, CA ========================================================================= Date: Thu, 16 Nov 1995 09:08:26 EDT Name: Bill Elkus (Bill_Elkus@JEFCO.com) Subject: Re: Gluten in NonFood Products Recently, there was a post which asked about reactions to gluten-containing products in non-food items, like shampoo or skin cream. The listowners asked for comments from the CEL-PRO subscribers, who are clinicians and/or researchers in the celiac field, and received these two: ~~~~~~~~~~~~~~~~~1~~~~~~~~~~~~~~~~~~~ While most celiacs are unlikely to have a reaction to topical gluten there are some individuals who claim to get a reaction to these non-food substances. For a gut reaction it would seem that it is necessary for the substance to get to the gut lumen. I am not aware of any studies on the penetrance of topical substances to gut lumen. ... I tell celiac patients who ask, that if there is an easy alternative shampoo/ cosmetic/etc. use the non gluten containing substance. I do not routinely counsel patients about avoiding gluten in these substances. I have met some patients who have an anaphylactoid response to gluten and these patients I tell to avoid gluten in all forms. ~~~~~~~~~~~~~~2~~~~~~~~~~~~~~~~~~~ There are countless coeliacs who several times a week have dermal contact with gluten. These are coeliacs who bake for the rest of the family with regular flour. In my experience ( an adult coeliac clinic of well over 500 patients) none of the many coeliacs who do home baking for the rest of their families with gluten containing flour develop symptoms, either in the GI tract or the skin. I not aware of baking being associated with poor response to a gluten free diet. Topical gluten in the upper airways causes symptoms of allergic rhinitis in an occasional patients. I have always assumed this to be due to coexistent atopy. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ These are the views of just two celiac professionals, and not the result of tens of scientific studies. In the early days of this CELIAC list, there were an number of posts claiming serious reactions, so not everyone will agree with these doctors. As with so many other issues, each Celiac must make their own decision. Having read these, I will still try to avoid obvious gluten-containing non-food items for my Celiac son, but if none are available, I will probably go ahead and use the gluten product. Bill Elkus Los Angeles ========================================================================= Date: Sat, 18 Nov 1995 13:48:31 -0600 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) Subject: Re: Blood test normal ranges Unfortunately because these tests are not standardised, there is no one set of normal ranges. Each laboratory in the USA has to generate their own normal range. The scales are not comparable, So follow up tst results done at another lab may not be accurately compared with teh results obtained at the first lab.. anothe problem is that there is tremendous consolidation in the laboroatory world with bidding processes making it possible that your provider may end up sending later specimens to different labs. It does not mean that any one lab is better than another, just different. Joe Murray Not Medical Advice ========================================================================= Date: Sat, 18 Nov 1995 13:53:45 -0600 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) Subject: Re: CELIAC disease and Fosamax Fosamax, Alendronate, is a newly available drug used to treat postmenopausal women with osteoporosis. It does so by blocking resorption of bone. It may be important to make sure that a celiac individual does not have osteomalacia, or hyperparathyroidism before starting someone on the drug, as it might make it worse. the issue of whether the drug is gluten free also needs to be established. This only one issue to be considered The potential interaction with hormone replacement needs to be addressed also. Not Medical advice Joe Murray ========================================================================= Date: Sun, 19 Nov 1995 17:07:36 PST From: "Donald D. Kasarda" (kasarda@PW.USDA.GOV) Subject: gluten in normal diet Kemp Randolph asked how much gluten is in a normal diet and how much has been shown to have an effect on celiac patients? I estimate very roughly that a normal diet would include about 10-40 g of gluten per day. I estmate (also roughly) that normal wheat bread contains about 0.04 grams of gluten per gram of bread. To the best of my knowledge, the smallest amount that has been tested with patients and shown (biopsies taken) to have a definite effect is 0.1 gram per day (Catassi et al.). The biopsies demonstrated an increase in intraepithelial lymphocyte count, one of the earliest signs of an effect. The challenge was on 10 patients (children) for 28 days each. Four of the patients showed an increase in IgA antigliadin antibodies. The intestinal permeability test remained normal. Washed wheat starch contains somewhere between 0.001 grams and 0.1 grams of gluten protein per 100 grams of starch. The true amount is, in my opinion, not known because of problems with the analytical methods available for defining gluten bound to starch. Also, the method of preparation affects the amount of gluten present on the starch. Better washed wheat starches probably approach the lower limit and poorly washed starches may approach the upper limit. This is not medical advice in any legal sense. It is off the top of my head-- hence, let the reader beware. Perhaps others on the list will check my numbers and comment or correct. Don Kasarda, Albany, CA ========================================================================= Date: Sat, 4 Nov 1995 09:45:41 EDT From: Bill Elkus (Bill_Elkus@JEFCO.com) Subject: CEL-PRO on Oats As promised, the following are comments from professionals on the CEL- PRO list about oats. Our own __personal__ decision from reading the NEJM article and the CEL-PRO discussion is to not yet add oats. Here are the factors which concern us: a) Oats seem to have a particularly significant cross-contamination problem with wheat. The oats research project obtained specially pure oats which are not readily available to us, the regular celiacs of the world. b) The NEJM study had patients with only small amounts of oats eaten per day, and only for six months. It could be that larger amounts and/or longer periods of time will show significant damage. c) Only intestinal damage was checked. Damage can also occur in other systems of the body, and we all know that our personal feelings are not valid indications of whether a food is causing celiac-related damage. On the other hand, newly diagnosed celiacs with flat jejunal lesion showed recovery of the mucosal architecture whether or not oats was included in the gluten-free diet. We all certainly hope that future research will validate and extend the NEJM oats study. The listowners of CELIAC take no 'official' position on this issue -- our job is to make the information available to you so that you can make an informed decision. So here is their discussion, with minor editing and the names removed at their request, so that each of you can judge for yourself .... The Listowners -----Edited CEL-PRO discussion follows. ---- ***Disclaimer - this is NOT medical advise, it is a general discussion of the oats issue. See your own doctor for application to your particular situation *** ~~~~~~~~~~~~~~~~~1~~~~~~~~~~~~~~~~~ I will start off the oats discussion by commenting that this is probably the single most comprehensive study of the effects of a grain on celiacs. The earlier evidence for oats as a deleterious agent in celiac disease was based a very small # of patients or case studies. reading the report in the NEJM this week would suggest that oats are safe for most uncomplicated celiacs. There are however some reservations about the study. Severe celiac disease was an exclusion, there were some drop outs in both the oats and the control groups and patients with complications were excluded. If the findings are generalisable to the whole population of celiacs then it would certainly make life a lot easier. I have a concern about whether oat flour is reliably free of contamination with barley/ wheat. Also what would happen if we challenged a celiac with high doses of oat flour, greater than the 50g used in this study. Also would oat flour protein produce any of the subtle changes seen in the rectum with enema challenge. ~~~~~~~~~~~~~~~~~2~~~~~~~~~~~~~~~~~ Here in Finland [where the NEJM study was done] there are mixed feelings about oats. Our colleagues from Kuopio have done a very good study, and in fact the study is going on. Five year follow-up results will tell us more, the authors are this autumn rebiopsing the coeliacs eating oats. Within our Celiac Disease Study Group we have discussed this, and we are going to discuss the item within the expert team of the Finnish Coeliac Society. At this point I want to say some words regarding children. Today we are not going to allow coeliac children to eat oats. We are first going to perform a study, our ethical committee has accepted our protocol.We are also going to look at minor jejunal changes in the *normal* mucosa revealed by immunohistochemistry. Again, the oats producer will provide us the oats for the study (same deep-freezed tested batch through the whole study). If no harm is seen, oats will be accepted also for children and this is important in our country, we by tradition consume oats. Then another story is whether all oat flour products at our market are clean. This is a real practical problem and we will study this. As you probably know, in Ireland the oats was contaminated, Dr. Conleth Feighery and colleagues used in their study oats from a German producer, tested not to be wheat contaminated (from the fields and mills). The Irish study pointed at the same direction as the Finnish one (9 adult coeliacs challenged with 50 g of oats for 3 months), oats was tolerated. The authors also looked for immunological activation in the mucosa, no changes were seen (paper presented at the 8th International Congress of Mucosal Immunology, San Diego, July 1995, abstract Srinivasan et al. Oats cereal is not immunogenic in coeliac disease. Clin Immunol Immunopathol 1995;76 (part 2):S72). ~~~~~~~~~~~~~~~~~3~~~~~~~~~~~~~~~~~ I would agree with [#2 above] about caution. I would like to see the longer follow up data before telling my patients they can eat gluten. If oats have a weak deleterious effect it may take a lot longer than wheat to produce changes that are apparent on microscopy. Could the use of the gluten reduced starch have had a confounding effect on the study. The symptom scores seemed not to be very discriminatory in that the control group in remission had a similar score to the newly diagnosed celiacs. [editors note - the Finnish study was of celiacs who consumed low- gluten wheat starch. As we know, this is an issue of considerable controversy. Many European countries consider this perfectly safe, but in the US most celiac groups do not. It the US groups are correct, then celiacs consuming wheat starch and oats might have abnormal results compared with celiacs consuming no wheat starch and no oats, but the Finnish study would not have discovered that since it compared the oats group to control group which also consumed wheat starch] The low amount of avedin 1.2g of avedin/ 60 grams of oats is not very much by comparison and may take a lot longer to generate damage. I am uncomfortable with the conclusions of the authors that it would help compliance to give patients the oat option with the knowledge that there is only a little protein in it. Are they likely to be any more compliant or will they just add oats to their unrestricted diet. If I am going to recommend to patients that they can eat moderate amounts of oats it will be to patients who are most likely to be compliant with the dietary restrictions on wheat, barley and rye, and who wil come back for follow up. These are probably not the patients likey to benefit most from easing restrictions. Five year follow up data would be more reassuring. Also the comments about purity of the oats is important to keep in mind. It would have been interesting to look at the serological markers in these patients. ~~~~~~~~~~~~~~~~~4~~~~~~~~~~~~~~~~~ I just got back from a meeting in Europe on the epidemiology of Celiac Disease. There was a big discussion within the scientific community present at the meeting about the NEJM paper on oat tollerance in CD. We all had a mixed feeling about the conclusions of the study and my position is enterely in line with [the authors of #1, #2 and #3] comments. ~~~~~~~~~~~~~~~~~5~~~~~~~~~~~~~~~~~ The results of Kuopio group published in NEJM are probably changing our dietary recommendations. [The author of #1] has recently discussed the situation in children. The study has been carried out in adults, and in adults the demand to change dietary recommendations is strong, as we have noticed during the last days. I think adult celiac patients can switch to oats containing diet under strict follow-up. The amount of oats tolerated, the long-term effect of oats, and the importance of gliadin contamination has to be investigated, however. I recommend to my CD patients that they should undergo gastroscopic examination 1-2 years after starting oats-containing diet. Some antecedent information of the mucosal architecture should be available as well. If not, a duodenal biopsy should be taken even before starting of oats. By this way we also can observe possible minorinflammatory changes such as an increase in IEL or alpha-beta T-cell receptor bearing lymphocytes. If this arrangement sounds too laborious, at least a strict follow-up by physicians and dieticians are essential. The follow-up comprises general well-being, signs of malabsorption and EmA or AGA analysis. ~~~~~~~~~~~~~~~~~6~~~~~~~~~~~~~~~~~ I would agree with [author of #5] that it may be reasonable to introduce to certain well controlled and already compliant patients. 50 grams is quite a small amount and 6 months is not long. I agree that in those patients that follow up biopsy possibly including a more senstive markers for reaction that simple architecture is needed. However I fear that limiting intake to 50 grams, the issue of contamination, compliance with follow up will be difficult in our setting due to cost and other factors. Many patients with celiac disease have little or no follow up. Is any one aware of the % of patients who don't follow up? This is a difficult if not impossible question in the US due to people moving, health insurance mandated changes in doctor etc. ~~~~~~~~~~~~~~~~~end~~~~~~~~~~~~~~~~~ ========================================================================= Date: Thu, 23 Nov 1995 11:43:27 +0000 From: "P.SHATTOCK" (hs0psh@ORAC.SUNDERLAND.AC.UK) Subject: Gluten Free and Cost Free (UK) In the UK, in spite of the best efforts of our government, we retain the vestiges of our National Health Service. Under this system medications are provided free of charge or at a uniform flat charge. Gluten Free breads, biscuits, flour etc have, for many years, been available to people diagnosed with Coeliac Disease. Today we had, as far as I am aware, our first success for a person with autism. The young boy's physician was sufficiently impressed by the changes he had seen to prescribe gluten-free products on the NHS. (totally free of charge for children.) If the bureaucrats who monitor such prescriptions are not satisfied they can challenge the decision and if they are successful the physician must pay out of his own pocket. Of course, the physician could challenge the decision and the veracity of the opioid excess theories of autism and the effectivenes of gluten/casein free diets would be decided in a court of law. This should be entertaining - perhaps the government will be forced to invest in a decent scientific study. Perhaps we can then celebrate Thanksgiving day over here. Paul Shattock ========================================================================= Date: Sun, 26 Nov 1995 00:09:06 -0600 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) Subject: endoscopy and biopsies There was w recent description of a biopsy preformed on an adult. The practise of and the experience of having an endoscopy differ significantly from individual to individual and from country to country. The person from the Netherlands described a endoscopy done without sedation. The use of sedation can dramatically alter the perception and recollection of the proceedure. This of course can alter the way people feel about having it done. Other factors such as supportive staff, size of the scope, local anaesthesia, preparedness of the patient, anxiety and health status all play a part in the experience. The use of sedation for routine endoscopy varies from country to country and from practise to practise. In the US currently most endoscopy would be done with sedation. Modern sedating drugs aim to induce relaxation, and often amnesia for the event. The patietns are conscious in the sense that they can follow verbal requests, breath on their own and protect their airway. If you are to have a biopsy talk to the endoscopist methods to make it as little uncomfortable as possible. Not Medical Advice Joe Murray ========================================================================= Date: Sun, 26 Nov 1995 00:37:13 -0600 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) Subject: re excessive thirst in a 8 yr old celiac The single most important disease that causes escessive thirst, tiredness and increased urination is diabetes. These symptoms need urgent medical attention without any delay whatsoever. There is an association between Diabetes mellitus( juvenile type ) and celiac disease due to similar genetics. Not medical advice Joe Murray ========================================================================= Date: Wed, 29 Nov 1995 10:55:04 -0600 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) Subject: Re: CELIAC Disease and tropical sprue Tropical sprue is a condition that can produce changes in the intestine that are similar to celiac disease. It happens to people who have been in highewr risk places , southeast asia and south america. It is treated with antibiotics and folic acid with goood and prompt resolution in most cases. If there is a question of tropical sprue then usually it more sense to treat for that first before trying a glutenn free diet. It is said that the damage form tropical sprue does not get as severe as that of celiac disease, but it may be very hard to distinguish. Parasitic infestations also need to be considered in people returning from underdeveloped areas. Not medical advice Joe Murray ========================================================================= Date: Thu, 30 Nov 1995 11:37:02 PST From: "Donald D. Kasarda" (kasarda@PW.USDA.GOV) Subject: malt in cereals Beverly Sosulski wrote: )Kelloggs products contain more than 0.02g/kg of Gluten and )are toxic to Coeliacs. I would be interested in learning how the amount of 0.02 g/kg was arrived at. I would also like to point out that, to the best of my knowledge, such an extremely small amount of gluten has never been demonstrated in any scientific way to be harmful to celiac patients. To put this quantity in other ways, it is 0.002% and a normal serving of cereal, say 50 g, would have only 1 mg of gluten in it at the 0.02 g/kg level. I am not saying that this low level isn't harmful, particularly for someone in a debilitated state. The question has never been addressed adequately in a scientific way. I say, on the other hand, there is a possibility (my educated guess based on what I think is a reasonably good knowledge of what testing has been done) that for the average celiac, such a small amount is not harmful. For example, in the recently published study on oats (Finnish study), the patients were fed a mixture of oats and wheat starch. Accordingly, they were probably ingesting more than 0.02 g/kg of gluten (from the wheat starch, which apparently contained 0.74 mg of gluten per gram of starch). Recovering celiac patients continued to recover (Janatuinin et al. NEJM 1995: "We found that the use of oats by patients with celiac disease as part of a gluten-free diet had no unfavorable effects on adult patients in remission and did not prevent symptomatic and mucosal healing in patients with newly diagnosed disease.") Not medical advice. Don Kasarda, Albany, California ========================================================================= Date: Fri, 1 Dec 1995 12:40:12 PST From: "Donald D. Kasarda" (kasarda@PW.USDA.GOV) Subject: 0.02 grams per kilogram I thank Beverly Sokulsky for her comments and explanations. I do have a number of reservations about various aspects of what Mr. Howarth has said. I don't have time to go into great detail, but some of my past postings are pertinent. I shall just make a few comments. 1. I don't think there is any analytical method that meaningfully and accurately measures harmful proteins or peptides (they are not always the same) on starch or in other foods at the 0.02 gram per kilogram level. So it seems to me that to base a regulation on that number is rather arbitrary. 2. I don't think there is any evidence that gluten at the 0.02 gram per kilogram level causes increased incidence of cancer in celiac patients and some evidence to the contrary. As always, I emphasize that we do not have as much scientific information as we would like, and people may choose validly not to risk ingesting any food that might in any way be contaminated with gluten (which carried to an obviously absurd extreme would cause one to give up food). I am, however, frequently disturbed by the way arbitrary decisions and pronouncements by various people become accepted by the celiac community as based on valid scientific results. I ocasionally try to point out when statements made are invalid or go beyond what may reasonably be inferred from the scientific work that has been done so far. Of course, new information is being developed continually--as in the case of oats. What was considered scientific fact some years ago must give way to new (usually better) experimental evidence. I assume that almost everyone on this list would prefer to start with valid information from which to proceed to sometimes necessarily arbitrary decisions about his or her diet and behavior. Don Kasarda, Albany, California ========================================================================= 01-27-96 11:44pm Date: Tue, 12 Dec 1995 10:20:09 -0600 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) Subject: Re: oats and celiac children I have noticed that some people refer to using oats in celiac children as though that were generally acceptable. I do not beleive that to be so. There have been some studies that have shown oats to damaging to children with celiac disease. The preliminary report in the new england journal of medicine I do not interpret as a license to eat oats for all or even many celiacs. The study looked at a small amout of specially prepared oats in adults without severe celiac disease. No conclusions can be drwn about children from this study. I am not recommending to my patients that they can eat oats. There needs to be a lot more infomration available before oats can be used freely if at all by celiacs. If a patient want s to use oats I suggest that follow up biopsies would be prudent. No body knows if the antibody tests availalbe will be sufficient for the purpose. Joe Murray Not medical advice ========================================================================= Date: Tue, 12 Dec 1995 10:38:08 -0600 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) Subject: Re: CELIAC Disease and lab charges My suggestion is to find out from the billing service for the lab what the codes actually mean and then hassle the insurance company. Dont accept the initial response and keep going higher in the insurnace company. Kepp records of who you speakj to and what they told you. put as much as possible in writing. $20 dollars is rediculous. 100 to 200 is usual. Good luck in your battle with the insurance company. joe murray ========================================================================= Date: Tue, 12 Dec 1995 16:15:38 PST From: "Donald D. Kasarda" (kasarda@PW.USDA.GOV) Subject: Re: Query: sprouted wheat Reply from Don Kasarda, Albany, California Most sprouted wheat still has gluten or gluten peptides remaining. Although the sprouting begins enzymatic action that starts to break down the gluten (a storage protein for the plant) into peptides and even amino acids. Generally this is not a complete process for sprouts used in foods so some active peptides (active in celiac disease) remain. I don't know anything about Bioguard specifically, but I would be cautious about it until the company can say on what basis they are claiming "gluten-free." For example, how have they tested this? )I just purchased an antioxidant from a health-food store, called "BIOGUARD". )The label reads: "Bioguard is composed entirely of hydroponically grown )wheat sprouts. Hypoallergenically free of wheat gluten and yeast." ) )J. F. Levin, Lit/Lang, UCR. 909 787 5007 ========================================================================= Date: Wed, 13 Dec 1995 15:33:07 -0600 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) Subject: Re: CELIAC Disease and sjogren's disease There is an increased assocaition between the two disease's, probably because both are autoimmune diseases. One scandanavian study ( small ) suggest that 10% of sjogren's patients also had celiac disease. Joe Murray Not Medical advice ========================================================================= Date: Mon, 18 Dec 1995 12:10:58 +0000 From: "P.SHATTOCK" (hs0psh@ORAC.SUNDERLAND.AC.UK) Subject: Re: urinary tract symptoms On Thu, 14 Dec 1995, ANDREW E. STEVENSON wrote: ) I'm interested in the recent discussion on urinary tract symptoms and their ) possible relation to gluten. One of the unexpected changes in our four-year-old ) daughter once she went gluten-free was in her bathroom habits. Before her ) diagnosis, she always insisted that she never had to urinate, and she usually ) went only twice a day. She had "accidents" a few times a week. Once she began ) the diet, we were amazed that she began urinating regularly every few hours, as ) we would have expected a child to do. Now, she rarely has an accident--it seems ) to happen only when she accidentally ingests gluten. It's as though something ) about her reaction to gluten makes her unable to monitor her bladder sensations. ) (much interesting and supportive data snipped) I am sorry to have been so slow in stepping into this discussion but "better late than never". I appreciate that Coeliac Disease and Autism are different and that it is by no means universally accepted that gluten is of relevance in the latter. Nevertheless, there are similarities and, I suspect, certain areas where there exist commonalities in terms of symptoms and causation. Our studies have centred around autism and so any comparisons which you wish to make with Coeliac Disease must, dear reader, be a matter for your own determination and decision. In our (unpublished in formal journal) study we found clear evidence of a general reduction of sensitivity to sounds, taste and proprioception. Our attempts at visual tests were inadequate but the student concerned did perform some limited tests on one subject for the perception of pain. (This last study was difficult to replicate for ethical reasons but the subject of the study was the student's brother and in such situation ethical considerations tend to be ignored.) It should be noted that within this general reduction of sensitivity there were certain exeptions where comparative hypersensitivity exists (for example the particular frequency which the door-bell uses or Whitney Houston's top note) and distress could result. OK we are extrapolating from these situations but if these senses are affected it is likely that others will be as well. An example would be the peculiar sense of balance which is exhibited by people with autism. We subscribe to the theory that gluten (and casein) derived peptides with opioid activity are reducing tramsmission in the brain and, thereby reducing the perception from all the senses. In the case of the "balance" situation, we would regard the unusual skill as the consequence of the inhibition of transmission of impulses between the semi-circular canals of the ear to the interpretive centres of the brain. Thus, when the source of the opioids is removed, the sensations will get through and the situation as you describe will result. In the same way, when the gluten is re-introduced, the opioid peptides would re-appear and exert their effect. It is interesting that some folk have reported that upon initiation of such interventions their child apears, temporarily at least, to urinate much more frequently than before. I appreciate that I have missed out most of the explanatory information but my posts have a habit of being overlong anyway. Congratulations on reaching this far. Paul Shattock ========================================================================= Date: Wed, 20 Dec 1995 17:27:18 -0500 From: Kevin Lawson (IMMTEST@AOL.com) Subject: Re: Blood Test Lab The serological diagnosis of CD is made by these three tests (IgG and IgA anti-gliadin, endomysial (EMA) and reticulin (ARA). To obtain meaningful results, it is essential that the tests be performed on well-standardized test kits by experienced laboratory personnel. Because of these limitations the results may vary from laboratory to laboratory. I would advise sending the results to laboratories that specialize in these tests. Dr. Vijay Kumar ========================================================================= Date: Thu, 21 Dec 1995 11:59:55 -0500 From: Kevin Lawson (IMMTEST@AOL.com) Subject: Re: need advice Celiac Disease can easily be diagnosed by simple blood tests. These blood tests, when performed by experienced laboratory personnel are very specific for CD. If you believe you and your family member have CD and it is precipated by wheat, I recommend that you have blood samples sent to a specialized lab. I believe several have been mentioned on this list in previous postings. Sincerely, Vijay Kumar President IMMCO Diagnostics ========================================================================= Date: Fri, 22 Dec 1995 15:44:27 -0600 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) Subject: Re: CELIAC disease and response to GFD The issue of how long it takes to get a response to the start of a GFD in a celiac has to be individualised to the patient and the type of symptoms the patient has. Most patients notice some change in the symptoms within days or 1-2 weeks of starting the GFD. A few will take longer to start to respond. "start to respond means less severe symptoms not no symptoms. The more exacting the gluten free diet is the faster there may be healing. Lactose intolerance may take longer to get better so avoiding milk products for a while these people sometimes help. Rare complications may delay healing. The most common reason for a deal in remission of symptoms is a diet that is NOT GF. Dermatits herpetiformis responds more slowly to the GFD. It may take months for theitchy attacks to go away, sometimes even longer. Hence Dapsone and other drugs are used to suppress the symptoms of the itch. These usually do this quite effectively, but need close monitoring as they can be associated with some side effects. Not Medical advice Joe Murray ========================================================================= Date: Fri, 22 Dec 1995 16:01:29 -0600 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) Subject: Re: fat malabsorption, investigation The finding of increased fecal fat in the stool when measured over a 2-3 day period is almost always a sign of GI problem, not irritable bowel syndrome. There are literally 100's of causes of steatorrhea( thats the medical term) some have normal mucosa, some do not. A normal d-Zylose test implies it is some problem with normal mucosa that is causing fat malabsorption but not always. Pancreatic or liver problems can cause fat malabsorption and have nornal biopsies of the intestine. This is a very difficult area of diagnosis as there are so many causes. Not Medical advice Joe Murray ========================================================================= Date: Fri, 22 Dec 1995 16:44:41 -0600 From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) Subject: Re: diagnosis, blood tests and biopsies There have been many recent statements on the list that I feel I should reply to regarding the diagnosis of Celiac disease. The 2 most important and accepted criteria for the diagnosis of CD in adults involves the demonstration of damage in the intestine and a subsequent response to the elimination of gluten from the diet. This combination is usually very adequate to identify the disease. There are caveats to this. One the biopsies should be taken while the people has been on a normal ( as opposedto gluten reduced or free diet), two several separate biopsies should be taken from the intestine( during the same proceedure) 3. these biopsies need to be properly oriented and stained ( quality varies dramatically), 4. An experienced pathologist needs to read these biopsies and recognize that there is a suspicion for celiac disease. 5. The GI has to interpret the results appropriately. Sometimes the pathologist will describe the abnormal findings but not mention celiac disease as a possibility. If the GI is aware of the findings relevance to celiac disease he may not make the connection. Single biopsies may miss patchy changes. Blood tests( endomysial, reticulin and gliadin ) have been around for several years in various forms. These tests when used in research studies in europe mostly have been shown to coorelate well with classic celiac disease found on biopsy. These tests are not perfect. There is much variation between labs. There are people who have celiac disease whose blood tests are negative but who have it on biopsy. There are some people wo may have false positive tests( that is have a positive test but dont have the disease), though this is rare. Whether blood tsts alone can replace the need for biopsy is still undecided and broader experience in general usage will determine how well they stand up to the test of time. This all goes to illustrate that the diagnosis is not simple and sometimes it can provide problems for patient and doctor alike. It also shows that quality in all things makes a big difference. Sometimes cost containment does not not deliver quality. For those of us in the USA where HMO's PPO's and other managed care systems are growing there may be decreased access to quality specialty care due to const containment measures that limit patients access to special services or make it very difficult to get good care for conditions that are rare or ill understood. Celiac disease will need vigorous representatioin at all levels to get it on the managed care map and keep it there. How can one influence health care decisions. If you are an individual who has choice over what kind on health insurance you get ( lucky you if you can afford it) ask a lot of quastions about how they deal with rare diseases?, do they allow access to academic centers? what is the referral process for out of network referrals? etc. If you work for a large corporation, try to get on the employeee committees that oversee negotiation with health insurers, etc. They have to pay at least lip service to quality issues. Not medical advice heck it's not even good political advice Joe Murray ========================================================================= Date: Tue, 26 Dec 1995 09:31:42 -0500 From: Kevin Lawson (IMMTEST@AOL.com) Subject: Re: need advice There are three serum tests (EMA, ARA, AGA) for the detection of celiac disease. According to the criteria set forth by the European Society for Pediatric Gastroenterology and Nutrition (ESPGAN), two of the three serological tests must be positive for the diagnosis of CD. EMA has proven to provide the highest degree of specificity and sensitivity. Results will vary somewhat according to the expertise of the laboratory and the experience of the laboratory personnel. If you have any questions, I would be glad to hear from you. Vijay Kumar, Ph.D., F.A.C.B.
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