<<Disclaimer: Verify this information before applying it to your situation.>> From an oral report by Dr. Murray; transcribed for the list by Ann Whelan, editor of the bi-monthly newsletter "Gluten-Free Living". To subscribe, write to P.O. Box 105, Hastings-on-Hudson, NY 10706. THE DAILY REPORT The big story today from Finland is oats. There were two talks and several posters presented about the topic. In the first talk, Dr. Risto Julkunen spoke about the Finnish five-year follow-up study in which oats were given to a population of well-controlled celiacs. They ingested an average of 34 grams, which is slightly over one ounce, daily for up to five years. The oats used in the study were specially grown and tested to be free of wheat, barley and rye. The researchers claim there was no difference in those allowed the oats and those who were not. There was a second study presented from Dublin, and reported by Dr. Conleth Feighery. This 12-week study looked at a small group of patients with healed CD to start with, who were given 50 grams of oats a day. Again, the oats were carefully screened and tested to make sure there was no contamination. After 12 weeks, no effect was seen on biopsy or through antibody tests. The researchers also took 2 of the 12 participants and did what they called a "micro challenge" of 500 milligrams of gluten a day. Both patients got reactions, so the researchers felt that at least two of the participants were sensitive celiacs -- and they still did not respond to the oats. A poster from Italy showed biopsies taken from celiacs that had been studied in the culture plate in the presence of oats, which did show some effect on the biopsies. In other words, tissue from biopsies from patients with treated CD were put in a plate and grown in the presence of oat protein, and the oat protein had an effect on the biopsies. This sounded odd, so I made sure I'd really understood what Joe reported and paraphrased: In other words, they're seeing no reaction from oats within the body in some studies but this one showed a reaction outside the body? "Yes," Joe said, "this of course is puzzling." Continuing on the oats issue, a series of short studies from several places also showed what the Finns had shown in the body, i.e., no problem in the short term. This is Joe's summary on Oats: Over the short term, in well-controlled, healed celiacs who are compliant in every other way, it may be safe for them to take oats that have been tested to be free of contamination of other grains. He also mentioned that there were a few studies showing that contamination of commercial oats may be common in several European countries. (NOTE: I went to Digestive Disease Week in May, where I met several Irish doctors who have studied oats. I would describe their strong beliefs about oats as very "adamant." They are adamant in believing that uncontaminated oats are safe for people with Celiac Disease. If all of this oats talk pans out as being acceptably correct to gluten-sensitive individuals in this country, that would seem to be pretty good news. Then, the next big challenge would be to figure out how gluten-sensitive people are going to get access to contamination-free oats. I, for one, will be all ears.) Moving on to other things: Dr. Paul Ciclitira spoke about in vivo gluten challenge and showed that one gram of gluten produces damage after only two hours. 100 milligrams, that's 1/10th gram, produced some damage or slow damage and 10 milligrams produced no damage. The limitations of studies such as this are that they are highly invasive and there may be some risk. Joe said, "You must leave a biopsy capsule down for 24 hours, so it's not a small deal." Dr. Luigi Maiuri from Italy described an in vitro testing of intestine biopsies that showed a response could be produced. Joe said this wasn't new but what was interesting was that the little pieces of tissue could produce endomysial antibodies when exposed to gluten. Dr. Riccardo Trancone from Italy talked about rectal mucosal response to gluten challenge. He said he could get a measurable response in treated celiac disease patients to gluten, which Joe said was new. Dr. Trancone also talked about the idea that there may be two separate genetic factors involved in CD. One causes the individual to be sensitized to gluten and the second one is involved at the stage of severe gut damage. His work was based on examination of CD family members who don't have CD. Dr. Michael Marsh described the effects of specific peptide sequences from gluten. He had done studies in only two patients. Dr. Marsh said it was very expensive to do tests of this kind because it's very expensive to make the peptide artificially. He estimated a figure of about $5,000 (dollars) to do one test in one patient. Don Kasarda's talk was very hypothetical, Joe said. Don suggested that Celiac Disease may be the result of a collision of two separately evolving processes, the first being the storage proteins in the grasses and the second being control proteins in animals. Both of these have similarities in their proline and glutamine content and could lead to molecular mimicry. An explanation of what he meant is apparently quite complex, and after trying to explain, we gave up. It all has something to do with getting your lines crossed -- and this is hypothetical. Don also talked about the possible peptide fragments responsible for Celiac Disease. In his second presentation, Dr. Paul Ciclitira talked about the potential for identifying small amounts of gluten in foods. Based on what he said in his earlier talk about in vivo challenge, he took 10 milligrams per 100 grams of protein content in food as being the cutoff or threshold. He said that most commercial oats products are contaminated with gluten. Cooking does not alter the toxicity. Dr. Ciclitira also commented about toaster contamination and said he sees about one patient a year who gets contamination from using the same toaster as the rest of the family. Dr. Ciclitira also commented on the Skerrit test, which tests for gluten in food (it's the Australian test). He has "strong reservation" about the test and thinks it's because the test identifies omega gliadins, which are a minor component of gluten so the test can give variable results. Apparently this test is available in Canada. Dr. Ciclitira also mentioned other types of tests that really may not be specific and may pick up other non-toxic grains but may not pick up rye or barley. This brought on a lot of discussion, Joe said. The proposed CODEX Alimentarius threshold for something to be called gluten free is 200 parts per million. That's equivalent to 20 milligrams of gluten in 100 grams of protein. (I'm afraid I can't provide any more information about this.) There was a lot of heated discussion, and a women who may be the President of the European Celiac Societies objected to the allowance of wheat starch. Dr. Ciclitira and others said wheat starch is allowed only because the patients demanded it! Someone else also estimated that the market for GF foods in Europe was 500 million dollars! Joe said that really surprised him. Someone else, perhaps Dr. Ciclitira, said the Vatican now allows wheat starch communion hosts. Sorry, no more information available at this time. Dr. Thomas MacDonald from the U.K., gave a very technical talk on a model system for gut damage. Dr. Erkki Savilahti from Finland spoke about the role of lymphocytes in latent forms of CD. Dr. Markku Maki talked about the possible role of the antibodies in causing changes in the intestine. Dr. Per Brandtzaeg from Norway, whose talk was on "Development of intestinal immunity and its relation to coeliac Disease," made some interesting comments about the mismatch of our genetic makeup and the environmental pressure in the modern world. Again, sorry, no more information at this time. Dr. Brandtzaeg did mention several reasons why breast milk is particularly good for infants and the development of the immune system in that it provides antibodies the baby cannot make that helps protect the intestinal and respiratory tracts. He also talked about other things that are important to the gut like bacteria, age, and possible allergies. Dr. Kagnoff's presentation on "MHC and Coeliac Disease was very technical. He reviewed part of the genetic background on tissue types and CD. Dr. Kagnoff said virtually all celiacs have a specific tissue type but many people with the type do not have CD. Dr. Ludvig Sollid from Norway gave a very technical talk about lymphocytes and, finally, Dr. Joseph Michalski from the United States described how he has identified a new gene site, a small area on chromosome 6 that may be where the other gene for CD is located. Joe said it was interesting and mentioned a "race to find that gene." Dr. Michalski does his work at the University of South Alabama and uses patient material from County Galway, Ireland. (NOTE: I've spoken to Dr. Michalski a few times recently about genetics and HLA typing for a small article that will be in the September/October issue of Gluten-Free Living. He is very interesting and said he might consider writing an article for the newsletter about genes and the search for same. I'll keep you posted, because I'm really anxious to see an article that even the brain challenged among us on things scientific can understand about the genetic mysteries of Celiac Disease.) That's it for today. The last report will be tomorrow. I suspect we will all be talking about the Finland conference for quite a long time. I'm sure I'm just like you in being real anxious to know more about some of this tantalizing information.