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Currently, the Center for Celiac Research is involved in three critical research areas: Multi-Center Serological Screening Study to determine the prevalence of Celiac Disease in the United States We have tested 3,998 individuals as part of the Multi-Center Serological Study for the prevalence of Celiac Disease in the United States. Our preliminary findings indicate that 5.7% of first -degree relatives and 3.1% of second degree relatives of celiacs test positive for the disease. These results are similar to those reported previously in Europe, suggesting that Celiac Disease is currently under-diagnosed in the United States. We are extremely encouraged by these preliminary findings; however, many more subjects need to be screened to put the study into full operation. Your financial help is pivotal to accomplish our goals. New Diagnostic Assay to develop a non-invasive diagnostic test for Celiac Disease Our scientists have been able to develop a more sensitive, non-invasive, and specific test for Celiac Disease based on the use of tissue transglutaminase. We were able, for the first time, to clone the human tTG gene. Our preliminary results show that the human TtG assay performs much better than the commerically-available tests (including anti-endomysium antibodies and guinea pig-based transglutaminase assay). New Dot-Blot Assay We have developed a human tTG dot-blot test based on the detection of anti-tTG antibodies in serum or in one drop of whole blood, which can be carried out within thirty minutes. The preliminary results of the dot-blot assay indicate that the assay is as reliable as the human tTG ELISA test, making the diagnosis of Celiac Disease possible at the physicians ambulatory site. If the sensitivity and specificity of these tests can be confirmed on a large scale, a case can be made on the possible discontinuation of the invasive intestinal biopsy procedure as the gold standard for the diagnosis of celiac disease. This would result in early identification and treatment for patients with celiac disease at a significant cost savings. We will continue to validate these innovative tests during the future blood screenings. BLOOD SCREENINGS Blood screenings of first and second degree relatives have been conducted in California, Kentucky, Maryland, Montana, Pennsylvania, New Hampshire, New York, North Carolina, Rhode Island, Texas, and Washington state. FUND-RAISING UP-DATE We are happy to report that as of September 1, 1999, the University of Marylands Center for Celiac Research has received approximately $369,494.00 in contributions and pledges. We thank all of you who have made a contribution or pledge. As we reported in the June update, when we began this effort back in May of 1977, we suggested that if 1000 Celiacs, relatives or friends would make a commitment to pledge $200 per year for three (3) years, we would be on our way to funding this extremely important study. For now, we cannot rely on any outside financial assistance. So please, help us to help you. Remember we are not asking you to make a contribution, but to make an investment in the well being of every celiac - now and in the future. DONATION CHECKS Please make all donation checks payable to the University of Maryland Foundation, Inc. and send with the pledge form or a note saying that the donation is for the Center for Celiac Research. Since the University of Maryland Foundation, Inc. houses all the gift funds for the University, they are not permitted to deposit checks into the Celiac account if the check is not made payable to the University of Maryland Foundation, Inc. Thanks for your cooperation. UNITED WAY CONTRIBUTIONS This is another great way to make a gift to the Center for Celiac Research and satisfy your employers request to participate in the United Way Appeal. Please designate under Other The University of Maryland Foundation/Center for Celiac Research, 511 W. Lombard St, Baltimore, MD 21201. OTHER WAYS OF GIVING TO THE CENTER For many, providing for important research is an important aspect of their financial planning. If this is true for you, prudent and skillful investment planning can create rewarding opportunities for both you and the Center for Celiac Research. You may interested to know, for example, that: Appreciated securities, held long-term, can be given to the Center without incurring a capital gains tax. And, the full fair market value of the securities is available as a charitable deduction. Life insurance that is no longer needed for family or business protection can provide major support for the Center while producing important tax savings for you. Participation in a pooled income fund or the establishment of a charitable trust, using appreciated securities, for the eventual benefit of the Center can be an excellent means of increasing your spendable income and minimizing income, capital gains, estate and inheritance taxes. The final opportunity to express your lasting commitment to the Center for Celiac Research at the University of Maryland School of Medicine is through your will or revocable trust. Of course, charitable bequests are not subject to the federal gift tax and are not included in the taxable estate for federal estate tax purpose. WEB SITE Our web site, celiaccenter.org, has been on line since the middle of June. The research and fundraising updates, as well as updates on the Ninth International Symposium on Celiac Disease, individual and group screening information, blood screening locations, and donation information will be posted on the web site. NINTH INTERNATIONAL SYMPOSIUM ON CELIAC DISEASE The Center for Celiac Research at the University of Maryland School of Medicine, the University of Chicago, and the University of California, San Diego are pleased to announce joint sponsorship of the Ninth International Symposium on Celiac Disease to be held August 10-13, 2000 in Baltimore, Maryland. A brochure outlining the program, and registration and hotel information will be distributed to all group leaders throughout the country, and additional brochures will be made available to them for distribution to their members. We anticipate a very large attendance so we advise you to register as soon as possible. WHAT CAN YOU DO? If you have not made a pledge or contribution, please consider making one at this time. Please make checks payable to the UM Foundation, Inc. Center for Celiac Research, Attn: Pam King, 700 W. Lombard St. Room 206, Baltimore, MD 21201. These funds are administered by the University of Maryland Foundation, Inc. If possible, increase your current pledge or make another gift at this time. Discuss the importance of this study with fellow celiacs, relatives, friends or whoever might be in a position to help. Ask them to contribute. Organize discussions and/or fund-raising efforts with your local support group. Help us to identify possible organization, companies, trusts or foundations that might be in a position to help. Please contact Pam King at 410-706-8021 if you have any questions or need any assistance. Send contributions to the Center for Celiac Research in honor or in memory of a friend or loved one. Make a gift to the Center in honor of the holidays.

Center for Celiac Research Multi-Center Serological Study Update As of September 1, 1998. The University of Marylands Center For Celiac Research has received approximately $190,000 in contributions and pledges. Thanks to those of you who have made pledges and gifts, we have been able to purchase and install a dedicated computer system. The six (6) regional centers have begun minimal screening of study participants. Thanks to a partial grant provided by the University of Trieste, we now have one of the leading international experts in entiendomysium celiac disease assisting us full time in our lab. We have tested 1178 samples as part of the Study for the Prevalence of Celiac Disease in the United States. Our preliminary findings indicate a 6% positive finding of first-degree relatives and 3.4% positive finding of second-degree relatives of Celiacs. These findings are in the same range as were found in most of the European studies done in previous years. As we initially stated in our protocol, we will need to test a total of 45,000 blood samples. All the tools and players are in place - now we need the necessary dollars to put the study into full operation. Blood testing and shipping charges will increase significantly in direct proportion to the samples processed. We thank all of you who have made gifts and pledges. The Celiac community has been very supportive of our grass-roots fund-raising effort. When we began this effort back in May 1997, we suggested that if 1000 Celiacs, relatives or friends would make a commitment to pledge $200 per year for three (3) years we would be on our way to funding this extremely important study. To date we have received ONLY 122 pledges in the amount of $70,335. We have also received a significant number of cash contributions, and as previously announced we were blessed to receive a generous gift of $50,000 from the Oberkotter Foundation. For now, we cannot count on any financial assistance from the NIH. So once again asking YOU to please help us. Remember we are not asking you to make a contribution, but to make an investment in the well being of every Celiac - now and in the future. HOW? If you have not made a pledge or contribution, please consider making one at this time. If possible, increase your current pledge or make an additional gift. Discuss the importance of this study with fellow Celiacs, relatives, friends or whoever might be in a position to help. Ask them to contribute. Organize discussions and/or fund-raising efforts with your local support group. Help us to identify possible organizations, companies, trusts or foundations that might be in a position to help. Contact Pam King, Call (410) 706-8021 for any questions or assistance. All donations and pledges should be made payable to the UM Foundation, Inc. - Center for Celiac Research, Attention: Pamela King, Director of External Affairs, 700 W. Lombard Street, Baltimore, Maryland 21201. These funds are being managed by the UM Foundation, Inc. Thank you again for your commitment to this invaluable research.

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. Dr. Joseph Murray, one of the leading USA physicians in the diagnosis of celiac disease (celiac disease) and dermatitis herpetiformis (DH). Dr. Murray (murray.joseph@mayo.edu) of the Mayo Clinic Rochester, MN, is a gastroenterologist who specializes in treating Celiac disease: 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 celiac disease 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 celiac disease 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 Id really understood what Joe reported and paraphrased: In other words, theyre 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 Joes 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.).

Dr. Lionel Fry from the U.K. talked about DH. He stated that all patients with DH have some degree of enteropathy, even though less than 1 in 10 patients with DH have GI symptoms. Dr. Fry also said 40 percent of DH relatives have gluten-sensitive enteropathy. He went on to say that the gluten-free diet can take 6 months to two years to get healing of DH, and a relapse of the DH rash may take 2 to 12 weeks to occur after someone eats gluten. Total disappearance of IGA skin deposits may take up to 7 years after a gluten-free diet is started. Dr. Reunala from Finland talked about associated diseases. He quoted others who said 5 to 14 percent of DH patients have thyroid disease and went on to say that DH patients have an increased incidence of lymphoma but a gluten-free diet seems to protect against lymphoma.