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Celiac.com 02/07/2008 - Are we close to finding a way for people with gluten intolerance and celiac disease to safely break down and properly digest wheat gluten and protein? An article recently published in the medical journal Gut describes the results of laboratory experiments in which doctors duplicated a human digestive tract and isolated an enzyme that degrades wheat gluten and protein. Moreover, the results show that the enzyme also eliminated the toxic response to the wheat gluten and protein common in folks with gluten intolerance and celiac disease. According to the researchers, if a full-scale trial confirms the results, people with gluten intolerance and celiac disease might be able to safely stray from their strict gluten-free diets on occasion. The enzyme is prolyl endoprotease isolated from Aspergillus niger and shows the power to quickly and effectively break down gluten peptides and proteins in a simulated human digestive tract. The enzyme has a similar pH level to that of the stomach, and remains intact in the stomach’s strongly acidic conditions. The research team, led by Dr. C. Mitea from Leiden University Medical Center in the Netherlands tested the enzyme in a controlled system built to function in way that is nearly identical with the human gastrointestinal tract. According to the report, the enzyme increased the digestion speed of the glutenins and gliadins that are found in white bread, and which people with gluten intolerance and celiac disease cannot properly break down. After 90 minutes, the gluten proteins treated with the enzyme were undetectable, whereas those glutens not treated with the enzyme, remained in the stomach for at least two hours. The research team obtained similar results when they repeated the test on a fast food meal rather than just white bread alone, and showed that the enzyme treated food samples also eliminated adverse T-cell stimulatory activity that occurred in untreated samples. The tests showed that, in the same amount of time that food normally remains in the stomach, the enzyme brought about the total elimination of T-cell stimulatory peptides of gliadins and glutenins. From the test results, the research team concluded that the enzyme is a solid choice for clinical trials to determine if it can eliminate 100% of gluten toxicity. They also noted that the enzyme is readily available in industrial quantities, and thus easy to tailor into a suitable treatment should trials prove fruitful. Gut, Jan 2008; 57: 25 - 32. Editor's Note: This is not a therapy that is designed to allow celiacs to eat gluten on a daily basis. At best it will allow them to not worry about cross-contamination when eating out.

Celiac.com 12/04/2009 - It’s been ten months since my diagnosis of celiac disease. The foggy thinking is clearing. I remember more and more details of the misery of living a life with gluten poisoning. Can you imagine having leg cramps so severe that when they finally subsided your legs were bruised? That was by far the worst pain I have ever experienced. And I would have those cramps four or five times a week. I was prescribed quinine and it didn’t help a bit, however I did not contract malaria. People would say to me, “You just need to eat bananas. You have a potassium deficiency.” They didn’t know I ate bananas everyday to no avail. The dull pains in my gut I had learned to ignore even though they were constant. The leg cramps that would come in the middle of the night I could not ignore. Other symptoms included extreme fatigue, lightheadedness, vision loss, anemia, and heart papaltations. Throw in depression, panic attacks, and a feeling of impending doom. My blood work was always a frightening revelation. It even scared my doctor and he’s not even me! You know it’s bad when the doctor is reading your lab results and both of his eyebrows arch up to the middle of his forehead. I also had vertigo and balance problems. The weight loss was extreme. Gluten had robbed me of nutrients necessary to live a normal life. I was suffering from malnutrition, although I ate constantly. Life wasn’t really working out like I had hoped. Can you blame me when I say I really hate gluten? I hate gluten as much as I hate Adolph Hitler. It is insidious. All of that pain was caused by that little protein called gluten. It almost killed me. I won’t ever consciously eat gluten again no matter what drugs are developed to neutralize it. I feel like the classic jilted lover when it comes to gluten. I wouldn’t take gluten back for any amount of money. I would take the drugs only to insure myself in case of accidental ingestion when eating out at a restaurant or something to that effect. When I am at the grocery store I will not even walk down the bread aisle. I hate the smell of fresh bread. I really believe everyone would be better off if they went gluten free. However, it’s not going to happen. The best thing about celiac disease is that once you eliminate gluten from your diet you start getting better in a hurry. What an exciting journey these past ten months have been! I have gained 58 pounds. I feel so strong that sometimes when I walk down the street I hope someone will take a swing at me! Unless he’s a professional fighter I don’t think he’ll knock me to the pavement on the first swing. Maybe I exaggerate a bit, but what I am trying to say is that I have a feeling of well-being that I never knew possible. I feel so good I want to shout out to the neighborhood, “I FEEL GOOD!” (cue the James Brown song here) “I KNEW THAT I WOULD NOW!” What is exciting is that some of the research is very optimistic. I recommend reading some of Dr. Ron Hoggan’s articles on the cutting edge discoveries that could possibly neutralize the toxic effects of gluten in celiacs. Larazotide Acetate could be the miracle drug celiacs and other autoimmune sufferers are hoping for. I think you will be hearing a lot more about breakthroughs in the near future. I am so grateful for Dr. Hoggan, Scott Adams, Dr. Peter Green, the research team at the University of Maryland, Dr. Alessio Fasano and many others who are lending their brilliance to this puzzling malady. I marvel at the depth of their knowledge and passion for discovery. Unfortunately, I am not so gifted. I can only thank them and reap the benefits of their work. Reading Recommendations: If you aren’t already familiar with The Journal of Gluten Sensitivity you can subscribe through a link here at Celiac.com. You will find much information and you will be encouraged at the current work being done in this field. I highly recommend the following books for the newly diagnosed celiac: -Celiac Disease and Living Gluten-Free – Jules E. Dowler Shepard (a great personal story honestly told by a smart author, and lots of recipes) -Celiac Disease a Hidden Epidemic – Peter Green. M.D. and Rory Jones (lots of science and answers to your questions here) -The Gluten-Free Diet – A Gluten Free Survival Guide – Elisabeth Hasselbeck (another honest personal testimony and lots of graphs, charts, and recipes) All of the above have done much research and have exhaustive indexes. Well worth the investment.

University of Maryland Center for Celiac Research: Research Update - 1 in 150 Adults Have Celiac Disease (Celiac.com 06/12/2000) Multi-Center Serological Screening Study to determine prevalence of Celiac Disease in the United States. We have tested 8,199 individuals as part of the Multi-Center Serological Study for the prevalence of Celiac Disease in the United States. This number is comprised of the following: 4,162 healthy individuals (1,473 pediatric and 2,689 adult), 3,797 from risk groups (1,008 children with symptoms, 618 adults with symptoms, 1,819 first-degree relatives and 352 second-degree relatives). Our preliminary data indicates that the following number of individuals tested positive for Celiac Disease: General pediatric population 1 out of 163 General adult population 1 out of 150 General population 1 out of 154 Children with symptoms 1 out of 40 Adults with symptoms 1 out of 30 First-degree relatives of celiacs 1 out of 12 Second-degree relatives of celiacs 1 out of 11 For each child with symptoms, four children have celiac disease without symptoms; and For each adult with symptoms, 2 adults have celiac disease without symptoms making Celiac Disease a silent disease. We are extremely encouraged by these preliminary findings; however, many more subjects need to be screened to put the study in full operation. Heres how you can help: Pledge your financial support. This study is almost entirely funded by individual donor contributions. Participate in our blood screening drives. 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 commercially-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

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.

Currently, the Center for Celiac Research is involved in two critical areas: * Multi-Center Serological Screening Study to determine the prevalence of Celiac Disease in the United States; and * New Diagnostic Assay to develop a non-invasive diagnostic test for Celiac Disease. 1) SEROLOGIC SCREENING STUDY We have tested 3,076 samples as part of the Multi-Center Serological Study for the prevalence of Celiac Disease in the United States. Our preliminary findings indicate that 6.8% of first-degree relatives and 4.7% 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. 2) NEW DIAGNOSTIC ASSAY 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 transglutaminase gene. By using this tool, we have developed a new diagnostic tool that may eventually allow us to make a definite diagnosis of Celiac Disease without an intestinal biopsy. BLOOD SCREENING UPDATE Blood screenings of first and second-degree relatives have been conducted in New York, North Carolina, New Hampshire, California, Pennsylvania, Washington, Maryland, Texas, and Rhode Island.Screenings are scheduled for Billings, Montana June 19th, Louisville, Kentucky September, 18th and Vermont (to be scheduled in Oct/Nov.) WEB SITE Thanks to the sponsorship of Dietary Specialties, we are very excited to announce that the Center for Celiac Research will have a web site. The domain name will be www.celiaccenter.org. and should be on line by June 21st. FUND-RAISING UPDATE As of June 1, 1999, the University of Marylands Center for Celiac Research has received approximately $340,000 in contributions and pledges. We thank all of you who have made a contribution or pledge. The Center was very fortunate to receive three significant pledges/contributions over the past four months which helped boost our contribution total by more than $100,000 since our last update. Although this is a significant increase, we must keep the momentum going. 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. NINTH INTERNATIONAL SYMPOSIUM ON CELIAC DISEASE The Center for Celiac Research, the University of Maryland Program for Continuing Education, 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. The symposium will be held August 10-13, 2000 at the Marriotts Hunt Valley Inn, Hunt Valley, Maryland. The medical program to be presented will discuss the most advanced knowledge of the genetic, immunological, and diagnostic aspects of Celiac Disease. In addition, a panel of international experts will discuss new frontiers for the treatment and prevention of Celiac Disease. Celiacs from around the world will be given the opportunity to compare the practical aspects of living with Celiac Disease in different countries and cultures at a full day session. Registration information and costs will be available in August and will be posted on the web site. 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. For example, Tri-County Celiac Sprue from Walled Lake, MI organized a bake sale and the Greater Louisville Celiac Sprue Support Group organized a walk/run event. Both donated the proceeds to the Center. 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 new year.

The University of Marylands Center for Celiac Research has received approximately $231,000 in contributions and pledges. We thank all of you who have made a contribution or pledge. As we reported in the September 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. As of September 1st, we had received only 122 pledges in the amount of $70,335. To date, we have received only 8 additional pledges; however, we did receive a significant number of cash contributions for which we are very grateful. 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. We wanted to advise everyone that due to circumstances beyond our control our voice mail line 410 706-2715 crashed on December 20th. The problem was corrected on January 11th; however, all messages that were left during that time were lost. We apologize for any inconvenience this may have caused.

We have tested 1,579 samples as part of the Multicenter Serological Study for the prevalence of celiac disease in the United States. Our preliminary findings indicate a 5.8% positive finding of first degree relatives and a 3.2% 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. The six (6) regional centers have begun minimal screening of study participants. Now we need the necessary dollars to put the study into full operation. Blood testing, supplies, and shipping charges will increase significantly in direct proportion to the samples processed.