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Found 91 results

  1. Arch Intern Med. 2003;163:1566-1572. Ulrike Peters, PhD, MPH; Johan Askling, MD; Gloria Gridley, MS; Anders Ekbom, MD, PhD; Martha Linet, MD Celiac.com 07/30/2003 - The following abstract paints a fairly bleak picture for those of us with celiac disease; however, after taking a closer look at it I believe that it has some serious limitations that should not be overlooked, and have likely produced skewed or irrelevant results. For example, the study does not indicate whether or not the patients in it followed a strict gluten-free diet. Other studies have shown that the mortality risk for celiacs decreases to that of the normal population when a gluten-free diet is followed for at least five years, and that it is also affected by how soon the diagnosis is made and how soon treatment begins. It is well known that not following a gluten-free diet will increase a celiacs risk of death by many causes to many times that of the normal population, which is precisely why it is so important to include such information in studies of this type. In my opinion doing a study like this and not including such data is like doing a study on diabetes where perhaps half or more people in the study do not take insulin but ought to, and then publishing the ultra-high mortality rate that would be its outcome: "Conclusion: Diabetics have a 20-fold mortality rate over the normal population." The conclusion would clearly not be true for those who took their insulin. Additionally the time period that is covered by this study, 1964-1993, could be considered the dark ages of celiac disease, even in Europe (we actually may be just entering the Renaissance age for celiac disease here in the USA, but this could be argued!). Many doctors during this time did not stress enough to their patients the importance of following a strict gluten-free diet, just as many still do not even do this day. My doctor didnt. He just diagnosed me and said I shouldnt eat gluten (as opposed to telling me that it could kill me if I kept eating it), and he didnt even explain to me HOW to avoid it! Is it possible that some of the folks in this study, diagnosed as far back as 1964, might have had similar experiences with their doctors? I would be willing to bet that at least 50% of the people in this study (if not more) were not following a strict gluten-free diet, or were not following the diet at all. If this is true, it is kind of like studying a group of diabetics whose only treatment was to be told by their doctors that they should avoid sugar, which seems absurd if you think about it. Last, the study has considerable bias in that it recruited only hospitalized celiacs, presumably because they were already significantly ill, and those who never made it into a hospital were excluded. It reports findings of auto-immune diseases and small bowel/lymphomaexcesses--these are already well known--but what other researchers may disagree with is the scale of the excess--SMR is always a very crude method ofexpressing this in such studies. - Scott Adams (special thanks to Dr. Geoff Helliwell for his comments on this study) Abstract: "Background: Patients with celiac disease have an increased risk of death from gastrointestinal malignancies and lymphomas, but little is known about mortality from other causes and few studies have assessed long-term outcomes." "Methods: Nationwide data on 10,032 Swedish patients hospitalized from January 1, 1964, through December 31, 1993, with celiac disease and surviving at least 12 months were linked with the national mortality register. Mortality risks were computed as standardized mortality ratios (SMRs), comparing mortality rates of patients with celiac disease with rates in the general Swedish population." "Results: A total of 828 patients with celiac disease died during the follow-up period (1965-1994). For all causes of death combined, mortality risks were significantly elevated: 2.0-fold (95% confidence interval [CI], 1.8-2.1) among all patients with celiac disease and 1.4-fold (95% CI, 1.2-1.6) among patients with celiac disease with no other discharge diagnoses at initial hospitalization. The overall SMR did not differ by sex or calendar year of initial hospitalization, whereas mortality risk in patients hospitalized with celiac disease before the age of 2 years was significantly lower by 60% (95% CI, 0.2-0.8) compared with the same age group of the general population. Mortality risks were elevated for a wide array of diseases, including non-Hodgkin lymphoma (SMR, 11.4), cancer of the small intestine (SMR, 17.3), autoimmune diseases (including rheumatoid arthritis [sMR, 7.3] and diffuse diseases of connective tissue [sMR, 17.0]), allergic disorders (such as asthma [sMR, 2.8]), inflammatory bowel diseases (including ulcerative colitis and Crohns disease [sMR, 70.9]), diabetes mellitus (SMR, 3.0), disorders of immune deficiency (SMR, 20.9), tuberculosis (SMR, 5.9), pneumonia (SMR, 2.9), and nephritis (SMR, 5.4)." "Conclusion: The elevated mortality risk for all causes of death combined reflected, for the most part, disorders characterized by immune dysfunction."
  2. 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
  3. George Von Hilsheimer, 1977 (Celiac.com 06/12/2000) A way the hypothalamic choreographer might be deranged is by malabsorption syndrome. If this suggestion is valid it directly leads to some simple therapeutic guidelines and implications for inexpensive and productive research - I suggest that malabsorption syndrome is a whole complex of metabolic disorders which interact with psychosocial stress, infection, allergies and endocrine disorders. Malabsorption is a stressor in itself... ...Malabsorption is associated with high levels of circulating adrenocortocotrophic hormone (ACTH) and with high levels of acetylcholine (ACh). ACTH and ACh are in turn associated with modes of learning which are characterized by poor habituation (the animals do not learn or unlearn well), by high levels of avoidance, by efficient escape conditioning, by neophobia and by poor instrumental conditioning. The experimental evidence suggests that children with malabsorption will often be similar in their electrophysiological and conditioning patterns to animals with lesions to the hypothalamus and to the hippocampus. (Di SantAgnese & Jones, 1962.)... ...Many authors have remarked on the similarity of the symptoms of sprue and celiac disease to schizophrenia (Dohan, 1969). Abnormal levels of hydrochloric acid in the stomach are associated with hysteria and neurosis (Hepler, 1970). The classic celiac syndrome is said to occur in about one case in every two thousand patients seen by pediatricians, and there is a similar frequency of nontropical sprue in adults. However, one authority (Hodgkin, 1973) reported seeing only one case of celiac disease and no sprue in ten years on a British National Health Service with 2500 patients. My own experience is that many physicians are reluctant to diagnose celiac disease and that the variability of its frequency as a diagnosis may be even greater than that among expert clinicians diagnosing diabetes from laboratory results (viz. from 2 to 76%. Jarrett & Keen (1976)... ...Consequences of Malabsorption: The ecology of the gut would be poor; Imbalances in blood chemistries and developmental anomalies would indicate neonatal and fetal nutritional inadequacy; The adrenal glands would be depleted; The immune system would be over reactive... ...Evidence for Malnutrition in Middle Class Delinquents Summarizing the preliminary reports reviewed above and looking at my delinquents in their light suggest that compared to other children: Delinquents are more often products of unfortunate pregnancies; They suffer more pregnancy and birth complications; They are seldom breast fed; They have more colic and other early indications of GI distress and food intolerance; They are often victims of celiac syndrome and other inborn errors of metabolism; They are early addicted to diets high in sugar and refined carbohydrates; They have poor absorption of food deficient intestinal flora, and slow transit times for food products moving through their guts; They have thiamin, pyridoxine and pantothenic acid deficiencies as neonates. These facts suggest that delinquents are at high risk for unusual CNS development, CNS damage, poor continuing synthesis of CNS amino acids and neural transmitters, and are extremely vulnerable to derangements of the immune and allergy systems... ...Criminal, felon (schizophrenics), and chronic patients had the greatest evidence of malabsorption syndrome of all the subjects, who generally evidenced malabsorption. Felon (schizophrenic) had lower hair Cu than (schizophrenic) patients who were not actively delinquent...
  4. Scand J Gastroenterol 1999 Feb;34(2):163-9 PMID: 10192194, UI: 99206412 Authors: Kaukinen K, Collin P, Holm K, Rantala I, Vuolteenaho N, Reunala T, Maki M Dept. of Medicine, Tampere University Hospital, Finland. (Celiac.com 05/14/2000) SPECIAL NOTE: European Codex Alimentarius quality wheat starch was used in this study. BACKGROUND: We investigated whether wheat starch-based gluten-free products are safe in the treatment of gluten intolerance. METHODS: The study involved 41 children and adults with coeliac disease and 11 adults with dermatitis herpetiformis adhering to a gluten-free diet for 8 years on average. Thirty-five newly diagnosed coeliac patients at diagnosis and 6 to 24 months after the start of a gluten-free diet and 27 non-coeliac patients with dyspepsia were investigated for comparison. Daily dietary gluten and wheat starch intake were calculated. Small bowel mucosal villous architecture, celiac disease3+, alphabeta+, and gammadelta+ intraepithelial lymphocytes, mucosal HLA-DR expression, and serum endomysial, reticulin, and gliadin antibodies were investigated. RESULTS: Forty of 52 long-term-treated patients adhered to a strict wheat starch-based diet and 6 to a strict naturally gluten-free diet; 6 patients had dietary lapses. In the 46 patients on a strict diet the villous architecture, enterocyte height, and density of alphabeta+ intraepithelial lymphocytes were similar to those in non-coeliac subjects and better than in short-term-treated coeliac patients. The density of gammadelta(+)cells was higher, but they seemed to decrease over time with the gluten-free diet. Wheat starch-based gluten-free flour products did not cause aberrant upregulation of mucosal HLA-DR. The mucosal integrity was not dependent on the daily intake of wheat starch in all patients on a strict diet, whereas two of the six patients with dietary lapses had villous atrophy and positive serology. CONCLUSION: Wheat starch-based gluten-free flour products were not harmful in the treatment of coeliac disease and dermatitis herpetiformis.
  5. Scand J Gastroenterol 1999 Feb;34(2):163-9 PMID: 10192194, UI: 99206412 Authors: Kaukinen K, Collin P, Holm K, Rantala I, Vuolteenaho N, Reunala T, Maki M Dept. of Medicine, Tampere University Hospital, Finland. (Celiac.com 05/14/2000) SPECIAL NOTE: European Codex Alimentarius quality wheat starch was used in this study. BACKGROUND: We investigated whether wheat starch-based gluten-free products are safe in the treatment of gluten intolerance. METHODS: The study involved 41 children and adults with coeliac disease and 11 adults with dermatitis herpetiformis adhering to a gluten-free diet for 8 years on average. Thirty-five newly diagnosed coeliac patients at diagnosis and 6 to 24 months after the start of a gluten-free diet and 27 non-coeliac patients with dyspepsia were investigated for comparison. Daily dietary gluten and wheat starch intake were calculated. Small bowel mucosal villous architecture, CD3+, alphabeta+, and gammadelta+ intraepithelial lymphocytes, mucosal HLA-DR expression, and serum endomysial, reticulin, and gliadin antibodies were investigated. RESULTS: Forty of 52 long-term-treated patients adhered to a strict wheat starch-based diet and 6 to a strict naturally gluten-free diet; 6 patients had dietary lapses. In the 46 patients on a strict diet the villous architecture, enterocyte height, and density of alphabeta+ intraepithelial lymphocytes were similar to those in non-coeliac subjects and better than in short-term-treated coeliac patients. The density of gammadelta(+)cells was higher, but they seemed to decrease over time with the gluten-free diet. Wheat starch-based gluten-free flour products did not cause aberrant up-regulation of mucosal HLA-DR. The mucosal integrity was not dependent on the daily intake of wheat starch in all patients on a strict diet, whereas two of the six patients with dietary lapses had villous atrophy and positive serology. CONCLUSION: Wheat starch-based gluten-free flour products were not harmful in the treatment of coeliac disease and dermatitis herpetiformis.
  6. Columbia Genome Center at Columbia University College of Physicians and Surgeons, New York, NY: The Center is looking for families who have more than one member affected with Celiac Disease, to participate in a genetic research study. Information about the study is included below. All inquiries should be made to the Genetic Coordinator, Michele Pallai, at (203) 438-3582 or email: pallai@ibm.net. The Columbia Genome Center is sponsoring a research program at the Columbia University College of Physicians and Surgeons to identify the gene responsible for Celiac Disease. Professor of Genetics and Development, T. Conrad Gilliam, renowned for mapping the genes responsible for Wilson disease and spinal muscular atrophy, is leading the investigation. In addition to his own research staff, Professor Gilliam has access to all of the resources of the Columbia Genome Center for ancillary support of this project. Role of Families with Celiac Disease: The key to this type of study is the participation of families in which there are at least two family members affected with Celiac Disease. Participation of unaffected, as well as affected members may be needed. Those individuals who consent to participate will be asked to provide a sample of blood (20cc) for DNA analysis and give permission for release of their diagnostic records for review by Dr. Peter Green, Clinical Professor of Medicine. Blood collection can be done through a physicians office or a blood drawing laboratory. Participants will be provided with a blood drawing kit. The project will cover the costs of drawing the sample and its shipment. Guidance will be provided by the Genetic Coordinator, Michele Pallai. Who can participate in the study? Anyone representing a family with two family members affected with Celiac Disease can participate. Why should I participate? The involvement of multiple families will best enable the identification of the genetic cause of Celiac Disease. It is anticipated that this identification will lead to earlier diagnosis and effective treatment. What will I have to do? You will need to donate a sample of blood and release your diagnostic records. Any incurred costs will be reimbursed. All interested individuals should contact the Genetic Coordinator, Michele Pallai, at (203) 438-3582 or email: pallai@ibm.net.
  7. 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.
  8. 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.
  9. 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.
  10. 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.
  11. 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.
  12. Copyright by Michael Jones, Bill Elkus, Jim Lyles, and Lisa Lewis 1995, 1996 - All rights reserved worldwide. Memo to the Celiac Community From: Annette Bentley, NJ Phyllis Brogden, PA Sue Eliot, WA Bill Elkus, CA Sue Goldstein, NY Bette Hagman, WA Joanne Hameister, NY Caroline Harlow, DC Marge Johannemann, KY Mike Jones, FL Cynthia Kupper, WA Sandra Leonard, OH Bob Levy, MD Jim Lyles, MI Mary Neville, PA R. Jean Powell, MT Carolyn Randall, OH Ellen Switkes, CA How can Celiacs in the U.S. get the necessary attention of the medical, business and governmental communities we so desperately seek? A few short years ago many European countries were experiencing the same frustrations. Today, things are dramatically better. Most have Gluten-Free products readily available; doctors are knowledgeably looking for Celiac Disease in patients; school children are being tested for celiac disease when they first enroll in school; McDonalds sells Gluten-free Big-Macs. What made the difference was a series of serological screening studies. They concluded, beyond a reasonable medical doubt, that 1 of every 300 in the general population is a Celiac. These tests showed that there was a lucrative market in Celiac Disease; and money speaks. Since celiac disease is genetic, those of us in the U.S. of European descent should test to the same ratio. This means that there could be more than a half-million Celiacs in the United States. The technology used by the Europeans to do these studies is even more reliable today. Dr. Alessio Fasano and Dr. Karoly Horvath, University of Maryland School of Medicine (UMSOM), conducted a small scale serological study in the U.S. several months ago. This study showed approximately the same results as those in Europe. UMSOM has established the Center For Celiac Research, with Drs. Fasano and Horvath, Medical Directors. They have set-up a design for a comprehensive study, in cooperation with several medical centers throughout the U.S., to establish the prevalence rate of celiac disease in this country. The main ingredient missing to implement this three (3) year, $600,000 study is money. Grant monies from federal, state or local governments are just not readily available, primarily due to the lack of interest in a rare disease such as Celiac. This is why we are putting forth this letter of support. Now is the time to put our money and whatever other resources we may have on the line. Now we can do something to make things better for ourselves, our children and those Celiacs of the future. We need your commitment to help fund this momentous undertaking. If we pledge and contribute what we are able, we can make it happen. For example: One-thousand (1000) of us contributing only $600 - $200 per year, for three (3) years, will fund the study. Saturday, May 10, 1997, 1:00 PM at the University Of Maryland - College Park Campus, in the School Of Business Building, Room 1203, will be the kick-off of this once-in-a-lifetime opportunity to make a real difference. Some of our speakers will be Dr. Michael N. Marsh, Manchester, England, Dr. Alessio Fasano, Dr. Karoly Horvath, and other doctors prominent in the study and treatment of Celiac Disease. A detailed program will be posted in about a week. Whether you are able to attend or not, PLEASE SHOW YOUR COMMITMENT by filling out the attached pledge form and return as indicated. We also need for you to assist us in getting the word out to those who are not on the Internet. Please copy and distribute this letter to members of your local group. As the new century nears, wouldnt it be great to be on the verge of a new era of Celiac recognition and lifestyle that we helped to make happen? FOR RESERVATIONS; or more information contact: Kirk Gardner Telephone 410-328-4400 Fax 410-328-6817 E-mail: kgardner@umms001.ab.umd.edu Internet: http://www.celiaccenter.org/
  13. Gut. 2004 May;53(5):649-654 A multi-center Swedish study involving eight separate pediatric clinics looked at 116 children with newly diagnosed celiac disease. The group was randomized into two groups, and one group was given a standard gluten-free diet, while the other was given a standard gluten-free diet that also included oats. The study period was one year, small bowel biopsies were performed at the beginning and end of the study, and serum IgA antigliadin, antiendomysium, and antitissue transglutaminase antibodies were monitored at 0, 3, 6, and 12 months. The median intake of oats for the oat-eating group was 15g per day. By the end of the study all patients were in clinical remission for celiac disease. Neither group differed significantly from one another with regard to serology markers or small bowel mucosal architecture (including numbers of intraepithelial lymphocytes). Out of the original 116 children 93 finished the study, and significantly more younger patients withdrew from it than older patients. The researchers conclude: "This is the first randomized double blind study showing that the addition of moderate amounts of oats to a gluten-free diet does not prevent clinical or small bowel mucosal healing, or humoral immunological downregulation in coeliac children. This is in accordance with the findings of studies in adult coeliacs and indicates that oats, added to the otherwise gluten-free diet, can be accepted and tolerated by the majority of children with celiac disease."
  14. A study on body mass has been done by Dr. William Dickey WilDickey@aol.com, which was recently published in the British Medical Journal. Dickey W, Bodkin S. - Prospective Study of Body Mass Index in Patients with Coeliac Disease, British Medical Journal 1998: 317: 1290 (November 7 issue). Summary: Body mass index (BMI) was calculated in 50 newly diagnosed adult coeliac patients. Only 11 (22%) were underweight (BMI
  15. The abstract below will be published in the April, 1996 issue of Gastroenterology. It was accepted for poster presentation for the Annual meeting of the American Gastroenterological Association. The poster section will be on May 22, 1996 (12-2:30 PM) in Hall D, at the Moscone Center, San Francisco, CA. ENDOMYSIUM ANTIBODIES IN BLOOD DONORS PREDICTS A HIGH PREVALENCE OF CELIAC DISEASE IN THE USA. T. Not, K. Horvath, *I.D. Hill, A. Fasano, A. Hammed, +G. Magazz=F9. Division of Pediatric Gastroenterology & Nutrition,= University of Maryland School of Medicine, *The Bowman Gray School of Medicine, Winston-Salem, & The University of Messina, Italy. Several epidemiological studies in Europe using antigliadin (AGA) and endomysium antibodies (EmA) for initial screening report the prevalence of celiac disease (celiac disease) to be about 1 out of 300 in the general population. The EmA is most reliable for screening with greater than 99% positive predictive-value in subsequent biopsy-proven cases. There are no comparable scientific data for the USA yet, and celiac disease is considered rare in this country. Lack of awareness could result in significant under-diagnosis of celiac disease in the USA. Aim: To determine the prevalence of positive serological tests for celiac disease in healthy blood donors in USA. Methods: Sera from 2000 healthy blood donors were screened for IgG and IgA AGA using ELISA test. All those with elevated AGA levels (IgA >18 units or IgG >25 units) and those with high normal levels (IgA 10-18 units or IgG 15-25 units) were tested for EmA by indirect immunofluorescence using both monkey esophagus (ME) and human umbilical cord (HUC). Results: The mean age of blood donors was 39 years, with 52% being men, 87% being Caucasian, 11.5% African American, and 1.5% Asian. 95 (4.75%) of the subjects had elevated AGA levels (IgG and/or IgA). A total of 44 (2.2%) had an elevated IgA AGA. Of these, 7 were also positive for EmA. No patient with only raised levels of IgG AGA was positive for EmA. Of the subjects with high normal AGA levels, one (IgA 12 units, IgG 1.8 units) was positive for EmA. Among the total of 8 subjects with elevated EmA levels, seven were Caucasian and one was African American. There was a 100% correlation between ME and HUC for positivity (8 samples) and negativity (288 samples). Conclusions: The prevalence of elevated EmA levels in healthy blood donors in USA is 1:250 (8/2000). This is similar to that reported from countries in Europe where subsequent small intestinal biopsies have confirmed celiac disease in all those with EmA positivity. Based on a positive predictive value of >99% for celiac disease in patients with elevated EmA levels, it is likely that the 8 blood donors identified in this study have celiac disease. These data suggest that celiac disease is not rare in the USA and may be greatly under-diagnosed. There is need for a large scale epidemiological study to determine the precise prevalence of the disease in the USA.
  16. Colin, et al, published a follow-up study to the Catassi (Ceeliac Disease in the Year 2000: Exploring the Iceberg - University of Ancona, Italy) in the Scandinavian Journal of Gastroenterology - 28(7):595-8, 1993, which demonstrated that approximately one third of the patients from the Catassi Study who had raised antibodies but no villous atrophy, did have villous atrophy when tested two years later. These results raise the amount of diagnosed celiacs from the Catassi, et al study to over 1 in 200.
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