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Found 29 results

  1. Celiac.com 06/18/2018 - Celiac disease has been mainly associated with Caucasian populations in Northern Europe, and their descendants in other countries, but new scientific evidence is beginning to challenge that view. Still, the exact global prevalence of celiac disease remains unknown. To get better data on that issue, a team of researchers recently conducted a comprehensive review and meta-analysis to get a reasonably accurate estimate the global prevalence of celiac disease. The research team included P Singh, A Arora, TA Strand, DA Leffler, C Catassi, PH Green, CP Kelly, V Ahuja, and GK Makharia. They are variously affiliated with the Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Lady Hardinge Medical College, New Delhi, India; Innlandet Hospital Trust, Lillehammer, Norway; Centre for International Health, University of Bergen, Bergen, Norway; Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Gastroenterology Research and Development, Takeda Pharmaceuticals Inc, Cambridge, MA; Department of Pediatrics, Università Politecnica delle Marche, Ancona, Italy; Department of Medicine, Columbia University Medical Center, New York, New York; USA Celiac Disease Center, Columbia University Medical Center, New York, New York; and the Department of Gastroenterology and Human Nutrition, All India Institute of Medical Sciences, New Delhi, India. For their review, the team searched Medline, PubMed, and EMBASE for the keywords ‘celiac disease,’ ‘celiac,’ ‘tissue transglutaminase antibody,’ ‘anti-endomysium antibody,’ ‘endomysial antibody,’ and ‘prevalence’ for studies published from January 1991 through March 2016. The team cross-referenced each article with the words ‘Asia,’ ‘Europe,’ ‘Africa,’ ‘South America,’ ‘North America,’ and ‘Australia.’ They defined celiac diagnosis based on European Society of Pediatric Gastroenterology, Hepatology, and Nutrition guidelines. The team used 96 articles of 3,843 articles in their final analysis. Overall global prevalence of celiac disease was 1.4% in 275,818 individuals, based on positive blood tests for anti-tissue transglutaminase and/or anti-endomysial antibodies. The pooled global prevalence of biopsy-confirmed celiac disease was 0.7% in 138,792 individuals. That means that numerous people with celiac disease potentially remain undiagnosed. Rates of celiac disease were 0.4% in South America, 0.5% in Africa and North America, 0.6% in Asia, and 0.8% in Europe and Oceania; the prevalence was 0.6% in female vs 0.4% males. Celiac disease was significantly more common in children than adults. This systematic review and meta-analysis showed celiac disease to be reported worldwide. Blood test data shows celiac disease rate of 1.4%, while biopsy data shows 0.7%. The prevalence of celiac disease varies with sex, age, and location. This review demonstrates a need for more comprehensive population-based studies of celiac disease in numerous countries. The 1.4% rate indicates that there are 91.2 million people worldwide with celiac disease, and 3.9 million are in the U.S.A. Source: Clin Gastroenterol Hepatol. 2018 Jun;16(6):823-836.e2. doi: 10.1016/j.cgh.2017.06.037.
  2. Celiac.com 08/15/2017 - Some evidence indicates that rates of celiac disease in the general population are increasing over time. Prior to the discovery of gluten's role in celiac disease, the prognosis for celiac sufferers was bleak. Did higher betas of death keep celiac disease rates correspondingly lower? To provide an answer, a team of researchers set out to examine a possible relationship between mortality rates for children under five, and prevalence rates of celiac disease. The research team included Federico Biagi; Alberto Raiteri; Annalisa Schiepatti; Catherine Klersy; and Gino R. Corazza. Their team conducted a review of literature, and found 27 studies done in 17 different countries between 1995 and 2011 describing rates of celiac disease in schoolchildren. Four of the studies were conducted in Italy. Their meta-analysis compared prevalence rates between specific-country under-five mortality groups, publication year and age. In recent decades, mortality rates for under-five year olds have been decreasing all over the world. This reduction is paralleled by rising rates of celiac disease. The Spearman correlation coefficient for these terms was -63%, 95%CI -82% to -33% (p < 0.001). So, the higher the mortality rate, the lower the prevalence of celiac disease. This finding is confirmed by the meta-analysis of the 4 studies conducted in Italy over time. The mortality rate for under five-year-olds seems to influence the rate of celiac disease in the general population. They predict a rise, in the near future, of the number of celiac disease patients, due to better survival rates of celiac children. Source: Journal of Pediatric Gastroenterology & Nutrition: Post Acceptance: July 27, 2017. doi: 10.1097/MPG.0000000000001696
  3. Celiac.com 01/04/2017 - A team of researchers recently set out to investigate the impact of celiac disease diagnosis on anthropometric measures at late adolescence, and to assess trends in the prevalence of diagnosed celiac disease over time. The research team included Amit Assa, Yael Frenkel-Nir, Ya'ara Leibovici-Weissman, Dorit Tzur, Arnon Afek, Lior H Katz, Zohar Levi, and Raanan Shamir. They are variously affiliated with the Institute of Gastroenterology, Nutrition and Liver Disease, Schneider Children's Medical Center, Petach Tikva, Israel, the Sackler Faculty of Medicine, Tel Aviv University, Tel Aviv, Israel, the Medical Corps of the Israel Defense Forces, Ramat-Gan, Israel, the Institute of Gastroenterology, Rabin Medical Center-Beilinson Campus, Petach Tikva, Israel, and with the Ministry of Health in Jerusalem, Israel. Around 17 years of age, most of the Israeli Jewish population undergoes a general health examination, before enlistment in the Defense Forces. Individual medical information, diagnoses, etc., are entered into a structured database. For their population based study, the research team reviewed the enlistment data base for celiac disease cases between the years 1988 and 2015. In all, the team reviewed the medical records of 2,001,353 individuals, focusing on body measurements and physical health at the age of 17 years. Overall, they found and assessed 10,566 cases of celiac disease (0.53%). Multivariable analysis showed that adolescent boys with celiac disease were leaner (Body Mass Index 21.2±3.7 vs 21.7±3.8, p=0.02), while girls with celiac disease were shorter (161.5±6 cm vs 162.1±6 cm, p=0.017) than the general population. The prevalence of diagnosed celiac disease increased from 0.5% to 1.1% in the last 20 years, mainly among females, who saw a rise of 0.64% vs 0.46% for males. Celiac disease rates were far lower in people of lower socioeconomic status, and those of African, Asian and former Soviet Union origin. However, the clinical relevance of the small differences suggests that when celiac disease is diagnosed during childhood, final weight and height are not severely impaired. The team's cohort supports an observed rise in celiac disease diagnoses in the last couple of decades. Source: Arch Dis Child doi:10.1136/archdischild-2016-311376
  4. Inflamm Bowel Dis. 2005 Jul;11(7):662-666. Celiac.com 06/30/2005 – Researchers in Italy have determined that those with Crohns disease also have a high prevalence of celiac disease. Their study evaluated 27 consecutive patients who were diagnosed with Crohns disease—13 were men and 14 were women, with a mean age of 32.3 years. Each patient was screened for celiac disease using antigliadin, antiendomysium, and antitransglutaminase blood antibody tests, and the sorbitol H2 breath test. If either the blood or breath test was positive, the patients were given a small bowel biopsy for final confirmation. The results of the celiac disease screening of the 27 Crohns patients: Positive antigliadin – 8 - 29.63% Positive antiendomysium – 4 - 14.81% Positive antitransglutaminase – 5 - 18.52% Positive sorbitol H2 – 11 - 40.74% Positive biopsy – 5 of 11 - 18.52% Crohns patients studied The researchers conclude that there is a high prevalence of celiac disease in those with Crohns disease, and that all patients who are diagnosed with Crohns disease should begin a gluten-free diet at the time of diagnosis.
  5. Celiac.com 09/09/2013 - Many people with celiac disease show slightly elevated liver enzymes, though these enzyme levels usually return to normal after gluten-free diet. A team of researchers recently set out to investigate the cause and prevalence of altered liver function tests in celiac patients, basally and after 1 year of gluten-free diet. The research team included Giovanni Casella, Elisabetta Antonelli, Camillo Di Bella, Vincenzo Villanacci, Lucia Fanini, Vittorio Baldini, and Gabrio Bassotti. They are affiliated with the Medical Department, and the Clinical Pathology Department of Desio Hospital in Monza and Brianza, Italy, the Department of Clinical and Experimental Medicine, Gastroenterology and Hepatology Section at the University of Perugia in Perugia, Italy, and with the Department of Laboratory Diagnostics, Pathology Section, Brescia, Italy. The team gathered data from 245 untreated celiac disease patients, 196 women and 49 men, ranging in age from 15 to 80 years. They then analyzed the data, and assessed the results of liver function tests performed before and after diet, as well as associated liver pathologies. They found that 43 (17.5%) of the 245 patients, showed elevated levels of one or both aminotransferases; In 41 patients (95%) the elevation was mild, meaning that it was less than five times the upper reference limit. The remaining two patients (5%) showed marked elevation, meaning levels more than ten times the upper reference limit. After patients eliminated gluten for one year, aminotransferase levels normalized in all but four patients, who had HCV infection or primary biliary cirrhosis. Celiac patients who show hypertransaminaseaemia at diagnosis, and who do not show normalization of liver enzymes after 12 months of gluten-free diet, likely suffer from coexisting liver disease. In such cases, the research team recommends further assessment to assess the possible coexisting liver disease. Spotting and treating coexisting liver disease in celiac patients is important for improving liver function and preventing possible complications. Source: Liver International. 2013;33(7):1128-1131.
  6. Celiac.com 03/01/2010 - Common autoimmune disorders often coexist in the same subjects, and to cluster in families. A research team recently set out to quantify the risk of diagnosis of coexisting autoimmune diseases in more than 3000 index cases with clinically proven Graves' disease or Hashimoto's thyroiditis. The research team included Kristien Boelaert, PhD, Paul R. Newbya, Matthew J. Simmonds, PhD, Roger L. Holder, Jacqueline D. Carr-Smith, Joanne M. Heward, PhD, Nilusha Manjia, Amit Allahabadia, MD, Mary Armitage, DM, Krishna V. Chatterjee, PhD, John H. Lazarus, MD, Simon H. Pearce, PhD, Bijay Vaidya, PhD, Stephen C. Gough, PhD, and Jayne A. Franklyn, PhD. To establish the prevalence of coexisting autoimmune disorders, the team conducted a cross-sectional multi-center study of 3286 Caucasian subjects from UK hospital thyroid clinics. 2791 of those had Graves' disease, 495 had Hashimoto's thyroiditis. The team used a comprehensive questionnaire to obtain complete personal and parental history for each subject, including information on common autoimmune disorders, and parental history of hyperthyroidism or hypothyroidism. The frequency of other autoimmune disorders was 9.67% for patients with Graves' disease and 14.3% for those with Hashimoto's thyroiditis index cases (P=.005). Rheumatoid arthritis was the most common coexisting autoimmune disorder, striking 3.15% of patients with Graves' disease, and 4.24% of Hashimoto's thyroiditis cases. However, both conditions carried substantially higher relative risks for nearly all other autoimmune diseases (>10 for pernicious anemia, systemic lupus erythematosus, Addison's disease, celiac disease, and vitiligo). Cases of Graves' disease showed relative “clustering” among index subjects with parental hyperthyroidism, while cases of Hashimoto's thyroiditis showed relative “clustering” among index subjects with parental hypothyroidism. Relative risks for most other coexisting autoimmune disorders were markedly increased among parents of index cases. This study is one of the largest so far to quantify the risk of diagnosis of coexisting autoimmune diseases among more than 3000 index cases with clinically proven Graves' disease or Hashimoto's thyroiditis. These results emphasize the the importance of screening for other autoimmune diagnoses when patients with autoimmune thyroid disease show new or nonspecific symptoms. Source: Am. J. Med. Volume 123, Issue 2, Pages 183.e1-183.e9 (February 2010)
  7. Celiac.com 12/20/2011 - There has been some controversy surrounding the idea that there is a higher prevalence of undiagnosed celiac disease in people with infertility, with some studies finding it but others not. Most of these studies have been performed in Europe; only two to date have taken place in the United States. Peter Green’s group at Columbia recently tried to establish the actual prevalence of undiagnosed celiac disease in the infertile population in the United States, to determine if it would make sense to routinely screen a subgroup of infertile patients for celiac disease. Their results are published in The Journal of Reproductive Medicine. Study participants were recruited from the population who came to Columbia’s Center for Women’s Reproductive Care to deal with their infertility issues, which they had been coping with for at least a year. One hundred eight-eight women, ages 25-39, volunteered to participate in the study. They underwent serological screening for tissue transglutaminase (tTG IgA) and endomysial antibodies (EMA IgA), and measurement of total IgA and both IgA and IgG antigliadin antibodies was done to control for the potential IgA deficiency in some individuals. Four of the 188 patients enrolled in the study were diagnosed with celiac disease, making the prevalence of celiac disease in this population 2.1%. Yet a subgroup analysis of the prevalence of celiac disease in women with unexplained fertility revealed a prevalence of 5.9%, which achieves statistical significance. All four women reported suffering from gastrointestinal symptoms before their diagnosis, and they had a significantly increased prevalence of Irritable Bowel Syndrome as well. The authors admit that this is quite a small sample, and because screening was voluntary, it is also a selected population. But even so, they suggest that physicians should inquire about GI symptoms when patients present with infertility, and that screening for celiac is appropriate in those with unexplained infertility who complain of gastrointestinal distress. They even go so far as to posit that all women with unexplained infertility be screened for celiac, even if they don’t have gastrointestinal trouble. All four women conceived within ten months after starting on a gluten free diet, two naturally and two with help. And all of them went on to deliver healthy babies. Source: Choi JM, Lebwohl B, Wang J, Lee SK, Murray JA, Sauer MV, Green PH. Increased prevalence of celiac disease in patients with unexplained infertility in the United States. J Reprod Med. 2011 May-Jun; 56(5-6):199-203.
  8. Celiac.com 10/12/2011 - According to recent estimates, three million Americans suffer from celiac disease—approximately 1% of the population, and only three percent of them have to this writing been correctly diagnosed. As startling as that sounds to us all, according to a news article on Medscape Today, the incidence of celiac disease has increased markedly over the last three decades, perhaps even as fourfold, and studies are suggesting the incidence may actually be higher than 1% of the population. What is the reason for this? According to Dr. Jonas Ludvigsson, MD, from the Department of Medicine, Epidemiology Unit at the Karolinska Institute and Orebro University Hospital in Sweden, and a renowned celiac expert, there may be many factors explaining this, but there probably is an actual increase underlying these. The Medscape article went on to report that the Mayo Clinic has confirmed increase in celiac disease incidence, reported in Discovery's Edge, the Mayo Clinic's research magazine. Dr. Joseph Murray, MD, and colleagues analyzed stored blood samples from Air Force recruits in the early 1950s for gluten antibodies. It was assumed that 1% would be positive, given today's estimates, but the number of positive results was far smaller. Dr. Murray and his colleagues compared their results with two more recently collected sets with the conclusion that celiac disease is about four times more common today than it was in the 1950s. Additionally, Dr. Ludviggon's research team in Sweden has found that those living with celiac disease and latent celiac disease have higher mortality than those who don't have these conditions. Latent celiac disease is also known as "gluten sensitivity," a term to describe those who have "normal small intestinal mucosa but positive celiac disease serology," estimated to affect 1 in 1000 people. According to Dr. Ludvigsson's research team, in 1 year, 10 of 1000 individuals with celiac disease will die, as compared with 7 in 1000 individuals without the disease. The mortality rate is increased among those who also have latent celiac disease as well. The increased risk, however, is quite small. As alarming as the statistics are regarding the increasing rate of celiac disease, Dr. Ludvigsson shares some good news with Medscape—the methods of diagnosing celiac disease are actually improving. According to some other estimates, the rate of celiac diagnosis rate is increasing. For those who are testing positive for the celiac disease, the only method of treatment currently available is eliminating gluten from the diet. Yes, this is a simple treatment, although it can require some challenging lifestyle adjustments for the gluten-free community, something which I address in my work as an author, researcher, and gluten-free advocate. In the future, we may see other treatments such as gluten-digesting enzymes (which are on the rise) or even the genetic modification of the structure of gluten in wheat so that it will not cause an autoimmune reaction in celiac patients. Even with celiac diagnosis incidence on the rise, with raised awareness and effective diagnosis, we can help change the lives of millions of celiac Americans for the better. This is an important endeavor.
  9. This article originally appeared in the Spring 2011 edition of Celiac.com's Journal of Gluten-Sensitivity. Celiac.com 09/07/2011 - Through the hard work and concerted efforts of many support groups and individuals throughout the US, along with the generosity of Instituto Di Ricerca in Italy, research funding was accumulated. Early in the Twenty-First Century, under the auspices of the Center for Celiac Disease Research, a new epoch in celiac disease awareness was born. Spearheaded by Dr. Alessio Fasano and several other prominent gastroenterologists, a large multi-center study was undertaken and the rate of celiac disease in the general U.S. population was determined to be at least 1 in 133 (1). This pains-taking, thorough, time-consuming and expensive research started a landslide of opinions that shifted the medical paradigm on the prevalence of celiac disease in the US, and caused ripples in medical thinking throughout the world. Celiac disease quickly became known as a very common ailment that is partly driven by a genetic predisposition, and is now thought to afflict about one percent of Americans. This increase in recognized prevalence is largely the result of studies that are conducted by testing blood from healthy blood donors to determine these numbers (more on this shortly). Yet a recent article from the medical literature asserts that current reports of the prevalence of celiac disease are over-estimating the actual portion of the population that is afflicted by this ailment. This article, published in the Annals of Medicine and Expert Opinion in December of 2010, offers its own estimate the prevalence of celiac disease at about 1 in 160 (2). What are we to believe? Is the rate of celiac disease really overestimated by many of the experts conducting research in this area? Or is there some other explanation? There are actually several reasons that Biagi and colleagues have arrived at their reduced estimate of prevalence, and there is good cause to reject their claim in favor of the data indicating a prevalence of celiac disease that is close to 1% of American and other populations where gluten grains form a major part of the diet. The biases expressed by Biagi et al combine in this report to form what is probably the most glaring cause of their aberrant finding. These biases show up, both in their computations and in several emotion laden statements that appear in their report. There are also some indications to suggest that the statistical methods they employed are not appropriate for the data presented, especially when publishing an account that relies so heavily on statistical tools. For instance, they have failed to include some of the published data that fit within their inclusion criteria and would have significantly altered their results. There are also several confounding variables that were either overlooked or that warranted more attention than they were given by Biagi et al. Finally, despite their acknowledgement of some of the weaknesses in the process by which they arrived at their estimate, they have chosen to impugn the work of other researchers who have reported a higher frequency of celiac disease rather than entertain the possibility that it is their own analyses and paradigm that are problematic. Even their choice of research method, the systematic review, is suspect, as it offers more opportunities for inclusion of the very errors they have made. Systematic reviews provide estimates based on averages of published research findings drawn from groups of studies of similar structure and design. The intent of this approach is to dampen the effects of extreme results, providing a more widely applicable and a more generally accurate perspective, eliminating variations driven by geographic location, accessibility of health care, research biases, etc. This is a useful tool that can be very helpful to busy clinicians by providing summaries that explain and clarify variations in findings as well as identifying mitigating factors in extreme findings. When done properly, these reviews reduce bias and other confounding factors, ultimately enhancing evidence-based optimal health care (3). However, Biagi and colleagues have fallen short of these ideals (2). They twice refer to their feelings in this report. Such expressions of the authors’ personal feelings reflect biases and preconceived notions that should not form any part of a scientific report. Yet they repeatedly do so. They go on to offer a rather snide parenthetic comment suggesting abuses of tissue transglutaminase testing. Such remarks demonstrate strong personal biases that interfere with the provision of objective information. Since bias reduction is an important, stated objective of the systematic review, this report by Biagi and colleagues should have been rejected by those who reviewed it. Biagi and colleagues do acknowledge that published research results vary so widely that they can not use the superior statistical method called a meta-analysis. (This is a method that can be especially useful with respect to celiac disease because when groups of research subjects are small, meta-analyses can be used to combine the findings from many small groups and provide more meaningful information.) The authors of the paper in question explain their choice of systematic review, yet this approach requires an exhaustive exploration of the relevant literature (3) which should have reached further than the small set of search terms they used. In the interests of accuracy, it is important to find most or all of the relevant literature. Their limited search methods may explain why they missed several important studies, including the investigation of 989 Saharawi children by Catassi et al (4). Such studies would have altered their findings substantially which they side-step in a letter defending their original paper, published in the subsequent issue of the same journal (5). For instance, Catassi et al found a 5.6% prevalence of celiac disease among the sub-Saharan African children investigated (4). That is five and one half times as frequent as the prevalence figure that they have impugned. Surely they needed to at least acknowledge the existence of this report. They neither included it nor acknowledged it. In their letter of defence they assert that diagnoses were made on the basis of blood tests, not intestinal biopsies. However, many of the studies they did include in their data also offered diagnoses on the basis of blood tests in the absence of intestinal biopsies (5). Biagi et al also assert over-estimation due to inclusion of “patients already known to be affected by celiac disease” (celiac disease). But how could their approach lead to an accurate tally of the percentage of all persons in a given population who have celiac disease? There appears to be some confusion about the meaning of the term “prevalence”. For instance, if a test group of 10,000 is identified and all participants are tested for celiac disease, yet several of them were previously diagnosed with celiac disease, Biagi and colleagues expect these previously diagnosed celiac patients to be excluded. Most of those who were previously diagnosed would test negative because they are now eating a gluten free diet. According to the Biagi paper, we should either exclude these people from our test group, or identify them as not having celiac disease. Either alternative is likely to produce much less accurate results than including them in the group that has celiac disease. (This approach alone would produce the faulty results they report in any population where there is reasonable access to modern health care.) Prevalence, after all, is a statement of the number of cases of a particular disease in a particular population. Excluding cases that were previously identified just doesn’t make any sense. Further, since IgA deficiency forms almost 2% of some populations (6) and the prevalence of celiac disease in IgA deficiency, in the same population is reported at 14% (4), such a significant confounding variable warrants attention. Yet Biagi et al do not even mention it. Let me explain. If total IgA was not measured in some, most, or all of the studies reviewed by Biagi et al, then IgA deficiency should reduce the reported prevalence by about 14%. That difference alone would bridge most of the gap between the 1:133 and 1:160 prevalence findings. But serology (blood testing) misses more than just IgA deficiency (7). This significant portion of the reports reviewed should therefore be expected to significantly under-estimate the prevalence of celiac disease. This is because, in these studies, case finding is often done with serological testing. Thus, these researchers will often fail to detect, and they will therefore have failed to biopsy, significant numbers of cases of seronegative celiac disease, both because of those excluded as blood donors due to their anaemia and/or malnourished condition and because of those who are seronegative, whether due to IgA deficiency or other reasons. If any of the studies Biagi and colleagues reviewed used symptoms and signs for case finding, this is yet another source of underestimation, one that is probably the cause of current under-diagnosis of celiac disease that is estimated at above 95%. These authors point out that “anaemia or insufficient body weight are universally recognized as criteria that preclude enrolment as blood donors.” Since more than one quarter (13/41) of the studies they reviewed report rates based on case finding through the screening of healthy blood donors, the results of these studies must underestimate prevalence regardless of the authors’ feelings on the topic. Yet it is their feelings they harken to on this issue: “We feel that we did not find this difference because of the wide heterogeneity of the published papers which hampered a specific analysis focusing on this point.” I don’t much care what they feel. I want to know what evidence they can report. If they are interested in communicating about their feelings, there are many appropriate venues for such exchanges, but the medical research literature seems, at best, a very questionable choice. Much of the evidence they offered in support of their assertions that researchers are over-estimating celiac disease could more accurately be seen as inducing under-estimations of this common ailment. Finally, are the researchers who authored 41 separate reports failing so miserably at the diagnostic process that they miss the mark on a majority of marginal cases of celiac disease? This is the thrust of the Biagi et al statement: “Again, patients with minimal intestinal lesions and/or negative coeliac antibodies were always considered to be affected by celiac disease. Although these patients certainly exist, in our clinical experience they are very rare and most of the time they are not affected by celiac disease but are the result of diagnostic mistakes.“(2) In short, Biagi and colleagues claim to be so superior to the world leaders in celiac research that Biagi et al’s clinical experience is somehow more valid and accurate than the peer-reviewed, reported findings of most others working in this field (5). The proposition that the majority of celiac researchers are over-estimating the prevalence of celiac disease ignores variations due to IgA deficiency, seronegativity (negative blood tests), and ignores the variability of intestinal damage as shown by the Marsh system and other approaches for evaluating intestinal histology and/or diagnosing celiac disease without intestinal biopsies (8, 9, 10, 11, 12). Further, while many investigators have reported that potential or latent celiac disease often shows a similar constellation of signs and symptoms to those seen in celiac disease, Bertini et al have recently demonstrated that many cases of potential celiac disease show the same signatures of metabolic disturbances, both in the bloodstream and in urinary excretions, as those found in celiac disease (12). Such disturbances, whether in the context of celiac disease or potential celiac disease, normalize on a gluten free diet (13). In all, the Biagi et al article reflects the authors’ biases, serious limitations in the authors’ applications of the relevant statistical tools, and calls into question the quality of the process in this instance. Sources: Fasano A, Berti I, Gerarduzzi T, Not T, Colletti RB, Drago S, Elitsur Y, Green PH, Guandalini S, Hill ID, Pietzak M, Ventura A, Thorpe M, Kryszak D, Fornaroli F, Wasserman SS, Murray JA, Horvath K. Prevalence of celiac disease in at-risk and not-at-risk groups in the United States: a large multicenter study. Arch Intern Med. 2003 Feb 10;163(3):286-92 Biagi F, Klersy C, Balduzzi D, Corazza GR. Are we not over-estimating the prevalence of coeliac disease in the general population? Ann Med. 2010 Dec;42(8):557-61. Epub 2010 Oct 1. Cook DJ, Mulrow celiac disease, Haynes RB.Systematic reviews: synthesis of best evidence for clinical decisions. Ann Intern Med. 1997 Mar 1;126(5):376-80. Catassi C, Rätsch IM, Gandolfi L, Pratesi R, Fabiani E, El Asmar R, Frijia M, Bearzi I, Vizzoni L. Why is coeliac disease endemic in the people of the Sahara? Lancet. 1999 Aug 21;354(9179):647-8. Hoggan, R. Comment on: Are we not over-estimating the prevalence of celiac disease in the general population? Annals of Medicine and Expert Opinion, 2011, 43: 164-65 Bahari A, Karimi M, Sanei-Moghaddam I, Firouzi F, Hashemi M. Prevalence of celiac disease among blood donors in Sistan and Balouchestan Province, Southeastern Iran. Arch Iran Med. 2010 Jul;13(4):301-5. Sugai E, Hwang HJ, Vázquez H, Smecuol E, Niveloni S, Mazure R, Mauriño E, Aeschlimann P, Binder W, Aeschlimann D, Bai JC. New serology assays can detect gluten sensitivity among enteropathy patients seronegative for anti-tissue transglutaminase. Clin Chem. 2010 Apr;56(4):661-5. Epub 2009 Dec 18. Kurppa K, Ashorn M, Iltanen S, Koskinen LL, Saavalainen P, Koskinen O, Mäki M, Kaukinen K. Celiac disease without villous atrophy in children: a prospective study. J Pediatr. 2010 Sep;157(3):373-80, 380 Salmi TT, Collin P, Reunala T, Mäki M, Kaukinen K. Diagnostic methods beyond conventional histology in coeliac disease diagnosis. Dig Liver Dis. 2010 Jan;42(1):28-32. Kaukinen K, Collin P, Mäki M.Latent coeliac disease or coeliac disease beyond villous atrophy? Gut. 2007 Oct;56(10):1339-40. Troncone R, Auricchio R, Granata V. Issues related to gluten-free diet in coeliac disease. Curr Opin Clin Nutr Metab Care. 2008 May;11(3):329-33. Bertini I, Calabrò A, De Carli V, Luchinat C, Nepi S, Porfirio B, Renzi D, Saccenti E, Tenori L. The metabonomic signature of celiac disease. J Proteome Res. 2009 Jan;8(1):170-7. Bernini P, Bertini I, Calabro A, la Marca G, Lami G, Luchinat C, Renzi D, Tenori L. Are Patients with Potential Celiac Disease Really Potential? The Answer of Metabonomics. J Proteome Res. 2010 Dec.
  10. Celiac.com 08/19/2011 - According to recent estimates, 3 million Americans suffer from celiac disease - approximately 1% of the population, and only three percent of them have to this writing been correctly diagnosed. As startling as that sounds to us all, according to a news article on Medscape Today, the incidence of celiac disease has increased markedly over the last three decades, perhaps even as fourfold, and studies are suggesting the incidence may actually be higher than 1% of the population. What is the reason for this? According to Dr. Jonas Ludvigsson, MD, from the Department of Medicine, Epidemiology Unit at the Karolinska Institute and Orebro University Hospital in Sweden, and a renowned celiac expert, there may be many factors explaining this, but there probably is an actual increase underlying these. The Medscape article went on to report that the Mayo Clinic has confirmed increase in celiac disease incidence, reported in Discovery's Edge, the Mayo Clinic's research magazine. Dr. Joseph Murray, MD, and colleagues analyzed stored blood samples from Air Force recruits in the early 1950s for gluten antibodies. It was assumed that 1% would be positive, given today's estimates, but the number of positive results was far smaller. Dr. Murray and his colleagues compared their results with two more recently collected sets with the conclusion that celiac disease is about four times more common today than it was in the 1950's. Additionally, Dr. Ludviggon's research team in Sweden has found that those living with celiac disease and latent celiac disease have higher mortality than those who don't have these conditions. Latent celiac disease is also known as "gluten sensitivity," a term to describe those who have "normal small intestinal mucosa but positive celiac disease serology," estimated to affect 1 in 1000 people. According to Dr. Ludvigsson's research team, in 1 year, 10 of 1000 individuals with celiac disease will die, as compared with 7 in 1000 individuals without the disease. The mortality rate is increased among those who also have latent celiac disease as well. The increased risk, however, is quite small. As alarming as the statistics are regarding the increasing rate of celiac disease, Dr. Ludvigsson shares some good news with Medscape—the methods of diagnosing celiac disease are actually improving. According to some other estimates, the rate of celiac diagnosis rate is increasing. For those who are testing positive for the celiac disease, the only method of treatment currently available is eliminating gluten from the diet. Yes, this is a simple treatment, although it can require some challenging lifestyle adjustments for the gluten-free community, something which I address in my work as an author, researcher, and gluten-free advocate. In the future, we may see other treatments such as gluten-digesting enzymes (which are on the rise) or even the genetic modification of the structure of gluten in wheat so that it will not cause an autoimmune reaction in celiac patients. Even with celiac diagnosis incidence on the rise, with raised awareness and effective diagnosis, we can help change the lives of millions of celiac Americans for the better. This is an important endeavor.
  11. This article originally appeared in the Spring 2011 edition of Celiac.com's Journal of Gluten-Sensitivity. Celiac.com 09/07/2011 - Through the hard work and concerted efforts of many support groups and individuals throughout the US, along with the generosity of Instituto Di Ricerca in Italy, research funding was accumulated. Early in the Twenty-First Century, under the auspices of the Center for Celiac Disease Research, a new epoch in celiac disease awareness was born. Spearheaded by Dr. Alessio Fasano and several other prominent gastroenterologists, a large multi-center study was undertaken and the rate of celiac disease in the general U.S. population was determined to be at least 1 in 133 (1). This pains-taking, thorough, time-consuming and expensive research started a landslide of opinions that shifted the medical paradigm on the prevalence of celiac disease in the US, and caused ripples in medical thinking throughout the world. Celiac disease quickly became known as a very common ailment that is partly driven by a genetic predisposition, and is now thought to afflict about one percent of Americans. This increase in recognized prevalence is largely the result of studies that are conducted by testing blood from healthy blood donors to determine these numbers (more on this shortly). Yet a recent article from the medical literature asserts that current reports of the prevalence of celiac disease are over-estimating the actual portion of the population that is afflicted by this ailment. This article, published in the Annals of Medicine and Expert Opinion in December of 2010, offers its own estimate the prevalence of celiac disease at about 1 in 160 (2). What are we to believe? Is the rate of celiac disease really overestimated by many of the experts conducting research in this area? Or is there some other explanation? There are actually several reasons that Biagi and colleagues have arrived at their reduced estimate of prevalence, and there is good cause to reject their claim in favor of the data indicating a prevalence of celiac disease that is close to 1% of American and other populations where gluten grains form a major part of the diet. The biases expressed by Biagi et al combine in this report to form what is probably the most glaring cause of their aberrant finding. These biases show up, both in their computations and in several emotion laden statements that appear in their report. There are also some indications to suggest that the statistical methods they employed are not appropriate for the data presented, especially when publishing an account that relies so heavily on statistical tools. For instance, they have failed to include some of the published data that fit within their inclusion criteria and would have significantly altered their results. There are also several confounding variables that were either overlooked or that warranted more attention than they were given by Biagi et al. Finally, despite their acknowledgement of some of the weaknesses in the process by which they arrived at their estimate, they have chosen to impugn the work of other researchers who have reported a higher frequency of celiac disease rather than entertain the possibility that it is their own analyses and paradigm that are problematic. Even their choice of research method, the systematic review, is suspect, as it offers more opportunities for inclusion of the very errors they have made. Systematic reviews provide estimates based on averages of published research findings drawn from groups of studies of similar structure and design. The intent of this approach is to dampen the effects of extreme results, providing a more widely applicable and a more generally accurate perspective, eliminating variations driven by geographic location, accessibility of health care, research biases, etc. This is a useful tool that can be very helpful to busy clinicians by providing summaries that explain and clarify variations in findings as well as identifying mitigating factors in extreme findings. When done properly, these reviews reduce bias and other confounding factors, ultimately enhancing evidence-based optimal health care (3). However, Biagi and colleagues have fallen short of these ideals (2). They twice refer to their feelings in this report. Such expressions of the authors’ personal feelings reflect biases and preconceived notions that should not form any part of a scientific report. Yet they repeatedly do so. They go on to offer a rather snide parenthetic comment suggesting abuses of tissue transglutaminase testing. Such remarks demonstrate strong personal biases that interfere with the provision of objective information. Since bias reduction is an important, stated objective of the systematic review, this report by Biagi and colleagues should have been rejected by those who reviewed it. Biagi and colleagues do acknowledge that published research results vary so widely that they can not use the superior statistical method called a meta-analysis. (This is a method that can be especially useful with respect to celiac disease because when groups of research subjects are small, meta-analyses can be used to combine the findings from many small groups and provide more meaningful information.) The authors of the paper in question explain their choice of systematic review, yet this approach requires an exhaustive exploration of the relevant literature (3) which should have reached further than the small set of search terms they used. In the interests of accuracy, it is important to find most or all of the relevant literature. Their limited search methods may explain why they missed several important studies, including the investigation of 989 Saharawi children by Catassi et al (4). Such studies would have altered their findings substantially which they side-step in a letter defending their original paper, published in the subsequent issue of the same journal (5). For instance, Catassi et al found a 5.6% prevalence of celiac disease among the sub-Saharan African children investigated (4). That is five and one half times as frequent as the prevalence figure that they have impugned. Surely they needed to at least acknowledge the existence of this report. They neither included it nor acknowledged it. In their letter of defence they assert that diagnoses were made on the basis of blood tests, not intestinal biopsies. However, many of the studies they did include in their data also offered diagnoses on the basis of blood tests in the absence of intestinal biopsies (5). Biagi et al also assert over-estimation due to inclusion of “patients already known to be affected by celiac disease” (celiac disease). But how could their approach lead to an accurate tally of the percentage of all persons in a given population who have celiac disease? There appears to be some confusion about the meaning of the term “prevalence”. For instance, if a test group of 10,000 is identified and all participants are tested for celiac disease, yet several of them were previously diagnosed with celiac disease, Biagi and colleagues expect these previously diagnosed celiac patients to be excluded. Most of those who were previously diagnosed would test negative because they are now eating a gluten free diet. According to the Biagi paper, we should either exclude these people from our test group, or identify them as not having celiac disease. Either alternative is likely to produce much less accurate results than including them in the group that has celiac disease. (This approach alone would produce the faulty results they report in any population where there is reasonable access to modern health care.) Prevalence, after all, is a statement of the number of cases of a particular disease in a particular population. Excluding cases that were previously identified just doesn’t make any sense. Further, since IgA deficiency forms almost 2% of some populations (6) and the prevalence of celiac disease in IgA deficiency, in the same population is reported at 14% (4), such a significant confounding variable warrants attention. Yet Biagi et al do not even mention it. Let me explain. If total IgA was not measured in some, most, or all of the studies reviewed by Biagi et al, then IgA deficiency should reduce the reported prevalence by about 14%. That difference alone would bridge most of the gap between the 1:133 and 1:160 prevalence findings. But serology (blood testing) misses more than just IgA deficiency (7). This significant portion of the reports reviewed should therefore be expected to significantly under-estimate the prevalence of celiac disease. This is because, in these studies, case finding is often done with serological testing. Thus, these researchers will often fail to detect, and they will therefore have failed to biopsy, significant numbers of cases of seronegative celiac disease, both because of those excluded as blood donors due to their anaemia and/or malnourished condition and because of those who are seronegative, whether due to IgA deficiency or other reasons. If any of the studies Biagi and colleagues reviewed used symptoms and signs for case finding, this is yet another source of underestimation, one that is probably the cause of current under-diagnosis of celiac disease that is estimated at above 95%. These authors point out that “anaemia or insufficient body weight are universally recognized as criteria that preclude enrolment as blood donors.” Since more than one quarter (13/41) of the studies they reviewed report rates based on case finding through the screening of healthy blood donors, the results of these studies must underestimate prevalence regardless of the authors’ feelings on the topic. Yet it is their feelings they harken to on this issue: “We feel that we did not find this difference because of the wide heterogeneity of the published papers which hampered a specific analysis focusing on this point.” I don’t much care what they feel. I want to know what evidence they can report. If they are interested in communicating about their feelings, there are many appropriate venues for such exchanges, but the medical research literature seems, at best, a very questionable choice. Much of the evidence they offered in support of their assertions that researchers are over-estimating celiac disease could more accurately be seen as inducing under-estimations of this common ailment. Finally, are the researchers who authored 41 separate reports failing so miserably at the diagnostic process that they miss the mark on a majority of marginal cases of celiac disease? This is the thrust of the Biagi et al statement: “Again, patients with minimal intestinal lesions and/or negative coeliac antibodies were always considered to be affected by celiac disease. Although these patients certainly exist, in our clinical experience they are very rare and most of the time they are not affected by celiac disease but are the result of diagnostic mistakes.“(2) In short, Biagi and colleagues claim to be so superior to the world leaders in celiac research that Biagi et al’s clinical experience is somehow more valid and accurate than the peer-reviewed, reported findings of most others working in this field (5). The proposition that the majority of celiac researchers are over-estimating the prevalence of celiac disease ignores variations due to IgA deficiency, seronegativity (negative blood tests), and ignores the variability of intestinal damage as shown by the Marsh system and other approaches for evaluating intestinal histology and/or diagnosing celiac disease without intestinal biopsies (8, 9, 10, 11, 12). Further, while many investigators have reported that potential or latent celiac disease often shows a similar constellation of signs and symptoms to those seen in celiac disease, Bertini et al have recently demonstrated that many cases of potential celiac disease show the same signatures of metabolic disturbances, both in the bloodstream and in urinary excretions, as those found in celiac disease (12). Such disturbances, whether in the context of celiac disease or potential celiac disease, normalize on a gluten free diet (13). In all, the Biagi et al article reflects the authors’ biases, serious limitations in the authors’ applications of the relevant statistical tools, and calls into question the quality of the process in this instance. Sources: Fasano A, Berti I, Gerarduzzi T, Not T, Colletti RB, Drago S, Elitsur Y, Green PH, Guandalini S, Hill ID, Pietzak M, Ventura A, Thorpe M, Kryszak D, Fornaroli F, Wasserman SS, Murray JA, Horvath K. Prevalence of celiac disease in at-risk and not-at-risk groups in the United States: a large multicenter study. Arch Intern Med. 2003 Feb 10;163(3):286-92 Biagi F, Klersy C, Balduzzi D, Corazza GR. Are we not over-estimating the prevalence of coeliac disease in the general population? Ann Med. 2010 Dec;42(8):557-61. Epub 2010 Oct 1. Cook DJ, Mulrow celiac disease, Haynes RB.Systematic reviews: synthesis of best evidence for clinical decisions. Ann Intern Med. 1997 Mar 1;126(5):376-80. Catassi C, Rätsch IM, Gandolfi L, Pratesi R, Fabiani E, El Asmar R, Frijia M, Bearzi I, Vizzoni L. Why is coeliac disease endemic in the people of the Sahara? Lancet. 1999 Aug 21;354(9179):647-8. Hoggan, R. Comment on: Are we not over-estimating the prevalence of celiac disease in the general population? Annals of Medicine and Expert Opinion, 2011, 43: 164-65 Bahari A, Karimi M, Sanei-Moghaddam I, Firouzi F, Hashemi M. Prevalence of celiac disease among blood donors in Sistan and Balouchestan Province, Southeastern Iran. Arch Iran Med. 2010 Jul;13(4):301-5. Sugai E, Hwang HJ, Vázquez H, Smecuol E, Niveloni S, Mazure R, Mauriño E, Aeschlimann P, Binder W, Aeschlimann D, Bai JC. New serology assays can detect gluten sensitivity among enteropathy patients seronegative for anti-tissue transglutaminase. Clin Chem. 2010 Apr;56(4):661-5. Epub 2009 Dec 18. Kurppa K, Ashorn M, Iltanen S, Koskinen LL, Saavalainen P, Koskinen O, Mäki M, Kaukinen K. Celiac disease without villous atrophy in children: a prospective study. J Pediatr. 2010 Sep;157(3):373-80, 380 Salmi TT, Collin P, Reunala T, Mäki M, Kaukinen K. Diagnostic methods beyond conventional histology in coeliac disease diagnosis. Dig Liver Dis. 2010 Jan;42(1):28-32. Kaukinen K, Collin P, Mäki M.Latent coeliac disease or coeliac disease beyond villous atrophy? Gut. 2007 Oct;56(10):1339-40. Troncone R, Auricchio R, Granata V. Issues related to gluten-free diet in coeliac disease. Curr Opin Clin Nutr Metab Care. 2008 May;11(3):329-33. Bertini I, Calabrò A, De Carli V, Luchinat C, Nepi S, Porfirio B, Renzi D, Saccenti E, Tenori L. The metabonomic signature of celiac disease. J Proteome Res. 2009 Jan;8(1):170-7. Bernini P, Bertini I, Calabro A, la Marca G, Lami G, Luchinat C, Renzi D, Tenori L. Are Patients with Potential Celiac Disease Really Potential? The Answer of Metabonomics. J Proteome Res. 2010 Dec.
  12. Celiac.com 05/06/2011 - Recent epidemiological studies show that the prevalence of Celiac disease had been underestimated, affecting not only Europeans, but also populations of the Mediterranean countries, such as Middle East (1-4) and North Africa (5-7), where its prevalence is similar to that of Western countries. A international team of researchers recently set out to estimate the global burden related to undiagnosed Celiac Disease in the Mediterranean Area, as computed by morbidity, mortality and crude health cost. The team included Luigi Greco, Laura Timpone, Carmela Arcidiaco, Abkari Abdelhak, Attard Thomas, Barada Kassem, Bilbao Josè Ramon, Boudraa Ghazalia, Cullufi Paskal, Hugot Jean Pierre, Abu-Zekry Mona, Kuloglu Zarife, Roma Eleftheria, Shamir Raanan, Ter Terzic Selma, and Zrinjka MiÅ¡ak. Prevalence of celiac disease among low risk populations varies from 0.14% to 1.17% (15-17): 1%-1.3% in Turkey (18.19), 0.6%-0.96% in Iran (20-21), 0.5% in Egypt (22), 0.6% in Tunisia and Israel (23-24), <0.5% in Jordan, Lebanon, and Kuwait (1.10,16.25). Among high risk groups (patients with positive family history, insulin dependent diabetes mellitus, thyroiditis, etc.) the prevalence of celiac disease ranges from 2.4% to 44% assessed by serological markers and biopsy (26-27). The team discovered a celiac disease prevalence of 1%, an incidence, based on new Cases/year estimated on 1% of the live births of 1 in 7 symptomatic adults, and 1 in 5 children. Their results showed standardized mortality rate of 1.8 compared to age and sex matched population. They found that the delay between symptoms and diagnosis was six years for adults, and two years for children. The team found associated conditions in 10% of the total cohort (KB 30%: Turkey 2% Iran 33% , IDDM 10% (6.7-18.5%). Sixteen percent of symptomatic patients showed celiac disease-related complications. The team found the following non GI Symptoms among symptomatic patients: short stature 25% Anemia 40% (20-80%) Osteopenia 30% (30-50%), abnormal liver function 10% (Turkey 38%, Iran 25%). In the Northern Africa Region and in the Middle East very high incidence of celiac disease has recently been reported both in the general population and in at risk-group. These high frequencies are due to the wide consumption of wheat and barley and to the high frequency of the DR3-DQ2 celiac disease predisposing haplotypes in these population (13,14). Source: http://www.medicel.unina.it/00_materiali/materiali_evento_napoli/the_burden.pdf
  13. This article originally appeared in the Summer 2002 edition of Celiac.coms Scott-Free newsletter. On June 2, 2002, hundreds of researchers traveled from all over the world to Paris, France, in order to hear the latest scientific reports on celiac disease research and to present results from their own investigations. Over the course of three days, scientists presented dozens of reports, and displayed over a hundred posters covering all aspects of celiac disease, from laboratory research on the microbiologic aspects of the disease, to quality of life issues in patients who are on the gluten-free diet. There were so many exciting reports presented at the conference, and the following describes the research findings from these new reports concerning the screening and clinical presentation of celiac disease, osteoporosis and osteopathy and neurological conditions. SCREENING ISSUES IN CELIAC DISEASE In order to understand how best to screen populations for celiac disease, it is important to know how celiac disease affects a portion of the population, and how it compares to similar populations in other countries. Mayo Clinic Retrospective Study Dr. Joseph Murray from the Mayo Clinic conducted a retrospective study on the population of people living in Olmsted County, Minnesota. This county has kept medical records on all of its residents for over 100 years. Dr. Murray looked at the medical records to determine which residents were diagnosed with celiac disease from 1950 to 2001. He found 82 cases of celiac disease, with 58 in females and 24 in males. The average age of diagnosis was 45. Pediatric diagnoses of celiac disease during this time period were extremely rare. Dr. Murray found that while the diagnosis rate of dermatitis herpetiformis (DH) remained constant over the 51 year period, the diagnosis rate of celiac disease increased from 0.8 to 9.4 per 100,000 people. He also noted that over time, adults with celiac disease were less likely to present diarrhea and weight loss as symptoms. Encouragingly, he determined that the average life expectancy for a diagnosed celiac in this community was no less than that of the normal population, despite the fact that celiac disease was often diagnosed later in life. What does this mean? The celiac disease diagnosis rate in this county is much lower than the actual incidence rates that have been reported in other studies; however, that rate has greatly increased over the past 51 years. It is also noteworthy that so few children were diagnosed with celiac disease. The analysis highlights interesting and useful information about the presentation of celiac disease in adults, and about the potential life expectancy for people with celiac disease who are diagnosed later in life. United States and Europe Compared Dr. Carlo Catassi of Ancona, Italy is currently a visiting researcher at the University of Maryland Celiac Research Center. He presented an analysis of the similarities and differences between the clinical presentations of celiac disease in the United States and Europe. Dr. Catassi established that the prevalence of celiac disease in the U.S. and Europe are the same and range between 0.5 to 1.0 percent of the general population. The prevalence in at-risk populations is much higher, ranging between 5 and 10 percent, and the prevalence in people with Type 1 Diabetes is approximately 5 percent in both the U.S. and Europe. He found that the typical (symptomatic) cases of celiac disease were less common in the U.S., and that the latent (asymptomatic) cases were much more common. Dr. Catassi stated that these differences could be due to genetic factors (for example, there are more Asians in the United States than in Europe), but are more likely due to environmental factors. He noted that infants born in the U.S. are often breastfed longer than their European counterparts. There is also a lower gluten intake in the first months of life for infants in the U.S. The timing of the introduction of cereals could help explain why many American children have somewhat milder symptoms and a more unusual presentation of the disease. What does this mean? Dr. Catassis analysis underscores the need to better educate physicians in the U.S. so that they learn to see typically atypical signs of celiac disease in children and adults. He also reinforced the importance of breastfeeding as a protective factor for children with a genetic predisposition to celiac disease, which could also improve the outlook for European children in the future. United States Prevalence Research Dr. Alessio Fasano presented a poster which outlined his recent findings that are a follow-up to his now famous 1996 blood screening study. The original study found that 1 in 250 Americans had celiac disease. It was performed using anti-gliadin antibodies (AGA), and when a blood sample tested AGA positive it was confirmed using anti-endomysial (EMA) antibody testing. Now that human tissue transglutaminase (tTG) testing is available, Dr. Fasano and his colleagues wanted to see if the results of their original study would be different using the tTG test. He and his colleagues tested the negative samples in the original study, and found 10 more positives using the tTG test. Two of these samples were confirmed positive when checked using the AGA antibody test. Dr. Fasano concluded that the original (1996) prevalence estimate of 1 in 250 understated the true prevalence rate, which could actually be greater than 1 in 200 Americans. Dr. Michelle Pietzak, a pediatric gastroenterologist at the University of California at Los Angeles, also presented a poster which described the prevalence of celiac disease in Southern California. In a study of 1,094 participants, Dr. Pietzak found that 8% of Hispanics tested positive for celiac disease. The most common symptoms presented by subjects in her study included abdominal pain, diarrhea, constipation, joint pain and chronic fatigue. What does this mean? It is important to understand that the foundation of all U.S. prevalence research on celiac disease began with the blood donor study performed by Dr. Fasano in 1996. His newly revised findings, which have been supported by at least one other major study, show that the prevalence of celiac disease in the U.S. population is much higher than originally believed, and that it could be greater than 1 in 200 people. Additionally, the California study is one of the first to establish a celiac disease prevalence figure for the Hispanic population in the U.S., and if the 8 percent figure is supported by further research it would indicate that celiac disease significantly affects Hispanic Americans. OSTEOPOROSIS AND OSTEOPATHY Dr. Julio Bai of Argentina presented important information on a condition that affects many people with celiac disease, and one that is often overlooked by physicians—osteoporosis or osteopathy (its milder form). Both children and adults with celiac disease can have low bone mineral density, and its method of treatment can have important consequences. Dr. Bai treats adults with bone loss, and has studied the nature of fractures and bone health in adults with celiac disease. In a case-control study of 78 celiac disease patients, Dr. Bai found that symptomatic patients were more likely to experience bone fractures than the normal population. Interestingly, he also found that patients with latent (asymptomatic) celiac disease had lower fracture rates than those with symptoms, and that the rate was equal to that of the normal population. None of the patients, however, experienced a fracture of the more serious type—in the hip, spine or shoulder, and the fractures tended to occur in their arms, legs, hands and feet. The doctor also discussed preliminary evidence which showed that most women with osteopathy and celiac disease who go on a gluten free diet will experience an improvement in bone density, while many men do not. There was, however, no difference found between the fracture rates of men and women. Dr. Bai also found that nutritional and metabolic deficiencies in patients with celiac disease and osteopathy might also contribute to fractures by weakening the muscles that surround essential bones. He added that immunological factors could also enhance or inhibit bone rebuilding, and that there is a bone-specific tissue transglutaminase (tTG) that plays a role in this process. What does this mean? It was certainly good news to hear that most people with low bone density due to celiac disease can reverse the damaging process, and if celiac-related fractures do occur they tend to be of the less serious type. Additionally, it was interesting to learn just how important a role muscle health plays in preventing celiac-related fractures. Osteopathy in Children Dr. Mora, an Italian researcher, presented data on osteopathy in children with celiac disease. His results indicate that a gluten-free diet can improve bone mass, and the effect is maintained even after 10 years. He also added that a gluten-free diet improved the overall bone metabolism of the children, and that the diet alone could cure their osteopathy. Osteopenia and Osteoporosis: Conditions Related to Celiac Disease In a chart prepared by Dr. David Sanders of the United Kingdom, data on 674 patients, 243 with osteoporosis and 431 with osteopenia, were presented. He found 10 cases of celiac disease among a mostly female population that had an average age of 53. In all ten cases, patients either had a history of iron-deficient anemia or gastrointestinal symptoms. He concluded that all patients with osteopenia or osteoporosis and a history of anemia or gastrointestinal symptoms should be screened for celiac disease. What does this mean? Dr. Sanders has identified a subset of people with osteoporosis and osteopenia that should be screened for celiac disease—those who have been anemic or have gastrointestinal symptoms. This helps physicians know when to refer patients for celiac disease screening. NEUROLOGICAL SYMPTOMS Dr. Marios Hadjivassiliou of the United Kingdom presented data on neurological symptoms and gluten sensitivity. In an eight-year study, Dr. Hadjivassiliou screened people who had neurological symptoms of unknown origin using the anti-gliadin antibody (AGA) test. He found that 57 percent of these patients had antibodies present in their blood, compared to 12 percent of healthy controls or 5 percent of patients with a neurological condition of known origin. From this group, he studied 158 patients with gluten sensitivity and neurological conditions of unknown origin (only 33 percent of these patients had any gastrointestinal symptoms). The most common neurological conditions in this group were ataxia, peripheral neuropathies, myopathy, and encephalopathy (very severe headache). Less common were stiff person syndrome, myelopathy and neuromyotonia. He noted that ataxia is not a result of vitamin deficiencies, but is instead an immune-mediated condition. Patients with ataxia have unique antibodies that are not found in patients with celiac disease. Dr. Hadjivassiliou felt that up to 30 percent of idiopathic neuropathies could be gluten-related, and that there is preliminary evidence which indicates that a gluten-free diet is helpful in cases of neuropathy and ataxia. What does this mean? It is interesting to note that Dr. Hadjivassiliou has studied gluten sensitivity and not celiac disease. The test used in this study is not specific enough to identify people who were likely to have celiac disease. However, his finding that the gluten-free diet may be helpful in people with certain types of neuropathy and ataxia opens the door for further research on these conditions in people with celiac disease.
  14. Celiac.com 03/28/2011 - While rates of diagnosed celiac disease are less than 1 in 2,000 in the United States, screening studies in European and other populations have shown a much higher prevalence. A team of researchers recently set out to assess rates of celiac disease and the benefits of screening in the general adult population in certain geographically isolated areas. The research team included Kent D. Katz MD, Shahrooz Rashtak MD, Brian D. Lahr BS, MS, L. Joseph Melton III MD, Patricia K. Krause BS, MBA, Kristine Maggi PA-C, Nicholas J. Talley MD, PhD, and Joseph A. Murray MD. They are affiliated variously with the Wyoming Medical Center in Casper, Wyoming, the Department of Dermatology, the Division of Gastroenterology and Hepatology of the Department of Internal Medicine, the Division of Biostatistics, and the Division of Epidemiology in the Department of Health Sciences Research at the Mayo Clinic in Rochester, Minnesota. The team measured serum tissue transglutaminase antibodies (tTG-IgA) in adult volunteers at the annual Casper, Wyoming, Blue Envelope Health Fair blood draw. The team then checked endomysial IgA antibodies in those with positive tTG-IgA results. For those who tested positive for both screens, the team offered endoscopy with small bowel biopsy. All participants completed a short gastrointestinal (GI) symptom questionnaire. The team did blood tests on a total of 3,850 subjects, 34 of whom tested positive for both tTG and endomysial antibody (EMA) IgA. The team excluded three individuals who had been previously diagnosed with celiac disease, leaving 31 subjects, and making the total positive celiac serology in this community sample 0.8%. The team offered small bowel biopsy to those 31 subjects. They performed a total of 18 biopsies, with 17 patients (94%) showing at least partial villous atrophy. Symptoms reported by test subjects did not predict positive diagnosis. In fact, most subjects showed no symptoms, or else showed atypical symptoms. Serologic testing readily detects celiac disease in a general population. Screening results showed that undiagnosed celiac disease affects 1 in 126 individuals in this Wyoming community. Source: Am J Gastroenterol advance online publication 1 March 2011. doi: 10.1038/ajg.2011.21
  15. AUTHORS: Cuoco L; Certo M; Jorizzo RA; De Vitis I; Tursi A; Papa A; De Marinis L; Fedeli P; Fedeli G; Gasbarrini G AUTHOR AFFILIATION: Department of Internal Medicine, Catholic University S.C., Rome, Italy. SOURCE: Ital J Gastroenterol Hepatol 1999 May;31(4):283-7 [MEDLINE record in process] CITATION IDS: PMID: 10425571 UI: 99354303 ABSTRACT: BACKGROUND AND AIMS - Celiac disease is associated with several autoimmune disorders such as insulin-dependent diabetes, Sjogrens syndrome, Addisons disease and thyroid diseases. The aim of our study was to evaluate the prevalence of celiac disease in patients affected by autoimmune thyroid diseases by means of anti-gliadin and anti-endomysial antibodies. PATIENTS: We studied 92 patients affected by autoimmune thyroid diseases (47 chronic autoimmune thyroiditis, 22 Hashimotos thyroiditis and 23 Graves disease). Ninety patients with non autoimmune thyroid disorders (51 multifollicular goitre, 28 solitary nodule and 11 papillary carcinoma) and 236 blood donors also took part in the study as control groups. METHODS: Total serum IgA were measured in all subjects to exclude selective IgA deficiency; then we measured anti-gliadin antibodies and anti-endomysial antibodies. In patients with anti-gliadin/anti-endomysial antibody positivity and/or with haematinic and laboratory signs of malabsorption we carried out gastrointestinal endoscopy with duodenal histological examination. RESULTS: Among the 92 patients with autoimmune thyroid disease, 4 (4.3%) showed anti-gliadin and anti-endomysial positivity and had celiac disease; among the 90 patients with non autoimmune thyroid diseases, 1 (1.1%) had celiac disease; finally, among the blood donors, 1 subject (0.4%) was anti-gliadin-anti-endomysium antibody positive and had celiac disease. Those subjects presenting with only anti-gliadin antibody positivity did not have celiac disease. CONCLUSIONS: These results show that the prevalence of celiac disease in patients with autoimmune thyroid diseases is significantly increased when compared with the general population (p = 0.009) but not with patients affected by non autoimmune thyroid disorders (p = 0.18). We suggest a serological screening for celiac disease in all patients with autoimmune thyroid disease measuring anti-endomysial antibodies, considering that early detection and treatment of celiac disease are effective in preventing its complications.
  16. Celiac.com 06/08/2007 - This study shows that celiac disease is as common among British Columbians with Type 1 diabetes as it is in Europeans with Type 1 Diabetes. The research team was made up of doctors P.M. Gillett, H.R. Gillett, D.M. Israel, D.L. Metzger, L. Stewart, J-P. Chanoine, H.J. Freeman. The team looked at 233 children with Type1 diabetes. In a blind study, the children were screened for celiac disease using immunoglublin A endomysium antibody (EmA), and the Immunoglublin A tissue transglutaminase. Children with positive results were offered small bowel biopsies. For those confirmed with celiac disease, doctors recommended a gluten-free diet. British Columbians with Type 1 Diabetes Get Celiac Disease at Rates Comparable to their European Counterparts Nineteen children tested positive for EmA and showed elevated tTG levels. Of the 18 patients who agreed to biopsies, one was normal, three showed normal morphology with elevated Intraepithelial lymphocyte counts, and 14 biopsies showed morphological changes consistent with celiac disease. 9 of the 19 children who tested positive for EmA were asymptomatic. Seven patients showed only mildly elevated tTG levels. Of this second group, five refused biopsy and two showed normal biopsies. In addition to the four known cases, the doctors uncovered at least 14 new cases of celiac disease. The total rate of biopsy confirmed celiac disease was 18 out of 233, or 7.7%. The doctors concluded that these results confirm that celiac disease is prevalent in pediatric type 1 diabetes. The doctors say the study reinforces the importance of celiac screening for children with type 1 diabetes, and also the advisability of keeping an eye on tTg serology as part of determining the effects of and compliance to a gluten-free diet. Participating Facilities 1. Division of Pediatric Gastroenterology at British Columbias Childrens Hospital Vancouver, British Columbia. 2. Division of Endocrinology, British Columbias Childrens Hospital, Vancouver, British Columbia. 3. Division of Gastroenterology, University of British Columbia, Vancouver, British Columbia Journal of Pediatric Gastroenterology & Nutrition: Volume 29(4)October 1999p 495. About the Author: Jefferson Adams is a freelance health writer who lives in San Francisco and is a frequent author of articles for Celiac.com.
  17. Psychosomatics 45:325-335, August 2004 Celiac.com 07/30/2004 - Past studies have reported a higher prevalence of depressive symptoms in adults with celiac disease, perhaps due to serotonergic dysfunction, and an increased prevalence of depressive and disruptive behavioral disorders in adolescence with the disease, especially before treatment. In an effort to further study any possible connections, researchers looked at 29 adolescents with celiac disease and 29 matched controls. The researchers used semi-structured psychiatric interviews and symptom measurement scales to examine all subjects. Their findings indicate that the subjects with celiac disease had significantly higher prevalence of major depressive disorder compared to the controls--31% versus 7%, and a significantly higher prevalence of disruptive behavior disorders--28% versus 3%. The researchers also found that most of the mental disorders occurred before the patients were diagnosed and treated with a gluten-free diet. The prevalence of current mental disorders was similar in both of the groups studied.
  18. Celiac.com 2/13/2003 - According to a recently published large-scale multi-year and multi-center study, 1 in 133, or a total of 2,131,019 Americans have celiac disease. Alessio Fasano, MD, et. al., and colleagues screened 13,145 subjects using serum antigliadin antibodies and anti–endomysial antibodies (EMA). Those who had positive EMA results were screened again for human tissue transglutaminase IgA antibodies and celiac disease-associated human leukocyte antigen DQ2/DQ8 haplotypes, and when possible, intestinal biopsies were also given. Additionally, for those with biopsy-proven celiac disease, 4,508 first-degree relatives and 1,275 second-degree relatives were also screened for the disease. A total of 3,236 symptomatic patients and 4,126 not-at-risk individuals were screened. The study determined the following: Group Prevalence First degree relatives 1 in 22 Second-degree relatives 1 in 39 Symptomatic patients 1 in 56 Not-at-risk individuals (overall prevalence) 1 in 133 These results are much higher than previous studies have found, and they indicate that celiac disease is perhaps the most common genetic disorder in the United States, as well as one of the most poorly diagnosed diseases. February 10, 2003 edition of Archives of Internal Medicine
  19. Digestion 2002;66(3):178-85 PMID: 12481164 Ciacci C, Cirillo M, Cavallaro R, Mazzacca G. Department of Internal Medicine, Gastrointestinal Unit, Federico II University of Naples, Naples, Italy. Celiac.com 01/12/2003 - Background and Aims: Celiac disease is the most common severe food intolerance in the Western world and is due to gluten ingestion in genetically susceptible children and adults. Intestinal biopsy is the golden standard for evaluation of mucosal damage associated with celiac disease. Gluten-free diet is the key treatment for celiac disease. Data on the long-term control of celiac disease are few and limited to small series of patients. The study reports data on the control of celiac disease and on its correlates in a large cohort of celiac adults during long-term treatment with gluten-free diet. Methods: The study cohort comprises 91 men and 299 women having undergone treatment with a gluten-free diet for at least 2 years and with complete records for visits at the time of diagnosis of celiac disease (baseline). Data collection included gender, age, education, weight, bowel habit, blood hemoglobin, plasma albumin and cholesterol, serum antiendomysium antibodies (EMA), dietary compliance to gluten-free diet (coded as good, low, or very low), and intestinal damage at biopsy (coded as absent, mild, or severe). Results: The duration of follow-up was 6.9 +/- 7.5 years (mean +/- SD, range 2-22 years). At follow-up visit, intestinal damage was absent in 170 patients (43.6%), mild in 127 (32.6%), and severe in 93 (23.8%). At follow-up, intestinal damage was significantly associated with dietary compliance, EMA, and plasma albumin (follow-up value and change value from baseline to follow-up). Baseline education significantly predicted dietary compliance and intestinal damage at follow-up. Conclusions: Celiac disease is often poorly controlled in the majority of patients on long-term treatment with a gluten-free diet as demonstrated by intestinal biopsy. Lack of adherence to strict gluten-free diet is the main reason of poorly controlled disease in adults. Laboratory and clinical information have a high positive predictive value and low negative predictive value for intestinal damage on long-term treatment. Dietary compliance as assessed by interview is the best marker of celiac disease control due to low cost, noninvasivity, and strong correlation with intestinal damage. Copyright 2002 S. Karger AG, Basel
  20. 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
  21. 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.
  22. 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.
  23. 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.
  24. 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.
  25. 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.