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Celiac Sprue Research Foundation 2003 Report
Chaitan Khosla, Ph.D. posted an article in Winter 2004 Issue
Celiac.com 11/22/2021 - The year 2003 was one filled with considerable accomplishments for the Celiac Sprue Research Foundation. In January the Foundation opened its research laboratory in Sunnyvale, California with the primary goal of developing a pill that may make it safe for celiacs to eat gluten. Under the scientific direction of Gary Gray, M.D., researchers Qing Li, Ph.D., Thomas Marti, Ph.D. and Gail Pyle, M.D. have begun evaluating whether certain enzymes called prolyl endopeptidases (PEPs) can counter the toxic effects of gluten. This is a highly complex undertaking involving a combination of scientific creativity, hard work, careful planning and collaboration. As a result of the extraordinary efforts of these scientists, the Foundation is currently engaged in a pivotal clinical trial in adult celiac volunteers to test whether a PEP can detoxify gluten in foods eaten by celiacs. If the trial is successful, further studies into the safety and efficacy of a PEP pill can be expected in 2004 and beyond. Regardless of the outcome this work, the Foundation expresses its heartfelt thanks to the many members of celiac support groups who have aided this work. Special thanks are given to the volunteers who have participated directly in clinical studies sponsored by the Foundation. In addition to an enzyme pill, the Foundation has taken steps to initiate two other drug development projects aimed at suppressing the tendency of the immune system in a celiac patient’s gut to respond adversely to gluten. These include inhibition of tissue transglutaminase, a key enzyme involved in celiac sprue pathogenesis; and inhibition of HLA-DQ2 mediated presentation of antigenic gluten peptides to disease-specific T cells. On the latter, Dr. Marti has received an exploratory grant from the NIH that will, we hope, allow him to identify a suitable drug candidate in collaboration with researchers at the University of Oslo and at Stanford University. Over the past year the Foundation has spent nearly $700,000 for research, enzyme production and clinical trials. The Foundation’s projected R&D budget for 2004 is more than twice this amount. Although some of these costs are expected be defrayed through grants and contracts from the U.S. government, the pharmaceutical industry and other non-profit organizations, the Foundation’s dependence on donations from the celiac community, family and friends continues to be crucial if it is to meet its goals for the next year. The Foundation hopes you will look favorably on its accomplishments in 2003 and consider investing in its work at year’s end to assure that progress continues to be made in this vital endeavor. The Foundation thanks you for your support and look forward to continued advancement toward our shared goal of developing a safe and convenient therapy that will allow those with Celiac Sprue to take in a regular diet. The Celiac Sprue Research Foundation is a public charity that relies upon donations from individuals to support its activities. As an Internal Revenue Code Section 501(c)(3) non-profit organization, your donations are tax deductible to the extent permitted by law.-
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Celiac.com 10/08/2020 - InForGrowth has released its latest research report on the current market for celiac disease drugs, along with development trends and forecasts through 2026. The 2020 Celiac Disease Drug Market Report's analyses include: the macroeconomic factors influencing the growth of the Celiac Disease Drug market; key trends shaping market growth; regions growth opportunities; strategies of key market players. The report seeks to assess the size of the current and future celiac disease drug market by analyzing historical data and future projections. It offers an overviews of market segments, including product types, applications, companies, and regions. Moreover, the report includes a timely analysis on the impact of the COVID-19 pandemic on the Celiac Disease Drug market. Since the COVID-19 virus outbreak in December 2019, the disease has spread to almost 180+ countries around the globe with the World Health Organization declaring it a public health emergency. The COVID-19 pandemic will significantly affect the Celiac Disease Drug market in 2020 and beyond. The report assesses the impact of COVID-19 on the global economy, and on celiac drug markets, by analyzing: the impact of Covid-19 on global celiac drug production and demand; potential disturbances in the supply chain and market; and potential financial harm to firms and financial markets. Also included in the report are detailed analyses of each segment of the celiac disease drug market, based on product type, application, region, and major market players, including F. Hoffmann-La Roche, Johnson & Johnson, Merck, Pfizer, ADMA Biologics, Amgen, Anthera Pharmaceuticals, Bayer, Biogen, BioLineRx, Biotest, Bristol-Myers Squibb, Celgene, Takeda Pharmaceutical, Novartis, LFB Group, and Kedrion Biopharma. Source: CORONA Virus/COVID19 impact here.
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Celiac.com 06/13/2012 - In general, doctors and researchers know a good deal about how celiac disease works, and they are finding out more all the time. However, they know very little about non-celiac gluten sensitivity (NCGS). In an effort to learn more about non-celiac gluten sensitivity, a team of researchers recently carried out a study to measure the presence of somatization, personality traits, anxiety, depression, and health-related quality of life in NCGS individuals, and to compare the results with celiac disease patients and healthy control subjects. They also compared the response to gluten challenge between patients with non-celiac gluten sensitivity and those with celiac disease. The research team included M. Brottveit, P.O. Vandvik, S. Wojniusz, A. Løvik, K.E. Lundin, and B. Boye, of the Department of Gastroenterology at Oslo University Hospital, Ullevål in Oslo, Norway. In all, the team looked at 22 patients with celiac disease and 31 HLA-DQ2+ NCGS patients without celiac disease. All patients were following a gluten-free diet. Over a three day period, the team challenged 17 of the celiac disease patients with orally ingested gluten. They then recorded the symptoms reported by those patients. They did the same with a group of 40 healthy control subjects. The team then had both patients and healthy control subjects complete questionnaires regarding anxiety, depression, neuroticism and lie, hostility and aggression, alexithymia and health locus of control, physical complaints, and health-related quality of life. Interestingly, patients with non-celiac gluten sensitivity reported more abdominal (p = 0.01) and non-abdominal (p < 0.01) symptoms after the gluten challenge than patients with celiac disease. The increase in symptoms in non-celiac gluten sensitivity patients was not related to personality. However, the two groups both reported similar responses regarding personality traits, level of somatization, quality of life, anxiety, and depressive symptoms. Responses for both groups were about the same as for healthy controls. The results showed that patients with non-celiac gluten sensitivity did not show any tendencies toward general somatization, as both celiac disease patients and those with non-celiac gluten sensitivity showed low somatization levels. Source: Scand J Gastroenterol. 2012 Apr 23.
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Celiac.com 09/26/2018 - Non-celiac gluten sensitivity (NCGS) is a clinical syndrome marked by both intestinal and extra-intestinal symptoms that respond to the elimination of gluten-containing food and the adoption of a gluten-free diet. A team of researchers recently set out to review the diagnostic challenges surrounding non-celiac gluten sensitivity, and to summarize recent advances in research and provide a brief overview of the history of the condition for the benefit of professionals working in gastroenterology. The research team included Giovanni Casella, Vincenzo Villanacci, Camillo Di Bella, Gabrio Bassotti, Justine Bold, and Kamran Rostami. They are variously affiliated with General Practioner National Health Italy; the Institute of Pathology Spedali Civili Brescia Italy; the Pathology Department, Carate Brianza Hospital, ASST-Vimercate (Monza Brianza), Italy; the Gastroenterology and Hepatology Section of the Department of Medicine at the University of Perugia School of Medicine in Perugia, Italy; the Department of Gastroenterology Milton Keynes University Hospital, Milton Keynes, UK; and with Allied Health and Social Sciences, University of Worcester, UK. The researchers searched academic databases such as PubMed and Google Scholar using key words like ”non-celiac gluten sensitivity,” “gluten related disorders,” and the studies outlined in reference page were selected and analyzed. Clinical opinion generally holds that NCGS is best diagnosed by ruling out celiac disease and wheat allergy. Currently there is no blood test that can pinpoint NCGS. The underlying causes of symptoms in NCGS patients is poorly understood. However, there have been a few recent insights. Professional estimates of NCGS rates currently vary between 0.6 and 6%. Gastrointestinal symptoms of NCGS overlap slightly with those of irritable bowel syndrome. Researchers are currently investigating the histologic characteristics of NCGS, which range from normal histology to slightly elevated rates of T lymphocytes in the superficial epithelium of villi. Positive response to gluten free diet for up to 6 weeks, followed by a recurrence of symptoms after a gluten challenge, is still the best confirmation of NCGS. The Salerno expert criteria may help to accurately diagnose NCGS, especially in research settings, but isn’t particularly useful for diagnosis in clinical practice. Source: Gastroenterol Hepatol Bed Bench 2018;11(3):197-202).
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Celiac.com 09/20/2017 - A half-time report on what we've learned about each other so far in the Relational Aspects of Food Sensitivities research. The study is geared toward gaining perspective on the perceived impact one adult's food restrictions cause in a household when cohabitating with other adults. It may ultimately yield strategies to address the social and emotional impact of living with food sensitivities. It aims to provide coping strategies, solidarity and empowerment to our community. If you haven't had a chance to take the survey, unfortunately it's not too late. If you have, thank you! More about the survey will appear in the next issue and the four lucky $25 Amazon gift card winners will be announced next month as well. Here's what we've learned so far: Ninety-six percent (96%) of those who took the survey have a diagnosis that leads them to be on a gluten-free diet. Fifty-one percent (51%) have been diagnosed for 8+ years; 28% have been diagnosed between 4-7 years, 13% between 1-3 years, 5% between 7 months and 1 year, and 3% between 0-6 months. Most began eating a gluten-free diet immediately after being diagnosed. Fifty-two percent feel that the way they were diagnosed affects how seriously the other adult(s) living in the household take their dietary requirements and 23% report that the way they were diagnosed doesn't affect the behavior of the other residential adults at all. When it comes to how diagnosed, 73% were diagnosed by an MD; 12% by themselves; 5% by a Practitioner, 5% by "Other;" 3% by a Naturopath and 2% by a Nutritionist. Forty-six percent (46%) report that they check in with a medical or health professional to monitor their health/diet once a year, and 21% get checkups several times a year. Most of us get our medical, health and dietary information we implement into our lifestyle from online sources (39%), books/magazines (21%) and from the MD (17%). The other 23% who took the survey get information from TV/Media, friends, and other sources. Because of the high-quality content available on websites such as Celiac.com, 87% report they are definitely not confused as to which foods are considered to be gluten-free. Sixty-percent (62%) of the respondents' report that other adults in the household are definitely not confused as to which foods are considered to be gluten-free. Ninety-two percent (92%) of us are not confused about what constitutes a "healthy diet." Thirty-eight percent (38%) feel they eat a healthy diet all the time, 48% eat a healthy diet most of the time, 11% eat a healthy diet sometimes, and 3% never eat a healthy diet. Our diet includes gluten-free grains 83% of the time, while 17% of us are grain-free. Adult cohabitants 'almost always' follow the same dietary requirements as we do in 56% of the households, 'sometimes' in 32% and 'rarely' in 12% of the households. Fifty-seven percent (57%) of us report that we eat different foods than the other adults living in the household 'sometimes,' while 22% of us do that 'rarely' and 21% almost always eat different foods. Adults with food sensitivities in 19% of the households enjoy meals prepared by another adult most of the time, 'sometimes' in 46% and never in 36% of the homes. Sixty-seven percent (67%) of those who eat meals prepared by another adult in their household trust that the meals are safe for them to eat. Fifty-one percent (51%) of those who took the survey report that someone else in the household prepares meals for them one to five times a week while 45% report they make all of their meals themselves. Most of us (95%) never cheat on the gluten-free diet. Demographics of the Respondents Eighty-five percent (85%) of the respondents are female and 15% are male. Ninety-two (92%) are white, most (65%) live with one other adult. Thirty-four point sixty two percent (34%) have a Bachelor's degree and 23% have a Masters degree. Household income was between $75-149K for 33% of the respondents. In-Depth Interview – Phase II For those of you who answered, "yes" to the Phase II interview (the longer-term portion of the research) and haven't heard from me yet, please be patient. I'm working with some time constraints now that fall quarter classes have begun and will be contacting some of you in the coming months to schedule a time to talk.
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Celiac.com 04/01/2017 - Global Market Insights has just released its latest report on global gluten free food markets. The report is entitled Gluten Free Food Market Size, Industry Outlook Report, Regional Analysis (U.S., Germany, UK, Italy, Russia, China, India, Japan, South Korea, Brazil, Mexico, Saudi Arabia, UAE, South Africa), Downstream Application Development Potential, Price Trends, Competitive Market Share & Forecast, 2016 – 2023. The report uses comprehensive data to generate reports on gluten free markets and market segments through 2023. Some of the more general insights include: The global gluten free food market size was about 350,000 tons in 2014, and current report estimates that it will grow at a CAGR of more than 9%, to likely exceed 750 kilo tons by 2023. The market was valued at over 4 billion in 2014 and is likely to be worth more than 9 billion by 2023, growing at an estimated CAGR of over 10%. The largest sector was gluten-free bakery products, with 55% of the total market volume in 2014. The gluten-free bakery sector is set to see more than 7% growth through 2023. Cereals & snacks, pizzas, pastas and savories are all likely to show higher growth rates over the forecast period. With over 50% of the total gluten-free market by volume in 2014, the EU will continue to be a major player in the global gluten free food market. North America generated about 20% of total market volume in 2014, and is likely to show strong growth through 2023. The last major insight in their summary included the acknowledgement that the global gluten free food market share is only moderately consolidated among major companies, such as Kellogg’s Company, Boulder Brands, Dr Schar., Hain Celestial, Freedom Foods Group and General Mills. There is still room to grow, and room for consolidation, so look for potential synergy between major players and other prominent companies, such as Ener-G Foods and Genius Foods Ltd, Raisio PLC, Valeo Foods, Hero Group Ag and Kraft Heinz Company. The full report is available for purchase at GMInsights.com
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Celiac.com 11/05/2015 - Professional reports on various aspects celiac disease and gluten-free issues can be helpful for numerous people seeking to better understand what the current and future landscape will look like. The latest such report is the EpiCast Report: Celiac Disease – Epidemiology Forecast to 2023. The celiac disease EpiCast Report provides an overview of the risk factors, co-morbidities, and the global and historical trends for celiac disease in the six major markets (6MM) (US, France, Germany, Italy, Spain, and UK). In that report, GlobalData epidemiologists forecast that the number of total prevalent cases of celiac disease in the 6MM is expected to grow to 8.08 million cases in 2023 at a rate of 3.92% per year during the forecast period. The number of diagnosed prevalent cases in the 6MM is expected to increase by 4.61% over the next decade to 1.11 million cases in 2023. According to the literature, GlobalDatas forecast and analysis is based on a thorough literature review and from primary research results, followed by a careful review of selected secondary research studies and validation of study findings with primary research by GlobalData epidemiologists. The report stands out primarily because GlobalData epidemiologists maintained a consistent case-finding definition and forecasting methodology for celiac disease throughout the 6MM, which allows for a meaningful comparison of the total and diagnosed prevalent cases of celiac disease in these markets. The report further breaks down total prevalent cases of celiac disease by sex, thus providing a detailed analysis of the patient population characteristic of celiac disease. Additionally, GlobalData epidemiologists also provided a realistic trend forecast for the total and diagnosed prevalence of celiac disease based on insights gained through the analysis of historical data. Lastly, the report also includes a comprehensive 10-year epidemiological celiac disease forecast broken down by sex and age (0-19 years, 20-29 years, 30-39 years, 40-49 years, 50-59 years, 60-69 years, and =70 years), and a 10-year epidemiological forecast for the diagnosed prevalent cases of celiac disease in the 6MM. Source: Medgadget.com
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Celiac.com 12/24/2014 - Market research firm RNRMarketReseach has announced the release of its EpiCast Report: Celiac Disease - Epidemiology Forecast to 2023. Written and developed by Masters and PhD-level epidemiologists, the EpiCast Report uses literature review and primary research results, consistent definitions and methodology to offer in-depth, high quality, transparent and market-driven analysis of celiac disease trends in the six major markets (6MM) of the US, France, Germany, Italy, Spain, and UK through 2023. The report provides an overview of the risk factors, comorbidities, and the global and historical trends for celiac disease in these markets. The report also includes a 10-year epidemiological forecast for the total prevalent cases of celiac disease segmented by sex and age (0-19 years, 20-29 years, 30-39 years, 40-49 years, 50-59 years, 60-69 years, and over 70 years), along with a 10-year epidemiological forecast for the diagnosed prevalent cases of celiac disease in the 6MM. The report includes forecast data on the number of total prevalent cases of celiac disease in the 6MM, which it projects to grow at a rate of 3.92% per year, to a total of more than 8 million cases, through 2023. The report also projects the number of diagnosed prevalent cases in the 6MM to increase by 4.61% over the next decade to 1.11 million cases in 2023. Anyone interested in the details may purchase a copy at EpiCast Report: Celiac Disease – Epidemiology Forecast to 2023.
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Celiac.com 01/08/2014 - Push-back mounts against a controversial new report alleging that genetically engineered foods may trigger gluten sensitivity and celiac disease. In the first salvo, Celiac Disease Foundation CEO Marilyn Geller derided the report, published last week by the Institute for Responsible Technology (IRT), as merely "speculative." Then followed comments by leading plant geneticist, Dr. Wayne Parrott, professor of crop science at the University of Georgia, that the report relied on "a handful of deeply flawed"studies and ignored "more than 1,000 studies that have been published in refereed journals and which show that GM crops are as safe as their counterparts." According to Geller, no one has offered scientific evidence "for a GMO/celiac disease link that is supported by the CDF Medical Advisory Board. For their part, the authors of the IRT report admit that there is no data to prove that GMO consumption causes gluten sensitivity. However, they try to hedge slightly by claiming that more and more research shows that GMO consumption may worsen celiac symptoms or lead to gluten sensitivity. Here again, they offer no good data to support their claims. Source: FoodNavigator.com
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Celiac.com 09/12/2013 - The most recent industry report by Research and Markets offers a comprehensive analysis of key players in the gluten-free product industry, major gluten-free product types and their sales channels, with commentary on developments and trends. The report also provides a detailed analysis on various phases of numerous aspects of the gluten-free products industry, along with the competitive strategies favored by major industry players. Among the reports insights: As large supermarkets and mass retailers offer more gluten-free products, gluten-free sales by health and natural food stores are declining. Over the last ten years, as millions of Americans have stopped consuming products containing gluten from wheat, barley, or rye, the market for gluten-free foods and other products has shifted, and many products once regarded as specialty or niche products are now regarded as regular grocery items. The report projects global gluten-free product market to reach $6.2 billion at a CAGR of 10.2% by 2018. The report also provides market details and analysis for North America, now the largest market for gluten-free products, and for Europe, which is expected to show significant growth in the market in the near future. Some of that growth is attributed to a steady stream of new gluten-free products in the market, offering additional nutrition, new ingredients or flavors. The also report projects increased demand countries such as U.K., Italy, U.S., Spain, Germany, Australia, Brazil, Canada, and India, among others. The full report is available for purchase at: Gluten-Free Products Market By Type (Bakery & Confectionery, Snacks, Breakfast Cereals, Baking Mixes & Flour, Meat & Poultry Products), Sales Channel (Natural & Conventional) & Geography — Global Trends & Forecasts To 2018
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Celiac.com 12/04/2009 - It’s been ten months since my diagnosis of celiac disease. The foggy thinking is clearing. I remember more and more details of the misery of living a life with gluten poisoning. Can you imagine having leg cramps so severe that when they finally subsided your legs were bruised? That was by far the worst pain I have ever experienced. And I would have those cramps four or five times a week. I was prescribed quinine and it didn’t help a bit, however I did not contract malaria. People would say to me, “You just need to eat bananas. You have a potassium deficiency.” They didn’t know I ate bananas everyday to no avail. The dull pains in my gut I had learned to ignore even though they were constant. The leg cramps that would come in the middle of the night I could not ignore. Other symptoms included extreme fatigue, lightheadedness, vision loss, anemia, and heart papaltations. Throw in depression, panic attacks, and a feeling of impending doom. My blood work was always a frightening revelation. It even scared my doctor and he’s not even me! You know it’s bad when the doctor is reading your lab results and both of his eyebrows arch up to the middle of his forehead. I also had vertigo and balance problems. The weight loss was extreme. Gluten had robbed me of nutrients necessary to live a normal life. I was suffering from malnutrition, although I ate constantly. Life wasn’t really working out like I had hoped. Can you blame me when I say I really hate gluten? I hate gluten as much as I hate Adolph Hitler. It is insidious. All of that pain was caused by that little protein called gluten. It almost killed me. I won’t ever consciously eat gluten again no matter what drugs are developed to neutralize it. I feel like the classic jilted lover when it comes to gluten. I wouldn’t take gluten back for any amount of money. I would take the drugs only to insure myself in case of accidental ingestion when eating out at a restaurant or something to that effect. When I am at the grocery store I will not even walk down the bread aisle. I hate the smell of fresh bread. I really believe everyone would be better off if they went gluten free. However, it’s not going to happen. The best thing about celiac disease is that once you eliminate gluten from your diet you start getting better in a hurry. What an exciting journey these past ten months have been! I have gained 58 pounds. I feel so strong that sometimes when I walk down the street I hope someone will take a swing at me! Unless he’s a professional fighter I don’t think he’ll knock me to the pavement on the first swing. Maybe I exaggerate a bit, but what I am trying to say is that I have a feeling of well-being that I never knew possible. I feel so good I want to shout out to the neighborhood, “I FEEL GOOD!” (cue the James Brown song here) “I KNEW THAT I WOULD NOW!” What is exciting is that some of the research is very optimistic. I recommend reading some of Dr. Ron Hoggan’s articles on the cutting edge discoveries that could possibly neutralize the toxic effects of gluten in celiacs. Larazotide Acetate could be the miracle drug celiacs and other autoimmune sufferers are hoping for. I think you will be hearing a lot more about breakthroughs in the near future. I am so grateful for Dr. Hoggan, Scott Adams, Dr. Peter Green, the research team at the University of Maryland, Dr. Alessio Fasano and many others who are lending their brilliance to this puzzling malady. I marvel at the depth of their knowledge and passion for discovery. Unfortunately, I am not so gifted. I can only thank them and reap the benefits of their work. Reading Recommendations: If you aren’t already familiar with The Journal of Gluten Sensitivity you can subscribe through a link here at Celiac.com. You will find much information and you will be encouraged at the current work being done in this field. I highly recommend the following books for the newly diagnosed celiac: -Celiac Disease and Living Gluten-Free – Jules E. Dowler Shepard (a great personal story honestly told by a smart author, and lots of recipes) -Celiac Disease a Hidden Epidemic – Peter Green. M.D. and Rory Jones (lots of science and answers to your questions here) -The Gluten-Free Diet – A Gluten Free Survival Guide – Elisabeth Hasselbeck (another honest personal testimony and lots of graphs, charts, and recipes) All of the above have done much research and have exhaustive indexes. Well worth the investment.
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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.
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