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Beyond Celiac Offers Gut Health Tips for the New Year
Gut health has been a trendy topic lately, and for good reason. Good gut health supports the immune system and generally makes you feel better. But gut health is important for everyone, not just those who have gut issues such as celiac disease and gluten sensitivity. Below are tips from Beyond Celiac, the leading catalyst for a celiac disease cure, for managing your gut health in the new year.
  1. Consume pre- and probiotic foods. Spinach, cabbage, onions, apples, oranges and grapefruit are just a few examples. Flavonoid-rich spices like ginger, garlic, turmeric, rosemary and oregano also contain pre- and probiotics.
  2. Manage lifestyle choices like exercise, alcohol consumption, stress and tobacco use. Making positive changes in these areas can help improve overall gut health and wellbeing.
  3. Talk to your healthcare provider if you have symptoms. If you have been experiencing pain, bloating, diarrhea, brain fog or other unexplained symptoms, ask your doctor to be tested for celiac disease. There may be something more serious going on, and a celiac disease test could provide answers.
Depression and anxiety are symptoms of celiac disease, and research has shown that imbalances in the gut microbiome can also contribute to depression and anxiety. “An inflamed or leaky gut can make working, socializing and doing everyday tasks difficult,” said Beyond Celiac CEO Alice Bast. “If you are experiencing ongoing GI or non-GI symptoms, talk to your doctor about getting tested. Celiac disease is often missed or misdiagnosed, leading to years of pain and frustration.” Celiac disease is an autoimmune disorder that is triggered by the consumption of gluten, a protein found in wheat, barley, and rye. When someone with celiac disease eats gluten, it causes an immune response that damages the small intestine and interferes with the absorption of nutrients. Research has shown that celiac disease can also affect the gut microbiome. Studies have found that individuals with celiac disease often have an imbalance in their gut bacteria, with lower levels of beneficial bacteria and higher levels of harmful bacteria. This can contribute to the malabsorption of nutrients and inflammation that are associated with celiac disease. Celiac disease affects one in 133 Americans. For more information about gluten sensitivity and celiac disease, refer to the Beyond Celiac publication, The Mystery of Celiac Disease.

About Beyond Celiac

Founded in 2003, Beyond Celiac is the leading catalyst for a celiac disease cure in the United States, serving as a patient advocacy and research-driven organization working to drive diagnosis and accelerate the discovery of new treatments. By engaging with the top scientists in the field, making the right investments in research and supporting the broad community of those with celiac disease and gluten sensitivity, Beyond Celiac envisions a world in which people can live healthy lives and eat without fear – a world Beyond Celiac.
Beyond Celiac Finds Hispanic Americans Need More Awareness, Diagnosis and Treatment for Celiac Disease
Opera Star Arturo Chacón-Cruz Wants to Change the Statistics Two-thirds (67%) of Hispanic Americans still lack information and awareness of celiac disease and gluten sensitivity, according to a nationwide benchmark survey conducted by The Harris Poll on behalf of Beyond Celiac, the leading catalyst for a celiac disease cure. Renowned opera tenor and Beyond Celiac Ambassador Arturo Chacón-Cruz, a native of Sonora, Mexico, wants to change these statistics. Chacón-Cruz, who along with his mother and son have celiac disease, wants to help other Hispanics know the symptoms and process for getting diagnosed and treated for celiac disease. The survey showed that only 36% of Hispanic Americans know that half or more of people with celiac disease are undiagnosed, and as few as 21% know that celiac disease often runs in families.  Chacón-Cruz, who along with his mother and son have celiac disease, wants to help other Hispanics know the symptoms and process for getting diagnosed and treated for celiac disease. The survey showed that only 36% of Hispanic Americans know that half or more of people with celiac disease are undiagnosed, and as few as 21% know that celiac disease often runs in families.  The only current way to manage celiac disease is through a strict gluten-free diet – foods free from wheat, rye and barley. If left untreated, celiac disease, a serious autoimmune condition that causes damage to the small intestine resulting in debilitating symptoms, can lead to a number of long-term health problems, including infertility and some types of cancer. Celiac disease affects one in 133 Americans. “We know many in our community lack awareness about celiac disease, and I hope to change that so everyone with celiac disease can receive the diagnosis and treatment they deserve,” said Chacón-Cruz. “Food is such a big part of Hispanic and Latino culture and heritage. We can still live a full life and enjoy a shared meal with family and friends, we just need to change the way we eat until there is a cure.” According to the survey, only about half (52%) of Hispanics know that following a strict gluten-free diet is the way someone with celiac disease can control it. “Celiac disease is a misunderstood and misdiagnosed disease,” Beyond Celiac CEO Alice Bast said. “We believe it’s important that all Americans become more aware of celiac disease and its symptoms so they get an accurate diagnosis and the treatment needed to live a healthy life,” Bast said “I was so sick before I got diagnosed, my life was difficult as a professional opera singer who has to spend so much time traveling for work,” said Chacón-Cruz. “Now knowing that I have to stay strictly gluten-free, I have a different challenge with all the travel I do, but it’s also hard for people like my mother and son who aren’t traveling as much. Ultimately I hope we can find a cure so these problems don’t exist.” Chacón-Cruz began partnering with Beyond Celiac in 2019 to help the organization raise awareness and to generate support for research for treatments and a cure. Using his platform in the world of opera, he has raised visibility and is featured in a video in which he tells his story and why he is so passionate about the work of Beyond Celiac. A report on the survey results, The Mystery of Celiac Disease: The Need for Greater Awareness and Accelerating the Quest for a Cure can be found online at 2022 Beyond Celiac Survey Report. The report also presents the facts about the disease, and outlines how Beyond Celiac is taking steps to accelerate the quest for a cure. The Harris Poll Survey Methodology This survey was conducted online within the United States by The Harris Poll on behalf of Beyond Celiac from February 8-10, 2022 among 2,039 adults ages 18 and older. The sampling precision of Harris online polls is measured by using a Bayesian credible interval.  For this study, the sample data is accurate to within + 2.8 percentage points using a 95% confidence level. For complete survey methodology, including weighting variables and subgroup sample sizes, please contact [email protected] About Beyond Celiac Founded in 2003, Beyond Celiac is the leading catalyst for a celiac disease cure in the United States, serving as a patient advocacy and research-driven organization working to drive diagnosis and accelerate the discovery of new treatments. By engaging with the top scientists in the field, making the right investments in research and supporting the broad community of those with celiac disease and gluten sensitivity, Beyond Celiac envisions a world in which people can live healthy lives and eat without fear – a world Beyond Celiac. www.BeyondCeliac.org.   ###
Beyond Celiac Amplifies the Patient Experience of Celiac Disease through Research Presented at International Conference
Celiac disease patients report they experience more than just GI symptoms, growing dissatisfaction with the gluten-free diet as a sufficient treatment Philadelphia, PA -- Beyond Celiac, the leading catalyst for a celiac disease cure, is taking the lead in presenting the patient perspective on celiac disease symptoms and the dissatisfaction with the gluten-free diet at an international meeting of celiac disease researchers and physicians in Sorrento, Italy.  Two posters based on data gathered by Beyond Celiac directly from those who have celiac disease are being presented by Alice Bast, chief executive officer, at the International Celiac Disease Symposium.  One poster shows that those with celiac disease report having more than just gastrointestinal symptoms when they are exposed to gluten and the other that there is growing dissatisfaction with the gluten-free diet as a sufficient treatment.  Additionally, scientists whose research is being funded by Beyond Celiac are also presenting at ICDS. Michael Fitzpatrick, MD, of the University of Oxford, is giving an oral presentation on the investigation into the pathogenic role of so-called killer T-cells in celiac disease, work funded through the 2019 Beyond Celiac Established Investigator Award.  Iain Croall, PhD, of Sheffield University, is presenting a poster on early findings from research into the neurological and neuropsychological manifestations of celiac disease and gluten-related disorders. This work was funded by the 2021 Beyond Celiac Established Investigator Award. The Beyond Celiac symptoms poster is based on an online survey taken by more than 2,200 adult participants registered in the Go Beyond Celiac patient registry. About 98 percent of the 2,000 symptomatic participants reported having gastrointestinal symptoms and about 96 percent reported non-gastrointestinal symptoms, the poster shows.  The most common gastrointestinal symptoms were abdominal pain or discomfort, abdominal bloating, gas, and diarrhea. The most common non-gastrointestinal symptoms were brain fog, fatigue, irritability, and headaches. Most participants with symptoms reported a combination of gastrointestinal and other symptoms.  “Physicians should be aware of common non-GI symptoms when considering diagnostic screening or celiac disease management,” according to authors of the poster. The second poster, based on two community surveys taken by Beyond Celiac eight years apart, shows that celiac disease patient attitudes about the gluten-free diet have shifted significantly in the last decade. Survey participants who agreed “a great deal” that the gluten-free diet is an adequate treatment has decreased by more than half. In 2014, of the 1460 survey participants, about 27 percent agreed compared to about 12 percent of the 1140 who answered the survey in 2022. Meanwhile, the proportion of participants who agreed “not at all” that the gluten-free diet was a sufficient treatment increased from about 13 percent in 2014 to about 23 percent in 2022.  “Beyond Celiac is playing a vital role in educating the celiac disease community, physicians and researchers about challenges posed by inadvertent gluten exposure, the burden of the disease, and the need for treatments beyond the diet,” notes Beyond Celiac Director of Research and Patient Engagement Kate Avery, MPH, who is an author on both Beyond Celiac posters.  Meanwhile, the poster being presented by Croall is based on the survey response of 84 patients treated at Sheffield for neurological conditions who were asked to report symptoms associated with acute gluten exposures and/or symptoms they persistently experience. Overall, survey participants ranked the gluten-free diet as being moderately successful in controlling their symptoms. Those surveyed had gluten ataxia/encephalopathy with and without a diagnosis of celiac disease. Survey participants also reported on quality of life and how well they followed the gluten-free diet, with both groups reporting high adherence.  Both groups also reported similar rates of neurological symptoms that occurred acutely and persistently. Balance problems were an exception, occurring in about 60 percent of those with celiac disease and about 80 percent of those who don’t have celiac disease.  Overall, the perceived effectiveness of the gluten-free diet in controlling acute symptoms was about 55 percent compared to 50 percent for persistent symptoms. “Indications of depression and particularly anxiety are found at high rates, the poster concludes. “Experiencing persistent “movement problems” appears to be an important symptom in predicting depression and physical issues pertinent to the patient,” according to the poster authors.  The survey is part of the larger study developing a retrospective blood test sample and brain imaging database of almost 1,000 patients who have been seen at Sheffield over 20 years.  ICDS, which takes place every other year in a different country around the world, is forum where scientists, clinicians, health allied professionals, patients associations and industry meet to exchange knowledge and experience and to foster cooperation, according to ICDS organizers.    Celiac disease is a serious autoimmune condition. The disease causes damage to the small intestine, resulting in debilitating symptoms, and if left untreated can lead to a number of serious, long-term health problems including brain damage, infertility and some types of cancer. Celiac disease affects one in 133 Americans.    About Beyond Celiac Founded in 2003, Beyond Celiac is the leading catalyst for a celiac disease cure in the United States, serving as a patient advocacy and research-driven organization working to drive diagnosis and accelerate the discovery of new treatments. By engaging with the top scientists in the field, making the right investments in research and supporting the broad community of those with celiac disease and gluten sensitivity, Beyond Celiac envisions a world in which people can live healthy lives and eat without fear – a world Beyond Celiac.  
Beyond Celiac Identifies Health Disparities in Celiac Disease Awareness, Diagnosis and Treatment for Black Americans
PHILADELPHIA, Aug. 23, 2022 — Black Americans (63%) are significantly more likely than Hispanic Americans (49%) and White Americans (47%) to have no awareness of celiac disease and/or gluten-sensitivity, suggesting potential health inequities in both diagnosis and treatment, according to a nationwide benchmark survey conducted by The Harris Poll on behalf of Beyond Celiac, the leading catalyst for a celiac disease cure. Other research indicates celiac disease diagnosis and treatment disparities for Black Americans. A serious autoimmune condition that causes damage to the small intestine resulting in debilitating symptoms, celiac disease, if left untreated, can lead to a number of long-term health problems including infertility and some types of cancer. Celiac disease affects one in 133 Americans. Other key findings about Black Americans and celiac disease from the 2022 Beyond Celiac Survey Report indicating lack of awareness and health information about celiac disease and/or gluten-sensitivity include:
  • Only 8% of Black Americans know that celiac disease often runs in families, compared to 21% of Hispanic Americans and 24% of White Americans.
  • Only 37% of Black Americans, compared to 52% of Hispanic Americans and 58% of White Americans, realize that following a strict 100% gluten-free diet is how someone with celiac disease controls it today.
  • Only 33% of Black Americans are aware that someone with celiac disease who strictly follows a gluten-free diet still has to worry about experiencing celiac disease symptoms or health conditions caused by it, whereas 41% of Hispanic Americans and 56% of White Americans know it.
"Celiac disease is not only mis-understood, it is also misdiagnosed. We know equal access to healthcare information, diagnosis and treatment is a concern on many levels including for people of color. These inequities place Black Americans at greater risk for poor health outcomes especially when it comes to a condition like celiac disease which is hard to diagnose and has no treatment or cure," Beyond Celiac CEO Alice Bast said.

Additional Disparity Research

In a study by the University of Chicago and Harvard School of Public Health, researchers found that Black Americans who have symptoms associated with celiac disease have 90% decreased odds of receiving the appropriate follow-up for diagnosis. At the University of Alabama at Birmingham, a new registry of celiac disease patients showed that Black Americans with biopsy-confirmed celiac disease were more likely than non-Hispanic White Americans to have negative results on the most commonly-used diagnostic blood test for celiac disease, the anti-tissue transglutaminase immunoglobulin A (TTG) blood test. A positive TTG test will often trigger an endoscopy and biopsy for celiac disease diagnosis. The study raised the question of whether further confirmatory testing for celiac disease is deterred in Black Americans in general clinical practice. Eighty percent of Black patients with biopsy-confirmed celiac disease in the registry had TTG test results that were less than the upper limit of normal, compared to about 9 percent of non-Hispanic White patients in the registry. Additionally Black patients were much less likely to have tests for the genes associated with celiac disease.

Moving Forward

"We believe is important that all Americans understand the symptoms of celiac disease so they can advocate for their own health, including gaining an accurate diagnosis and the treatment needed to live a healthy life," Bast said. "Beyond Celiac is taking action to increase awareness, diagnosis and treatment for Black Americans." Two examples of this action are the NMQF project and Voices of Celiac Disease Project. In partnership with the National Minority Quality Forum (NMQF), Beyond Celiac is examining and addressing health inequities in the diagnosis and treatment of celiac disease. Beyond Celiac and NMQF, a leading advocacy organization on issues of health disparity, are investigating the extent of undiagnosed celiac disease, particularly among non-Caucasians, through analysis of Medicare and Medicaid data. The goal is to map celiac disease across the United States to drive diagnosis and ensure clinical trials include a diverse, representative patient population. In the Beyond Celiac Voices of Celiac Disease project, non-whites with celiac disease have shared stories of being dismissed by physicians who told them they could not have celiac disease because of their race and, thus delaying diagnosis due to race.

The Harris Poll Survey Methodology

This survey was conducted online within the United States by The Harris Poll on behalf of Beyond Celiac from February 8-10, 2022 among 2,039 adults ages 18 and older. The sampling precision of Harris online polls is measured by using a Bayesian credible interval. For this study, the sample data is accurate to within + 2.8 percentage points using a 95% confidence level. For complete survey methodology, including weighting variables and subgroup sample sizes, please contact [email protected]

About Beyond Celiac

Founded in 2003, Beyond Celiac is the leading catalyst for a celiac disease cure in the United States, serving as a patient advocacy and research-driven organization working to drive diagnosis and accelerate the discovery of new treatments. By engaging with the top scientists in the field, making the right investments in research and supporting the broad community of those with celiac disease and gluten sensitivity, Beyond Celiac envisions a world in which people can live healthy lives and eat without fear – a world Beyond Celiac. www.BeyondCeliac.org.
Beyond Celiac Earns Recognition in Prestigious Ragan CSR & Diversity Award
PHILADELPHIA, PA (July 20, 2022)— Beyond Celiac has been named an Honorable Mention recipient of Ragan’s Corporate Social Responsibility (CSR) & Diversity Awards in the Community Relations and Engagement category. Ragan’s CSR & Diversity Awards celebrates the teams, organizations and agencies whose work is positively impacting communities, whether internally, locally or globally.   Beyond Celiac was chosen from a wide pool of entries to receive Honorable Mention recognition in Community Relations and Engagement for its passionate work with the Voices of Celiac campaign.   The Voices of Celiac project aims to spread awareness about celiac disease by showcasing diverse stories of the celiac disease experience from patients around the world. Stories are collected on the Beyond Celiac website and shared on a dedicated campaign hub and the Beyond Celiac social media channels. Almost two hundred stories have been collected so far, showcasing the real life experiences of people with celiac disease from a wide range of races, ethnicities, genders, locations, and ages.   "Promoting diversity and reducing disparities in diagnosis and management of celiac disease are key objectives for Beyond Celiac,” said Beyond Celiac director of research engagement and campaign lead Maria Luci. “We created the Voices of Celiac project to highlight unique stories of our community members and celebrate their diverse experiences. Beyond Celiac is honored to be recognized by Ragan for this campaign, which has brought to light a number of common shared issues amongst minority celiac disease patients.”   Celiac disease is a serious genetic autoimmune disorder that affects an estimated 1 in 133 Americans, more than half of whom are still undiagnosed. The disease causes damage to the small intestine, resulting in debilitating symptoms, and if left untreated, can lead to serious long-term health problems including infertility and some types of cancer.   About Beyond Celiac Founded in 2003, Beyond Celiac is the leading catalyst for a celiac disease cure in the United States, serving as a patient advocacy and research-driven organization working to drive diagnosis and accelerate the discovery of new treatments and a cure by 2030. Beyond Celiac is paving the way for scientific progress and pushing for increased celiac disease screening in underdiagnosed communities. By engaging with the top scientists in the field, making the right investments in research and supporting the broad community of those with celiac disease and gluten sensitivity, Beyond Celiac envisions a world in which people can live healthy lives and eat without fear – a world Beyond Celiac.      About Ragan Communications Ragan Communications and PR Daily run 15 awards programs each year, including the prestigious PR Daily Awards, Top Women in Communications Awards and Digital Marketing and Social Media Awards. Judged by globally regarded experts and featuring multiple categories, these programs honor the top work in communications, PR, marketing, media and HR. Ragan Communications has been delivering trusted news, training and intelligence for more than 50 years to internal and external communicators and business executives via its conferences, webinars, training, awards, subscriptions and its membership divisions. Its daily news sites—PRDaily.com,  Ragan.com and RaganWellness.com—are read by more than 600,000 internal and external communicators and HR professionals monthly.
Beyond Celiac Helps Declare Independence from Gluten with Summertime Beverages
PHILADELPHIA (July 1, 2022) Beyond Celiac wants to help those with celiac disease across the country celebrate their independence from gluten this July with a delicious selection of drink recipes featuring gluten-free summer favorites. The leading celiac disease organization working to drive diagnosis, advance research and accelerate the discovery of new treatments and a cure, Beyond Celiac has compiled an array of adult and family-friendly beverages that are safe for those with celiac disease, a genetic autoimmune disorder that damages the small intestine when gluten is ingested.  “Summer gatherings and other special occasions can be hard when you have a medically restricted diet, so we at Beyond Celiac are helping by providing drink recipes to maximize fun and minimize stress,” noted Claire Baker, Senior Communications Director of Beyond Celiac. “Celiac disease is serious and can be overwhelming, and we wanted to offer some refreshing beverage options so that our community can enjoy the season along with everyone else,” she added. While mostly thought of as a challenge for food items, people with celiac disease also need to watch out for gluten in beverages. Gluten is a protein found in wheat, barley, rye and the derivatives of these grains, including malt and brewer’s yeast. A gluten-free diet excludes all products containing these ingredients. So while a chocolate malted milkshake may sound delicious, it can set off a serious storm of symptoms in a person with celiac disease, since malt is a derivative of barley. Conventional beers also contain barley. However, distilled liquors and wines are gluten-free, unless a gluten-containing ingredient has been added back in. Those who are gluten-free can still enjoy summertime drinks made with seltzer, soda, fruit juice, milk and coconut milk, in addition to wine and alcohol. Though people with celiac disease and gluten sensitivity need to read labels to confirm that the product is gluten-free, they can have much greater confidence in avoiding accidental gluten exposure when mixing their own favorites at home. “Our mission at Beyond Celiac is to accelerate research for treatments and a cure for celiac disease. While we make strides towards that goal, we also want to raise awareness about the disease and help our community safely navigate living strictly gluten-free,” Baker concluded.   About Beyond Celiac For more than 15 years, Beyond Celiac has been the leading patient advocate and research-driven celiac disease organization working to drive diagnosis, advance research and accelerate the discovery of new treatments and a cure. By engaging with the top scientists in the field, awarding research grants, and supporting the community, Beyond Celiac envisions a world in which people with celiac disease can live healthy lives and eat without fear – a world Beyond Celiac.
Phase 3 Celiac Disease Drug Trial Halted
PHILADELPHIA (June 21, 2022) – 9 Meters Biopharma announced today that they will discontinue larazotide acetate drug trials in celiac disease. Larazotide acetate was the first to enter into clinical trials more than 15 years ago, and in 2020 was the first to reach Phase 3. Beyond Celiac partnered with 9 Meters for patient recruitment for the current round of trials.   Today’s announcement is a disappointing development in the quest to find treatments and a cure for celiac disease, but nearly two dozen other drug trials continue, four of which are in Phase 2, and Beyond Celiac as a leader in clinical trial recruitment remains resolute in our goal for treatments or a cure by 2030.    “There will always be setbacks and triumphs as we move toward effective therapies,” notes Alice Bast, Beyond Celiac CEO. “Science is moving ahead rapidly; new trials will be happening; and we are ready to help accelerate research. Because of the outstanding Beyond Celiac community and our Go Beyond Celiac registry, we're all in this together to advance other therapies so that we will be able to eat without fear and live life to the fullest by 2030.”   From their press release, Patrick Griffin, MD, Chief Medical Officer of 9 Meters said, "We were hopeful that this study of larazotide would lead to a treatment option for those with celiac disease but also fully recognize the challenges and complexities of the disease and the ability to effectively measure outcomes."    Currently, the only treatment for celiac disease is the gluten-free diet, which is challenging to follow, especially since cross-contact with gluten is difficult to eliminate. Additionally, some patients to continue to have symptoms even when they are following a strict gluten-free diet. Larazotide acetate is designed to work by decreasing intestinal permeability and regulating tight junctions between intestinal cells. This so-called “leaky gut” is thought to be the gateway to many autoimmune diseases, including celiac disease. If successful, the drug would help restore the leaky junctions to a normal state.   Beyond Celiac is a leading partner in the recruitment of patients for celiac disease clinical trials as part of their mission to accelerate research for treatments and a cure by 2030. Read more about the story at www.beyondceliac.org/research/research-news/
Beyond Celiac and Takeda Partner on Diversity and Healthcare Equity Initiative in Celiac Disease
PHILADELPHIA (June 14, 2022) – Beyond Celiac, a leading catalyst for a celiac disease cure in the United States, today announced a multi-year partnership with Takeda to identify and reduce disparities in celiac disease diagnosis and management, aiming to raise awareness and help minority patients participate in clinical trials. The partnership will focus on improving aspects of diversity, equity, and inclusion in celiac disease. This includes a data analysis to identify access barriers to diagnosis and treatment, suboptimal celiac disease clinical management, and underrepresentation of minority groups in clinical trials. In addition, the partnership will aim to educate and increase societal awareness of celiac disease.   Previous research has shown that Black, Hispanic, and Latino patients and those with public insurance presenting with celiac disease symptoms are less likely to receive appropriate follow-up compared to white patients and those with private insurance.  “We want everyone with celiac disease to have access to diagnosis and treatment. This project is an important next step in achieving this goal,” said Beyond Celiac CEO Alice Bast. “It is an extension of work that we are pursuing with our partner the National Minority Quality Forum to identify populations where celiac disease may be overlooked or not even considered, based on racial, economic and geographic demographics.” “Beyond Celiac is a vital conduit within the celiac disease community, so we are eager to expand our work together to better support people with celiac disease,” said Marcelo Freire M.D., Head of Gastroenterology, Global Medical Affairs at Takeda. “Improving diagnosis and increasing awareness of celiac disease, particularly among underrepresented communities, is an important endeavor with the potential to significantly improve patient inclusion and access to research and care.”  Added Sylvester Uwumarogie, MD, Associate Director and DE&I project lead, Global Medical Affairs.  Celiac disease is a serious immune-mediated disorder that affects an estimated 1 in 133 Americans, more than half of whom are still undiagnosed. The disease causes damage to the small intestine, resulting in debilitating symptoms, and if left untreated, can lead to serious long-term health problems including infertility and some types of cancer.  About Beyond Celiac Founded in 2003, Beyond Celiac is the leading catalyst for a celiac disease cure in the United States, serving as a patient advocacy and research-driven organization working to drive diagnosis and accelerate the discovery of new treatments. By engaging with the top scientists in the field, making the right investments in research and supporting the broad community of those with celiac disease and gluten sensitivity, Beyond Celiac envisions a world in which people can live healthy lives and eat without fear – a world Beyond Celiac. 
Beyond Celiac Kicks off First-of-its-Kind Coalition to Accelerate Clinical Research in Celiac Disease
PHILADELPHIA (May 23, 2022) – Beyond Celiac, the leading patient advocacy organization focused on accelerating development of treatments and a cure for celiac disease, has launched a multi-stakeholder coalition to advance clinical research in celiac disease. Members include top representatives from pharmaceutical, biotech and diagnostic companies as well as leading researchers and clinicians in the field, including such participants as Takeda; Provention Bio; Anokion; imaware™ at-home health testing; Marisa Stahl, MD and Edwin Liu, MD of Children’s Hospital Colorado; and Adam C. Stein, MD of Northwestern University Feinberg School of Medicine and more.  Beyond Celiac formed this precompetitive partnership with the overarching goal of addressing significant roadblocks on the path to a cure for celiac disease, with a particular emphasis on breaking down barriers to patient engagement in clinical trials. “Strategic partnerships are a key enabler of our science plan,” said Salvo Alesci, Beyond Celiac Chief Scientific Strategy Officer. “Accelerating research into treatments for celiac disease will only happen through the concerted effort of many strong, committed partners.” The coalition is designed to be broadly inclusive, and more members are continuing to join this important work. Members of the coalition will share expertise, resources, and funding, designing short- and longer-term projects to make advancements toward a cure in a collaborative setting. The coalition will start by sponsoring two initiatives:
  • A systematic analysis of perspectives of patients, sponsors, and clinical research sites regarding the barriers to and facilitators of clinical trial recruitment and retention.
  • The development of best practices (i.e., guidance, toolkits, etc.) for adult and pediatric celiac trials to increase patient participation and satisfaction.
  These and future projects will be informed by a continuous dialogue between representatives of the healthcare industry, researchers and the Beyond Celiac community of patients, caregivers and consumers. Celiac disease is a serious genetic autoimmune disorder that affects an estimated 1 in 133 Americans, more than half of whom are still undiagnosed. The disease causes damage to the small intestine, resulting in debilitating symptoms, and can lead to serious long-term health problems including infertility and some types of cancer. “With this precompetitive partnership, we are all working together to advance breakthroughs in celiac disease and ultimately help our community live longer, better,” notes Alice Bast, CEO of Beyond Celiac. “The celiac disease community understands that a treatment beyond the gluten-free diet is necessary. This coalition will move the field of celiac disease forward, continuing to elevate the voices of patients so we can live our lives to the fullest, eat without fear and be protected against the long-term health consequences that celiac disease can bring.”   About Beyond Celiac Founded in 2003, Beyond Celiac is the leading catalyst for a celiac disease cure in the United States, serving as a patient advocacy and research-driven organization working to drive diagnosis and accelerate the discovery of new treatments. By engaging with the top scientists in the field, making the right investments in research and supporting the broad community of those with celiac disease and gluten sensitivity, Beyond Celiac envisions a world in which people can live healthy lives and eat without fear – a world Beyond Celiac. www.BeyondCeliac.org.
Beyond Celiac and the Society for the Study of Celiac Disease select Arnold Han, MD PhD of Columbia University for the 2022 Early Career Research Award
PHILADELPHIA (May 12, 2022) – Beyond Celiac, the leading catalyst for a celiac disease cure in the United States, and the Society for the Study of Celiac Disease (SSCD) announced today that Arnold Han, MD PhD of Columbia University has been selected to receive the 2022 Early Career Grant Award. The grant is designed to attract exceptionally promising early career academic investigators to the field of celiac disease research. SSCD peer-reviewed the applications and selected the recipient, and Beyond Celiac will provide grant oversight and funding of up to $90,000 per year for two years.  “We made attracting and retaining early career investigators to the field of celiac disease, and funding translational research two key priorities of our scientific strategy,” noted Beyond Celiac Chief Scientist and Strategy Officer Salvo Alesci, MD, PhD. “Dr. Han’s career path and his proposed research are both well aligned with both priorities, and I am delighted that he was selected for this award.” Celiac disease is a chronic autoimmune disease whose predominant feature is intestinal inflammation caused by abnormal T-cell responses to gluten. T–cells are critical components of the immune system and, when functioning normally, regulate the body’s immune responses to microorganisms that can cause diseases. In celiac disease, T-cells inappropriately perceive gluten as a threat and trigger an immune response, which damages the intestine and other organs. Han’s work will explore the contribution of a T-cell subtype, CD8 T-cells, to this abnormal immune response to help enable development of new therapeutic strategies. “We are very pleased to partner with Beyond Celiac on this award,” noted Ciaran Kelly, MD, President Emeritus of SSCD and Professor of Medicine at Beth Israel Deaconess Medical Center. “It is through collaborations such as this grant award that we will more quickly advance research to cure this serious genetic autoimmune disease.” “Our research has the potential to directly impact the millions of people living with celiac disease. I also strongly believe that our research in celiac disease will provide important clues to better understand other autoimmune diseases,” said Han. “I am honored to be entrusted with this funding for this critical research.” About Beyond Celiac Founded in 2003, Beyond Celiac is the leading catalyst for a celiac disease cure in the United States, serving as a patient advocacy and research-driven organization working to drive diagnosis and accelerate the discovery of new treatments. By engaging with the top scientists in the field, making the right investments in research and supporting the broad community of those with celiac disease and gluten sensitivity, Beyond Celiac envisions a world in which people can live healthy lives and eat without fear – a world Beyond Celiac.  About the Society for the Study of Celiac Disease (SSCD) The SSCD is an organization of medical, scientific and allied health professionals formed to advance research in celiac disease and gluten-related disorders and to improve clinical care, including diagnosis and treatment.

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