NBC Today Show Co-Host and Meteorologist Dylan Dreyer Keynotes the Summit

PHILADELPHIA (Sept. 13, 2023) – Beyond Celiac, the leading catalyst for a celiac disease cure, is presenting a Celiac Community Summit on Saturday, Sept. 30, 2023, at the Hyatt Regency in Old Greenwich, Conn., to provide celiac disease patients with the latest information on this serious autoimmune disease. The Summit features panels of expert speakers and vendors including a keynote address from NBC Today Show Co-host and Meteorologist Dylan Dreyer for a day of learning and sharing best practices.

Dreyer’s six-year-old son, Calvin (Cal), was recently diagnosed with celiac disease. After months of stomach pain, earache, hair loss and a skin rash, they were finally able to get a diagnosis. Like so many others, Dreyer’s family is now learning to live with celiac disease and create a safe, gluten-free home for him.

“We are thrilled to create this day-long opportunity for the celiac disease community to come together, share experiences, and learn from both medical and lifestyle experts,” said Beyond Celiac CEO Alice Bast. “Living with celiac disease presents many challenges, and there’s great value in being with people who understand how isolating it can be and how difficult it is to live your life to the fullest when in fear of getting "glutened".  We are excited to listen and learn from our community as we focus on accelerating treatments towards a cure.”

Attendees will hear from doctors about the latest research, attend breakout sessions to learn about living with celiac disease, find out how to advocate for themselves, and much more. They will even participate in a Family Feud-style game about celiac disease. To view the full schedule with the lineup of guests as well as register for the Summit, visit https://beyondceliacsummit23.funraise.org.

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. 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 and the Society for the Study of Celiac Disease award Shayna Coburn, PhD, of Children's National Hospital, the 2023 Early Career Research 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. 

Coburn’s research will investigate the effect that using at-home tests for gluten in urine has on the emotions and behavior of teenagers with celiac disease when the teens and their parents are also part of an internet-based support program. “Teens with celiac disease have an increased risk of poor quality of life and emotional distress as well as poorer adherence to the gluten-free diet as they enter this vulnerable stage of life,” says Coburn.

Teens are contending with transitions toward autonomy and independence and critically need to gain skills in managing the gluten-free diet, with support from their parents,  she notes. “The project would lay the groundwork for integration of at-home testing in clinical care and interventions designed to help teens with celiac disease take control of their health,” Coburn says.   

"We're really excited to support this research because the findings could make a big difference for teenagers living with celiac disease," explains Alice Bast, CEO of Beyond Celiac. "We are dedicated to finding real-world ways to help our community now while we work to accelerate research for treatments and a cure. The things we'll learn from this study could definitely help these teens take better care of themselves and feel better overall."

"Collaborating with Beyond Celiac to provide this grant offers a valuable opportunity to elevate our joint commitment to advancing celiac disease research," notes Ciaran Kelly, MD, President Emeritus of SSCD and Professor of Medicine at Beth Israel Deaconess Medical Center. "Together, we're actively driving meaningful change for affected teens."

In addition to her role at Children’s National, Coburn is an associate professor of psychiatry and behavioral sciences at The George Washington University School of Medicine and Health Sciences.

Beyond Celiac is focused on patient advocacy through the support of research both in the United States and abroad. The organization has committed more than $3 million to directly fund celiac disease research in the last several years as part of its comprehensive Science Plan to have treatments toward a cure by 2030.

About Beyond Celiac

Founded in 2003, Beyond Celiac is the premier nonprofit funder of international celiac disease research and catalyst for celiac disease treatments and a cure. 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. 

(More information for researchers)

About SSCD

The Society for the Study of Celiac Disease is the professional organization of physicians, nurses, dietitians and allied health professionals in North America, Central America and Europe who specialize in the treatment of celiac disease and other gluten-related disorders.

SSCD is committed to advancing the proper diagnosis and treatment of these often-overlooked conditions, and to fostering research into new treatments that may give patients options beyond the gluten-free diet that is the current standard of care.

Yet for the 1 in 133 Americans with Celiac Disease, Eating Gluten-Free is the Only Treatment

Americans’ attitudes toward and understanding of celiac disease fall short, according to a nationwide survey conducted online among 2,081 U.S. adults April 11-13, 2023, by The Harris Poll on behalf of Beyond Celiac, the leading catalyst for a celiac disease cure. The survey found that 28% of Americans assume that people who eat gluten-free are just trying to get attention. However, gluten is dangerous for people with this serious autoimmune disease and following a strict gluten-free diet is the only way the 3.2 million Americans (1 in 133)¹ with celiac disease can control it today.

Other key findings from the survey revealing misunderstandings of the disease include:

• Only one-fourth (27%) realize that getting diagnosed with celiac disease is difficult because many people who have no stomach or digestion-related symptoms don’t get tested for celiac disease and are misdiagnosed with something else.
• Only 40% of Americans know that left undiagnosed or unmanaged, celiac disease could lead over time to lymphoma or other cancers, additional autoimmune problems and/or a range of life-threatening medical conditions.
• Only 43% of Americans think that going to parties and other kinds of socializing are difficult when you are limited to gluten-free food.
• One-third (33%) of Americans incorrectly believe that research to learn more about the causes of and a cure for celiac disease receives as much attention and funding as other serious diseases.

“Celiac disease awareness has come a long way since I founded Beyond Celiac 20 years ago. We still have work to do to achieve our vision of a world in which people with celiac disease can life healthy lives, free from social stigma and fear of gluten exposure,” said Beyond Celiac CEO Alice Bast. “If more Americans understood how dangerous gluten can be for a person with celiac disease, it would be a big step forward for those with celiac disease to be able to live life to the fullest and eat without fear,” Bast added.

Causing damage to the small intestine, celiac disease results in debilitating symptoms, and if left untreated can lead to serious, long-term health problems including infertility and some types of cancer. Though numerous possible treatments are under investigation, currently there are no medications to treat celiac disease and there is no cure. Following a 100% gluten-free diet (no wheat, barley or rye), which may not fully offset the health risks of the disease, is the only way people with celiac disease can get by on a daily basis. 

The full report on the survey results, “The Persisting Myths About Celiac Disease” can be found at https://www.beyondceliac.org/harrispoll/. The report also presents the facts about the disease, and outlines how Beyond Celiac is taking steps to accelerate the quest for a cure.

Survey Methodology

This survey was conducted online within the United States by The Harris Poll on behalf of Beyond Celiac from April 11-13, 2023 among 2,081 U.S. 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. BeyondCeliac.org

Beyond Celiac drives awareness of health inequities in diagnosis of celiac disease 

PHILADELPHIA (May 10, 2023) – Original research using Medicare data from a partnership between Beyond Celiac and the National Minority Quality Forum (NMQF) was presented yesterday at Digestive Disease Week (DDW), the largest international gathering of physicians, researchers and academics in the fields of gastroenterology, hepatology, endoscopy and gastrointestinal surgery. “Results suggest that disparities in healthcare access may contribute to the underdiagnosis of celiac disease, particularly among the non-white population in the United States,” the analysis of data found.

“Correlations between relative prevalence of celiac disease and sociodemographic variables in the U.S.,” was presented by Haley M. Zylberberg, MD, gastroenterology fellow at Columbia University Department of Medicine and the lead study author. The analysis included median income, race, urban areas and proximity to a celiac disease center. The results showed that as the median income increased, so did the prevalence of celiac disease.

The research presented at DDW by Columbia University and Beyond Celiac found that a higher income, living in an urban area and living close to a celiac disease center are all positively correlated with celiac disease prevalence, while being Black or Latino/Hispanic is negatively correlated. Meanwhile, the percent of Latino/Hispanics with Medicare claims for celiac disease decreased as the percentage of relative celiac disease increased. For Black people, this was also largely true. 

“We’re proud to lead the way in documenting and bringing greater awareness to health inequities in celiac disease,” Alice Bast, Beyond Celiac CEO, said. “This is an area that has long been neglected in celiac disease, depriving people of a celiac diagnosis based on race, ethnicity, income and where they live. At Beyond Celiac we are committed to improving the lives of everyone with celiac disease as we search for new treatments and a cure. 

This is the second year that data analysis based on the Beyond Celiac/NMQF project has been presented at DDW. In 2022, preliminary analysis and mapping of claims showed someone’s race and ethnicity and what part of the United States they live in can affect whether they are diagnosed with celiac disease. More than 70,000 Medicare beneficiaries had at least one celiac-disease-related claim in 2016.

Further, 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 2022 nationwide 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.

Read more about the Beyond Celiac commitment to health equity.

About Beyond Celiac

The leading catalyst for a celiac disease cure in the United States and premier nonprofit funder of celiac disease research worldwide, Beyond Celiac is 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.

PHILADELPHIA (APR 10 2023) – Beyond Celiac, the leading catalyst for a celiac disease cure in the United States and premier nonprofit funder of celiac disease research worldwide, will have findings from two research projects presented at Digestive Disease Week (DDW), the largest international gathering of physicians, researchers and academics in the fields of gastroenterology, hepatology, endoscopy and gastrointestinal surgery. The research will be presented as two posters. One, “Frustration, fear, and luck — Factors facilitating celiac disease diagnosis and support seeking behaviors: A Go Beyond Celiac analysis,” is based on data from the Go Beyond Celiac patient registry and is being presented by Beyond Celiac Associate Science Project Manager Erin Miller, MPH. The other, “Correlations between relative prevalence of celiac disease and sociodemographic variables in the United States," is based on the Celiac Index, created by Beyond Celiac in conjunction with the National Minority Quality Forum (NMQF), and is being presented by Haley M. Zylberberg, MD, a gastroenterology fellow at Columbia University who analyzed the NMQF data. “The abstracts highlight the importance of demographic research along with patient-reported outcomes in the understanding and management of celiac disease,” noted Beyond Celiac Chief Science and Strategy Officer Salvo Alesci, MD. “With more than 8,000 patients participating in our registry, we are able to get and share a more complete picture of how a person presents and ultimately gets diagnosed with celiac disease, its complexity and disparities, which will ultimately accelerate the rate by which people get answers,” he added. “Partnerships are key,” noted Alice Bast. “By joining forces with the NMQF, we are finding that there are variables that are influencing diagnosis that are not related to symptoms, and that needs to change. When we say ‘together for a cure,’ we mean everyone. And we are now more able to paint a fuller picture of who does not have equal access to good health choices, healthcare and health outcomes,” she added. The posters will be presented on May 9, 2023, after which time the findings of the research will be shared more broadly.

About Beyond Celiac

Founded in 2003, Beyond Celiac is the leading catalyst for a celiac disease cure 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.

PHILADELPHIA (Mar. 27, 2023) – Beyond Celiac, the leading catalyst for a celiac disease cure in the U.S., today announced five multi-year grants totaling $1.6M as part of a celiac disease research grant program. The grants fund research at prestigious institutions in five countries, making Beyond Celiac the premier nonprofit funder of celiac disease research worldwide. The research projects selected for grants address non-invasive/minimally invasive biomarkers of celiac disease, the microbiome and restoring/inducing immune tolerance to gluten antigens. The projects, researchers and their institutions are: Research Accelerator Grant Awards

• Shed cell transcriptomics for the identification of celiac disease dynamics by Shalev Itzkovitz, PhD, at the Weizmann Institute of Science (Rehovot, Israel) in collaboration with the Schneider Children’s Medical Center (Petah Tikva, Israel)

• Novel Biomarkers of mucosal damage for non-invasive diagnosis and monitoring of celiac disease by Michael FitzPatrick, MRCP, DPhil, (previous Beyond Celiac awardee) at University of Oxford (Oxford, UK)

Established Investigator Awards 

• Identifying predictors for progressive phenotypes of Celiac disease by Rok Seon Choung, MD, PhD, at Mayo Clinic (MN, USA) in collaboration with the Naval Medical Center (MD, USA) and Icahn School of Medicine at Mount Sinai (NY, USA)

• CeliAct(TIV) - Translocation, Inflammation and Virulence: dissecting mechanisms of gluten-microbiota interactions in Celiac Disease by Sónia Gonçalves Pereira, PhD, at the Instituto Politécnico de Leiria (Leiria, Portugal), in collaboration with the Celiac Disease Research Center at Tampere University (Tampere, Finland)

• Preclinical 2D celiac patient-based iPSC-small intestinal epithelial in vitro model by Kati Juuti-Uusitalo, PhD, at Tampere University (Tampere, Finland)

“Beyond Celiac is committed to a competitive process to identify and fund the world's best and most promising research to accelerate research for treatments and a cure for celiac disease, and to help our celiac disease community members live longer, fuller lives,” noted Alice Bast, Beyond Celiac CEO. “We have committed more than $3M to directly fund celiac disease research in the last several years as part of our comprehensive Science Plan to have treatments toward a cure by 2030,” she added. While continuing its work as a top recruiter for celiac disease clinical trials, Beyond Celiac led a rigorous grant selection process in the last quarter of 2022. The application process was competitive, with review by the members of the Beyond Celiac Scientific Advisory Board (SAB), led by Beyond Celiac Chief Science and Strategy Officer Salvo Alesci, MD, PhD. Working from recommendations by the SAB, final award selections were based on fit with established funding priorities. Members of the SAB who served on the review committee include: 

• Lisa Fahey, MD, is the co-director of the Center for Celiac Disease at Children’s Hospital of Philadelphia (CHOP)

• Benjamin Lebwohl, MD, is the director of clinical research at the Celiac Disease Center at Columbia University

• Dale Young Lee, MD, MSCE, is the director of the Celiac Disease Program and medical director of clinical nutrition at Seattle Children’s Hospital

• Daniel Leffler, MD, is the director of research, Celiac Center at Beth Israel Deaconess, associate professor of medicine, Harvard Medical School, and medical director, Takeda Pharmaceuticals

• Edwin Liu, MD, is the director of the Colorado Center for Celiac Disease at Children’s Hospital Colorado and professor of pediatrics, gastroenterology, hepatology and nutrition, University of Colorado School of medicine

• Stephen Miller, PhD, is the director of the interdepartmental immunobiology center at Northwestern University Feinberg School of Medicine and research professor of microbiology-immunology

• Joseph Murray, MD, is a professor of medicine at Mayo Clinic and a gastroenterologist in the division of gastroenterology and hepatology, department of internal medicine

• Kari C. Nadeau, MD, PhD, is the John Rock Professor of Climate and Population Studies, Chair, Department of Environmental Health at Harvard T.H. Chan School of Public Health

Donors and philanthropists interested in supporting Beyond Celiac research initiatives can direct contributions to innovative projects. 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 U.S., 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 is creating a future in which people can live healthy lives and eat without fear – a world Beyond Celiac. www.BeyondCeliac.org.

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.

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.   ###

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.  

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.