By Associate Director of Communications, Bailey Arman

You may have heard someone remark that “everyone is allergic* to gluten these days,” or “Nobody was gluten-free when I was young.” These statements are often tinged with confusion, contempt, or both. Maybe you yourself have idly wondered why your colleague or a cousin has suddenly gone gluten-free. Why is there so much buzz around gluten?

Why Do People Avoid Gluten?

For people with the autoimmune condition called celiac disease, the gluten-free diet is the only medical treatment available to alleviate symptoms.

When someone with celiac disease eats gluten, their immune system goes haywire and begins to attack and destroy the small intestine. The small intestine’s job is to absorb nutrients and vitamins, so a damaged small intestine can lead to a whole host of symptoms, such as malnutrition, osteoporosis, fatigue and infertility. In severe cases, it can even lead to death.

So for those with celiac disease, the gluten-free diet isn’t a fad diet to lose weight—it is their one and only medicine!

The History of the Gluten-Free Diet

To understand the history of the gluten-free diet, we need to understand the history of celiac disease.

What surprises most people, even patients, is that celiac disease has existed for centuries. The name itself, celiac, first appeared in literature in the second century AD, when Greek physician and medical writer Aretaeus of Cappadocia wrote about “the koeliac affection.” (The word koelia simply means abdomen in Greek!)

We even have physical evidence of celiac disease dating to that time period. In 2008, an archaeological dig in Cosa, Italy revealed an 18-20-year-old woman from the first century AD, with signs of failure to thrive and malnutrition. The skeleton also revealed the presence of the genes associated with celiac disease, HLA-DQ2.5, and damage that is typically caused by celiac disease.

In the centuries between then and now, undoubtedly millions have suffered from celiac disease without answers. It was only in the past century or so that we have made progress in understanding celiac. In 1887, Dr. Samuel Gee wrote the first modern medical description of celiac disease and hypothesized that it could be treated through diet; in 1924 Dr. Sidney Haas began to treat children with celiac disease by feeding them a diet of primarily bananas (which are definitely gluten-free); and in the 1940s Dr. Willem Dicke theorized that wheat triggered celiac disease and developed a wheat-free diet.

The gluten-free diet as we know it today was continually refined in the late 20th century, and reached mainstream awareness in the 21st century, with a major boom occurring around 2010. In the decade or so since, there has been an explosion of brands offering gluten-free options, and restaurants began creating gluten-free menus.

So it’s clear from history that celiac disease isn’t new. What’s new is the revolutionary treatment: the gluten-free diet.

The Effects of Improved Medical Care

If you don’t remember anyone on the gluten-free diet prior to the 21st century, there is one obvious, if morbid, answer: most of the people who would have benefited from a gluten-free diet died before their doctors figured out that they had celiac disease. They simply died.

But with the advent of modern medicine—such as the development of the endoscopy process in the 1950s that is still used to diagnose celiac disease today, and the development of the TtG blood test in 1997 to screen for celiac—we have been able to diagnose celiac disease in more patients than ever before, faster than ever before, and have a treatment to help them heal. That is in some part why so many more people eat gluten-free today: they aren’t dying. They have a long-awaited treatment for a previously deadly autoimmune disease.

A Note on Gluten Intolerance

For those with celiac disease, the gluten-free diet is not a choice, but a necessity. It’s the only medication they have.

But not everyone who eats gluten-free has celiac disease.

Some people who eat gluten-free have non-celiac gluten sensitivity (NCGS), often called a gluten intolerance by the average person. Folks with NCGS have tested negative for celiac disease, but feel better on the gluten-free diet. There are multiple theories for why that may be, but at the end of the day, if the gluten-free diet makes them feel better and does not harm them, why shouldn’t they be on it?

Other conditions that may lead people to eat gluten-free include irritable bowel syndrome (IBS), inflammatory bowel disease (IBD), and more.

Potential Treatments Beyond the Gluten-Free Diet

Patients with severe food allergies manage their medical condition by avoiding the troublesome food and relying on auto-injectors (such as EPIPEN®) to manage accidental exposure. Patients with diabetes manage their medical condition by carefully monitoring their diet and using insulin to maintain proper blood sugar levels. Patients with celiac disease only have the gluten-free diet, but in the coming years, there may be additional treatment options developed to manage this autoimmune condition.

Beyond Celiac is committed to being on the frontline of this research and developing a treatment for our community by 2030. There are currently 16 drugs for celiac in clinical trials, and we fully believe that our community could soon have options beyond the gluten-free diet. Help us make it a reality by getting involved today!

*Although many people use the term “allergic,” there is no such thing as a gluten allergy. Learn more about the difference between celiac disease and a wheat allergy.

Beyond Celiac announces the creation of Beyond Celiac Investments (BCI), an investment program to accelerate the development of treatments and a cure for celiac disease by leveraging the speed and scale of venture capital and capital markets. BCI launches with an initial funding of $2 million and additional capital will be raised through donations.

“Our research has uncovered no venture funds with a specific focus on celiac disease or autoimmune disorders, though many venture funds invest in companies that have the potential to address it,” Alice Bast, President and CEO, Beyond Celiac, notes. “Our plans for BCI are to invest significant resources to identify promising treatments under development as well as those that have been investigated or approved for other purposes that also might benefit celiac disease patients. Our scientific and business expertise in selecting and supporting these treatments reduces risk, cost and time to market for potential celiac disease treatments,” she adds.

BCI is using the Development Catalyst business model, designed to increase development and commercialization activity across the Celiac treatment spectrum. The model enables drug development through nonprofit means. Using donated funds also means that all financial returns from BCI’s investments return to Beyond Celiac to be used for future investments and grants to benefit the celiac disease population and the Beyond Celiac mission to accelerate research for a cure.

Because BCI uses donated funds through a venture philanthropy model, investing can begin immediately. “BCI’s Development Catalyst investment strategy will focus dollars where we can have the greatest impact on the most promising investments. We are building relationships with targeted venture capital firms and corporate venture capital efforts at pharma companies that understand the unique role that both Beyond Celiac and Beyond Celiac Investments can play in sourcing, due diligence and supporting scientific and commercial success of portfolio companies across pre-commercial and commercial stages,” Bast explains.

The Beyond Celiac Investment Team includes Alice Bast, President and CEO; Jordan Dubow, M.D., Chief Medical Officer; Debra Silberg, M.D., Ph.D., Chief Scientific Officer; and Eric White, Fund Manager.

BCI fulfills the fourth phase in the Beyond Celiac Science Plan, developed in 2021 to drive the search for a cure by 2030 so that the 3.2 million people diagnosed with the disease can live healthy lives and eat without fear of gluten exposure. The Science Plan has four scientific priorities: evidence generation, translational research, clinical trials and drug repurposing. The first three phases of the plan are well underway and the drug repurposing priority is now expanded to include investments in all types of treatments. Beyond Celiac is the nation’s top recruiter for celiac disease clinical trials and works with pharmaceutical companies to ensure that trials are designed with the patient perspective in mind. Beyond Celiac is the largest 501(c)3 celiac disease research grant funder, including five research grants totaling $1.6 million in 2023.

Inquiries about investing should be directed to [email protected].

By Kate Ariano

Reach Beyond Celiac Ambassador Kate Ariano has experienced the impacts of celiac disease from her high school years to her early 20s. While managing the diet has always been her number one focus, Kate shares how she's dealt with some of the mental health impacts of celiac disease, like the stress of maintaining a budget on the gluten-free diet.

In her first article, Kate shares her perspective on how the price of gluten-free food influenced her lifestyle and some of the tactics she uses to combat the burden.

How the price of gluten-free products can negatively impact your lifestyle

I spend $80 in groceries every week—one person cooking one meal a day.

Some people may think that’s a big chunk of change. Others might identify with the spend, perhaps even forking out more than I do each week. But is your food your medicine like mine is?

The gluten-free diet is currently the only treatment for individuals with celiac disease, an autoimmune disorder that damages the small intestine upon ingesting the protein gluten.

That means every week, I spend $8 on a package of four bagels, another $8 on a smaller-than-average loaf of bread, and I stock up on up-charged pasta. And, if I play my cards right, I make out like a bandit spending only $7 on a pack of doughnuts.

Spending more on gluten-free groceries is the harsh reality of the 1 in 100 Americans with celiac disease.

I consider myself one of the lucky ones nowadays; I live back at home with my parents, so I don’t have to buy enough food to cook every meal. I have a salary, I have reliable transportation, and I have access to three different grocery stores in a 10-minute radius.

But as a college student, just a couple years ago, my life wasn’t as predictable.

The stress of grocery shopping as a college student

When I think back to grocery runs with my housemates, I recall the overwhelming sense of dread that overtook me in checkout lines. I’d let my friends go first, embarrassed that they might gawk at my receipt.

I never wanted to spend that much on groceries at 21 years old.

We’d hit two, sometimes three, grocery stores on a Sunday just so I could get the products I needed. Smaller grocery chains didn’t have the expansive “Health Foods” aisle that my stores now do. It was mortifying.

According to a study out of the Columbia University School of Medicine, the cost of gluten-free food products, “while declining over the past 10 years, remains significantly higher than their wheat-based counterparts.” Why does my food—the only treatment for my disease—have to cost more?

I find myself asking questions like these rhetorically, knowing my pleas for more affordably-priced food are held captive by the cost of the ingredients used to make them. I get it. But that doesn’t mean it doesn’t suck.

When I think about the college student just like me who’s checking menus to see how much more the gluten-free hamburger bun is before going out with friends, it keeps me asking. It keeps me fighting.

Strategies for managing money: know that you’re not alone

When it comes to anxiety around food and money, finding a path forward isn’t always easy. Mental health is a much larger component of celiac disease than I think people realize. For me, so much of the invisible impact of this disease is about managing my diet on a budget.

But I’m finding my way. Every two weeks, I sit down and review my grocery spending like I’m at a business meeting. I use resources like the Beyond Celiac Gluten-Free on a Budget flyer to identify good deals, utilize coupons, and I look toward naturally gluten-free recipes to fill my plate. I may take a little more time to make my grocery lists than my friends, but you can’t put a price on peace of mind.

That peace is something I’m so lucky to have found. In a day and age where talking about mental health has become so much less stigmatized, it’s encouraging to know that the conversations are happening more frequently and honestly. The burden of going through this alone no longer weighs on my shoulders. The voices rallying for our community are louder than ever.

We are not alone.

So whether you're managing the gluten-free diet while living your best life in college, spending your 20s just trying to figure your life out (like me), or you’re just struggling regardless of where you are in life, know that I see you. We hear you. And as the great cast of High School Musical once said: we’re all in this together.

We are thrilled to share some exciting news! Beyond Celiac and the Beyond Celiac Community Summit were featured on the 3rd Hour of TODAY. This incredible moment took place on Monday, October 2, when co-host Dylan Dreyer recounted her experience attending and speaking at our Summit on September 30.

During the segment, 3rd Hour of TODAY's Dylan Dreyer, whose young son Calvin was recently diagnosed with celiac disease, spoke passionately about the recent Summit. She emphasized the importance of the event in bringing together members of the community. TODAY featured images from the summit on screen, capturing the spirit of unity and support that permeated the entire gathering. It was a truly inspiring moment, showcasing the strength and resilience of our community. It was also an amazing opportunity to spread awareness about celiac disease to the show's millions of viewers!

The Beyond Celiac Community Summit was a tremendous success, allowing attendees to share their experiences and find comfort in knowing they are not alone in their journey. The day was a testament to the power of solidarity and understanding, reinforcing our commitment to supporting one another in our fight against celiac disease.

Dylan Dreyer has teamed up with Beyond Celiac to raise awareness and support our mission of accelerating research for treatments and a cure for celiac disease. Being the keynote speaker at our Summit was one of her first projects as a Beyond Celiac partner.

Next up, Dylan will emcee the Step Beyond Celiac 5K in the Boston suburb of Waltham, Massachusetts, on October 14. People interested in participating in either event can visit StepBeyondCeliac.org for more information.

“I am thrilled to be joining forces with Beyond Celiac to make a difference in the lives of those living with celiac disease,” said Dreyer. “When my son Calvin was diagnosed, we got some answers, but I also got firsthand perspective on the struggles families face every day. By raising awareness and supporting research efforts, we can bring much-needed attention to this condition and work towards finding better treatments and, ultimately, a cure.”

Through this partnership, Dylan and Beyond Celiac aim to break down barriers, promote understanding, and catalyze critical research endeavors that will pave the way for better treatments and improved quality of life for those living with celiac disease.

NBC News meteorologist and co-host of the 3^rd Hour of TODAY, Dylan Dreyer, has teamed up with the non-profit organization Beyond Celiac to raise awareness and support their mission of accelerating research for treatments and a cure for celiac disease. This dynamic partnership aims to shed light on the challenges faced by individuals and families affected by celiac disease while driving groundbreaking research efforts to bring relief and hope to millions worldwide.

Celiac disease, an autoimmune disorder triggered by the ingestion of gluten, affects an estimated 1 in 133 Americans, making it one of the most common genetic conditions in the world. Dylan Dreyer's personal connection to the cause brings an authentic and heartfelt commitment to the campaign. As a mother of a young son diagnosed with celiac disease, Dreyer understands the challenges that families undergo in navigating a gluten-free lifestyle while dealing with the physical and emotional aspects of the condition.

Dreyer will be the keynote speaker at the Beyond Celiac Summit for the Celiac Community in Greenwich, Connecticut, on September 30, and the emcee at the Step Beyond Celiac 5K in Boston suburb Waltham, Massachusetts, on October 14. People interested in participating in either event can visit BeyondCeliac.org for more information.

"I am thrilled to be joining forces with Beyond Celiac to make a difference in the lives of those living with celiac disease," said Dreyer. "When my son Calvin was diagnosed, we got some answers, but I also got firsthand perspective on the struggles families face every day. By raising awareness and supporting research efforts, we can bring much-needed attention to this condition and work towards finding better treatments and, ultimately, a cure."

Beyond Celiac is a leading advocate for the celiac disease community, dedicated to improving the quality of life for those living with the condition. Their initiatives focus on driving research, advocating for policy changes, and promoting public awareness of celiac disease.

"We are honored to have Dylan’s support as we strive to elevate the conversation around celiac disease and its impact on individuals and families," said Alice Bast, CEO of Beyond Celiac. "Her involvement will undoubtedly bring more attention to the cause, help our community to eat without fear, and live life to the fullest."

Through this partnership, Dylan Dreyer and Beyond Celiac aim to break down barriers, promote understanding, and catalyze critical research endeavors that will pave the way for better treatments and improved quality of life for those living with celiac disease.

Two flavors of Koyo Rice Ramen Noodle Soup are labeled gluten-free, though they currently include malt syrup in their list of ingredients. The manufacturer has clarified that the malt syrup is derived from corn, and they intend to update the ingredients list accordingly.

The two flavors are:

• Koyo Rice Ramen Noodle Soup Spicy Kimchi  

• Koyo Rice Ramen Noodle Soup Wakame Miso

The FDA has clarified that the terms "malt syrup" and "malt extract" without qualification refer to "barley malt syrup" and "barley malt extract." The FDA requires manufacturers to revise labels in cases where ingredient designations are inaccurate.

The gluten-free certification on the package is that of the BRCGS Gluten-Free Certification Program (GFCP), a food safety-based gluten management system for manufacturers, which is endorsed by Beyond Celiac. 

BRCGS' Response

According to a spokesman, "BRCGS has been made aware of two Koyo brand Rice Ramen Noodle Soup products bearing the Beyond Celiac trademark which indicate the use of Malt Syrup or Malt Sugar in the ingredients list. BRCGS has contacted the manufacturer and they have confirmed that both ingredients are derived from corn and not barley. The manufacturer has provided documentary evidence from an accredited 3rd party laboratory spanning the last three calendar years confirming that gluten was not detected in either product.

The manufacturer has agreed to amend both product labels to indicate corn as the source in both ingredients. They are also required to re-submit the amended product labels to BRCGS for formal approval at the earliest opportunity. BRCGS would like to reassure the celiac community that this is a labeling error and that the products are verifiably gluten-free. The factory in which these products are made is dedicated gluten-free and has a valid certification to our Gluten-Free Certification Program.

We apologize for any confusion or distress caused to consumers."

Beyond Celiac Comments

Claire Baker, Senior Communications Director for Beyond Celiac added, “Our foremost concern is with the health of our community. We are very pleased that no one with celiac disease or gluten sensitivity has been at risk if they have consumed either of these soups.” She went on to say, “Our community needs for manufacturers to adhere strenuously to the FDA labeling guidelines to prevent confusion and maximize safety.”

Join Beyond Celiac and fellow gluten-free community members at the Beyond Celiac Community Summit this September 30 in Greenwich, Connecticut. For our inaugural Summit, the theme is game shows, so get ready to spin that wheel and play to win. We'll have all your favorites covered, from Wheel of Gluten-Free Fortune to Celiac Family Feud! This is your chance to come on down and join the gluten-free fun!

This full-day event includes gluten-free meals, games, and expert speakers. The schedule is packed with panelists from various fields, including registered dietitians, gastroenterologists, and more. Our speakers will give you the inside scoop on celiac disease, so you'll be a Jeopardy-level champion when it comes to talking about this serious autoimmune disease. And don't worry, we won't be asking any tricky questions like Who Wants to Be a Millionaire, we just want to make sure you have all the knowledge and resources you need to live your best gluten-free life.

Summit Agenda

8:00    Registration, vendor expo, gluten-free breakfast

9:00    Welcome from special celebrity emcee, Jenna Wolfe

9:05    Introductory remarks by Beyond Celiac CEO Alice Bast 

9:10     Icebreaker game

9:30    Ask Me Anything panel with Alan Ehrlich, MD, Ritu Verma, MD, Eugenia Uche-Anya, MD, MPH, and Sarah Yourman, RDN, CDCES

10:30  Break, vendor area, move to breakouts

10:45  Breakout Sessions:

• Celiac 101
• Gluten-free Cooking with Matt Weinstein of Glass of Weinstein
• Science of a Cure
• Gluten-free Travel with Jen of The Nomadic Fitzpatricks

11:45  Break, vendor expo

12:00 Buffet-style gluten-free lunch with speaker and cookbook author Terry Walters

1:00    Living Your Best Gluten-Free Life Panel with Erin Smith, Liz Purvis, Emily Shaw, and Phil of Phil Hates Gluten 

2:00    Celiac Family Feud

2:30    Patient Empowerment with Cherise Shockley

3:00    Break, vendor expo

3:15    Breakout Sessions featuring Beyond Celiac Ambassadors

4:15    Closing keynote by the TODAY Show's Dylan Dryer

4:30    Wine, soft drink, and gluten-free hors d’oeuvres reception

5:15    Goodbyes and official end of event

Check out the full list of speakers, learn more, and get tickets at beyondceliac.org/summit23

Exciting developments are underway in the celiac disease space as the Beyond Celiac Coalition proudly announces the addition of three esteemed members to its ranks. This multi-stakeholder pre-competitive alliance, established in 2022, has garnered widespread support from leading organizations and individuals dedicated to advancing the understanding and treatment of celiac disease. With the recent inclusion of the American Gastroenterological Association (AGA), Dr. Jocelyn Silvester of Boston Children's Hospital, and Dr. Marie Robert of Yale School of Medicine, the Coalition's collaborative efforts gain further momentum towards achieving its ultimate goal.

Unifying Experts for Progress

The Beyond Celiac Coalition has brought together renowned celiac disease experts, healthcare providers, industry leaders, and research institutions in an unprecedented collaboration. Our collective mission is to identify and address critical barriers in celiac disease diagnosis and treatment development. Central to this endeavor is the group's focus on overcoming patient barriers to inclusion, engagement, participation, and retention in clinical trials, while also establishing the Coalition as a platform for sustained engagement with the FDA.

The AGA's Vital Role

The inclusion of the American Gastroenterological Association (AGA) within the Beyond Celiac Coalition strengthens the alliance with an influential and trusted voice in the field of gastroenterology. With over 16,000 members worldwide, the AGA is recognized for its unwavering commitment to advancing the understanding and treatment of gastrointestinal disorders. By joining forces with the Coalition, the AGA will play a pivotal role in shaping strategic directions and initiatives focused on patient-centric innovation in celiac disease.

Distinguished New Members

The Coalition's growth is further amplified by the addition of two distinguished individuals: Dr. Jocelyn Silvester of Boston Children's Hospital and Dr. Marie Robert of Yale School of Medicine and Yale New Haven Hospital. Dr. Silvester's expertise in pediatric gastroenterology and her significant contributions to celiac disease research make her a highly respected figure in the field. Dr. Robert, renowned for her expertise in GI pathology, brings invaluable insights and experience to the Coalition's collective knowledge. Their inclusion reinforces the importance of collaborative efforts in driving meaningful change.

Gratitude is extended to all members who have generously dedicated their time and effort to support the launch of the Beyond Celiac Coalition and shape its strategic priorities. The following individuals and organizations have played an integral role:

• Dr. Robert P. Anderson
• Anokion
• imaware
• Dr. Edwin Liu
• Dr. Joseph A. Murray
• Provention-Bio
• Dr. Marisa Stahl
• Dr. Adam C. Stein
• Takeda Pharmaceuticals

The Beyond Celiac Coalition and its new members mark significant milestones in the quest for advancements in celiac disease research and treatment. With an ever-growing network of experts and organizations dedicated to overcoming barriers and fostering patient-centric innovation, the Coalition is positioned to make a substantial impact. Through collaboration and continued engagement, the future looks promising for those affected by celiac disease, as the Coalition paves the way for meaningful change and improved outcomes.

Learn more about the Beyond Celiac Coalition.

Download the 2023 Beyond Celiac Coalition Brochure.

By Alice Bast, Beyond Celiac CEO

I am excited to share the news that the Beyond Celiac communications team has been recognized for their outstanding efforts in spreading knowledge about celiac disease! The team’s strategic approach and unwavering dedication to elevating the patient voice have earned them the well-deserved Nonprofit/Government Communications Team of the Year award in the prestigious Ragan & PR Daily’s Communicator of the Year Awards. In the realm of healthcare communication, few accomplishments are as commendable as effectively raising awareness about a widely misunderstood disease. The Ragan award recognizes that Beyond Celiac is doing this job at an unmatched level.

At Beyond Celiac, it is our mission to illuminate the often-misunderstood world of celiac disease, shedding light on the seriousness of this autoimmune condition and the various symptoms it encompasses. My comms team works day in and day out to bridge the knowledge gap between the general public and patients who need the gluten-free diet as a medical necessity.

To achieve this, the Beyond Celiac communications team harnesses the power of data and storytelling. Quantitative and qualitative research serve as the foundation for the compelling stories, reports, shareable social media posts, infographics, and informative emails that earned Beyond Celiac this award. My team leverages multiple channels to reach diverse audiences, maximizing our impact and ensuring that our messages resonate far and wide. We do this in a way that is inviting and innovative, colorful and compelling as evidenced by the way people engage with our messages on Instagram, Facebook, Twitter, Tik Tok, YouTube, LinkedIn and through emails and on our website.

Voices of Celiac Campaign

Voices of Celiac is one of our outstanding initiatives. By showcasing the diagnosis stories of individuals affected by celiac disease, the team fosters empathy and understanding in those who may not understand how difficult it is to get diagnosed with celiac disease and manage the gluten-free diet. The stories told by people with celiac also resonate with folks who are going through similar challenging experiences.

Through a dedicated page on our website, press releases, media coverage and social media platforms, these narratives have found their way into the hearts and minds of countless individuals, creating a powerful ripple effect of awareness and compassion. We are truly putting a face to and giving a voice to those with celiac disease. And that face and those voices are being recognized and heard outside the celiac disease community. 

Polling the Public on their Perceptions

Our groundbreaking "2022 Landscape of Celiac Disease Report – Beyond Celiac," produced in collaboration with The Harris Poll, provided invaluable insights into the way the general public perceives celiac disease and gluten sensitivity.

With this report, the team armed themselves with concrete data to fuel their communication efforts. They expertly disseminated the findings through press releases, dedicated landing pages, mass emails, and a targeted social media campaign. Notably, articles were posted on the other organization’s websites, spotlighting specific takeaways, including the disparities among Black Americans in awareness and treatment of celiac disease.

Words Have Power

The impressive results of the Beyond Celiac communications team's endeavors speak for themselves. Sharing close to 200 unique patient stories that underscore the gravity of celiac disease gives a voice to those who have long suffered in silence, and The Landscape of Celiac Report landing page has received nearly 3,000 page views, while the report itself reached an impressive 997 Associated Press outlets. Additionally, HealthDay, a renowned syndicator of health news, featured an enlightening story that reached esteemed publications like US News & World Report, amplifying the crucial message of Beyond Celiac.

It is through the tireless work of passionate individuals like those on the Beyond Celiac communications team that breakthroughs in disease awareness are made possible. And with this greater understanding, we are able to work together with our community to accelerate research for treatments and a cure and have real hope that we will not be forever shackled by the confines and fallibility of the gluten-free diet. By shining a spotlight on the ways celiac disease can affect everyday life, Beyond Celiac has brought about tangible change, dispelling misconceptions and fostering a greater understanding of this autoimmune disorder. The team’s commitment to transforming lives through communication has truly set them apart, and their recognition as the Nonprofit/Government Communications Team of the Year is a testament to their outstanding achievements.

As we celebrate the team’s recognition as the best of the best in communicating about and with the celiac disease community, we also take this moment to reflect on the power of effective communication and the profound impact it can have on individuals and communities. Let us champion the values of understanding, compassion, and knowledge in our own efforts to make the healthcare field—and ultimately the world—a better place.

Beyond Celiac is making strides toward health equity for all individuals affected by celiac disease. Through a series of initiatives and partnerships aimed at reducing disparities and increasing access to resources, Beyond Celiac is at the forefront of increasing diversity in the celiac disease space.

Studies, including some helmed by Beyond Celiac, are beginning to uncover notable disparities in celiac disease diagnosis and treatment. More work is needed in this area, which is why Beyond Celiac has stepped up to lead the way.

Partnerships and Research

Since 2020, Beyond Celiac health equity work is being accomplished through several strategic partnerships, including with the National Minority Quality Forum (NMQF), a leading advocacy organization on issues of health disparity. Through this partnership, Beyond Celiac is examining and addressing health inequities in the diagnosis and treatment of celiac disease. Beyond Celiac and NMQF 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. 

Beyond Celiac is publishing research from this Index at the 2023 Digestive Disease Week (DDW) conference. The poster, “Correlations between relative prevalence of celiac disease and sociodemographic variables in the United States,” is being presented by Haley M. Zylberberg, MD, a gastroenterology fellow at Columbia University who analyzed the NMQF data. A poster presented at DDW 2022 also highlighted racial and ethnic disparities in celiac disease diagnosis with data from the Index.

In addition, Beyond Celiac has teamed up for a multi-year partnership with Takeda Pharmaceutical Company to identify and reduce disparities in celiac disease diagnosis and management, aiming to raise awareness and help minority patients participate in clinical trials.

“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.

Community Guidance

Beyond Celiac has also assembled a Diversity, Equity, and Inclusion (DEI) webpage, committee, and advisory board, which is dedicated to ensuring that the organization's policies and practices reflect its commitment to equity and inclusivity. This advisory board is composed of dedicated individuals working to promote cultural competency, diversity efforts, and sensitivity within and outside of the organization. DEI advisory board members include:

• Elizabeth Valencia, MD, JD, FCLM - Enterprise Associate Dean of Diversity Equity and Inclusion for Mayo Clinic Alix School of Medicine for Arizona, Florida, Minnesota campuses; medical expert in Breast Cancer Imaging & Intervention at Mayo Clinic Rochester, MN
• Liz Purvis - Advocate. Black and mixed-race content creator living with celiac disease. Shares educational materials, reviews, and recipes on the Instagram account @yeet.that.wheat 
• Monique Germone, PhD, BCBA - Pediatric psychologist of the Colorado Center for Celiac Disease at Children’s Hospital Colorado and associate professor at the University of Colorado, School of Medicine
• Amanda Cartee, MD - Gastroenterologist, University of Alabama at Birmingham Hospital; assistant professor in the Division of Gastroenterology and Hepatology at the University of Alabama at Birmingham
• Juanita Belton, PA-C, MPH - Physician assistant in gastroenterology at Boston Medical Center with a subspecialty in Inflammatory bowel disease and instructor at Boston University Medical Center’s Dempsey Center for Digestive Disease

Elevating the Patient Voice

Finally, Beyond Celiac is collecting and sharing diverse patient stories to raise awareness about the unique challenges faced by individuals with celiac disease from all backgrounds, races, genders, and ages through our award-winning Voices of Celiac campaign. By gathering and highlighting these experiences, the organization hopes to inspire greater understanding and empathy for those living with this condition and to foster a more inclusive and supportive community. As community member Jessica shared, celiac disease was initially dismissed as a possibility due to her ethnicity. Stories like these are important to share and expand what medical professionals believe to be the “face” of celiac disease.

"Our vision for a world Beyond Celiac is one in which all people have equal access to good health choices, healthcare, and health outcomes," says Alice Bast, CEO of Beyond Celiac. "We are committed to reducing disparities in the diagnosis and treatment of celiac disease, and to working with diverse communities to ensure that everyone can live their healthiest life. By partnering with organizations like the NMQF and Takeda, creating a DEI Committee and Board, and collecting diverse patient stories, we are taking important steps toward achieving this goal. We are honored to be the leading organization in promoting health equity in celiac disease.”

To learn more about Beyond Celiac health equity efforts, visit: beyondceliac.org/celiac-disease-and-health-equity