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.

The post Health is Wealth; Financial Burden of Gluten-Free Diet appeared first on Beyond Celiac.

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.

The post Beyond Celiac featured on 3rd Hour of TODAY appeared first on Beyond Celiac.

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.

The post 3rd Hour of TODAY’s Dylan Dreyer joins forces with Beyond Celiac to drive celiac disease awareness and research appeared first on Beyond Celiac.

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.”

The post Koyo Brand Rice Ramen Noodle Soup Product Advisory appeared first on Beyond Celiac.

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

The post Come on down to the Beyond Celiac Community Summit! appeared first on Beyond Celiac.

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.

The post Beyond Celiac Coalition Welcomes New Members to Drive Progress in Celiac Disease Research and Treatment appeared first on Beyond Celiac.

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.

The post Beyond Celiac Comms Team Wins Prestigious Award appeared first on Beyond Celiac.

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 

The post Beyond Celiac Leading the Way for Health Equity in Celiac Disease appeared first on Beyond Celiac.

May 2023 marks Celiac Awareness Month and the 20th anniversary of Beyond Celiac! Yes, you read that right—two whole decades of tireless service to the celiac disease and gluten-free community. This milestone is not just a mere number, but a testament to our organization’s unwavering commitment towards empowering and advocating for those affected by celiac disease. As we raise a gluten-free toast to this remarkable achievement, which we couldn’t have done without the support of our amazing community, let’s take a moment to reflect on our journey and revel in the magnificent milestones we have achieved so far. From pioneering patient advocacy to driving cutting-edge research, we have been at the forefront of the celiac disease movement. 

As we look back on the past twenty years, we can’t help but feel proud of our accomplishments as the premier patient-advocacy organization for celiac disease. Without further ado, let’s take a glance at our highlight reel – a glimpse of some of the many awe-inspiring achievements that have shaped our journey!

20 Years of Service – 20 of our Notable Achievements

1. Driven by her desire to help others get diagnosed early, Alice Bast defies experts and lands a grant from the National Institutes of Health and Beyond Celiac is born!
2. Ed Snider, founder of the Philadelphia Flyers, becomes the first Beyond Celiac Board Member.
3. Beyond Celiac launches the first ever National Awareness Campaign with Heidi Collins of CNN as our spokeswoman and in partnership with Quest Diagnostics, which resulted in increasing testing for celiac disease by 40%.
4. Beyond Celiac launches the first celiac disease Continuing Medical Education Program, training 900 medical professionals and resulting in an estimated 6,000 new diagnoses.
5. Beyond Celiac leads the way in making gluten-free food available and more affordable with the launch of the first ever gluten-free expo, Appetite for Awareness. Events held in 6 cities across the country in partnerships with Walmart, Whole Foods, Wegmans and more lead to the explosion of gluten-free packaged goods available everywhere.
6. Beyond Celiac partners with Anheuser-Busch to launch the first ever mainstream gluten-free product into the marketplace, Redbridge gluten-free beer.
7. Beyond Celiac is the first patient advocacy organization to adopt a social media strategy, joining Facebook in October 2009 and reaching 100,000 supporters by 2014 then quickly expanding to YouTube, Twitter, Instagram, LinkedIn.
8. Beyond Celiac launches GREAT Kitchens and hosts the first Gluten-Free pavilion at the National Restaurant Association annual convention, resulting in driving restaurant interest in gluten-free offerings nationwide.
9. Beyond Celiac launches the first-ever family testing initiative, Seriously Celiac Disease PSA and the Talk. Tell. Test. campaign.
10. Beyond Celiac, working with the FDA, partners with the best gluten-free product certification in North America, the Gluten-Free Certification Program, so our community can have safe and accurate gluten-free food labeling.
11. Beyond Celiac spearheads a study with a grant from the FDA demonstrating that gluten in medications is a significant issue for the celiac disease community that needs to be addressed, and launches the GREAT Pharmacists training program.
12. Alice Bast and other Beyond Celiac leaders share our needs and concerns with leading policymakers and researchers nationally and internationally at the FDA GREAT3 workshop in Washington DC and the 14th International Coeliac Meeting.
13. Beyond Celiac holds the first multi-disciplinary celiac disease Research Summit, putting patients at the center of research.
14. Beyond Celiac presents our innovative patient engagement model to improve celiac disease diagnosis rates at Stanford Medicine X, an annual gathering about the future of medicine and the role technology plays in improving health.
15. Beyond Celiac creates a patient registry for people with celiac disease and their families, Go Beyond Celiac.
16. Beyond Celiac becomes the first and only advocacy organization to launch a science department and hire a CSO and convene the first annual Beyond Celiac Research Symposium.
17. Beyond Celiac awards grants for three celiac disease research projects and presents our own research on brain fog at the 2019 International Celiac Disease Symposium.
18. The COVID-19 pandemic brings the world to a halt, and Beyond Celiac pivots to provide information to the community. We release surveys through our patient registry Go Beyond Celiac to learn more about how COVID affects the celiac disease community specifically. 
19. Beyond Celiac continues with its dedication to research and awards a grant to a research team from Sheffield, UK, who previously found that gluten can cause brain changes in those with celiac disease.
20. We hosted another Research Symposium, bringing together leaders in research and clinical practice to discuss the future of celiac disease.
21. Bonus—In 2023, we have already granted five research awards, becoming the leading organization funding celiac disease research. The rest of the year is sure to bring even more progress for the research community!

Shaping the Future of our Community

As we continue our journey toward treatments and a cure, we can’t help but be filled with excitement and anticipation. What new breakthroughs and advancements will we witness? Which groundbreaking celiac disease treatment currently in clinical trials will finally be approved by the FDA? The possibilities are endless, and we can’t wait to witness them unfold!

Before we wrap up, we would like to take a moment to express our sincerest gratitude to you, our beloved community. It is your unwavering support and resilience that has fueled our passion for advocating and empowering those affected by celiac disease and non-celiac gluten sensitivity. You are the reason why we do what we do – to ensure that no one ever feels alone or overlooked in their celiac journey. We share your vision of a world Beyond Celiac, where timely diagnosis, proper follow-up, access to safe food, and diverse treatment options are the norm.

If you would like to join us in this mission, there are several ways to get involved. You can donate directly to support our work, sign up for our patient registry to contribute to vital research, or attend our events like virtual Town Halls or Step Beyond Celiac 5Ks. Every little action counts, and together, we can make a significant impact in the lives of those affected by celiac disease.

Once again, thank you for being a part of our journey. We can’t wait to see what the future holds for us and the celiac disease community!

The post Beyond Celiac Celebrates 20 Years of Service appeared first on Beyond Celiac.

A coalition of non-profit organizations from around the globe builds on their Shine a Light on Celiac partnership to raise awareness for celiac disease, an autoimmune disorder that affects one in every hundred people worldwide, by having buildings light up green on May 16. May is Celiac Awareness Month in the United States, Canada, and the UK.

The partnership includes Beyond Celiac, Canadian Celiac Association, Celiacos de Brasil, Celiac Disease Foundation, Coeliac Australia, Coeliac UK, Gluten Intolerance Group, National Celiac Association, Coeliaque Quebec, Coeliaque Canada, Hellenic Celiac Society, and Slovenian Society for Celiac Disease, which have come together to increase awareness and education about celiac disease, a condition where the body has an immune reaction to gluten. People with celiac disease must avoid consuming foods that contain gluten, which can be found in wheat, barley, and rye. Untreated celiac disease can lead to anemia, infertility, osteoporosis and certain cancers.

To draw attention to this important issue, the organizations are encouraging buildings across the United States, Canada, and around the world to light up green on May 16. Many notable landmarks, such as Niagara Falls, Cristo Redentor (Christ the Redeemer), and the Quebec Olympic stadium will be participating in this initiative.

“This partnership is an important step towards raising awareness of celiac disease and the impact it has on the lives of those affected,” said Alice Bast, CEO of Beyond Celiac. “By lighting up buildings in green, we hope to start conversations and encourage people to learn more about this often-misunderstood condition.”

Beyond Celiac is also hosting a virtual 5K and a virtual Town Hall in May to raise awareness and to educate the public about celiac disease. These events will be open to the public and will provide an opportunity to get active and will share valuable information about the disease and how to manage it. And, as part of their celebration of 20 years of service to the celiac disease and gluten sensitive communities, Beyond Celiac will be highlighting the advances made in the last two decades in public awareness and research, as well as providing shareable items on social media.

All of this is in addition to the joint work with fellow celiac disease organizations. “We are excited to be partnering with other non-profit organizations in our community to raise awareness for celiac disease,” said Melissa Secord, National Executive Director of the Canadian Celiac Association (CCA). “By coming together, we can make a greater impact and help ensure that people with celiac disease get the support and resources they need.”

The coalition encourages individuals and organizations to show their support for celiac disease awareness by lighting up their own buildings or wearing green on May 16. For more information about celiac disease and the coalition’s events, please visit shinealightonceliac.org.

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