Celiac Disease Resources (Around the World)
I tend to be so independent that I forget we have celiac disease resources around the world that provide understanding, support, and events for those of us who must live gluten-free (GF). In fact, when one of my favorite restaurants in Croatia (above) served a beautiful hand-crafted pizza that I couldn’t eat (it wasn’t GF), I felt an unusual sadness. That memory prompted me to create this list of worldwide celiac resources so others don't have to feel that sadness, too. GF websites available in English are sorted by name, with included details. GF websites available in foreign languages are then listed by country. And it’s so fascinating to see how each country helps those with celiac disease. Knowing the importance of community, this list can help us surround ourselves with what helps us thrive—especially each other.
Allergic Living (USA)
Even though celiac disease is not an allergy, Allergic Living has an entire section devoted to celiac disease, with articles and resources I find interesting and helpful to read.
“Allergic Living informs, engages and assists readers living with food allergies, and environmental allergies and asthma. Our mission is to be the authoritative and trustworthy source of news and information for the allergy community.
“Allergic Living’s editorial team of health and news journalists is known for insightful, science-based and fact-checked reporting on allergic disease. Our feature writing focuses on the societal and emotional challenges of food allergy life, and always provides insights from top experts. The website also offers allergist and dermatologist advice columns, while lifestyle coverage includes allergy-friendly and gluten-free recipes.
“In 2019, the former print magazine … transitioned to enhanced online reporting on Allergicliving.com, alongside a series of special edition e-magazines.”
Association of European Coeliac Societies
The AOECS is the umbrella organization of the European national coeliac societies. Its mission is to unite and empower the coeliac societies in Europe and beyond. They share some great resource lists.
“The Association of European Coeliac Societies (AOECS) is an independent, non-profit organization representing people affected by coeliac disease or dermatitis herpetiformis (DH) across Europe and beyond.
“We’re working towards … the best possible safety, availability and labelling of products suitable for gluten intolerant people … encouraging more multi-national research projects on coeliac disease and DH … a more open exchange of information on coeliac, gluten intolerance, DH and their suitable diets … developing and sharing skills and knowledge, particularly among newer national coeliac societies, to support the social welfare of those affected by coeliac, gluten intolerance and DH.
“Our regular participation in sessions of the Codex Alimentarius Commission, an organisation responsible for adopting standards and guidelines for food legislation across the world, has resulted in the improvement of several Codex standards to protect the gluten intolerant population … all gluten containing ingredients must be labelled with no exceptions … naturally gluten free foods must remain so (e.g., free from gluten coating) … no transfer of genes is known to cause gluten sensitive enteropathy in GMO foods.”
Beyond Celiac (USA)
Beyond Celiac focuses on fundraising and research, with clinical trial opportunities. I like to stay informed about all they are doing.
“Since 2003, Beyond Celiac has been the leading patient advocacy and research-driven celiac disease organization working to drive diagnosis, advance research and accelerate the discovery of new treatments and a cure.
“By engaging with the top scientists in the field, awarding research grants, and supporting the community, Beyond Celiac envisions a world in which people with celiac disease can live healthy lives and eat without fear – a world Beyond Celiac.
“Beyond Celiac fosters a sense of belonging by elevating underrepresented voices as we work together for a cure. We seek to be a community that welcomes diverse perspectives and provides meaningful opportunities to empower marginalized populations.
“We firmly believe that with a strategic approach to targeted research, an effective treatment or cure is possible by 2030. To accomplish that goal, we are laser-focused on addressing the many current barriers. Read our science plan.”
Celiac Canada
Among many things, Celiac Canada hosts Canada’s annual celiac conference to “share the latest research and information, to promote best practices and to advocate for celiac disease issues and policies.”
“On a dark and stormy night on February 11, 1973, two women hosted the first-ever celiac patient group meeting at the Kitchener-Waterloo hospital.
“Over our first 50 years, Celiac Canada (formerly Canadian Celiac Association) has built a strong and engaged community of chapters, regional groups, peer supporters, volunteers, committees, friends, donors and partners.
“We are celebrating with old friends and embracing new ones through a host of activities that include educational events, community celebrations, volunteer awards, food partner recognition, research and more that focus on what we do best: research, education, advocacy and community support.”
Celiac Disease Center at Columbia University (New York)
It makes me happy to see Columbia University state “…all of the Center’s research … reflects the nature of celiac disease as a multisystem disorder.” They also have great online educational materials.
“Our strengths in research and treatment are enhanced by our location within Columbia University Medical Center, which as a leading medical institution in New York City provides fertile ground for innovative research and translational studies across a variety of divisions, departments, centers, and institutes.
“Services … include … breath testing for bacterial overgrowth and lactose, fructose and sucrose intolerance … genetic testing.
“In addition, extensive collaborative relationships have been established with other medical and subspecialist departments including endocrinology, bone metabolism, rheumatology, surgery, hematology, oncology, neurology and dental medicine.
“This team approach ensures that there is continuity in care.”
Celiac Disease Foundation (USA)
The Celiac Disease Foundation is another celiac organization working to educate, advocate, and research. I can search their site for updates, resources, and events.
“Celiac disease is one of the world’s most prevalent genetic autoimmune diseases, affecting an estimated 3 million Americans, 70-80% of whom are undiagnosed. Causing the body to attack its own small intestine, it can lead to many other devastating health conditions, including cancer. Unfortunately for the millions who suffer, celiac disease has largely been ignored by our federal government which provides little to no funding for research nor for public awareness of its serious consequences.
“Through strategic investments in research, education, and advocacy, the Celiac Disease Foundation seeks to remedy this by accelerating treatments and a cure. Our iCureCeliac® patient registry and extensive patient recruitment services enable us to identify qualified patient candidates and speed their enrollment to advance critical disease research. Our unparalleled advocacy program has led the way to secure federal recognition and first-ever research funding from agencies including the U.S. National Institutes of Health and the Department of Defense.”
Coeliac Society of Ireland
Ireland’s population is only about 5 million (my home state is nearly twice that), with more than 500,000 who must live gluten-free. So I’ve heard it’s easier to avoid gluten in Ireland. I look forward to finding out.
“Working to make Ireland the best country in the world to live gluten free … supporting, empowering, educating and inspiring those living a gluten free life every day.
“There are an estimated 100,000 people living with coeliac disease in Ireland, and a further 450,000 who are gluten intolerant. The Coeliac Society of Ireland is determined to make sure that every one of them has the support and help they need to make living with their condition as easy and as normal as is possible. We empower the entire coeliac and gluten intolerant community by providing them with information, advice and practical solutions as they navigate a gluten-free lifestyle.
“The Coeliac Society also represents your interests by advocating to government health agencies for improved resources and services, so that you and your families can access the care that you need. Together we can make Ireland the best country in the world to live gluten free.”
Coeliac Association Malta
Malta’s population is only about 500,000, so I like to read about their social community events for celiacs, learn how they handle gluten-free food vouchers and more.
“A voluntary self-help and non-governmental organisation for people with coeliac disease or dermatitis herpetiformis … founded in 1989 by coeliacs themselves to promote the welfare of coeliacs in Malta.
“Membership is open to those who have been medically diagnosed. The association offers help and advice, and provides useful information about the condition and the gluten free diet to newly diagnosed persons. It offers on-going support and advice to members and their families and provides dietary guidelines to help improve the quality of life of coeliacs.
“The association endeavours to generate greater awareness on coeliac disease and, from time to time, organises conferences, seminars and talks. Social activities for members and their families are also organised regularly.
“Contact with members is also maintained through newsletters that are issued approximately every two months and are forwarded to members either by post or by email.”
Coeliac Australia
Coeliac Australia has a great news page, a gluten-free accreditation program, magazine, and they hold annual gluten-free expos.
“Coeliac Australia is the national registered charity supporting Australians with coeliac disease and associated conditions requiring a gluten free diet. We provide membership and a range of support and information services to enhance the lives of people with coeliac disease, raise vital funds for research and create awareness of coeliac disease and the gluten free diet within the medical profession, food services industry and the broader community.”
Coeliac New Zealand
Coeliac New Zealand offers an accredited Dining Out program, a Gluten-Free Food Safety certification program, and more.
“Wheat or dietary gluten often causes a range of adverse symptoms. We want you to understand the possible causes of this and what steps you can take to lead a healthier lifestyle. Living with coeliac disease or gluten intolerance can be hard - which is why we are here to help … whether you have coeliac disease, gluten intolerance, are a health professional with coeliac patients, produce or cook food for coeliacs we have the resources, support, and the community you need.
“The work Coeliac New Zealand does on behalf of people with coeliac disease with hospitality and food manufacturers helps to ensure there are choices on the shelves and in restaurants for everyone. We are a charitable organisation. If coeliac disease has had an impact on someone you know you can support them by supporting us and get a double whammy with your giving!”
Coeliac UK
Coeliac UK publishes a gluten-free magazine, shares travel guides, hosts local groups, events, challenge events, posts videos, and more.
“We are the charity for people who need to live without gluten.
“We are an independent charity with expertise in coeliac disease and the gluten free diet. We fund critical research into coeliac disease, provide trustworthy advice and support to our members, and fight for better availability of gluten free food. We support our 65,000 strong community through our offices in England, Scotland and Wales and local volunteer groups.
“We have an overall strategy which is underpinned by a biannual plan to keep us on track. The work we do and the progress we make is measured against our strategy and benchmarks so that we can keep advancing towards our goals.”
Dr. Gary Gray (Special Mention)
“Gastroenterologist Gary Gray, part of Stanford Medicine for nearly 50 years, helped find the molecular cause of celiac disease and a potential treatment.”
“Gray was the head of the Division of Gastroenterology and Hepatology for 17 years and the director of two previous organizations at Stanford Medicine: the Stanford Celiac Sprue Clinic and the Digestive Disease Center. He saw patients until around 2015.
“In 2002, Gray co-authored a paper on the molecular cause of celiac disease, an autoimmune condition that causes gluten intolerance. He studied a peptide — a short chain of amino acids, the building blocks of proteins — that causes the inflammatory response to gluten in affected patients. He and his co-authors found that an enzyme, prolyl endopeptidase, could be used as an oral therapy to detoxify gluten in celiac patients. Researchers plan to conduct late-stage clinical trials on the treatment in 2024.
“Gray focused on the chemistry that allows food to be converted to energy in the small intestine, specializing in the enzymes sucrase, lactase and aminopeptidase, which have roles in digesting dietary sugars and proteins.
“Early in his career, enzymes like these were hard to study because they are large proteins stuck inside cell membranes. But Gray pioneered a method to prepare these enzymes in a concentrated form directly from intestinal tissue, opening the door to studying their chemistry and regulation.
“Gray published more than 140 peer-reviewed articles and textbook chapters on the topic, receiving more than 40 National Institutes of Health grants in roughly 12 years. He practiced translational medicine, which brought clinical applications to basic science research.
“‘I saw in Gary the ability to connect chemistry, biology, medicine and engineering in ways that were unique among his generation of physician-scientists.’
“Besides research and mentorship, Gray also stood out with his devotion to his patients, according to Nielsen Fernandez-Becker, MD, PhD, a clinical associate professor of gastroenterology, who now treats many patients who were once Gray’s. Rather than relying on pathologists, Gray insisted on studying his own small intestinal samples to diagnose celiac disease. He was so devoted to his patients, Fernandez-Becker said, he gave them each his cell number.”
Global Autoimmune Institute (USA)
The Global Autoimmune Institute shares organizations, medical institutions, books, blogs, podcasts, and more resources pertaining to autoimmune diseases.
“Our support includes making possible the establishment of a Multidisciplinary Celiac Disease Clinic for celiac disease patients, the most comprehensive approach ever developed before. This serves as a national standard of the highest care for celiac disease patients and is becoming a referral clinic.
“We co-produce podcasts, cooking videos … and programs in celiac disease and associated ADs and neurological disorders.
“We partner to hold an annual Gluten Free Education Day and Expo in the D.C. Metropolitan area. This event has proved wildly popular, and is spearheaded by the very talented Executive Director of the Celiac Program at CNH, Vanessa Weisbrod.
“In the near future, we plan to hold a symposium in Washington, D.C., bringing together expert physicians and scientists in autoimmune neurological disorders. Stay tuned for details!”
Gluten Intolerance Group (USA)
The Gluten Intolerance Group offers amazing resources, materials, and support groups to help those who live gluten-free.
“For over 46 years, Gluten Intolerance Group (GIG) has led the way in helping support your health and safety when it comes to living gluten-free. We understand the challenges you face as you omit gluten from your life. Whether you are making a personal choice or a medical one, we are here with you every step of the way. Connect with a GIG support group near you, access our gluten-free resources, and look out for our gluten-free certification mark on the products you bring into your home. Safety. Trust. Transparency. That's what GIG is all about. Won't you join us? “
Kogan Celiac Center at Barnabas Health (New Jersey)
I love that Kogan Celiac Center provides resources and events that include things like celiac stories, in-person support group dinners, grocery tours, and online support groups.
“A 100 percent gluten-free lifestyle is more than eating gluten free. It is a new way of life which involves learning new things such as how to read food labels and navigate social situations. As the only celiac center in New Jersey, The Kogan Celiac Center is dedicated to providing adult and pediatric patients with comprehensive counseling, expert assessment, community-based education, support groups and resources to help make the transition easier.
“Michelle Pasia, MPH, RDN, Program Coordinator, received her undergraduate degree in nutrition and completed a nutrition internship at Syracuse University. She has a master’s degree in Public Health from Hunter College, New York, NY. With a passion for providing life-changing education to patients with celiac disease, Michelle gives them the support they need to live their lives. She also counsels patient with … inflammatory bowel disease (IBD), irritable bowel syndrome (IBS) and other nutrition areas.”
National Celiac Association (USA)
The National Celiac Association hosts regular virtual support groups, provides local contacts, and hosts local events (how to shop gluten-free, living gluten-free, and more).
“The National Celiac Association represents and serves individuals with celiac disease and gluten sensitivities. We offer … three issues a year of Gluten-Free Nation, our full-color print magazine … an e-newsletter, NCA News, with items too important to wait, goes out monthly … yearly, we host a celiac conference in partnership with the celiac centers at MassGeneral Hospital, Boston Children's Hospital, Beth Israel Deaconess Medical Center and the Celiac Program at Harvard Medical School.
“We educate, advocate and raise awareness of celiac disease and gluten intolerance. We foster a sense of community, belonging and camaraderie. We keep a close affiliation with a core of expert gastroenterologists and nutritionists. We provide empowerment to live with a chronic disease and share a positive outlook as ambassadors of the disease. We offer membership, the dues of which support the celiac and gluten free community.”
National Institute of Health (USA)
The National Institute of Health (NIH) celiac page offers an excellent general overview plus resources, organized in a way that makes it easy to navigate the important data they share.
“Celiac disease is a chronic digestive and immune disorder that damages the small intestine. The disease is triggered by eating foods containing gluten. The disease can cause long-lasting digestive problems and keep your body from getting all the nutrients it needs.
“Doctors use information from your medical and family history, a physical exam, and medical test results to look for signs that you could have celiac disease. Doctors diagnose celiac disease with blood tests, biopsies of the small intestine, skin biopsies, and genetic tests.
“To treat celiac disease, you will need to follow a gluten-free diet. Your doctor will explain the gluten-free diet and may refer to you a registered dietitian who specializes in treating people who have celiac disease. A dietitian can teach you how to avoid gluten while eating a healthy, balanced diet.”
Stanford Medicine Celiac Disease Program (USA)
Just reading through Stanford’s Celiac Disease Program web page shows me medical care options I need to keep in mind—their one web page is an educational resource in itself.
“We offer one of only a handful of centers in the US and the only one in Northern California with dedicated specialists who focus solely on treating and studying celiac disease. Our doctors are experts on treating rare forms of the disease and managing complications.
“Specialized expertise in treating celiac disease, including rare forms such as refractory celiac disease, which doesn’t respond to traditional treatment.
“Clinical trials for celiac disease that offer eligible patients access to the latest technology and treatments not widely available at other medical centers.
“Our gastroenterologists conduct a full assessment, which may include an endoscopy. We use the most advanced endoscopic devices and techniques, many of which were developed at Stanford.
“We also use the most accurate antibody testing available to help avoid false positive test results.
“Stanford is one of the few sites in the nation that offers deep enteroscopy, also called balloon-assisted endoscopy. This procedure provides doctors a more complete view of the digestive tract than other methods. We use this advanced technology in special cases, and our gastroenterologists work with advanced endoscopists to conduct the procedure.
“Our doctors look at intestinal cells while shining fluorescent light through microscope. This test aids in determining the severity of celiac disease.”
The Celiac Scene (Vancouver Island, BC, Canada)
Vancouver Island, BC, is another favorite destination, and I absolutely love that there is such an active group of celiacs gathering and sharing their time and resources with one another and visitors alike.
“The Celiac Scene™ is your premier resource for fabulous gluten-free living in Victoria, Vancouver Island & the Gulf Islands. Owned & operated by celiacs, we introduce you to restaurants we trust and local gluten-free products we love! We even tell you where to purchase them, at the very best prices. Enjoy national celiac news, local reviews and non-stop gluten-free event notices. The Celiac Scene is your ‘Guide to Gluten-Free Paradise!’”
University of Chicago Celiac Disease Center
In addition to clinical studies and medical information, the University of Chicago Celiac Disease Center offers virtual education events, an e-guide, plus programs to help those transitioning to a gluten-free life.
“The mission of The University of Chicago Celiac Disease Center is to cure celiac disease. As we focus on research toward a cure, we also strive to raise awareness and diagnosis rates through education and advocacy.
“Our research team is led by Dr. Bana Jabri, who has contributed to groundbreaking celiac disease research and is the first to create a mouse model for the disease—a critical key to developing the cure for celiac disease.
“Under Dr. Jabri’s leadership, our team is at the forefront of celiac disease research, sponsoring dozens of research projects in the last 10 years. In addition, our staff experts have authored or coauthored more than 50 published celiac disease studies. Through our research, we’re striving to identify new treatments for celiac disease and to find a cure.
“The goal of The University of Chicago Celiac Disease Center is simple and straightforward: to find a cure for celiac disease.”