Strength in Unity: The Global Movement Powering Coeliac Disease Awareness
Coeliac Disease Research Organisations and Associations are making strides forward all across the globe
Awareness, diagnosis, treatment, and long-term management of coeliac disease continue to evolve around the world. What’s driving this change is a growing network of individuals, organisations, and health professionals who are working together to improve life for those affected by coeliac disease and gluten intolerance.
While challenges remain—such as delayed diagnosis, miscommunication in healthcare settings, and lack of public awareness—there is a clear global effort to drive progress. By understanding who is involved and how collaboration is already creating momentum, we can better support each other and push for meaningful change.
International Organisations Taking the Lead
Across the globe, coeliac-focused organisations are advocating for better outcomes. Thanks to the Coeliac Disease Foundation, we have access to a wide list of these dedicated groups. The Association of European Coeliac Societies (AOECS) represents an alliance of European groups that share strategies and research initiatives.
Participating countries include:
Andorra, ArgentinaAustria, Australia, Bermuda, Brazil, Canada, Coeliac Youth of Europe, Chile, Croatia, Cyprus, Czech Republic, Denmark, El Salvador, Estonia, Finland, France, Germany, Greece, Hungary, Ireland, India, Italy, Israel, Japan, Jordan, Lithuania, Luxembourg, Malta, Mexico, Netherlands, New Zealand, Norway, Paraguay, Poland, Portugal, Russia, Saudi Arabia, Slovenia, Slovakia, Spain (and Catalonia), Sweden, Switzerland, Turkey, UAE, Ukraine, United Kingdom, and Uruguay.
In the United States, support is driven by several major organisations including the Celiac Disease Foundation, Beyond Celiac, and the National Celiac Association.
Together, these groups are driving awareness, education, and scientific research, often under financial or regulatory constraints. Their combined efforts demonstrate the value of solidarity in the face of ongoing challenges.
Collaborating with Healthcare Professionals
While advocacy groups play a major role, progress in coeliac care also depends on collaboration within the medical community. Yet, many healthcare professionals still operate in isolation due to time pressures, limited resources, and competing demands.
This reality was highlighted in a conversation with Dr Nick Cooling from the Royal Australian College of General Practitioners (RACGP). He discussed the difficulties GPs face when diagnosing and managing coeliac disease and acknowledged that peer-to-peer communication among medical colleagues is often limited.
Doctors must consider a vast range of potential diagnoses daily. Coeliac disease—despite being one of the most common autoimmune diseases in Australia—can fall through the cracks, contributing to the significant number of undiagnosed individuals.
Restoring Trust Through Connection
What can be done to improve trust between coeliac patients and the healthcare system?
When patients are dismissed or left undiagnosed, mistrust in the healthcare system grows. Many individuals end up feeling overlooked and unsupported, which delays access to treatment and exacerbates symptoms.
This highlights the need for a more organised, system-wide response. As one of the most common autoimmune conditions in Australia, coeliac disease deserves greater recognition and prioritisation. Healthcare professionals must come together to share knowledge, revise guidelines, and treat this condition with the seriousness it deserves.
Finding the right health professional is a crucial part of this journey. Whether it’s a GP, a dietitian, or a specialist, patients should feel heard. If that’s not happening, it's okay to move on. Seeking a second or third opinion, tracking symptoms, and self-advocating can make all the difference.
The Power of the Gluten Free Community
Diagnosis brings more than just clarity—it opens the door to a supportive global community. Whether through local meetups, online groups, or community-led events, people are sharing experiences, offering guidance, and building awareness.
These spaces play a crucial role in dispelling myths. Coeliac disease is often misunderstood as a food intolerance or an allergy. This misconception shows up in social settings, hospitality venues, schools, and workplaces, creating real barriers for those affected.
Ongoing education is vital—not just among medical professionals, but across the general public. Understanding issues like cross-contamination and the physical toll of unmanaged coeliac disease can lead to broader, systemic improvements.
Reducing the Burden on the Health System
Greater public awareness doesn’t only benefit individuals living with the disease—it supports the healthcare system as a whole. Earlier diagnosis, improved treatment protocols, and proactive patient care reduce long-term complications and ease demand on public health resources.
While private clinics must consider financial viability, the broader healthcare system benefits when patients are accurately diagnosed and supported from the start. Fewer emergency visits, less misdiagnosis, and more consistent care become possible when coeliac disease is addressed effectively.
Research and Innovation Are Gaining Momentum
Leading researchers are making exciting advances in coeliac treatment and diagnostics. Two such figures are Professor Jason Tye-Din of the Walter & Eliza Hall Institute (WEHI) in Melbourne, who will present cutting-edge findings at the 2026 International Coeliac Disease Symposium in Melbourne.
Professor Bob Anderson is another prominent leader. A world-renowned gastroenterologist and immunologist, he has driven landmark discoveries in coeliac research—from his early work at WEHI to developing Nexvax2, heading Novoviah Pharmaceuticals, and now serving as President of the International Society for the Study of Coeliac Disease (ISSCD).
Meanwhile, Olivia Moscatelli, a PhD student at WEHI, is also contributing to major advancements in the field. Working closely with Associate Professor Tye-Din, Olivia brings both scientific expertise and lived experience to her work, offering a unique and invaluable perspective.
Taking Action at a Personal Level
Driving change doesn’t always require millions of dollars - everyone can do their part for coeliac disease awareness
Individual action also plays a powerful role in driving change. You can start by contacting your local coeliac organisation. Many offer volunteer opportunities, awareness campaigns, and even medical studies you can join. For those of us in Australia, Coeliac Australia is our coeliac disease organisation.
Engaging with your local gluten free or coeliac community helps build knowledge and confidence. These connections can make it easier to talk to health professionals, navigate social situations, and advocate for your needs.
A Note from Ben
I discussed this topic in more detail on Episode 175 of A Gluten Free Podcast. This was a Gluten Free Thoughts insight that explores what we can do as a collective to help improve awareness, while highlighting podcast guests who are making major strides in the coeliac research industry.
