Go Beyond Celiac is an online community created by people with celiac disease, for people with celiac disease. Join today to help advance celiac disease research by sharing your stories and experiences.
We created Go Beyond Celiac to advance celiac disease research like never before.
As a patient advocacy organization, we're dedicated to fighting for people with celiac disease and their families.
We envision a world where the 4 in 5 people who are undiagnosed can restore their lives through a timely and accurate diagnosis.
We aim to positively impact almost every aspect of celiac disease research by eliminating a major barrier to progress: the lack of reliable, in-depth patient information. Our aggressive research agenda advances pathways toward a cure for celiac disease, which many experts believe is possible within just 10 years.
Join us by registering for Go Beyond Celiac today - a first step in the fight against celiac disease.
With the power of your voice, Beyond Celiac is shaping a new model for engaging patients in research. Informed and engaged patients are the gears that will ensure celiac disease research results in the changes we deserve.
Across the healthcare field, patients’ stories are shaping what researchers study and how they study it. Go Beyond Celiac connects patients and caregivers with researchers to make sure your needs are heard.
What happens to patients in the real world must be understood. The complete patient experience, not only what is shared in a brief clinic visit, should be part of the research process from the start. Only you can provide a view of what it’s really like to live with celiac disease and what is needed to make your life easier and better.
By participating, you have an opportunity to:
- Improve your own disease management
- Share your experiences and learn from the experiences of others
- Directly contribute to research
- Keep up-to-date about important developments in diagnosis, disease management, drug development and more
Initial Findings from Go Beyond Celiac:
A few of the celiac disease stats collected through Go Beyond Celiac:
- 68% were called a hypochondriac by a relative, spouse, and/or friend prior to diagnosis.
- 27% of respondents saw 4 or more doctors before receiving their celiac disease diagnosis.
- 58% had at least 3 years between when symptoms first appeared and receiving a diagnosis.
- 64% of people avoid social activities at least monthly because of dietary requirements.
- 41% of the Go Beyond Celiac community has been bullied or made fun of for having celiac disease.
- 36% of respondents report being glutened at least monthly.
- 1 in 3 people say the gluten-free diet is only somewhat or not at all effective.
- 73% of respondent say they sometimes choose not to eat because of the effort it takes to determine what is gluten-free.
- 75% say they would be interest in participating in clinical trials for new therapies.
Get the Go Beyond Celiac postcard:
Get the Go Beyond Celiac brochure: