Letter from Alice: A Year of Stories
A year ago, we launched our Voices of Celiac Disease initiative to collect diagnosis stories from our diverse community. Incredibly, we received an overwhelming response. As we read through your experiences, a few common themes emerged: primarily, that many of you felt ignored; that your valid concerns were dismissed year after year, by multiple doctors and specialists; that you had little guidance when switching to the gluten-free diet and managing your celiac disease long-term once you were diagnosed; and that you feel shame and isolation when eating out. There are stories of hope, too; so many of you expressed that you want to help those currently struggling with celiac disease any way you can! If you want to read through these stories, check out our story archive.
This anecdotal evidence is important to Beyond Celiac as we communicate community concerns with researchers, healthcare professionals and academics. It raises awareness of the many symptoms associated with celiac disease and how frequently doctors decline to test for celiac disease even when asked to do so. But we want to elevate your experiences further.
We created Go Beyond Celiac so you can share your story and help researchers at the same time. Go Beyond Celiac captures data from people with celiac disease, including:
- Experiences before, during and after diagnosis
- Past and current symptoms
- Psychosocial and economic impacts of living with celiac disease
Your story is the missing piece of the celiac disease puzzle. Joining Go Beyond Celiac will help break down the walls between our community and scientists so we can work hand-in-hand towards a better life with celiac disease.
We hope that by collecting both personal stories and research data and sharing them with the medical community and general public we can make strides in diagnosis—across communities, no matter a person’s race, ethnicity, gender or symptoms. Your voice has power. We encourage you to use it.
Together for a cure,