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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,
Alice Bast
Is there anything better than the smell of fresh bread baking? Eating gluten-free doesn’t mean you have to miss out! Try this soda bread recipe to get started on your gluten-free bread-making journey.
Corned Beef Cooked in Gluten-Free Beer
Celebrate St. Patrick’s day right with this gluten-free corned beef recipe. Using a slow cooker makes this recipe easier than pie; just add all your ingredients and let them simmer for a few hours, then bam—a delicious meal fit for any Irish festival.
Our Fundraiser Was A Success!
Thanks to our generous community, we ended up surpassing our February fundraiser goal a whole week before the end of February! This $20,000 in donations was matched by two board members, which means we have an additional $40,000+ to support vital programs here at Beyond Celiac. We’re heartened that the gluten-free community supports research so strongly. We truly believe that with research and awareness we can create a better future for anyone with celiac disease.
Thanks again to all who participated. If you would still like to donate, the fundraiser will be open through March.
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Research News
Children’s risk of celiac disease continues five years after screening
In a five-year follow-up, about 30 percent of children with potential celiac disease went on to be diagnosed with celiac disease, according to a recent Swedish study.
Clinical Trials
PROACTIVE Study
Are you still experiencing celiac disease symptoms despite your best efforts to follow a gluten-free diet?
The PROACTIVE Celiac Study is looking for people between the ages of 18 and 70, who have biopsy-confirmed celiac disease and have been on a gluten-free diet for at least the last 12 months. You will not be asked to ingest gluten in this study. The goal of this phase 2 clinical trial is to test the safety and effects of the investigational medication PRV-015. In combination with a gluten-free diet, PRV-015 aims to reduce symptoms and intestinal inflammation caused by accidental gluten exposure.
Allergic Living Spotlight
Starbucks: Sip or Eat at Your Own Risk with Food Allergies
With 30,000 locations, Starbucks is one of the most ubiquitous chains in the world. But people with food allergies might be better off laying off the lattes, given that Starbucks does not have a corporate policy to accommodate customers with food allergies. Read this article to learn about potential areas of cross-contact.
News, Events & Updates
March Town Hall: Manifestations of Untreated Celiac Disease with Stefano Guandalini, MD
Join Beyond Celiac for a Q&A session with renowned celiac disease expert Dr. Guandalini, professor emeritus at the University of Chicago and founder of the University of Chicago Celiac Disease Center. Dr. Guandalini’s clinical and research efforts have greatly influenced the way celiac disease is diagnosed and treated today. Dr. Guandalini is also the medical advisor for Beyond Celiac partner and sponsor of this Town Hall, imaware™. Submit your questions ahead of time and stop by on March 15, 2022, 11 AM ET to hear his answers!
A new coalition empowers women to Know Where to Go and Know What to Do for their health
In the name of women’s health, Beyond Celiac and other mission-driven organizations have come together to educate and empower women within a single, trusted entity.
Shop Charitably with Amazon Smile
You can donate to Beyond Celiac without spending an extra dime! When you buy eligible items on Amazon Smile, 0.5% of your purchase will be donated to Beyond Celiac at no extra cost to you. Here’s how:
- Visit smile.amazon.com.
- Search for “Beyond Celiac” in the search bar on the bottom right-hand side of your screen.
- Select Beyond Celiac.
- Start shopping!
Raise Money for Beyond Celiac on Facebook!
Happy birth month to all our March-born community members! When your big day rolls around, consider raising money for Beyond Celiac so that we can help fund new research by scientists in the celiac disease field. And a HUGE thank you to everyone who’s created fundraisers for us throughout the years! These fundraisers help make our important work possible.