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Letter from Alice: What do Americans think about celiac disease and the gluten-free diet?
Celiac Awareness Month may be over, but the job of helping people understand celiac disease continues as always at Beyond Celiac. Last year, to gain a better understanding of the knowledge that Americans have about celiac disease, Beyond Celiac commissioned The Harris Poll to conduct a national benchmarking survey. From that survey, we learned that only half of Americans (50%) report knowing anything about celiac disease and/or gluten sensitivity, and nearly two-thirds (61%) of Americans are “not at all sure” about conditions that untreated celiac disease can lead to, such as depression and anxiety; anemia; brain fog and migraines; infertility; some types of cancer; osteoporosis or osteopenia; and delayed growth in children.
This year, we created a new Harris Poll survey (full report coming soon!) and uncovered additional alarming statistics. For instance, only 40% of Americans know that left undiagnosed or unmanaged, celiac disease could lead over time to a range of life-threatening medical conditions, and 28% believe people who eat gluten-free are just trying to get attention! Celiac disease has come a long way in terms of awareness since I founded this organization in 2003, but we still have a ways to go to achieve our vision—a world in which people with celiac disease can live healthy lives, free from social stigma and fear of gluten exposure—a world Beyond Celiac.
The good news is that we truly are making progress: very few people 20 years ago had any awareness of celiac disease, gluten was unheard of, and gluten-free foods were impossible to find. Those lucky enough to get a diagnosis often felt alone in the world. Due to your support, the Beyond Celiac staff have helped change the landscape over the last two decades, and because of their hard work, including these important Harris Poll surveys, they have recently been recognized for their outstanding efforts in spreading knowledge about celiac disease! The Communications team received the Nonprofit/Government Communications Team of the Year award in the prestigious Ragan & PR Daily’s Communicator of the Year Awards. In the realm of healthcare communication, few accomplishments are as commendable as effectively raising awareness about a widely misunderstood disease. The Ragan award recognizes that Beyond Celiac is doing this job at an unmatched level.
So while we may feel shocked that so many Americans still misunderstand celiac disease, let’s take heart that more people are being diagnosed than ever before; gluten-free foods are now found in grocery stores around the world; and there are even dedicated gluten-free restaurants and bakeries across the US. Thanks to your participation in our social media channels, we are 200K strong and growing as more and more people become aware of and diagnosed with celiac disease. The journey to spread awareness and understanding of celiac disease and the gluten-free diet in America has been challenging, but progress is undeniably being made.
As we strive for a world where individuals with celiac disease can lead healthy lives without social stigma or fear, let us remember the progress made and remain committed to creating a future beyond celiac disease. We invite you to continue living every month like Celiac Awareness Month. Together, we can make a difference and ensure a brighter, more inclusive tomorrow for all.
Together for a cure,
—Alice Bast
Looking for a sweet treat to brighten your summer? Look no further than this gluten-free cheesecake recipe! Customize it with different fruit toppings or by adding chocolate into the mix.
Looking for a delicious Indian recipe? Try this gluten-free, vegetarian dish, full of protein and flavor! Serve with basmati rice for a full meal.
This recipe is courtesy of our friends at Gluten-Free Palate.
Noticias sobre investigación
US study reveals pregnancy risks for women with celiac disease
Women with celiac disease are at increased risk for pregnancy and delivery complications compared to women without celiac disease, according to study that looked at the hospital records about 12 million pregnant women.
A small subset of those with celiac disease react to the protein in oat, study confirms
While oats are safe for most people with celiac disease, some patients react to the protein in oats with acute symptoms and a wheat-like inflammatory response, a study presented at Digestive Disease Week (DDW) found.
Celiac disease drugs show progress
Three companies developing celiac disease drugs gave updates on their treatments recently at Digestive Disease Week (DDW).
Children diagnosed with celiac disease through mass screening have improved health and quality of life
Children who were diagnosed with celiac disease as part of a mass screening program had improved symptoms, quality of life and iron levels one year later.
Frustration, fear, and luck play a role when a celiac disease diagnosis is pursued
Frustration and distress about symptoms lead most people with celiac disease to seek a diagnosis, according to a poster presented by Beyond Celiac at Digestive Disease Week.
Healthcare disparities may contribute to underdiagnosis of celiac disease
A higher income, living in an urban area and living close to a celiac disease center are all positively correlated with celiac disease prevalence, while being Black or Latino/Hispanic is negatively correlated, according to our research poster presented at Digestive Disease Week 2023.
More children, fewer adults being diagnosed with celiac disease
The incidence rate of celiac disease has increased over the past two decades, largely driven by diagnosis of children from six to ten years old, according to a study based on Minnesota electronic health records.
Read more research news on our Research News Feed
Voices of Celiac: The Shengs’ Story
When they were in fourth grade, Renzo began to say that they were one of the shortest kids in class and asked when they would grow. Their father and I are both above average height and were late bloomers, so we thought that would be the same for Renzo. Neither of us had ever heard of celiac disease, and we were only aware of “gluten-free” as some kind of fad diet trend.
Get Involved in Research
ILLUMINATE-062 Study
Participants are needed for the ILLUMINATE-062 Study, which is looking at the safety and effectiveness of an investigational medication designed to break down gluten in the stomach compared with placebo in those with celiac disease who are on a gluten-free diet. The study will evaluate how well the investigational medication reduces celiac-related symptoms and intestinal damage due to gluten exposure.
Participants who have been diagnosed with celiac, which was confirmed by a biopsy, and have been on a gluten-free diet for at least 12 months are needed. Study-related care is provided at no cost and a travel stipend may be provided.
Antidote Survey
We’re writing to share that Beyond Celiac, Antidote, and SCORR Marketing are conducting a survey to learn what people who have been affected by celiac disease think about clinical research, and we’d love to have your input. By answering these questions, you can help us make clinical trial participation easier for those who would like to take part.
Survey participation will take about 20 minutes; your individual answers will remain confidential, and we will publicly share only the combined, overall results.
PROACTIVE Study
Still experiencing celiac disease symptoms despite your gluten-free diet? This phase 2 clinical trial is testing the investigational medication PRV-015 in combination with a gluten-free diet for ongoing celiac disease symptoms.
Allergic Living Spotlight
Experts Seek Global Allergy Labeling, Revised Top Allergens List
Food allergen labeling will be at the forefront of a meeting of international experts seeking to standardize allergy advisories about cross-contact. The current “may contain” or “made in a facility” allergen statements on packaged foods often exasperate shoppers. They are neither defined nor regulated, so it’s impossible to know what they mean. Learn more about what is expected to come from the meeting.
News, Events & Updates
Beyond Celiac CEO Alice Bast writes, “I am so excited to share the news that the Beyond Celiac communications team has been recognized for their outstanding efforts in spreading knowledge about celiac disease!”
Beyond Celiac Leading the Way for Health Equity in Celiac Disease
Beyond Celiac is making strides toward health equity for all individuals affected by celiac disease.
May marks Celiac Awareness Month and the 20th anniversary of Beyond Celiac! Yes, you read that right—two whole decades of tireless service to the celiac disease and gluten-free community.
Raise Money for Beyond Celiac on Facebook!
Happy birth month to all our June-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.