I had the pleasure to interview Alice Bast, CEO, Beyond Celiac. While in her 30’s, Alice Bast suffered from debilitating health challenges, including a full-term stillbirth and multiple miscarriages. She struggled for eight years to discover the cause. After visiting 22 physicians, the 23rd finally diagnosed her with celiac disease, a serious genetic autoimmune condition that currently has only one treatment — a strict gluten-free diet. In 2003, Alice founded Beyond Celiac, a patient-centric organization serving 3 million Americans, in order to spare others from the ravages of undiagnosed celiac disease, to accelerate research and ultimately find a cure. She represents the patient voice in key government, research and industry venues. Alice has secured grants from the NIH and FDA. Winner of the 2010 Philadelphia Award, 2013 SmartCEO Brava Award and the 2017 Philadelphia Magazine Trailblazer Award, and she serves on the board of the Philadelphia Award.
Thank you so much for joining us Alice! Can you share the most interesting story that happened to you since you started your career?
When I was first diagnosed with celiac disease, it was very hard to find any gluten-free products. I ordered bread from Canada. After founding Beyond Celiac (then called the National Foundation for Celiac Awareness), I learned that the lack of availability of gluten-free food was actually a barrier to diagnosis and research for additional treatments. So I set out on a quest to build a market when the naysayers said it was impossible. I camped out in Benton Arkansas at the Walmart headquarters to, over time, raise awareness about the need for the availability of affordable gluten-free food. Today, Walmart has aisles labeled “gluten-free.” Additionally, we partnered and worked with Whole Foods, Wegmans, and even Anheuser Busch to bring all kinds of products to market. We helped introduce the first mainstream gluten-free beer! We also hosted the original gluten-free expos around the country. So the most interesting thing is that you really can go from a germ of an idea based on the needs of your constituency and build something from the ground up that will improve how people live. The rate of diagnosis was only 3% in 2003 — now some experts estimate that the diagnosis rate has increased to 50%! Part of the increase is likely due to the increase in awareness that came with the rise of the gluten-free food market and through our partnerships to drive diagnosis, like that with Quest Diagnostics and most recently, imaware™ for their at-home blood test.
Can you share a story about the biggest mistake you made when you were first starting? Can you tell us what lesson you learned from that?
When I started the National Foundation for Celiac Awareness, I did not bring enough intention to our brand. We were very mission-focused and didn’t spend a lot of time thinking about marketing — it seemed much more important to be all about the work of improving people’s lives. We were wrong about that! Being invisible or hard to find makes it very hard to serve your constituency in the long run. Our name was long and hard to remember. Our URL and social media handles didn’t match our name or each other. We built partnerships with food manufacturers but our presence quickly got overshadowed. Finally, in 2015 we rebranded and addressed many of the issues, and we continue to work hard to elevate the Beyond Celiac brand. My advice is to make sure you always have your brand and messaging front and center of all of the work. Otherwise, you will expend a lot of effort but remain invisible, and in the end, be less effective at creating the change you want to see.
When it comes to health and wellness, how is the work you are doing helping to make a bigger impact in the world?
Celiac disease is an autoimmune disease. All told, it’s estimated that 50 million Americans — 15% — live with some autoimmune disease, including type 1 diabetes, multiple sclerosis, lupus, rheumatoid arthritis and many more. However, celiac is different in that it is the only autoimmune disease with a known trigger — gluten. Because of this, experts believe that unlocking the mystery of celiac disease could be a gateway for unlocking all of autoimmunity. That would be a huge game changer for so many who are currently not able to live their best lives. Celiac disease research will be the key.
Can you share your top three “lifestyle tweaks” that you believe will help support people’s journey towards better wellbeing?
- If you are having health challenges that are unexplained or just get a shrug from your health care provider, keep working to get to the bottom of it. Don’t just treat symptoms. Question your doctors. In my case, I needed to get a proper diagnosis. I suffered for eight years with devastating health consequences, including a full-term still birth and loss of our unborn baby, Emily. Doctors couldn’t figure it out. They gave me pills for everything from migraine headaches to GI distress. They tried to tell me that it was all in my head. Then, finally on the advice of a veterinarian who knew that some dogs have difficulty with grains, I asked my doctor to test me for celiac disease. Celiac disease is a serious genetic autoimmune disease in which the gluten protein, found in wheat, rye and barley, triggers the body to damage the small intestine, causing more than 300 signs, symptoms and long-term health consequences. One little blood test changed everything, and I might not have ever gotten a diagnosis if I hadn’t kept pursuing the root of the problem.
- Educate yourself using credible sources, and bring a healthy dose of skepticism when reading blogs or other self-proclaimed experts or gurus. There is a lot of misinformation out there about what promotes wellness and what causes illness. Really examine the evidence, or find your trusted sources to help you sort fact from fiction. At Beyond Celiac, we are the trusted source that the celiac disease and gluten-sensitive communities can turn to for answers, and we empower our audience with evidence-based research and the latest in how to manage gluten-related conditions.
- Regardless of your current health or condition, focus on what you can have and what do you have control over. I hear all the time from people who don’t want to get tested for celiac disease because they think they could never give up their bread, pasta, pizza, cake, cookies, etc. We humans are resilient! Once you get the hang of it, the gluten-free diet is quite manageable, especially because many healthy foods are naturally gluten-free — produce, meats, dairy… when you shop the perimeter of the grocery store, leave the processed foods out of the equation and learn to cook a handful of recipes, you can tailor your foods to your tastes and have the knowledge of just what exactly is in your food. And, because of my work and the work of Beyond Celiac over the years, there are dozens of gluten-free versions of your old favorites, so you really can have your cake and eat it too now (just do so in moderation! Gluten-free processed foods aren’t even close to being considered health foods!)
None of us are able to achieve success without some help along the way. Is there a particular person who you are grateful towards who helped get you to where you are? Can you share a story about that?
I have to acknowledge first and foremost my husband, Will Bast. I could have done none of this without him. When I founded the organization, our daughters were young. When I began traveling for meetings, events and awareness campaigns, Will took care of everything and encouraged me to go. He and I had both experienced the loss of our unborn baby in a full-term stillbirth. He was grieving too, and he channeled that grief into supporting me in making sure than no other parents suffered the same loss.
I also couldn’t have started the organization without Ed Snider, philanthropist, businessman, CEO of Comcast Spectacor the Philadelphia Flyers and 76ers. Ed was diagnosed with celiac disease in 2003 and when I talked with him about starting the National Foundation for Celiac Awareness, he believed in me. He was our first major donor and became my first board member. He was my mentor, always offering sound logical advice. He became my dear friend and I am very fortunate to have had him in my corner. The world lost a wonderful man and a true champion for the celiac disease community when he died in 2016.
If you could start a movement that would bring the most amount of wellness to the most amount of people, what would that be?
Take control of your health! We need to get back to eating natural foods and we need to help our families do the same. It’s no secret that a diet heavy in ultra-processed food is not good for long-term wellbeing. Habits are developed very early in life, so if you can help shape the eating habits of your kids to be rich in fresh and wholesome foods, they will begin with a head start in maintaining a lifetime of good choices. But also know it’s never too late! You can change your patterns at any time and adopt strategies in which you improve your ability to make a better choice with your food and beverages. Don’t fall prey to advertising and packaging that make health claims. Recent research indicates that consuming more than four servings of ultra-processed foods a day over time have been linked to a 62% increase in all causes of death. The numbers get worse the more of it you eat. So stick to the perimeter of grocery store — fruits, veggies, meats, dairy — and away from the rows and rows of ultra-processed food in the middle.
What are your “3 Things I Wish Someone Told Me Before I Started” and why?
- It was a surprise to learn how big a challenge it is to raise money for a chronic illness. For people who have celiac disease, once we learn how to manage the gluten-free diet and our health gets somewhat better, we almost feel like we don’t deserve to have research for treatments or a cure when there are other people we perceive to be much worse off. But at least half the people with celiac disease are undiagnosed, and for those of us who are diagnosed, research is showing that 1 in 5 aren’t fully healing. Some people, especially those with refractory celiac disease, are still incredibly sick. Our community truly cannot eat without fear. Contributions are important because this is a disease that we can beat, and in doing so, we will have moved the needle for all of autoimmune disease. Once people learn the full story and understand the latest developments in the field, they come to understand why we need to raise money. Without funding, there’s no research. Without research, we will continue to have disease that is poorly understood and whose only treatment is difficult to manage and frequently ineffective.
- There are a lot of ideas that an organization or a leader can pursue in service of a mission, especially one that was broad like our original mission of raising awareness. It’s important to build the infrastructure before attempting major endeavor. In our case, we launched what became the first gluten-free expos, called Gluten-Free Cooking Sprees, and they built so rapidly that we overwhelmed our staff, subsumed our ability to do other work, and most notably, we weren’t able to connect with our community in the way we wanted with the people who needed us. We had to step back, examine where we were going, and course-correct.
- From the outside, many think that life in the non-profit world is not burdened by competition. Not true! The number of nonprofit organizations in the United States continues to increase and there is perceived competition for finite donors, limited resources and limited attention. I find it curious that competition among nonprofits is looked on with distain. In my view, a bit of competition brings moreresources and attention to the cause overall. Our whole point is to cure celiac disease. If competition helps us get there faster, bring it!
Do you have a “girl-crush” in this industry? If you could take one person to brunch, who would it be? (Let another “woman in wellness” know that you respect her as a teacher and guide! )
- I’m going to broadly define “this industry” to include working to make the world more fair, just and healthy. To that end, I love Ruth Bader Ginsberg. She’s such an incredible role model for being a trailblazer in a man’s world. She is my hero in living a life that’s all about achieving real and lasting results without compromise — both in her career and as a wife and mother. And don’t even get me started on her commitment to her health! So inspirational.
- Second is Michelle Obama. Like RBG, she personifies living her values in work and personal life. What’s more, she took her unique platform as First Lady to lift up the values of healthy eating and healthy living. Her garden on the White House became a symbol and an invitation for us all to reconnect with where our food comes from. And talk about strong! Don’t get me started about those biceps!
Sustainability, veganism, mental health and environmental changes are big topics at the moment. Which one of these causes is dearest to you, and why?
These are all connected! All part of the same fabric. Sustainability affects our environment affects our food supply affects our health. It’s a false dichotomy to separate “health” and “mental health” because what happens in our gut is a big part of how our brain functions. Our environment has an immediate and also long-term effect on our physical and mental health. This is so clearly illustrated in celiac disease. While it’s defined by the presence of damage to the lining of the small intestine, neurological problems such as brain fog and ataxia are very common. There are families I’ve spoken to, and also documented casesin people with celiac disease and non-celiac gluten sensitivity about gluten-induced psychoses. And the social and emotional burden, coupled with increased costs associated with food and healthcare lead to maladaptive behaviors and often, self-isolation. It’s well documented that loneliness and a sense of not belonging are strongly linked to depression, so the indirect health risk of celiac disease can’t ignore that. So most dearest to me of these choices is to not see them as choices. They are all one.