On Taking Celiac Disease More Seriously: A Q&A With National Foundation for Celiac Awareness Founder, Alice BastBy Molly O'Neill |
Alice Bast, Founder of National Foundation for Celiac Awareness, at their main office in Ambler (Photo by Albert Yee).
Alice Bast founded the National Foundation for Celiac Awareness in 2003. Undiagnosed for eight years, she suffered hair loss and broken teeth, migraine headaches and severe reproductive issues. She went from one doctor to another, receiving medications to treat her symptoms but no real answers. It wasn’t until she visited her 23rd doctor that Bast finally discovered the underlying cause of her health problems: celiac disease.
Celiac is a genetic autoimmune disorder triggered by eating gluten, a protein found in wheat, barley and rye. For those affected, the body actually attacks itself by damaging the villi (fingerlike structures lining the intestinal walls), which in healthy people serve to absorb nutrients. The damage thus causes malnourishment in those affected by gluten-based disorders.
Alice didn’t let her disease get her down. In 2003, she founded the National Foundation for Celiac Awareness (located in Ambler, PA) and has since grown the organization to achieve some remarkable goals.
Ten years after its founding, we spoke with Alice Bast to find out more about her work.
Your celiac symptoms were very severe. Are different people affected in different ways?
Everybody is affected in different ways. If you go to the website, there’s a symptom checklist, and there are almost 300 signs and symptoms of celiac disease. And in 2004, the whole field of celiac disease got reclassified from a rare disease to a common disease. Now we’re down [from 97% of those afflicted] to 83% that are still undiagnosed. The symptoms vary from person to person; some people don’t even experience symptoms at all, and then they end up with some kind of cancer.
There’s another syndrome or disease, which is called non-celiac gluten sensitivity. It’s a nonspecific immune response that has been clinically recognized as less severe than celiac. You take the blood test and the antibodies won’t appear. We’ve estimated that about 6% of the population has some type of celiac, gluten intolerance or sensitivity, so altogether there’s a lot of people that have to cut gluten out of their diet!
How is a diagnosis made?
A simple blood test will let you know.
Why do so many cases go undiagnosed?
The symptoms are so varied — you think of how many people may have fatigue and depression. There needs to be more physician education of the current population of primary care doctors. I tell people, if they have 500 friends on Facebook, five or six of them may have celiac, so pass along the symptom checklist. We have the power of advocacy and the power of NFCA and others trying to pass along the word.
Has the NFCA’s focus changed since its inception in 2003?
We’re still focusing on getting folks diagnosed, but we have two parts of the organization now. We have a grant from the FDA to really study gluten and medications, and we found that we had so many people that were unable to eat. So we focused on diagnoses. And then we realized that we had to make food available and affordable. So we really had to work with grocery stores to make it more mainstream. People couldn’t afford the gluten-free products [which are often triple the cost of gluten-based products], so as we were trying to get people diagnosed, we also realized that we had to work on the other side and ensure that our community could eat safely. So we added safety to our mission — improving the quality of life for those impacted by gluten-related disorders.
What has been the NFCA’s greatest achievement so far?
We’ve dropped the undiagnosed rate from 97% to 83%. But the other part is really working to make sure food is available and affordable. We’ve worked with grocery stores, and we’ve been instrumental in doubling the size of the gluten-free marketplace.
Pennsylvania was just named GlutenFreeTravelSite’s “World’s Most Celiac-Friendly Destination.” We’re hoping to make the entire nation this way in the future so that everybody is properly diagnosed, and when a child goes to college or university they can choose based on the program rather than accommodation of their diet. We really want people to live their lives pretty normally. In the future we’ll be funding research.
How did you come up with the idea for GREAT Kitchens and GREAT Schools, which train chefs and administrators in safe food handling for gluten-free diets?
Personally, I experienced the challenges of dining out gluten-free. When I was first diagnosed, no one had heard of celiac disease. Chefs gave me a quizzical look when I said my food needed to be prepared gluten-free. So, I’d often go back into the kitchen and talk them through the process. Slowly, we started to see some recognition of gluten-free food in the restaurant industry, but what we discovered is that the staff didn’t always know about he risks of cross-contamination. That’s still our challenge today.
After launching GREAT Kitchens, we began to look at other areas where safe gluten-free options were needed. We began hearing more and more often from parents about the problems their gluten-free children were facing at school and in college, so we created a version of GREAT Kitchens that could speak to institutional settings like schools and camps.
What have been the major struggles for the NFCA?
Funding is always a struggle. There’s no food labeling law right now, and we’re working with the FDA on that. We’d really love to have a stronger legislative advocacy and research voice, and that takes funding, major funding.
What programs is the NFCA currently working on?
We have a family testing campaign that we just worked on with a couple of partners. It’s called Family Talk, because when somebody is diagnosed they often don’t realize their entire family needs to be tested. We’re really trying to broaden the message.
The other is our GREAT training program is being relaunched. We’re really excited to be working with colleges and universities and ensuring that we’re spreading the word about cross-contamination.
And we always have monthly webinars and ongoing programs and speaking engagements. In March, we’ll have a Kids Central Special, planning your child’s gluten-free summer camp. And right now we have a submission contest — Share Your Love and Gratitude — we’re really working on people embracing the fact that they can be healthy on a gluten-free diet, and to embrace that gluten-free diet. We have recipe contests, and that’s something that people love to come to the website for.
What do you hope for the NFCA to accomplish in the future?
In the future what I’m hoping is the research into celiac unlocks all of immunity. You can understand for MS or for lupus, they don’t really know what the trigger is, and in celiac the trigger is gluten. I had terrible peripheral neuropathy, which is a tingling in your fingers and toes, and when I cut gluten out it went away. So there needs to be more research in understanding more of the mechanisms behind it. It’s a serious disease, and the general public should look at it that way.