A Q&A With NFCA Founder Alice Bast

The celiac warrior and winner of the 2010 Philadelphia Award opens up about the past, the future—and her favorite gluten-free goodies

Alice Bast, NFCA founder and recipient of the 2010 Philadelphia Award.

If you’ve ever walked into a Philly restaurant and ordered a gluten-free item off the menu, I hope you took a moment to pause and mentally thank Alice Bast, the woman who made it possible. As the Founder and President of the National Foundation for Celiac Awareness (NFCA), Bast has been working tirelessly to raise awareness about celiac disease, facilitate research, and increase gluten-free options in our area and around the country since starting the NFCA in 2003. Considering she started as a one-woman show and still only employs a team of six, all that she’s done for those suffering with the autoimmune disorder is downright award-worthy—which is why Bast is taking home the 2010 Philadelphia Award, an honor given to an individual who has improved the region by educating, enriching and inspiring the people who live there. On May 12, five days before tonight’s award ceremony, Bast took a moment out her busy schedule to speak about her past, NFCA’s accomplishments—and her plans for the future.

Be Well Philly: What inspired you to start the NFCA?

Alice Bast: What inspired me to start the NFCA was the fact that there were support groups around the country, but there wasn’t an organization that actively looked to get undiagnosed folks diagnosed properly with celiac disease so that they could restore their health and reclaim their life. Unfortunately, it still takes the average person six to ten years to get properly diagnosed, and a change in diet can change your health. I was very passionate about it, and I thought I could take my business skills and create an organization that really had impact.

BWP: You yourself have celiac disease. How long did it take you to get diagnosed?

AB: It took me six years to figure out what was wrong with me. I had a full-term stillbirth, three miscarriages, and my youngest daughter was two pounds when she was born. I lost 25 pounds and the doctors—whatever the symptom was, they would treat it. So if I had a migraine headache, they would say, “migraine medicine: Imitrex.” I had anemia, so it was like, “Oh, you need iron.” So I kept going from doctor to doctor to doctor to doctor and getting the symptoms treated, and of course everyone thought I had anorexia because I’m five-foot-nine, and I was almost down to 100 pounds.

BWP: Wow.

AB: So finally, the veterinarian, who’s a friend of mine, said, “You know, sometimes dogs have problems with their grain.” And I said, “Well, what do you mean?” And she goes, “I don’t know. Something with wheat. Dogs sometimes can’t have wheat. Why don’t you ask your doctor…you’re on a high-carb diet, so why don’t you ask the doctor to test you?” So I went to the gastroenterologist and asked him to test me, and he told me that I couldn’t have it. And I said, “Well, what’s the test?” And he said, “It’s a blood test.” And I said, “A blood test? Oh my God, you’ve done every test known to man!” So he ran the blood test, and sure enough, my antibodies were positive. I went on a gluten-free diet, and within two weeks, I felt like my health was being restored and my life was being reclaimed. And then I thought, “Wow,” and I started to do the research. And at that point in time, I actually went back to school with Penn and got an NIH grant. I was the primary investigator to get the NIH grant to really help to raise awareness of celiac disease. And it’s kind of rare for a layperson to do this kind of stuff, but I was so passionate to help other people because I helped to run a support group at the time. I volunteered, and there were so many people with varying symptoms, and they all just would go to doctors for this ten-year time before they got diagnosed.

And there was a lot of cancer…a lot of cancer. Like, my mother died of pancreatic cancer; that’s one of the cancers that’s associated with undiagnosed celiac disease.

BWP: Wow, I didn’t realize you could get cancer from it, too. Really?

AB: Yes, it can lead cancer. Lymphoma’s the most common, GI cancer and thyroid cancer. A lot of the GI cancers are associated with inflammation. That’s why it’s really important. Our goal is to diagnose one million people by 2015 in order to really help prevent chronic illness and cancer and other autoimmune diseases.

BWP: Well, it’s obvious that you’ve done a great job. What are some of the accomplishments of the NFCA that you’re most proud of?

AB: There are a couple accomplishments that we’re extremely proud of. First of all, we’ve been involved in doubling the size of the [gluten-free] market place, and it will be doubled again in the next several years. We also have been instrumental in helping the Philadelphia area have the first gluten-free neighborhood in the country. And what does that mean? That means having restaurants that are trained to understand and provide gluten-free foods. We also launched a continuing medical education program for primary-care doctors, nurses, and such. It’s the first one in the entire country, so we have a really robust educational campaign. We also launched a program that teaches pharmacists around the country about the fact that there can be gluten in medication, and so those are really some of the items we’re most excited about. Originally, we reached out to the consumer to get them to ask their doctor to test them, and now we’ve been working with the physician community. And I guess, if I had to pick the number one, it would be that continuing medical program, that’s free online. All of this can be found at celiaccentral.org.

BWP: So doctors and nurses can go to your site and learn everything there for free?

AB: Yeah. We have a whole site dedicated to healthcare professionals, so it’s all healthcare professional-driven. If any—whether it’s a doctor, it’s a nurse—healthcare professional wants to understand the signs and symptoms of celiac disease, they can go to the website and take a course, and they can even get credit for that course. It’s free for them to take it.

BWP: How many medical professionals have you had go through the course?

AB: We’ve had several hundred. We launched it this summer, and we really want to increase that. That’s what we’ve really been working towards, and we’ve partnered with some of the diagnostic companies to get the word out.

BWP: What are your thoughts on the gluten-free diet trend?

AB: We’ve actually worked with the National Restaurant Association and worked in food service to really push gluten-free food into the stadiums and restaurants in Philadelphia, and we’ve done this in other cities around the country as well. As [a result], there are a lot of people who’ve gone on a gluten-free diet because they’re feeling better, and we think that’s great. We think that’s fine, but we know that it’s really important to the people that have the autoimmune disease, which is celiac, to know that they have a serious autoimmune disease and they have to be on a gluten-free diet. It’s not a lifestyle choice. It is a matter of their health.

BWP: How did your organization help us become the first gluten-free neighborhood? Was it tough to get restaurants to come on board?

AB: We organized our annual event, Appetite for Awareness. We actually partnered doctors and chefs together [to create gluten-free dishes]. We did it in other cities as well, but [for Philadelphia] we said, “Okay. Let’s work with more restaurants than any other city.” Many [local restaurants] have participated in Appetite for Awareness so they’ve really embraced cooking with a lot of fun grains that are healthy, nutritious, and awesome, like quinoa. Also, we have a complete listing of all the restaurants that we’ve worked with to create the gluten-free neighborhood on our website. And what that means is that the restaurants listed are trained [to cook gluten-free]. They go through our great, free training program, which again is at celiaccentral.org, to understand cross contamination so they really understand rather than just saying, “Oh, we can do it.” Because we treat gluten like Salmonella.

We’ve also worked with the hospital centers to create interest so that there was the best medical [care for celiac] right in our backyard, and we’ve got physicians all over the region participating. There’s usually one celiac center in the city, but here we have Jefferson, CHOP, Paoli, and we’ve even worked with Dupont.

BWP: As you said earlier, some people with celiac disease go undiagnosed for years. What are some of the typical symptoms that people should look for?

AB: Many of the typical symptoms are bloating and, you know, it’s not so sexy, but gas, abdominal pain, and—you’re not going to want to put this down, but I just came from a medical conference—diarrhea and constipation. Fatigue is a big one; a tingly feeling in your toes, almost like a neurologic disorder. People with thyroid problems, that could be a big symptom. There’s a connection between diabetes and celiac disease as well. A lot of the time it shows up as anemia or osteoporosis, because you’re not absorbing your nutrients. And then, of course, there’s also the reproductive health problem, so when women start to have recurrent miscarriages, infertility, even stillbirth, and it’s undiagnosed, that’s a reason to be tested. You can go to the symptom checklist at celiaccentral.org, and then download the symptom checklist and ask your doctor to test you.

BWP: How expensive is the blood test?

AB: It depends, but it’s [normally] covered by insurance. It’s somewhere around $30.

BWP: What kind of specialist should you see if you think you might have celiac?

AB: A gastroenterologist. And there’s a gastroenterologist in any hospital, and if they do get diagnosed, they should follow up with a dietician or nutritionist, but the NFCA website offers free comprehensive information and support materials to celiac patients, their families, and healthcare professionals. We have lots of recipes; we have videos; we have blogs; we have a Facebook community; we have all the social media; we also have a kids’ corner, where we talk about how to you live, you know, when you’re a teenager, what you can do and expect. We have information on hidden sources of gluten so people can fully understand that gluten can be in their mediation, gluten can be in soy sauce, it’s in licorice … So we really have comprehensive information to support the families as well. The other thing that’s really exciting about celiac disease is there is a treatment! You know, a lot of autoimmune diseases don’t have treatments, and we do: A gluten-free diet. It’s a totally treatable disease.

BWP: What if you’ve been eating gluten your whole life? Is the damage irreversible, or does the body repair itself?

AB: That’s a great question! It repairs itself. The body repairs itself and that’s why it’s critical that if you have celiac, you can’t have even a little bit of gluten or else you’ll get sick. And not everybody has overt symptoms. Believe it or not, there’s still a group of [undiagnosed] people out there, and it’s a large group of people that don’t feel they have any symptoms at all. So they may be taking gluten, but it’s doing intestinal damage, and then like we talked about, leading to cancer, so it’s really important to be 100-percent gluten-free [after diagnosis].

BWP: Do you think hospitals should just start testing everyone to make sure people don’t have celiac from the get-go?

AB: Well, you’ve hit very good questions. In some countries in Europe, they do do that. I just came back from Digestive Disease Week, and there seems to be a debate. We’re looking to the World Health Organization to decide about a standardized screening. I mean, we know that over 10 billion dollars is wasted on unnecessary medical care treatment annually for undiagnosed celiac, but right now my medical advisory board has a difference in opinion [about what studies need to be done.] There’s not a lot of funding for celiac disease because before 2004, it was considered a rare disease of childhood. We really need the funding for better research [and to figure out] what’s the most appropriate way to diagnose the one million people so that we can prevent chronic illness.

BWP: So what’s on the horizon for you guys? What are your goals for the next two years?

AB: Number one is to continue on our campaign to diagnose one million people and to stop chronic illness and really have a wellness model to prevent the cancer and serious health problems. So we’re really on a very targeted campaign for diagnosis and education. Second, we want to make sure we that there’s access to affordable food. Right now, the higher-end restaurants are able to do gluten-free, but we’re really looking at the under-served community. If there’s a treatment that’s available but you can’t get it because you can’t afford it, that’s bad. The increased cost of the food is not covered by insurance, so we’re really trying to make it accessible and affordable, and have also been working to get into food service into public schools. We also are launching a [gluten-free] safety seal in June. We partnered with QAI, Quality Assurance International, and they’re one of the largest certifying bodies in the world, and we partnered with them to launch a seal to make sure the food that we’re eating is safe.

BWP: That’s fantastic. So, what are your gluten-free-friendly spots to eat in Philly?

AB: Well, I love Bar Ferdinand. I love Buddakan. I like Butcher and Singer; one of my favorite chefs is there, chef Anthony Goodwin. And, of course Jose Garces—he has really been amazing to us about working with gluten-free options. We’ve actually worked with George Perrier to make gluten-free really delicious and chic. Also, right outside of Philadelphia, there’s a little restaurant called Pasta Pomodoro that’s very affordable and has gluten-free pasta, and it’s pretty, pretty incredible. And Chef Pasquale Masters has gone through all our training, and he really gets it. I know, again, that we’re talking higher-end stuff, but I love octopus, and I like crab cakes, and I like to order things that I might not be able to have otherwise, so it’s really fun to be able to go into a restaurant. When I got diagnosed 17 years ago, the doctor told me that I’d never be able to eat out again, actually.

BWP: What are your must-buy items at the grocery store?

AB: So we’ve worked with the grocery stores, too: Whole Foods, Wegmans, ShopRite and Walmart. But I don’t want people to forget that, even though they have an autoimmune issue, they still need to eat the fruits and the vegetables and the rest of good stuff that’s around the perimeter of the supermarket. Some people go on what I call a “gluten-free junk diet.” Of course, there are some amazing products that I always get. If I’m going to get cheese and crackers, I know that Crunchmaster makes an amazing cracker; it’s really pretty incredible. Blue Diamond also makes delicious crackers. My entire family will eat those. Rudi’s makes really wonderful, incredible, enriched gluten-free bread, which is pretty fabulous. And pasta! There’s a lot of different pasta companies out there that make some incredible products. Rich Products make a whole variety of gluten-free products that are readily available . Oh, the other thing is soy sauce! Gluten-free soy sauce. That’s the tip: San-J makes a really wonderful gluten-free soy sauce. If you need a quick meal, get Thai Kitchen Simply Asia products. They have rice noodle bowls. They’re ready in three minutes! For the woman on the go, it’s awesome.

BWP: Is there anything else we should know about celiac disease before we wrap up?

AB: Yeah. Celiac disease is the most common autoimmune disease and the most under-diagnosed. And people with celiac need to know that they can’t tolerate the gluten protein, which is found in product or additive containing wheat, rye, or barley. This intolerance causes small intestine damage and then you have this wide range of occurring symptoms. Also, it’s really important that if you think you have a problem with gluten, that you continue eating a gluten-containing diet until you get tested. If you want more information, go to celiaccentral.org.

BWP: Great. What can people do if they want to help?

AB: Everything is free on the website, but we do need the donations. Every dollar counts, and especially counts for getting gluten-free foods to the under-served community. People think it’s great that there’s gluten-free food everywhere, but it does take a lot. I haven’t had a day off since January, so we work hard. We work really hard to make a difference.

BWP: Well, thank you for everything you’re doing. It’s always inspiring to hear about someone who took a difficult personal situation and turned it into something good.

AB: Oh, thanks so much. Of course, you can hear the passion. You know, people call me. I have one story where a woman was told that she was going to need a liver transplant in the next five years. Her sister-in-law called me and said, “What do you think?” And I said, “Well, get her tested.” Do you know, she’s totally healthy now? She doesn’t need to have a liver transplant; she has celiac.