It seems everyone is talking about the gluten-free diet, from Consumer Reports to the New York Times, the Super Bowl to South Park.
A NASCAR pregame Super Bowl commercial poked fun by proclaiming, “When our idea of danger is eating gluten, there’s trouble afoot.” Jimmy Kimmel Live taped a bit in which people on the street said they were on the diet. Kimmel’s audience roared when not one person shown in the clip knew what gluten was.
How does this kind of attention affect the gluten-free world? Is there no such thing as bad publicity or has media coverage gone overboard?
Gluten-Free Living recently started a conversation on the topic between two leading gluten-free media experts. Amy Levy offers gluten-free marketing services through her Los Angeles firm, Amy Levy Public Relations. Levy’s 7-year-old daughter has celiac disease, and Levy follows the gluten-free diet. Her gluten-free clients include restaurants, food makers, authors and medical professionals. “We work to expose gluten-free products to consumers, influencers and tastemakers,” she says.
Alice Bast aims to increase public awareness about celiac disease and gluten sensitivity in her role as president and chief executive officer of the National Foundation for Celiac Awareness. She’s a recognized expert who is often quoted in mainstream media stories about the gluten-free diet and lifestyle and is a contributor to HuffingtonPost.com.
We asked Levy and Bast to dissect the way the media attention is affecting the gluten-free community as a whole and those who follow the diet for medical reasons in particular.
Amy Leger: Not long ago most people hadn’t even heard about gluten. Now major media outlets are tackling the subject frequently.How has gluten-free content changed from then until now?
Alice Bast: About 10 years ago you didn’t hear anybody in the media talking about gluten free. Now what we are seeing is that while it’s almost open season to talk about the gluten-free diet, celiac disease and other gluten-related disorders are becoming largely invisible. We are excited that gluten free is being mentioned in the media. We are happy for the availability and affordability in the supermarkets that comes with its popularity. But tune into popular culture, and it’s now OK to make fun of people who are gluten free. The conversation shifted from the desired health benefits to a source of ridicule in some of the media.
Amy Levy: I agree with Alice. People were not talking about gluten free 10 years ago. And people with celiac disease were hard pressed to find choices. Mintel, the research company, has been leading the way with consumer research. Back in October 2013, they started to say that sales in gluten-free foods were estimated to reach $10.5 billion, and people were following a gluten-free diet for other reasons than gluten sensitivity. Sixty-five percent thought it was healthier. We also definitely know people thought they would lose weight even though gluten-free food often has extra sugar and fat to help it taste better.
As of last August the [U.S. Food and Drug Administration’s] gluten-free labeling rule became official and labeling foods gluten free became a national discussion. Consumers took note. It was not the celiac community that was talking about gluten free food as much as it was everyone else.
I think the media making fun of people who have celiac disease or making fun of people who follow a gluten-free diet brings the subject to the forefront. We can be insulted, and we can roll our eyes, and we can criticize Super Bowl commercials and be upset about South Park. But we have to admit the more the media talks about gluten free and the more companies that put their products on the shelves, the better it is for us.
Amy Leger: Would you agree Alice? Is any publicity good publicity for gluten free?
Alice Bast: Amy is a public relations expert. As she was saying, any publicity is publicity, good or bad. The burden of celiac disease is tough. Right now when gluten free is covered in the media, they give celiac disease a one-liner like “We know celiac is out there … but” … and then the gluten-free diet gets all of the attention.
So we need to look at how we regain attention for celiac disease and gluten sensitivity and raise research dollars. Our quality of life has drastically changed. Twenty-one years ago I ordered my food through support groups and got it from Canada. Now you walk through supermarkets, and gluten-free food is available and affordable. When I meet with chefs and even lunch ladies from schools, they are confused. They don’t understand how serious cross contact with gluten is. They get very frustrated because they are hearing so much in popular media about gluten free and weight loss. The seriousness of celiac disease gets discounted.
Amy Levy: There was an article in the New York Times in June of 2014 saying if you’re not gluten free, you likely know someone who is … and that this style of eating has become a way of life for many and a national punchline for others.
For someone who has celiac disease, the gluten-free diet is a lifelong prescription. Yes, there are people who are losing weight, people who have psoriasis, headaches and depression who feel the gluten-free diet will drastically change their lives. But the only people who really need it are people with celiac disease and gluten sensitivity.
But I appreciate the conversation because Alice, for example, couldn’t find food 20 years ago, and now she can find it.
Alice Bast: Right.
Amy Leger: Is there a difference between making fun of the gluten-free fad and making fun of celiac disease?
Amy Levy: There is this under-their-breath thing where they say, “All these people out there are eating gluten free and they don’t know what in the hell they are talking about… Of course 1 percent of the population has celiac disease, and they need to do gluten free … but everybody else …” They sort of mumble that there are people who need it.
Is this a fad diet? The fact is diets come and go … but I can understand that people feel that they are being made fun of. I do. It’s insulting and it’s hurtful. When someone says they have ovarian cancer or prostate cancer, and the doctor says they can’t eat processed foods and they are eating organic chicken, wild salmon and organic fruit … do you make fun of them? No.
But because gluten free is this thing that everyone’s doing, it has become mainstream, and that’s why people are making fun of it.
But I’ll reiterate I’m glad it’s putting more gluten-free options on store shelves.
Alice Bast: This is what I remind people. We work with people where they are. They don’t realize 20 years ago gluten free wasn’t mainstream. When I started the foundation 11 years ago, one of our goals was to work with making gluten free mainstream.
Amy Levy: You did it. You won.
Alice Bast: Yes. And part of it was working with Wal-Mart, making sure gluten-free foods are available and affordable and all these brands are on store shelves.
But I was surprised recently that Joy Behar [comedian and former host of The View] openly started questioning whether celiac disease was a serious genetic autoimmune disease and saying if it was, there would be a foundation looking for a cure.
Well, P.S., there is a foundation looking for a cure. So that’s when we look at the media and try to turn that conversation. We have to make sure our voices are being heard. Recently we asked our community what happens when you have cross-contamination with gluten. In a very short period, 900 people commented. It is almost like we are apologizing. “I really have celiac disease, take me seriously, it could lead to lymphoma.”
You hear these conversations because the media is minimizing the medical need for a gluten-free diet. Many people are just trying the diet, and then they feel better, and they are not getting tested. They are gluten free but they [are not diagnosed with celiac disease].
So people may be on the gluten-free diet and not taking it seriously. They may not realize there are long-term health consequences. But that’s not sexy. We have to get the medicalization of the gluten-free diet in the news as well.
Amy Levy: I wish there could be a sign in the grocery store that says before you buy this gluten-free product, take a simple blood test. If it shows you have celiac disease, you are doing the right thing by eating gluten free.
Alice Bast: I would love to have a celebrity to talk about celiac disease. In the beginning they weren’t so keen to call out that they had it.
Amy Levy: Zooey Deschanel talks about being gluten free. Chelsea Clinton had a gluten-free wedding cake.
Amy Leger: 2014 was a rough year for gluten in the media … and 2015 isn’t shaping up to be much better. What are your opinions about these gluten-free moments in the media? First the NASCAR commercial on Super Bowl Sunday?
Alice Bast: I was pretty upset when I heard about the ad. While there are a lot of people out there trying the gluten-free diet to lose weight or for some other perceived health benefit, there are lots of others who are just hoping to find the answer to their ailments and feel better.
Every time someone makes fun of the gluten-free diet, people take those of us who need gluten free less seriously and that can be dangerous for ourcommunity because the burden of the disease is so onerous.
In general I think it is healthy for people to take a step back and laugh at themselves as a way of coping with something that might be difficult. The difference here is that the laughter at the community’s expense is making everyday life more challenging.
Amy Levy: The fact that the NASCAR ad was so irresponsible and insensitive to suggest that someone strong cannot possibly be gluten free was offensive. But again, I am glad our plight and language was seen by more viewers than any television broadcast in history.
Amy Leger: Jimmy Kimmel’s “What is Gluten” segment?
Amy Levy: I am a fan of Jimmy Kimmel. While I am disappointed that he is misinformed about celiac disease and that a life-long gluten-free diet is prescribed by doctors unanimously, I see that it has become a bit of a fad that he sees worthy of taking a shot at. The fact that people he interviewed who are on a gluten-free diet by choice and don’t know why they are doing it makes it ripe for satire.
Alice Bast: I have mixed emotions on this one. I appreciate the end result of the video—some people eating gluten free don’t even know what gluten itself is. That definitely drives home the point that for many people gluten free is just a passing trend.
Unfortunately the video doesn’t really help out people with celiac or gluten sensitivity. It evoked some laughs, but it doesn’t show the other side that there are people who need gluten-free options.
Amy Leger: South Park gluten-free episode?
Alice Bast: The show offends everyone so it’s kind of expected from this sort of show as opposed to a news outlet. Frankly our community had a good laugh about the episode.
Most of the comments shared on our Facebook page about the episode were positive. South Park is outlandish in general, and our community didn’t seem to take the message to heart.
Amy Levy: South Park has historically been an “equal-opportunity offender.” The celiac community might see it as an “honor” that [the show’s producers] think enough people know what gluten free is that they can do a show on it.
Amy Leger: Coverage of the “gluten sensitivity isn’t real” study?
Amy Levy: This is relatively serious. Peter Gibson, M.D., of Monash University in Australia retracts his earlier study and says a lot of gluten sensitivity is psychological. But one study does not a case make. We have Joseph Murray, M.D., of the Mayo Clinic, Melinda Dennis, R.D., of Beth Israel Deaconess Medical Center, Stefano Guandalini, M.D., of the University of Chicago Celiac Disease Center, and Alessio Fasano, M.D., of the Center for Celiac Research and Treatment at MassGeneral Hospital for Children, who all think gluten sensitivity is real, and they are doing research on it. We have to get their studies better publicized to refute the naysayers.
Alice Bast: I wish that the headlines were not so cut-and-dry. The study did not say gluten sensitivity isn’t real. It simply said there could be more to it than just gluten. That is important information for people to have, especially those who are strictly gluten free but still having symptoms.
The other issue here is that many people don’t read past the headline. With brazen headlines claiming “gluten sensitivity isn’t real,” you create so many scenarios in which people see it, take it for fact and don’t read any further. It makes it that much harder for people with gluten sensitivity to be taken seriously in their day-to-day lives.
Amy Leger: So how do we change the conversation to be more constructive?
Amy Levy: The real story that gluten-free diets are a medical necessity for people with celiac disease has to come out more forcefully.The messaging needs to be changed. We need our lifestyle to stop being a joke.
Eating gluten free is not Botox. Eating gluten free is not teeth whitening, liposuction or breast implants. I live in Los Angeles. We have a lot of smoothies, wheat grass, Botox, fake eyelashes out here. Gluten free is not that.
Alice Bast: We have to take the message back. It is up to us to do that. We need to turn our frustrations into actions. Education is a huge part of it. The only way we can get the word out there is by rising above the noise of the gluten-free diet and having the funding to keep putting celiac disease and gluten sensitivity back in the spotlight.
We need to be more vocal about our needs and why we have those needs. For example people should tell a restaurant if they got sick from a gluten-free meal, but so many don’t follow up with the restaurant to let them know that mistakes were made. To me that is a huge missed opportunity. We’re not going to change the conversation if we don’t speak up.
Many people have suggested running television commercials. I would love to be able to put the right messaging out to millions of people at one time. As a nonprofit it is hard to compete with fad messages that are put out by those with bigger pocketbooks. We rely on community support—including gluten-free food manufacturers. If we could crowdsource more funds we could really continue to make a big impact.
Amy Leger, Gluten-Free Living family editor, frequently interviews those who are shaping the future of the gluten-free community. For the record, she did laugh at South Park, but was a little heartbroken by the Jimmy Kimmel video because of the negative perspective of the gluten-free diet it fed into.