Celiac Awareness: Getting beyond gluten

It's become a trendy thing, following a gluten free diet — which typically means avoiding most wheat products like breads, beer or even many sauces — but for people who advocate for patient's with celiac disease, there is concern that people know the diet, but are unaware of the real dangers to those who suffer from the disease that makes it a medical necessity for some.

"Celiac disease is a serious genetic autoimmune disease, where if someone eats gluten, which is the protein component in wheat, rye and barely, it sets off the autoimmune reaction," said Alice Bast, president of the advocacy group Beyond Celiac. "In the past there has been so much focus on the gluten free diet that the diet has overshadowed the seriousness of this disease."


May is Celiac Awareness Month and Beyond Celiac has launched a new campaign, #60forCeliac, and a corresponding one minute video that Bast hopes will help people understand the seriousness of the disease, how to find out if they or their loved ones have it and also shine a light of hope by letting people know there is research being done to find a cure.

"We tell people to take a minute to watch the video, and share the video with their friends and family. ... You learn how to talk to family members, since it is a genetic autoimmune disease," Bast said. "As part of Celiac Awareness Month, we wanted to get past the celebrification of the gluten free diet and show people what it means to be 100 percent gluten free."

People with celiac are not just uncomfortable after consuming gluten, Bast said, the autoimmune response can lead to serious problems and has been linked with lymphoma and thyroid cancer. Even a tiny particle of gluten, such as could be found floating in the air in a commercial kitchen after someone opens a bag of flour, can cause the autoimmune response in people with celiac, she said, which can force some people to drastically alter their lives.

"We're finding that almost 50 percent of the [celiac diagnosed] community have had to sacrifice a life experience, meaning they are choosing a college based on the diet program and not the academic program or not taking a job," Bast said. "It impacts every part of a person's life. Every time you put food in your mouth, you have to think about it."

Worse still, many people with celiac are unaware that they have it. According to Bast, the prevalence of celiac in the U.S. population is estimated at about 1 percent, but only a fraction of that 1 percent — 17 percent — have been properly diagnosed. Another goal of Celiac Awareness Month is to raise that percentage.

"A lot of the work that we do at Beyond Celiac is driving prompt and early diagnosis, and to advocate for effective treatment options and potentially a cure by 2025," she said. "There is a symptom checklist on our website. We tell people to fill out the symptom checklist, go to your doctor and say, 'Test me for celiac.' And if they tell you there isn't a test, the checklist tells you what the test is."

"Many times the physician will think that that there is not a test, if they have not learned about celiac disease."

And if you are diagnosed with celiac? In that case, minimizing exposure to gluten is paramount and Beyond Celiac has resources, such as a gluten free cookbook, on its website,, according to Bast. At the same time, it's now becoming clear that what is needed is a treatment or a cure, not just a diet.

Thankfully, Bast said, progress is being made.

"There are some promising biotech companies working on treatments ranging from immunotherapy to a pill to an enzyme therapy," she said. "There's work being done. It gives you hope."