Stop Making Light of the Gluten-Free Diet

02/25/2016 08:19 am ET | Updated Feb 26, 2016
Nick Ansell/PA Archive

Every day, I have to fight to prove that my disease is real, legitimate and serious. Every day, I have to pay attention to everything that I put in my mouth. One slip up can leave me incapacitated for days and set me up for long-term health consequences like thyroid disease, osteoporosis and even cancer.

Like 3 million other Americans, I have celiac disease -- a serious genetic autoimmune disease. There's no pill to treat it. No magic cure. All we can do is try to avoid gluten 100 percent of the time. Let me tell you, this is no easy feat.

Celebrities, various companies and, now, presidential candidates are making it increasingly difficult for people who need a gluten-free diet to be taken seriously. This disregard for the health of the celiac disease community leads us to be exposed to gluten, which is poison for us. We become sick for days, even weeks, and we are vulnerable to more serious health risks if repeated exposure occurs.

Joy Behar. NASCAR. Miley Cyrus. Gwyneth Paltrow. This is just a small list of the celebrities and public entities who have openly poked fun at celiac disease and the gluten-free diet, or who have helped spur the misconception that gluten-free is the way to be for all. Just last week, Republican presidential candidate Ted Cruz added himself to that list. His jab? In a speech about military strength, he equated the gluten-free diet with political correctness saying, "...the last thing any commander should need to worry about is the grades he is getting from some plush-bottomed Pentagon bureaucrat for political correctness or social experiments - or providing gluten-free MREs."

The celiac disease community often lives in fear. We fear food we haven't prepared ourselves. We question food labels that bear promises of being gluten-free. We excuse ourselves from parties and invitations where our life-saving prescription of a gluten-free diet could become the center of conversation or worse - completely ignored. In a survey of Beyond Celiac community members, we found that 49% of those surveyed have avoided a life experience because of their celiac disease diagnosis or their need to adhere to a gluten-free diet. That doesn't just mean skipping the company potluck. Our community is passing on dream jobs, choosing colleges based on cafeteria menus and forgoing family vacations for fear of not being able to eat.

Cruz's gluten-free comments bring this fear to light. Men and women in our military avoid being tested for celiac disease, even when they know they are at-risk, for fear of being discharged or assigned to a different duty station. Currently, 83 percent of people with celiac disease remain misdiagnosed or undiagnosed. The negative conversation around the gluten-free diet puts up yet another barrier to a fast and accurate diagnosis. Physician awareness about celiac disease is low, and people who are diagnosed wait an average of 6-10 years for the answer to what's ailing them. Factor in the fear of being labeled as one of "those people," and you can see why many don't pursue a diagnosis. We don't want to have to analyze everything about what we put in our mouths. We just have to. Flippant and uneducated comments about the gluten-free diet literally set people up for years of misdiagnosis and push them closer to dealing with the serious health consequences caused by untreated celiac disease.

It is ironic that the one thing that has saved our lives - the gluten-free diet - is the same thing that is killing us. The idea that gluten-free is just a fad means that our foods aren't prepared properly and aren't truly free from gluten-containing ingredients. We're regularly exposed to gluten, something that hurts us physically and emotionally. As we retreat from situations where food is involved, we isolate ourselves and stop engaging in the things we love most. Shockingly, research shows that the ill health effects of loneliness are just as dangerous as the effects from smoking and twice as dangerous as obesity. Smoking and obesity.

I say all of this to simply make a plea. Stop making light of the gluten-free diet. Are there people out there following a gluten-free diet for its perceived health benefits? Absolutely. Is it tempting to make fun of cultural fads? Certainly. Would we make fun of people with diabetes for needing to monitor their diets and use insulin? No. People with celiac disease don't have a choice. We have to eat gluten-free until there is a cure. When this fad is no longer the diet du jour, we will still be doing our best to live the only way we can: gluten-free.