Dear New Yorker Editors:

In response to the “Against the Grain” article by Michael Specter in the November 3, 2014 New Yorker, we at the National Foundation for Celiac Awareness (NFCA) applaud any information that increases the awareness of celiac disease and non-celiac gluten sensitivity (‘gluten sensitivity’). We encourage anyone with symptoms or a heightened risk for celiac disease to get tested, and to keep eating gluten until that time to avoid a potential “false negative” result. (Check out NFCA’s website for a free symptoms checklist and more.) For anyone diagnosed with celiac disease, the only known treatment is rigorous avoidance of gluten-containing foods; a.k.a the gluten-free diet.

To us, it is alarming that gluten-free has become a fad diet, much like the low-fat diet was a trend of the late 1980’s. While it is well established that a significant portion of those looking to reduce or eliminate gluten do so for perceived health benefits that are not supported by medical research, for a person with celiac disease, eating gluten-free is a medical necessity. It is no more a lifestyle choice than insulin is for a diabetic.

The truth is, celiac disease is a serious genetic autoimmune condition that, if left undiagnosed and untreated, can lead to catastrophic health consequences – like infertility, osteoporosis, other autoimmune diseases and even certain cancers. Given the availability of gluten-free products, it may seem that life for those with celiac disease has never been better. But this is far from the truth. People with celiac disease eat in fear of food every day…as a matter of fact, 70% of people with celiac disease continue to experience intestinal damage because of inadvertent gluten exposure in the environment.

Non-celiac gluten sensitivity is another matter, however. This field is in its infancy and researchers who study the topic agree that gluten sensitivity is a legitimate medical condition for up to 6% of the population. While many don’t take celiac disease seriously because the treatment is diet, not pharmaceuticals, those with gluten sensitivity have an even harder time navigating their condition because it is largely self-diagnosed. Your article pointed out that self-diagnosis is notoriously unreliable, but without a diagnostic tool or physicians that are educated about celiac disease and gluten sensitivity, many people who experience debilitating symptoms for years have no other choice.

The lack of diagnostic testing for gluten sensitivity, combined with the celebritization of the gluten-free diet and abundant misinformation about the “benefits” eating gluten-free creates a Wild West effect that makes it impossible for the average person to navigate responsibly.

Add to that the backlash we are now seeing in the food industry and mainstream media, celiac disease and the medical need to avoid gluten gets lost in the conversation. The more the treatment for this disease is ridiculed, the harder it is for people to decide they should get tested. And, the more difficult it may be for people diagnosed with celiac disease to openly advocate for their medical needs. No one wants to be the butt of a South Park joke.

Perhaps renaming the treatment could reframe the conversation. Should we call it the celiac diet? Perhaps the gluten-free prescription?

No one wants to be thought of as one of “those people,” branded as trend-followers adopting the latest weight loss miracle diet.

We applaud the New Yorker in providing the full story and pledge to continue our charge to provide accurate, credible, evidence-based information that promotes celiac disease testing and patient-centered medical care. Help us spread the word that gluten-free, for as many as 21 million Americans, is no fad. It’s our path to live life to the fullest. It is the only way to lead a healthy life.

To Our GREAT Health,

Alice Bast
President and CEO