We Can No Longer Be Labeled as Faddists Chasing a Trend: Alice Bast Responds to the Celiac Class Divide

Beyond Celiac CEO Alice Bast responds to “The Celiac Class Divide,” published on Huffington Post.

By Alice Bast, Beyond Celiac CEO

In response to Chris Witte’s Huffington Post “The Celiac Class Divide,” let me offer some facts:

Celiac disease is a serious, genetic autoimmune disease that currently has only one treatment: strict adherence to a gluten-free diet. Celiac disease is real, and it is not rare. Just ask one of the estimated 425,000 Americans who have been diagnosed. Celiac disease, when untreated and undiagnosed, can have grave consequences for a patient’s health and can kill. That can be a scary thought when you consider the 2.5 million Americans who are believed to unknowingly have celiac disease. Celiac disease can further complicate a person’s health, and there’s an established connection between celiac disease and other serious illnesses like cancer.

The struggles that celiac disease patients face play out over time. Some doctors tell us we’re crazy, that our extreme pain and digestive problems will go away. The people around us tell us celiac disease doesn’t exist. When we finally do receive a diagnosis — made by a physician after undergoing a diagnostic test — we try to comply with our treatment at the mercy of others who control the ingredients in the food and beverages we consume.

All the while, we have to bear the brunt of those who label us as faddists chasing a trend.

Diseases are not trendy. To say otherwise is callous and ignorant. We do not get to an official diagnosis of celiac disease on a whim but in consultation with medical teams.

True, many people without celiac disease follow a gluten-free diet at their own behest. But can you tell simply by looking at someone whether or not they have a flat intestinal villi and can’t consume gluten without causing harm to themselves?

Despite these difficulties, the celiac disease community learns every day how to live life to the fullest and to advocate for better understanding of the disease amongst the medical community and public. The assertion that demand for gluten-free foods has made life more difficult for millennials is ridiculous. In fact, as a direct result of the work Beyond Celiac (formerly the National Foundation for Celiac Awareness), gluten-free packaged food and menu options are plentiful and affordable — the addition of gluten-free Bisquick didn’t knock the regular version off grocery store shelves or make it more expensive.

Most importantly, these efforts have made access to the only treatment for this serious, genetic autoimmune disease that much easier for hundreds of thousands of Americans.

We’ve come so far in educating the public about celiac disease that responding to accusations that it’s overblown or trendy is truly tiresome. That’s a testament to the strength and perseverance of the celiac disease community and their dedication to educating others about what they deal with. Are there class issues involved in this discussion? Yes. They result from the disparity in access to healthcare in this country and the lack of understanding about the seriousness of many diseases.

Annoyance at a person or idea is sometimes rooted in a lack of empathy. When it comes to real people living with real diseases, a little compassion goes a long way.