Opinion | Going against the grain: Debunking celiac disease misconceptions


Kevin Manuel | MLive.com/TNS

Celiac is estimated to affect one in 133 people worldwide.

By Loretta Donoghue, Senior Staff Columnist

Dining as a college student is notoriously difficult. Many of us are financially independent for the first time, responsible for figuring out where, when and what to eat each day. With time constraints, stress and easy access to junk food, eating healthy is particularly hard for us college kids.

Fortunately, living in a city provides most students with a wide range of options. The Eatery at Market Central alone has more than half a dozen food stations, and within a few blocks of campus students can find everything from Halal Pitt to Atarashi sushi. But the difficulties of dining become compounded for students with dietary restrictions. As someone who was diagnosed with celiac almost a decade ago, I’m familiar with these challenges. There is one station celiacs can eat at in Market Central, and there are a select few restaurants in South O that are celiac-safe. Dining with celiac disease presents unique obstacles that many people fail to recognize or understand — here are three things I wish everyone knew about celiac disease.

Basic understanding of celiac

Celiac is estimated to affect 1 in 133 people worldwide, but there is a widespread lack of knowledge about the disease, even within the food industry. Many people have never heard of celiac disease, including restaurant staff. I can’t count how many times I’ve gone to a restaurant and told the staff I have celiac, only for them to tell me they’ve never heard of celiac. This is a problem because when people don’t know what celiac is, or how careful we must be with our gluten-free diet, it is harder for us to eat safely. Also, just as importantly, the lack of knowledge on celiac means that people go undiagnosed, including the estimated 2.5 million undiagnosed Americans.

So here’s my quick little run down. Celiac disease, as stated by the Celiac Disease Foundation, “is a serious autoimmune disease that occurs in genetically predisposed people where the ingestion of gluten leads to damage in the small intestine.” When we eat gluten, our body attacks itself and we are no longer able to absorb nutrients. There’s no cure, and adhering to a strict gluten-free diet is the only treatment. 

We don’t mean to be difficult

Along with a lack of understanding, many people fail to recognize the severity of celiac disease. We must adhere to an incredibly strict gluten free diet because any more than 20 parts of gluten per million parts of food sample can cause damage. To put this into context, a 1-ounce slice of gluten-free bread containing 20 parts per million of gluten would contain 0.57 milligrams of gluten. This is why those of us with celiac must worry about cross-contact from shared toasters, cutting boards, and other areas where our food could be exposed to gluten particles. The damage has immediate effects, which could include some of the more than 200 known symptoms, which range from abdominal pain to arthritis, from seizures to behavioral issues. Even eating a small particle of gluten can cause symptoms that last for months. Additionally, there are long-term health effects — people with celiac are more likely to develop heart disease, GI cancers, fertility issues, other autoimmune diseases and other problems if they eat gluten for long periods of time. 

All of this is to say that celiac disease is very serious. Even one slip up can cause painful effects, so people with celiac are very careful about what they eat. We may need to turn down your homemade meal, or ask that you be willing to go to a different restaurant that can accommodate us. We often have to ask extra questions when eating out, or we may not want to eat out at all. If we do get “glutened,” we may be irritated and fatigued, and may need to cancel plans. We know that these are inconveniences to you, and we know it sucks. All we ask is that you recognize we don’t mean to be high-maintenance, we just want to stay healthy and safe. 

The gluten-free fad

I understand you’re probably tired of everyone and their mother trying a new gluten-free diet, especially if you work in the food industry. People have claimed that gluten-free diets help with weight loss, acne and general health — despite the fact that few of these claims are supported by science. It can be frustrating when people start a gluten-free diet as a fad because it creates backlash for celiacs. The rise of gluten-free diets by choice has led to the perception that all gluten-free diets are by choice. Failing to see celiac as a medical necessity, and instead seeing it as part of the fad, leads to people discounting the seriousness of our requests. Trust me, we are tired of the fad too, but it’s important to recognize that celiacs are very different from the people who go gluten-free for a month as part of an Instagram weight loss challenge. 

If you are inclined to maintain a gluten-free diet without the medical need to do so, please consider how your actions affect those of us with celiac and other disorders that require a gluten-free diet. Many people who follow the fad will tell restaurant staff that they have a gluten allergy or celiac, which is problematic because it confuses restaurant staff about what restrictions celiacs actually need. For example, if you say you have celiac, but then don’t ask the staff to use a different kitchen space to prepare your food, it could leave the staff with the impression that they do not need to do so for future celiac requests — which is incorrect. Of course, when an actual celiac goes they will ask for a separate kitchen space, but then we are just seen as a nuisance — the staff didn’t have to do that for the last “celiac,” so they assume they don’t need to for us. Claiming to have a disease when you do not have it for personal gain can negatively affect the community, and all we ask is that you be mindful of the consequences of your actions.

Loretta primarily writes about politics. Write to her at [email protected].