In honor of Celiac Disease Awareness Month, I have a guest post from an instructor at Arkansas State University, Sarah Mayberry Scott, MA, who also happens to have a diagnosis of celiac disease.
There are a multitude of symptoms that can cause the disease to be misdiagnosed. Each individual diagnosed with celiac disease can experience different symptoms ranging from upset stomach and diarrhea to more severe symptoms like neurological problems, infertility, or intestinal cancer. The only treatment for celiac disease is a strict gluten free diet. Besides the serious physical repercussions of celiac disease, the disease often is accompanied by emotional distress, as well.
Personally, celiac disease has increased my anxiety around traveling and social situations, both requiring a great deal of preparation and anticipation. When I travel, I pack plenty of gluten free snacks because I am always unsure of when and where I will be able to eat. When I attend a wedding, I call weeks ahead to speak to the caterer to know exactly how the food is prepared and what I will be able to eat. Before eating in restaurants, I search menus online to know what my best possible options are before arriving. Going with a group of people to a new restaurant is probably one of the most nerve-wracking things, as I have not scoped the menu ahead of time. I feel self-conscious having to ask lots of questions and oftentimes having to ask to speak to a manager or chef. Everywhere I go, I immediately seek out the closest bathroom in case something that was promised to be “gluten free” turns out to be misleading. On business trips I always get a single hotel room so the bathroom space does not have to be shared with anyone else. I carry anti-nausea pills, car-sickness medication, and a strong probiotic in my purse at all times.
Some of my friends who remember me pre-celiac have a hard time understanding why I can’t eat foods now that I used to. Having to field questions like, “Can’t you have just a little?” and comments like, “We want to go to this [very non-celiac friendly] restaurant, can’t you just pack a snack in your purse?” leave me frustrated and isolated. I find myself turning down trips, vacations, or even dinner plans because I don’t want to inconvenience others. I am lucky that my family and my in-laws have been beyond accommodating in my new diet requirements.
It’s easy to downplay the psychological impact celiac disease can have. It has even become the target of jokes and derision. But for those affected, there is nothing funny about the possible complications of celiac disease- uncomfortable at best, dangerous at worst. Significant lifestyle accommodations are required and are not something that anyone with celiac disease desires. For many people, these disruptions and discomfort can bring on feelings of uncertainty, anxiety, or depression. If you know and love someone with celiac disease make sure they know they are welcome. Any demonstration of an attempt to be accommodating is appreciated. Above all, simply find ways to show that you really do treasure spending time with them.
Psychosocial Impact of Celiac Disease:
Celiac Disease as an Invisible Illness:
Resources for Caregivers of Kids with Celiac Disease:
Non-Celiac Gluten Sensitivity: