Psychological Impact of Celiac Disease… From Someone With Celiac Disease

The following is a guest post from the blog of Dr. Kristin Addison-Brown, of NEA Neuropsychology.

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 cCeliac Disease.No Wheateliac disease.

Celiac disease affects 1 in 133 Americans. It is an autoimmune disease that affects how the body absorbs nutrients. The disease is triggered by a genetic marker and can only become active if the person is consuming gluten. Gluten is a protein found in wheat, barley, and rye; it gives your breads, pastries, and pastas that doughy-sticky texture that makes them so tasty. When a person with celiac disease eats gluten, the villi in their intestine start to erode. The villi are finger-shaped, sponge-like parts of your intestinal tract that are responsible for absorbing nutrients. Once these are damaged, the body cannot absorb the nutrients it needs. This can leave someone anemic, malnourished, and susceptible to a host of other ailments and diseases.

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.

Table settingSome 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.

Resources

Fast Facts About Celiac Disease:
http://www.beyondceliac.org/awarenessmonth/Fast-Facts-about-Celiac-Disease-Infographic/1448/

Psychosocial Impact of Celiac Disease:
http://www.beyondceliac.org/SiteData/images/Psychosoci/eaafcd7c8e8ceb6c/Psychosocial%20Impacts%20of%20Celiac%20Disease%20border.jpg

Celiac Disease as an Invisible Illness: http://www.beyondceliac.org/awarenessmonth/Invisible-Illness-Infographic/1449/

Resources for Caregivers of Kids with Celiac Disease:
http://www.beyondceliac.org/living-with-celiac-disease/info-for-parents/

Non-Celiac Gluten Sensitivity:
http://www.beyondceliac.org/celiac-disease/non-celiac-gluten-sensitivity/