Updated: Aug 17
The Midwest Celiac Desert
(This article was published in FreeFrom Magazine out of Kansas City in the July/August edition)
Recently I read a phenomenal memoir about a Kansan who was born a fifth-generation wheat farmer. The author, Sarah Smarsh, explores self-identity, generational inheritance, class in America, and her lessons learned growing up on the open plains, west of Wichita. An area she says has the nickname of “breadbasket of the world”. For me, as someone who lives with Celiac (making wheat, as well as barley and rye my archnemeses), the notion of feeling alien but entirely at home among wheat fields is something I find to be very relatable.
According to the USDA, a whopping 1.8 billion bushels of wheat was harvested in the U.S. during the 2020/2021 season. The land mass required to produce that much wheat; roughly 38.1 million acres. The Midwest is the prime real estate for large wheat growing operations and has been for generations.
The irony of it all is that the heart of the country that produces the grain that goes into bread, pasta, breading, and virtually every processed food on the shelf, is a “Celiac desert” in comparison to the coastal regions of America. A quick Google search of “Celiac in the Midwest” yields articles and blog posts with headlines saying how abundant the choices of dining are for those living with Celiac. This may be true for Chicago, Kansas City, Minneapolis, and other major cities, but what about the small towns that dot the countryside? Towns that reflect my own hometown.
When I was diagnosed in late summer 2017, I was the only person in my school that had Celiac. My entire school was K-12thgrade and was made up of a little over 100 students. While I was fortunate to be an outgoing Senior in high school when I was handed my diagnosis, I can’t imagine receiving the diagnosis if I was the shy elementary schooler I once was. Access to resources in my immediate community were non-existent and the one restaurant in town at the time could never have accommodated me fully. I use my experience to help illustrate this idea of a Celiac desert.
One weekend when I went back home to escape dorm life, I remember vividly getting in my grey, single cab, Dodge Ram that I drove through most of high school. Tearing down a dirt road, headed to meet some friends, arm out the window letting the spring evening blow around the dusty interior. One of the fields I pass made me pull my arm back in the window and crank the pane of glass back up. I was passing a wheat field. There is no basis as to which a field of green wheat going past me in a blur would make me ill, but the window stayed up on premise. A gentle reminder that the thing that can wreak so much havoc on my body, is always nearby, slowly swaying in the rich black soil my neighbors cultivated.
My experience is not a unique one for Midwest Celiac’s, I am sure. The idea of packing your lunch everyday going to school, drinking water if you go out to eat with your friends, and of course, passing the sometimes-endless fields of wheat on your drive. Living in a Celiac desert is heightened by many factors that plague the Midwest already. Long distances to major cities creates a lack in healthcare centers that are equipped to diagnose someone with the auto-immune. Higher rural poverty rates compared to the urban counterparts puts pressure on getting access to gluten free foods that are priced 83% higher than gluten containing alternatives, according to a 2019 study. Rural areas are also more impacted by the digital divide, making it much more difficult for isolated Celiac individuals to find information and support via online sources. Celiac only affects around 1% of the population, so the chance of having a neighbor with a similar diet is rare when thinking of the vast swaths of land, broken up only by dusty gray, red, and brown roads that make up the Midwest. This myriad of issues, on top of living with a socially challenging disease, causes the solution to this problem of a Celiac desert to be one with many fires to be extinguished.
Growing up in rural Missouri and living and going to college in Kansas is about as authentic of a Midwest experience one can have. Every time I see homages to bundles of wheat and golden fields of grain, I can’t help but laugh to myself. Ironic, to live in America’s breadbasket, and be unable to consume even a slice.