it’s not pretend
In October of 2020, I was diagnosed with celiac disease, an autoimmune disease caused by a reaction to gluten. There is no cure for celiac disease and the only treatment is a lifelong adherence to a gluten-free diet. Even for someone such as myself — white, not living in poverty, speaking fluent English, with access to health insurance dollars — this mysterious disease is challenging at the best of times, and debilitating at the worst of times. Despite being 8 months into my diagnosis and a 14 months into some form of gluten-free diet, I have not yet determined which of my symptoms are caused by celiac, and which are caused by other health issues; unfortunately, folks with autoimmune diseases are more likely to suffer from other conditions. The symptoms of celiac run the gamut from bloating, abdominal pain and headaches to depression and anxiety to nervous system injury, joint pain, and skin rashes. I ruminate frequently on which of my health issues, past and present, might be associated with my diagnosis.
Food is not only fuel, but it is community, it is connection. My relationship to eating has changed, and it isn’t casual or easy anymore, with gatherings requiring reminders to friends, family members and loved ones. For a food item to be safe for celiacs, it doesn’t just require the food itself to be free of gluten, but the spaces in which the food is prepared and packaged must be free of wheat, rye, spelt, and barley. A bakery that sells “gluten-free” items but also prepares items containing wheat is likely not safe for me and others like me. Eating out is anxiety-inducing; even as I write this I am experiencing pain and discomfort, unsure if I ate gluten last night when we ordered from a place that declares its menu to be 100% gluten-free, or if I accidentally ingested it at some other time this week.
Celiac disease is genetic, but I’m the first in my family that I know of to be diagnosed. As a result of my diagnosis, though, I’ve learned more about my maternal grandfather and how in the seventies, he received a vagotomy — a now-obsolete procedure where one or more branches of the vagus nerve are cut. This invasive and (in my mind) absolutely wild procedure did not provide him relief from his gastro symptoms; I wouldn’t be surprised if, were he still alive today, he would be diagnosed with celiac as well.
Celiac disease is hard, it is stressful, it is full of grief and fear and disappointment. But I am so lucky to live where I do, to have a partner who is supportive of my needs despite his deep and abiding love for wheat products, to have access to health care resources that have given me the power to start healing.
