Non-Celiac Gluten Sensitivity: Understanding the Experience and Perception of a New Kind of Gluten-Related Disorder

Abstract

Gluten, a structural protein found in the endosperm of wheat, barley, and rye, has been implicated in several conditions referred to as gluten-related disorders (GRDs). The most well-known GRD, celiac disease, an autoimmune disorder that results in atrophied intestinal villi, affects around 1% of the global population. Other GRDs affect an even smaller number of people. Those with a GRD must adopt a gluten free diet to avoid triggering the pathological mechanisms of their condition. Despite the relatively low prevalence of well-characterized GRDs, estimates suggest that around one-third of Americans buy into the gluten free food industry which grew roughly 120% from 2013 to 2015 and is expected to continue growing (Statista, 2017). Tremendous expansion of the number of people adopting a gluten free diet warrants an exploration of the reasons behind and impact of the growth. The factor that sparked the trendiness of the gluten free diet is a new kind of gluten-related disorder: non-celiac gluten sensitivity (NCGS). NCGS is a somewhat uncharacterized entity. Its clinical presentation (e.g. irregular bowel movements, abdominal pain, weight loss, bone or joint pain, foggy mind, headache, dermatitis, etc.) is indistinguishable from other GRDs, and symptoms can vary in time of onset, severity, and duration (Fasano, 2014). There are no known biomarkers specific to NCGS meaning that it must be diagnosed by confirming that gluten-related symptoms cease upon adopting a gluten free diet and recur when gluten is reintroduced. Every other GRD must be ruled out. Because of these uncertainties and more, many scientists and medical practitioners doubt that it is its own distinct GRD. Patients who have ruled out the possibility of known GRDs and who still insist on experiencing gluten-related symptoms, then, could develop frustrations with the medical system that harm the patient-physician relationship. Furthermore, the co- emergence of NCGS and gluten free trends in a day and age where fad diets and health practices are abundant and rapidly fluctuating could create a space for stigma or doubt in the legitimacy of NCGS. Aside from evaluating the scientific literature to determine how compelling the arguments for the distinctness of NCGS are, I set out to describe the experiences and perceptions of NCGS in clinical and social settings. The scientific literature revealed that NCGS, unlike celiac disease and other GRDs, is primarily driven by dysfunction of the innate immune system. Several double-blind, placebo-controlled trials yield significant findings that NCGS is distinct from known GRDs. Although, more studies are needed to elucidate any biomarkers specific to NCGS in order to create diagnostic tests and understand its epidemiology. An online survey of Princeton students as well as interviews with students and Princeton’s alumni physicians revealed the nuances of the experiences and perceptions of NCGS. Contrary to expectations, those of the student body without a GRD know what gluten is and do not necessarily believe that a gluten free diet has inherent health benefits. Furthermore, based on national rates, a smaller than expected percentage of students eat gluten free diets. Due to the low amount of sensationalism of gluten-related topics among Princeton students, they do not as strongly believe in the stigma associated with being gluten free. And, those with a GRD consider the trendiness of gluten free diets to have a net positive effect in that it has created a much larger supply of palatable and safe gluten free foods.