Delayed diagnoses in the spectrum of gluten-averse conditions

Abstract

Celiac Disease (CD), gluten allergy (GA), and non-celiac gluten sensitivity (NCGS) represent a highly varied disease grouping that affects individuals to varying degrees in response to the ingestion of certain cereal proteins (wheat, barley, rye, and sometimes oats). Generally, epidemiologic data on food allergy and intolerance is severely lacking; given current trends of under-diagnosis, prevalence of overt CD alone is estimated at 1-2% of European populations. There is a large and growing body of scientific literature that ascribes the complexity of various gluten-sensitive symptomology to multiple developmental pathways. This complexity translates largely in to delayed clinical diagnosis by medical professionals. Furthermore, public awareness of glutenaverse reactions as a serious medical condition remains low; there likely exists a sizable amount of the population that displays symptoms but does not pursue a gluten free diet due to a lack of knowledge. These delayed diagnoses result in an extremely decreased quality of life for those affected and for those with undiagnosed CD, there exists an increased risk for the development of refractory celiac with fatal Tcell lymphoma. The goal here is two-fold: (1) to conduct an epidemiologic pilot survey geared toward the characterization of contemporary paths to diagnosis of a small sample of individuals with CD, NCGS and GA and (2) to use the results of this survey to make suggestions for decreasing time to diagnosis for this widespread contemporary health issue

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