The subjective experience of subjects diagnosed with celiac disease in adulthood

Introduction

Celiac disease is estimated to affect between 1 in 100 and 1 in 300 Caucasian subjects. Many quantitative studies have explored the issues encountered by these subjects; however, few studies have addressed the subjective and experiential dimensions of celiac disease.

Objective

The objective of this qualitative exploratory study is to expand current knowledge concerning the subjective experience of celiac disease and of a gluten-free diet in subjects diagnosed with celiac disease in adulthood.

Method

Data was collected through non-directive interviews with 14 subjects aged between 28 and 53 (M = 41.7, SD = 7.48).

Results

An interpretive phenomenological analysis identified various themes related to the experience of illness: (1) history of the disease, (2) symptoms, (3) nutrition, (4) perception of medical experiences, (5) relationships with family and friends, (6) psychological implications, and (7) consequences for daily living.

Conclusion

The results show the importance of developing a “mythology” (concerning the disease's origin) to enable the inclusion of the condition in the individual's on-going personal story.