Celiac Disease Awareness Among Health Care Providers: Recognizing the Clinical Presentations of the Disease: Results of an Anonymous Online Survey

Abstract

Introduction: Celiac disease (CD) affects an estimated 1/150-1/200. Despite this high prevalence, previous reports revealed a limited awareness of the disease among healthcare providers, leading to a delay in diagnosis of up to 10 years after onset of symptoms. Atypical presentation is common with CD; this may account in part for the delay in diagnosis. Objective: To assess the current state of awareness of CD manifestations among healthcare providers. Methods: An anonymous online survey was sent to 450 healthcare providers in the USA. Eighty responses were obtained. Participants were asked whether they would consider CD in clinical case scenarios presented as vignettes. Results: Out of 80 responders, 26 (37%) were private practice physicians (PCP), 16 (23%) were GI physicians, 29 (36%) had other subspecialties (DO, NP, OB), and 49% had practiced medicine for more than 5 years. Most responders learned about CD in medical school (65%), residency or other postgraduate training (72%), and continuing medical education (29%). Fifty-three percent of responders estimated they treated 10 or fewer patients with CD, and 48% treated more than 10. Eleven percent of the time, the CD diagnosis was made by another physician. Since starting their professional career, 70% of the responders feel that their awareness of CD has increased, and 78% are now more likely to consider CD when evaluating patients’ symptoms. Up to 77% of responders suspect CD in patients with GI symptoms (suspicion is higher with abdominal pain, diarrhea, and weight loss, and lower for bloating or constipation). Fifty percent suspect CD in patients with Down syndrome and GI symptoms. Less than 45% of responders decided to evaluate for CD in patients with osteoporosis or fractures at a young age. A presentation of dermatitis herpetiformis prompts work-up for CD in 21%-49% of responders, depending on the age/ethnicity of the patient. Between 14-35% of responders opted to evaluate for CD in women with reproductive health issues (early menopause, delayed menarche, infertility, recurrent miscarriage). As for neurological symptoms, 11%, 28%, and 30% of responders desired to look for CD in the work-up of migraine, ataxia, and fatigue, respectively. Finally, up to 48% of responders test for CD in the work-up of iron deficiency, and up to 69% in the work-up of vitamin D or B12 deficiency. Conclusion: While most healthcare providers surveyed feel their awareness of CD has increased in recent years, they continue to suspect CD in patients presenting with GI symptoms or iron and vitamin deficiencies. The atypical manifestations of the disease are not well recognized, potentially delaying the diagnosis and treatment of CD.