Rates of Dermatitis Herpetiformis within the iCureCeliac Patient-Powered Research Network

Celiac.com 12/11/2020 - Researchers and clinicians have recently begun to understand dermatitis herpetiformis as an external, skin-affected form of celiac disease. Over 90% of people with DH have an associated gluten-sensitive enteropathy, but just 20% of dermatitis herpetiformis patients show classic gastrointestinal symptoms when first diagnosed.

A team of researchers recently released a survey study describing the frequency of dermatitis herpetiformis among patients included in the iCureCeliac network, along with demographics of patients with dermatitis herpetiformis and underlying celiac disease.

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The research team included Bridget E. Shields, MD; Joel M. Gelfand, MD, MSCE; Lynne Allen-Taylor, PhD; and Misha Rosenbach, MD. They are variously affiliated with the Department of Dermatology, Perelman School of Medicine, University of Pennsylvania, Philadelphia; the Department of Biostatistics, Epidemiology and Informatics, Perelman School of Medicine, University of Pennsylvania, Philadelphia; the Biostatistics Analysis Center, Center for Clinical Epidemiology and Biostatistics, Perelman School of Medicine, University of Pennsylvania, Philadelphia; the Deputy Editor, JAMA Dermatology
 
Dermatologists may be the first to diagnose patients with celiac disease via their dermatitis herpetiformis, but very little nationwide data exists on the demographic characteristics of patients with dermatitis herpetiformis and celiac disease. 

Using a patient-powered research network (PPRN), their study describes the rate of dermatitis herpetiformis, records the demographics of patients with dermatitis herpetiformis and underlying celiac disease, and  assesses the amount of gluten-free diet counseling received by patients with and without dermatitis herpetiformis.

The understanding of dermatitis herpetiformis as a definite external manifestation of celiac disease is new, and offers powerful insight into new treatment approaches for dermatitis herpetiformis. 

Read more on their study in JAMA Dermatology. Published online October 7, 2020.