Many "stories" follow a similar arc of chronic discomfort and eventual relief:
: Patients often describe the pruritus (itching) as "way beyond having poison ivy" or "insanely itchy". It commonly affects the elbows, knees, buttocks, back, and scalp in a symmetrical pattern.
: Because the blisters are often scratched off before they are seen by a doctor, patients are frequently told they have atopic dermatitis, scabies, or even fungal infections for years before getting a correct biopsy.
: While oral medications like dapsone can stop the itch within 48–72 hours, a lifelong, strict gluten-free diet (GFD) is the only permanent solution to keep symptoms in remission.