Background: Current guidelines for eosinophilic esophagitis (EoE) recommend obtaining biopsies from three different esophageal levels to maximize diagnostic yield, as well as life-long treatment to prevent complications such as dysmotility and strictures. However, most available evidence comes from randomized controlled trials, and in real-world practice—where the disease is relatively uncommon—biopsy protocols are often not strictly followed. Furthermore, the natural history of EoE and the timing of disease progression remain insufficiently characterized.

Aims: To describe diagnostic delay in a real-world setting and to evaluate rates of endoscopic progression over long-term follow-up.

We performed a retrospective review of medical records from patients diagnosed with EoE or other non-GERD esophagitis at Umeå University Hospital (Umeå, Sweden) between 2014 and 2024. Data collected included patient demographics, comorbidities, endoscopic findings at the index gastroscopy, diagnostic delay between the initial gastroscopy and definitive histological diagnosis, presenting symptoms, and treatments received.

Of the 38 patients initially screened, 22 were included in the final analysis with a confirmed diagnosis of EoE. Seventeen patients (77%) were male, with a mean age of 51 years (SD: 38–64). Overall, 15 patients (68%) presented with food bolus impaction, 19 (86%) reported dysphagia, and 14 (70%) had dysphagia lasting more than 6 months, and 2 (10%) experienced weight loss. Atopic comorbidities were present in 11 patients (52%), including asthma in 10 (45%) and atopic dermatitis in 2 (9%). The diagnosis was established at the index gastroscopy in 17 of the 22 patients (77%), despite the recommended multilevel biopsy protocol—obtaining samples from three esophageal levels—being followed in only 23 procedures (38%). The median diagnostic delay between the first gastroscopy and the definitive histological diagnosis was 4.5 weeks. At index gastroscopy, 38% of patients displayed rings, 11% had furrows, 13% had exudates, and 5% had strictures. After a mean follow-up of 39 months, 4% displayed rings, 6% furrows, 11% exudates, and 4% strictures. Overall, 21 patients (95%) received treatment: 1 patient (4%) followed an elimination diet, 3 (13%) received fluticasone, 8 (36%) budesonide, and 20 (90%) proton pump inhibitors (PPIs). Ten patients (45%) received more than one treatment modality.

In this real-world cohort, the diagnostic yield of esophageal biopsies was high, even when the guideline-recommended multilevel protocol was not strictly adhered to, enabling diagnosis in approximately three-quarters of patients. The median diagnostic delay was about one month. Nearly all patients received treatment, and after a mean follow-up of 39 months, there was no clinically relevant endoscopic progression.