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Modernizing Eosinophilic Esophagitis Care: When Evidence Meets Real-World Feasibility

Dec 13, 2025By Erik Abel, PharmD, MBA
Erik Abel, PharmD, MBA

Introduction

Eosinophilic esophagitis (EoE) is a chronic immune-mediated inflammatory disorder of the esophagus with a growing population impact. Prevalence estimates range from 13 to 49 cases per 100,000 people globally, with substantially higher rates reported in the United States at approximately 26 to 163 cases per 100,000 individuals.(1-3) This epidemiology makes clear that EoE is no longer a niche diagnosis. It is a common chronic disease with meaningful implications for patients, families, and the healthcare system.

The scientific foundation for EoE diagnosis and treatment is strong. The challenge is not evidence quality. The challenge is that the way EoE care is delivered often imposes a level of burden that many patients cannot realistically sustain.

As a clinician, a patient with EoE for more than 20 years, and a parent of a child with EoE, I see a growing divide between what guidelines recommend and what patients can realistically sustain. The issue is not the quality of the evidence. The issue is whether the current care model is operationally feasible for families navigating months of dietary restriction, serial sedated endoscopies, and constant lifestyle adjustment. Bridging that gap requires preserving rigor while rethinking how care is sequenced, monitored, and personalized.

Clinical Burden Across the Lifespan

EoE presents differently across age groups, but disease burden is substantial throughout life. Adults most commonly experience dysphagia, food impaction, and chest discomfort, while children often present with feeding difficulties, vomiting, abdominal pain, and impaired growth.(4,5) Across all ages, EoE is strongly associated with atopic comorbidities including asthma, allergic rhinitis, atopic dermatitis, and food allergy.(4,5)

Treatment typically includes dietary elimination or elemental diets, proton pump inhibitors (PPIs), swallowed topical corticosteroids (STCs), and procedural interventions such as endoscopic esophageal dilation for fibrostenotic disease.(6,7) Swallowed topical corticosteroids have demonstrated greater effectiveness at inducing clinical and histologic remission compared with PPIs and are recommended over systemic corticosteroids because of superior safety profiles.(6,7)

Despite these options, disease control frequently requires prolonged therapy, iterative adjustments, and objective monitoring over months to years.

The Cost of the Current Care Model

Real-world insurance claims data quantify what patients and clinicians experience anecdotally. In a large U.S. retrospective analysis, individuals with newly diagnosed EoE incurred significantly higher all-cause healthcare costs than matched controls both before and after diagnosis. Mean per-patient costs exceeded ten thousand dollars annually at baseline and rose to more than fifteen thousand dollars during follow-up, representing several-fold higher costs than individuals without EoE.(8)

Cost burden varies meaningfully by age. Annualized EoE-related healthcare costs during follow-up were highest among pediatric patients and adolescents, with mean expenditures exceeding five thousand dollars per year.8 In these populations, outpatient encounters, physician office visits, and pharmacy utilization were the primary cost drivers. In adults, EoE-related costs were driven predominantly by inpatient admissions and ambulatory surgical center visits, reflecting greater reliance on procedural care.(8)

These findings reflect routine clinical practice rather than controlled trial environments and reinforce that current EoE care pathways are resource-intensive across the lifespan.

The Problem Is Not Efficacy…. It Is Feasibility

Empiric elimination diets are highly effective. The six-food elimination diet achieves histologic remission in 61 to 73 percent of patients, while less restrictive two-food or four-food approaches achieve remission in 43 to 54 percent.(9,10) These outcomes justify their central role in clinical guidelines.

Yet long-term adherence remains poor. Discontinuation rates approach 40 to 50 percent in both adult and pediatric populations.(9,10)  The drivers are consistent. Broad dietary restriction, increased food costs, family burden, social disruption, nutritional complexity (food labeling), health literacy and the requirement for repeated endoscopic confirmation of response.

For many patients, particularly families managing pediatric disease, a broad empiric elimination is not simply challenging. It is not realistic.

The Monitoring Burden Drives Attrition

Because symptoms correlate poorly with histologic activity, EoE management relies on objective monitoring.(4,5) Serial endoscopy has been the standard. While scientifically justified, this approach contributes substantially to procedural fatigue, cost, and care discontinuation.

Esophageal string testing (EST) offers a validated, minimally invasive alternative for monitoring and surveillance (see Enterotrack). EST correlates strongly with histologic disease activity, with an area under the curve of 0.83 and sensitivity and specificity near 80 percent.11 Pediatric data demonstrate high completion rates and fewer required endoscopies when EST is incorporated into care.(12) Despite this, adoption remains limited, driven largely by reimbursement, payer adoption and workflow barriers rather than evidence gaps.(11,12)

Integrating EST into routine monitoring represents a clear opportunity to reduce procedural burden while maintaining objective disease assessment.

Where Sensitivity-Based Elimination Fits

Allergy and gastroenterology societies appropriately caution against using IgG or IgG4 testing as diagnostic tools for food allergy.(6,7) Aside from managing provider ordered tests, groups like EverlyWell offer food sensitivity testing as an at-home IgG/IgG4 Food Sensitivity Test, which checks your blood for IgG antibodies to potentially triggering foods. Mediator release testing such as MRT-LAA by Oxford Laboratories is not addressed in current EoE guidelines and lacks direct EoE-specific validation.(6,13) These limitations are real and should be acknowledged.

However, absence of diagnostic precision does not equate to absence of potential clinical utility in all contexts. This presents the scenario where sometimes, staunch clinicians take firm stances against such testing and reinforce the only option as empiric elimination diets.  Unfortunately, these stances lead to disengaged patients that look elsewhere for answers and a missed opportunity for listening to the patient and family to develop a pragmatic and guided plan.

Emerging evidence demonstrates that food-specific IgG4-guided elimination yields histologic remission in approximately 45 percent of adults with EoE.(14) Combined tissue IgG4 and peripheral T-cell assays show moderate accuracy, ranging from 53 to 75 percent, in identifying likely food triggers.(6) Standard allergy test-based diets continue to show modest predictive value and variable response rates.(13,15)

In patients for whom broad empiric elimination is not feasible, sensitivity-based approaches can function as hypothesis-generating tools. When framed appropriately, IgG4 or MRT-LAA patterns may help prioritize a smaller set of foods for initial elimination – as steps towards feasible change management. Results should be communicated as signals rather than proof and applied within a step-up framework that escalates only if inflammation persists.

This shifts the clinical question from “What can we definitively prove?” to “Where should we reasonably start for this patient?”

A Hybrid Model That Balances Rigor and Real-World Reality

A sustainable and patient-centered EoE care model can preserve guideline-based rigor while reducing unnecessary burden:

  1. Confirm diagnosis with endoscopy and histology(4,5)
  2. Complete a twelve-week high-dose PPI trial(6)
  3. Use empiric elimination when it is truly feasible and acceptable to the patient(9,10)
  4. When empiric elimination is not feasible, apply sensitivity-based targeted elimination using IgG4 or MRT-LAA as adjunctive tools(6,14)
  5. Incorporate EST for interim monitoring to reduce reliance on serial sedated endoscopy(11,12)
  6. Apply a step-up philosophy to dietary escalation(9,10)
  7. Reserve endoscopy for diagnosis, confirmation of remission, and discordant clinical scenarios 

This framework respects the hierarchy of evidence while acknowledging patient capacity, cost, and adherence as determinants of success.

Why This Matters

EoE is a lifelong condition. The science has matured, but delivery has not. Real-world data show that current care pathways carry substantial economic and procedural burden, particularly for children and families.(8) When patients disengage because care is unsustainable, outcomes suffer regardless of therapeutic efficacy. They disengage on treatments, the repeated endoscopies and also pursue alternatives for including food sensitivity testing all while attempting to develop a reasonable dietary plan. Why not embrace the journey and align on tests that may reasonably guide the patient, develop a monitoring that is less costly and burdensome. The elephant not yet on the table and underappreciated, is that elimination diets and their maintenance likely far exceed the medical costs that have been contemplated in the literature.

Thus, advancing EoE care will require broader adoption of noninvasive monitoring, rigorous evaluation of sensitivity-based elimination as an alternative entry point, greater investment in nutrition support, and reimbursement models that reward high-value care rather than procedural volume.

We can preserve the science while modernizing the experience and that evolution is overdue.

A Practical Call to the Field

For healthcare researchers, clinicians, professional societies, payers, and innovators working in EoE, there is significant value in observing how patients and families navigate this disease outside the clinic. Online peer-support communities provide unfiltered insight into where current care pathways break down, where guidance is insufficient, and where patients struggle to translate recommendations into daily life.

Two such communities offer a particularly clear window into the lived experience of EoE:

Reviewing these discussions offers insights into recurring gaps in patient education, diet implementation, monitoring strategies, and longitudinal support. For those committed to improving outcomes in EoE, these communities represent an important source of insight into real-world needs and opportunities to evolve how care is delivered.

Advancing EoE care will require collaboration across gastroenterology, allergy, pediatrics, nutrition, and patient advocacy. Organizations such as American College of Gastroenterology, American Gastroenterological Association, NASPGHAN, American College of Allergy, Asthma and Immunology (ACAAI), and APFED are uniquely positioned to help close the gap between guideline intent and real-world experience. As EoE therapies advance, manufacturers such as Sanofi, Regeneron, Takeda, and others have an opportunity to lead not only on efficacy, but on feasibility, adherence, and real-world care delivery.

References

  1. Hirano I, Chan ES, Rank MA, et al. AGA Institute and the Joint Task Force on Allergy-Immunology Practice Parameters Clinical Guidelines for the Management of Eosinophilic Esophagitis. Gastroenterology. 2020;158(6):1776-1786.
  2. Muir A, Falk GW. Eosinophilic esophagitis: a review. JAMA. 2021;326(13):1310-1318.
  3. Dellon ES, Muir AB, Katzka DA, et al. ACG clinical guideline: diagnosis and management of eosinophilic esophagitis. Am J Gastroenterol. 2025;120(1):31-59.
  4. Muir A, Falk GW. Eosinophilic esophagitis: a review. JAMA. 2021;326(13):1310-1318.
  5. Dellon ES, Muir AB, Katzka DA, et al. ACG clinical guideline: diagnosis and management of eosinophilic esophagitis. Am J Gastroenterol. 2025;120(1):31-59.
  6. Molina-Infante J, Lucendo AJ. Dietary therapy for eosinophilic esophagitis. J Allergy Clin Immunol. 2018;142(1):41-47.
  7. Hirano I, Chan ES, Rank MA, et al. Gastroenterology. 2020;158(6):1776-1786.
  8. Xu X, Maslova E, Kielar D, et al. Characteristics, treatment patterns, healthcare resource utilization, and costs in patients with eosinophilic esophagitis in the United States: a retrospective analysis of insurance claims data. Ther Adv Gastroenterol. 2025;18:1-20. doi:10.1177/17562848251391090.
  9. Mayerhofer C, Kavallar AM, Aldrian D, et al. Efficacy of elimination diets in eosinophilic esophagitis: a systematic review and meta-analysis. Clin Gastroenterol Hepatol. 2023;21(9):2197-2210.e3.
  10. Molina-Infante J, Lucendo AJ. J Allergy Clin Immunol. 2018;142(1):41-47.
  11. Al Abdulqader AK. Advances in diagnostic techniques for eosinophilic esophagitis: a systematic review of emerging noninvasive methods. Eur J Med Res. 2025;30(1):924.
  12. Quinn LA, Andrews R, Bauer M, Nguyen N. Utilization and impact of esophageal string testing in children with eosinophilic esophagitis: a 1-year experience. J Pediatr Gastroenterol Nutr. 2024;79(3):631-635.
  13. Pitsios C, Vassilopoulou E, Pantavou K, et al. Allergy-test-based elimination diets for the treatment of eosinophilic esophagitis: a systematic review of their efficacy. J Clin Med. 2022;11(19):5631.
  14. Lim AHW, Ngoi B, Perkins GB, et al. Outcomes of serum food-specific immunoglobulin G4 to guide elimination diet in patients with eosinophilic esophagitis. Am J Gastroenterol. 2024;119(6):1066-1073.
  15. Visaggi P, Mariani L, Pardi V, et al. Dietary management of eosinophilic esophagitis: tailoring the approach. Nutrients. 2021;13(5):1630.