A Research Guide for
Living with Eosinophilic Esophagitis

FDA-APPROVED Dupilumab is the first FDA-approved biologic for EoE (one of two FDA-approved EoE drugs, alongside budesonide oral suspension/Eohilia). It is a monoclonal antibody that blocks interleukin-4 (IL-4) and interleukin-13 (IL-13), two key drivers of type 2 inflammation. In the pivotal LIBERTY EoE TREET trials (Parts A and B), dupilumab achieved histologic remission (≤6 eosinophils per high-power field) in approximately 60% of patients at 24 weeks, compared to 5% with placebo. It also improved dysphagia symptoms and endoscopic findings. Approved for patients aged 1 year and older weighing at least 15 kg. Administered as a subcutaneous injection every week or every two weeks depending on body weight.

GUIDELINE-SUPPORTED For many years, patients who responded to PPIs were classified as having “PPI-responsive esophageal eosinophilia” and were considered not to have EoE. This distinction has been abandoned. Current guidelines (AGA/JTF 2020, AGREE 2018) recognize that PPI-responsive patients have true EoE and that PPIs are a legitimate first-line treatment. PPIs have anti-inflammatory effects beyond acid suppression that benefit EoE directly, including downregulation of eotaxin-3 (a chemokine that recruits eosinophils).

EMA-APPROVED (EU) — NOT FDA-APPROVED Jorveza (budesonide orodispersible tablet, 1 mg) is the first EoE-specific topical corticosteroid formulation. It dissolves on the tongue and coats the esophagus as it is swallowed. Approved by the EMA for adults. It demonstrated histologic remission in approximately 58% of patients at 6 weeks in pivotal trials (vs. 0% placebo). The orodispersible tablet itself is not FDA-approved, but in February 2024 the US FDA approved a different swallowed budesonide product — budesonide oral suspension (Eohilia, Takeda), 2 mg twice daily for 12 weeks, ages 11+. US patients also still have the option of off-label budesonide slurry or swallowed fluticasone.

GUIDELINE-SUPPORTED Rather than starting with a 6-food elimination diet (removing milk, wheat, egg, soy, fish/shellfish, and nuts), current guidelines support a step-up approach. Start with removing 1 or 2 foods (usually milk and wheat, which account for the majority of EoE triggers), then add more eliminations only if needed. This approach reduces the number of endoscopies required and preserves quality of life by avoiding unnecessary dietary restrictions.

Symptoms differ by age:

• Adults and adolescents: Difficulty swallowing solid foods (dysphagia), food getting stuck in the esophagus (food impaction), chest pain not related to the heart, heartburn that does not fully respond to acid medications
• Children: Feeding difficulties, food refusal, failure to thrive (poor weight gain), vomiting, abdominal pain, difficulty transitioning to solid foods
• Behavioral clues: Eating very slowly, drinking excessive water with meals, cutting food into tiny pieces, avoiding certain textures (meats, bread, rice), avoiding social eating situations

Average diagnostic delay is 4 to 7 years. Many patients adapt to their symptoms over years without realizing that their difficulty swallowing is abnormal. If you have recurrent food impaction, chronic dysphagia, or unexplained chest pain with allergic conditions, ask your doctor specifically about EoE.

An upper endoscopy (esophagogastroduodenoscopy, EGD) is required to diagnose EoE. During this procedure, a flexible scope is passed through the mouth into the esophagus while you are sedated. The gastroenterologist looks for visual signs of EoE and takes tissue samples (biopsies).

Visual findings (EREFS score):

• Rings: Circular ridges in the esophagus (sometimes called “trachealization” or “feline esophagus”)
• Exudates: White spots or plaques on the esophagus lining
• Furrows: Vertical lines running along the esophagus
• Edema: Swelling that makes the blood vessel pattern less visible
• Stricture: Narrowing of the esophagus

Biopsies are essential. At least 6 biopsies should be taken from at least 2 locations in the esophagus (proximal and distal). The diagnosis requires ≥15 eosinophils per high-power field (eos/hpf) in at least one biopsy. Biopsies from the stomach and duodenum should also be taken to rule out other causes of eosinophilia.

• Blood eosinophil count and IgE: May be elevated in EoE but are not diagnostic. Peripheral eosinophilia is present in only about 50% of patients.
• Allergy testing (skin prick, specific IgE): Can identify IgE-mediated food allergies that may co-exist with EoE but does not reliably predict which foods trigger EoE. EoE is driven by a different immune mechanism (non-IgE, type 2). Allergy testing should not be used alone to guide elimination diets for EoE.
• Barium swallow: Can show rings, strictures, and a narrow-caliber esophagus but cannot diagnose EoE. Useful for assessing the degree of structural narrowing.
• Endoscopic Functional Lumen Imaging Probe (EndoFLIP): A newer tool that measures esophageal distensibility (how well the esophagus stretches). Lower distensibility predicts food impaction risk. Increasingly used at specialized centers to guide dilation decisions.

• Were at least 6 biopsies taken from multiple levels of my esophagus?
• What was my peak eosinophil count per high-power field?
• What did the endoscopy show — rings, furrows, exudates, strictures?
• Were biopsies also taken from my stomach and duodenum to rule out other conditions?
• Could this be something other than EoE (GERD, pill esophagitis, infection, hypereosinophilic syndrome)?
• Should I see an allergist in addition to a gastroenterologist?
• Do you have experience treating EoE specifically?

EoE progresses along a spectrum:

• Inflammatory phenotype: Predominant edema, exudates, and furrows on endoscopy. Tissue shows active eosinophilic inflammation with relatively preserved esophageal architecture. More common in children and younger adults. Generally more responsive to anti-inflammatory treatment.
• Fibrostenotic phenotype: Predominant rings, strictures, and a narrow-caliber esophagus. Tissue shows fibrosis, smooth muscle hypertrophy, and subepithelial collagen deposition. More common in adults with longstanding untreated EoE. May require dilation in addition to anti-inflammatory therapy.
• Mixed phenotype: Features of both. Most adults have some degree of both inflammation and fibrosis.

Key point: The longer EoE goes untreated, the more fibrosis develops. A study found that for every decade of untreated disease, the odds of developing strictures approximately doubled. This is why early diagnosis and sustained treatment matter.

PPIs benefit EoE through at least two mechanisms:

• Acid suppression: Reducing gastric acid protects the esophageal lining and may reduce acid-driven inflammation that co-exists with EoE.
• Anti-inflammatory effects: PPIs directly inhibit eotaxin-3 expression in esophageal epithelial cells. Eotaxin-3 is the primary chemokine that recruits eosinophils to the esophagus. This effect is independent of acid suppression.

Response rate: Approximately 33–50% of EoE patients achieve histologic remission (<15 eos/hpf) with high-dose PPI therapy. Response should be assessed with repeat endoscopy and biopsies after 8 to 12 weeks of PPI therapy.

• Adults: Omeprazole 20–40 mg twice daily, or equivalent PPI dose, for 8–12 weeks
• Children: 1–2 mg/kg/day divided twice daily
• Timing: Take 30–60 minutes before meals for maximum efficacy
• Duration: If PPI achieves histologic remission, it should be continued long-term at the lowest effective dose. Stopping PPI in a PPI-responsive patient usually leads to relapse.

• Should I try a PPI first before other treatments?
• What dose should I take, and for how long before we check whether it is working?
• Will I need a repeat endoscopy to confirm response?
• Are there long-term safety concerns with PPI use I should know about?
• If the PPI does not work, what is the next step?

FDA-APPROVED (EOHILIA) + OFF-LABEL OPTIONS Budesonide is the most commonly used swallowed corticosteroid for EoE. Since February 2024 there is an FDA-approved budesonide oral suspension — Eohilia (Takeda), taken as 2 mg twice daily for 12 weeks in patients aged 11 and older (a ready-made single-dose suspension). Budesonide can also be prepared off-label as an oral viscous budesonide (OVB) slurry by mixing budesonide respules (0.5 mg/2 mL nebulizer solution) with a thickening agent such as sucralose (Splenda) or honey. Histologic remission rates are approximately 50–70%.

• Adult dosing: Typically 1 mg twice daily (total 2 mg/day) as viscous slurry
• Pediatric dosing: Typically 0.5–1 mg twice daily, adjusted by age and weight
• Instructions: Swallow the slurry without rinsing the mouth. Do not eat or drink for 30–60 minutes after. Take after meals, not before.
• Jorveza (EU only): Budesonide orodispersible tablet (1 mg) approved by the EMA for adults with EoE. Place on the tongue and let it dissolve (do not swallow whole, chew, or take with water). Not available in the US as of May 2026.

GUIDELINE-SUPPORTED (OFF-LABEL) Fluticasone propionate is used off-label for EoE by actuating a metered-dose inhaler (MDI) into the mouth and swallowing (without inhaling). Histologic remission rates are approximately 50–65%.

• Adult dosing: 880–1760 mcg/day divided into 2–4 puffs twice daily
• Pediatric dosing: 88–440 mcg per puff, 2–4 puffs twice daily depending on age
• Instructions: Actuate inhaler into the mouth without a spacer. Close lips, swallow. Do not inhale. Do not eat or drink for 30 minutes.

• Esophageal candidiasis (thrush): The most common side effect, occurring in approximately 5–20% of patients. Usually mild and treatable with oral antifungal medication (fluconazole). Does not necessarily require stopping the steroid.
• Adrenal suppression: Rare with topical esophageal steroids but possible with long-term use, especially in children or when combined with inhaled steroids for asthma. Your doctor may check cortisol levels periodically.
• Systemic steroid effects: Very uncommon because budesonide and fluticasone have high first-pass metabolism (meaning the liver breaks down most of the drug before it reaches the rest of the body). However, growth monitoring in children is recommended.

• Should I use budesonide slurry or fluticasone for my EoE?
• How do I prepare the budesonide slurry correctly?
• Is this a short-term treatment or will I need it long-term?
• How will you monitor for esophageal candidiasis?
• Should my child’s growth be monitored while on swallowed steroids?
• Is Jorveza (budesonide orodispersible tablet) available to me?

The LIBERTY EoE TREET trials (Parts A and B) studied dupilumab 300 mg weekly in adults and adolescents (aged 12+) with EoE:

• Histologic remission (≤6 eos/hpf): Approximately 60% with dupilumab vs. 5% with placebo at 24 weeks (Part A)
• Dysphagia symptom improvement: Significant reduction in Dysphagia Symptom Questionnaire (DSQ) score
• Endoscopic improvement: Significant improvement in EREFS score (rings, exudates, furrows, edema, stricture)
• Durability: Responses were maintained through 52 weeks of treatment in extension studies

• Adults and adolescents (≥40 kg): 300 mg subcutaneous injection weekly
• Children (15 to <40 kg): Weight-based dosing per prescribing information
• Administration: Self-injected at home after training. Injection sites include thigh, abdomen, or upper arm (if given by another person).
• No loading dose required for EoE indication
• Duration: EoE is chronic; treatment is expected to be long-term. Discontinuation typically leads to disease recurrence.

• Injection site reactions: The most common side effect (redness, swelling, itching at injection site). Usually mild and temporary.
• Conjunctivitis (eye inflammation): Reported in some patients, particularly those with a history of atopic dermatitis. Usually manageable.
• Upper respiratory infections, joint pain: Reported at rates similar to placebo in EoE trials
• Eosinophilia: Paradoxically, blood eosinophil counts may transiently increase during treatment. This is a pharmacodynamic effect (eosinophils leaving tissues and entering the blood) and is not a reason to stop treatment.

Dupilumab has a well-established safety profile from extensive use in atopic dermatitis and asthma (millions of patient-years of exposure). It does not cause the immunosuppression associated with systemic steroids.

Dupilumab is expensive (list price approximately $36,000–$40,000 per year in the US). However, access programs exist:

• Dupixent MyWay: Manufacturer patient support program offering copay assistance and help with insurance prior authorization
• Insurance coverage: Most commercial insurers and many Medicaid programs cover dupilumab for EoE, though prior authorization and step therapy requirements are common (may require documented failure of PPI and/or swallowed steroids first)
• If denied: Ask your gastroenterologist to submit a peer-to-peer review or appeal with clinical documentation

• Am I a candidate for dupilumab, or should I try PPIs or steroids first?
• Does my insurance require step therapy before approving dupilumab?
• How will we monitor whether dupilumab is working?
• How long will I need to be on it?
• Can I take dupilumab if I am already taking it for eczema or asthma?
• What happens if I stop dupilumab?

• Significant esophageal narrowing (stricture) causing persistent dysphagia despite anti-inflammatory treatment
• History of food impaction requiring emergency endoscopy
• Endoscopic or EndoFLIP evidence of reduced esophageal distensibility
• Dilation is always combined with medical or dietary therapy. Dilation alone, without treating the underlying inflammation, leads to recurrent stricture formation.

Dilation in EoE is safe. Earlier concerns about perforation risk were overstated. Large studies have shown that the perforation rate with EoE dilation is approximately 0.1–0.3% — similar to dilation for other esophageal conditions.

• Post-procedural chest pain is common (up to 75%) but typically resolves within 24–48 hours
• Mucosal tears are expected and part of the therapeutic effect — they are not perforations
• Gradual dilation: Many gastroenterologists use a “rule of three” (no more than 3 mm increase per session) or an incremental approach over multiple sessions
• Target diameter: The goal is typically to achieve a lumen diameter of 15–18 mm

• Do I have a stricture or narrowing that needs dilation?
• How narrow is my esophagus currently?
• Will you use a through-the-scope balloon or bougie dilators?
• How many dilation sessions will I likely need?
• What anti-inflammatory therapy will be started to prevent re-narrowing?

Current guidelines favor a step-up approach, starting with fewer eliminations and adding more only if needed:

• 1-food elimination (milk only): Milk (dairy) is the single most common EoE trigger, responsible in approximately 50–60% of cases. A milk-only elimination achieves histologic remission in about 40–50% of patients.
• 2-food elimination (milk + wheat): Adding wheat elimination increases response rates to approximately 40–60%.
• 4-food elimination (milk, wheat, egg, soy): Achieves remission in approximately 50–65%.
• 6-food elimination (milk, wheat, egg, soy, fish/shellfish, nuts/tree nuts): The most restrictive standard diet, achieving remission in approximately 70–75%.

Process: After each elimination level, a repeat endoscopy with biopsies is performed (typically after 6–8 weeks) to assess response. If remission is achieved, foods are reintroduced one at a time with endoscopic monitoring to identify the specific trigger(s).

Skin prick testing and specific IgE blood tests have poor predictive value for identifying EoE food triggers. These tests measure IgE-mediated allergic responses, while EoE is primarily driven by non-IgE mechanisms. Multiple studies have shown that allergy test-directed elimination diets are significantly less effective than empiric elimination diets. Current AGA/JTF guidelines recommend against using allergy testing alone to guide EoE elimination diets.

Exception: Allergy testing may help identify co-existing IgE-mediated food allergies (which can cause immediate allergic reactions) but should not be used as the sole basis for EoE dietary management.

An elemental diet consists entirely of amino acid-based formulas with no intact proteins. It achieves histologic remission in approximately 90–96% of patients — the highest success rate of any EoE therapy. However, it is rarely used as a first-line treatment because of:

• Poor palatability (most adults cannot tolerate the taste long-term)
• Social isolation and impact on quality of life
• Cost
• Nutritional counseling requirement

Elemental diets may be appropriate for patients who have failed multiple treatments, have severe disease, or for short-term use to achieve remission before transitioning to a more sustainable approach. Nasogastric tube delivery is sometimes necessary, particularly in young children.

• Should I try dietary therapy, medication, or both for my EoE?
• Do you recommend starting with a 1-food or 2-food elimination?
• How long should I maintain the diet before we repeat endoscopy?
• Can you refer me to a dietitian experienced with EoE elimination diets?
• How many endoscopies will the reintroduction process require?
• Are there non-invasive ways to monitor my EoE response instead of endoscopy?

• Cut food into small pieces and chew thoroughly — this is not a character flaw, it is a medical necessity
• Eat slowly and take sips of water between bites
• Avoid rushed meals and stressful eating environments
• Know which textures are hardest: Dry meats (chicken breast, steak), bread, rice, and fibrous foods are the most common causes of food impaction
• Use sauces, gravies, and moisture to help food slide down more easily
• Avoid eating immediately before bed — lying down soon after eating can worsen symptoms

EoE significantly impacts quality of life in ways that may not be obvious to people who do not have it:

• Social anxiety around eating: Many patients avoid restaurants, dinner parties, and social meals for fear of food impaction or the embarrassment of eating slowly.
• Dietary restriction fatigue: Elimination diets can feel isolating, especially for children and adolescents.
• Chronic symptom burden: Daily dysphagia, chest pain, and the constant vigilance about food texture are mentally exhausting.
• Anxiety and depression are more common in EoE patients than the general population.

If EoE is affecting your mental health, speak with your gastroenterologist about referral to a psychologist or counselor experienced with chronic GI conditions. Support organizations like APFED (American Partnership for Eosinophilic Disorders) offer peer support and resources.

• How often should I have follow-up endoscopies?
• Should I be on continuous treatment even when my symptoms improve?
• Are there any non-invasive monitoring tools available (cytosponge, transnasal endoscopy)?
• What should I do if I have a food impaction?
• Can EoE cause permanent damage to my esophagus?
• What happens if I stop treatment?

• Infants and toddlers: Feeding refusal, gagging, vomiting, poor weight gain, irritability during feeds
• School-age children: Abdominal pain, vomiting, difficulty swallowing, food avoidance (often mistaken for “picky eating”), slow eating
• Adolescents: Dysphagia, food impaction, chest pain — similar to adult presentation

The child who “just eats slowly” or “is a picky eater” may actually have EoE. Consider EoE evaluation in children with multiple food aversions, especially those with other atopic conditions (eczema, asthma, allergic rhinitis).

• Dupilumab: FDA-approved for EoE in children aged 1 year and older weighing at least 15 kg (since January 2024 expansion)
• Swallowed corticosteroids: Budesonide viscous slurry and fluticasone are commonly used off-label. Growth monitoring is important with long-term use.
• PPIs: Effective in children; dosed by weight (1–2 mg/kg/day)
• Elimination diets: Particularly well-suited for children, as they may be more willing to adapt, especially with family participation and dietitian support
• Elemental formulas: Sometimes necessary in severe pediatric EoE, particularly in infants
• Multidisciplinary approach: Pediatric EoE ideally involves a pediatric gastroenterologist, allergist, dietitian, and sometimes a feeding therapist or psychologist

Note: NCT numbers listed above are real trial registrations. Always verify current enrollment status on ClinicalTrials.gov, as trial status changes frequently.

• ClinicalTrials.gov (clinicaltrials.gov): Search for “eosinophilic esophagitis” and filter by status (recruiting), location, and age group.
• APFED (American Partnership for Eosinophilic Disorders): Maintains an updated list of EoE clinical trials at apfed.org
• CURED (Campaign Urging Research for Eosinophilic Disease): Patient advocacy organization at curedfoundation.org
• Your gastroenterologist: Academic centers with EoE programs often have open trials. Ask specifically what is available at your center.

• North America and Western Europe: Highest prevalence (50–100 per 100,000). Extensive clinical experience and guideline development.
• Australia: High prevalence, comparable to North America. Strong research community.
• Asia (Japan, China, Korea): Historically considered rare, but prevalence is rising rapidly with increasing recognition and Westernization of diets. JSGE (Japan) has published its own EoE guidelines.
• Latin America, Middle East, Africa: Limited epidemiological data; likely underdiagnosed. Case reports increasing.
• Key guideline bodies: AGA/JTF (US), ESGE/UEG (Europe), BSG (UK), AGREE Conference (international consensus), JSGE (Japan)

DE-ADOPTED Systemic (oral) corticosteroids like prednisone effectively reduce esophageal eosinophils but cause significant side effects (weight gain, mood changes, bone loss, adrenal suppression, immune suppression). They are no longer recommended for EoE because swallowed topical corticosteroids achieve comparable local efficacy with minimal systemic exposure. Systemic steroids may still be used in rare cases of severe, refractory disease as a short-term bridge.

NOT EFFECTIVE Despite early interest based on the role of leukotrienes in allergic inflammation, controlled studies have shown that montelukast does not achieve histologic remission in EoE. It may modestly reduce symptoms in some patients but does not address the underlying esophageal eosinophilia. Not recommended by current guidelines.

NOT EFFECTIVE Cromolyn sodium (a mast cell stabilizer used in allergic conditions) was studied in EoE and did not show significant benefit. Not recommended.

LESS EFFECTIVE THAN EMPIRIC Elimination diets guided solely by allergy testing (skin prick tests, specific IgE panels) have consistently underperformed compared to empiric elimination diets. Multiple studies have shown that allergy test-directed diets achieve histologic remission in only approximately 30–40%, compared to 50–75% for empiric approaches. AGA/JTF 2020 recommends against using allergy testing alone to guide EoE elimination diets.

MIXED RESULTS Anti-IL-5 antibodies (mepolizumab, reslizumab) reduce esophageal eosinophil counts but have shown inconsistent effects on symptoms and incomplete histologic responses in published trials. They are not FDA-approved for EoE. The Phase 3 MESSINA trial of benralizumab (anti-IL-5R) was terminated after it improved eosinophil counts on biopsy but did not significantly improve swallowing symptoms; a separate mepolizumab study showed the same histology-vs-symptom disconnect. As of 2026, no anti-IL-5/anti-IL-5R therapy is approved for EoE.

• Normalize the experience. Help your child understand that EoE is a medical condition, not their fault, and that managing food is part of taking care of their body.
• Work with your child’s school. A 504 plan or health management plan can accommodate dietary needs, emergency food impaction protocols, and medication administration at school.
• Involve a pediatric dietitian. A dietitian experienced with EoE elimination diets can make dietary management practical and nutritionally complete.
• Address social eating challenges. Birthday parties, school lunches, and sleepovers require planning. Providing safe alternatives that look similar to what other children are eating helps reduce stigma.
• Prepare for endoscopies. Repeated endoscopies can cause procedural anxiety. Ask your GI team about child life specialists and developmentally appropriate preparation techniques.

• APFED (American Partnership for Eosinophilic Disorders): apfed.org — Education, support, clinical trial listings, and community for patients and caregivers
• CURED (Campaign Urging Research for Eosinophilic Disease): curedfoundation.org — Research funding, patient support, community events
• EOS Network: eosnetwork.org — Online community and information
• FARE (Food Allergy Research & Education): foodallergy.org — Resources for managing food restrictions

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• “eosinophilic esophagitis budesonide orodispersible tablet Jorveza”
• “eosinophilic esophagitis proton pump inhibitor treatment”
• “eosinophilic esophagitis elimination diet step-up 2-4-6”
• “eosinophilic esophagitis dilation safety”
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• “benralizumab eosinophilic esophagitis MESSINA”
• “mepolizumab eosinophilic esophagitis”
• “budesonide oral suspension EoE FDA”
• “eosinophilic esophagitis biomarker non-invasive monitoring”