EoE Community
Supporting your EoE journey
If you or your loved one has EoE, it's important to know that you're not alone. This section is dedicated to voices of EoE, offering shared experiences, and insights to living with the condition. You’ll also find useful information on patient associations and community events.
Voices of EoE
Voices of EoE brings together a diverse range of voices – from people living with EoE to healthcare professionals and nutrition experts. Through personal stories, expert advice, and practical tips, you'll gain a deeper understanding of the challenges and triumphs that come with managing EoE. Whether you're newly diagnosed, supporting a loved one, or looking for expert guidance, these insights offer encouragement, clarity, and actionable support to help you on your journey to improved health and well-being.
EoE Position Paper
If you are looking for information about how advocates are thinking about the management of EOE and recommendations for policy, look no further than the EoE position paper. This was developed with collaboration from the EOS Network, American Partnership for Eosinophilic Disorders (APFED), and Global Allergy & Airways Patient Platform (GAAPP).
Head over to the "You are not alone" page to hear stories from people living with EoE, and find support with patient groups and community events.
Patient associations and communities
Explore the following patient associations dedicated to providing support, resources, and advocacy for people living with EoE or those who are caring for a loved one with the condition.
Global Allergy & Airways Patient Platform
The World Eosinophilic Esophagitis Day Alliance
Frequently Asked Questions
If I am not experiencing symptoms, will avoiding certain food triggers help me control my EoE?
Yes, avoiding certain trigger foods addresses the underlying Type 2 inflammation and can help manage your EoE.
However, EoE can be complex. Even if you're not experiencing symptoms, inflammation may still be present. Your doctor can work with you to make sure your EoE is controlled and assess any diet modifications you may need.1,2,3
Is there a possibility of reintroducing certain foods if I get my EoE under control?
Please discuss any decisions around food and diet with your doctor first.
Why is it important to track symptoms and behaviors?
When you are in a doctor’s consultation, it can be difficult to remember how often you have EoE symptoms, how severe they are and which behavior workarounds you use to avoid them. Tracking your symptoms and behavior can help you better equip yourself when seeking support.
Do I need to have an endoscopy?
Your doctor will advise you whether an endoscopy would be useful. Endoscopies examine the inside of your esophagus and can help determine whether there have been any changes following an intervention.4
Some of the eating habits people with EoE adopt to make mealtimes easier – such as chopping food into tiny pieces – can prevent you from noticing if your symptoms have got gradually worse. An endoscopy may be recommended to help your specialist assess whether your EoE is progressing and requires more intensive treatment.
Why is it important to keep to my doctor’s appointments?
EoE is a chronic, progressive condition that can have ongoing effects on your life.5 It is therefore important to keep up with doctor’s appointments to assess the status of your esophagus, and discuss with the doctor how and when an endoscopy should be performed.4
Are symptoms different depending on age?
Yes, EoE symptoms tend to vary according to age.1 Adults typically have more difficulty swallowing as the esophagus narrows, causing food to feel stuck. Whereas, children and teenagers are more likely to experience stomach pain and vomiting.6,7
Is EoE an inherited condition?
It's not inherited by a single gene, but genetics play a meaningful role. It’s likely to involve a combination of the immune system, genetics, food and the environment.8,9,10,11 Although EoE may involve genetics, this only makes you 15% more likely to get EoE, and having a gene doesn’t confirm that you will develop the condition.3,9,12
Does EoE go away on its own?
No, it is unlikely to self-resolve. EoE is a progressive condition. This means that without treatment, the symptoms and inflammation can worsen over time.1,3,10,12 You may have changed your eating habits or modified your diet to make swallowing a little easier, but this doesn’t treat the underlying Type 2 inflammation.2,3,13 If left untreated, your EoE will progress.3,12 Learn more about the available treatment options here.
What will the future look like for me or my child because of EoE?
The future can look bright if you take back control and get the support you need for you or your loved one living with EoE. Discover more about EoE, start tracking symptoms, learn how to make the most of your doctor’s appointments, including discussing available treatment options, by visiting our useful tools page today.
References
- Cianferoni A et al. Clin Exp Allergy 2019; 49(3): 269–284.
- Gonsalves NP. Dig Dis 2014; 32(1–2): 89–92.
- Dellon ES and Hirano I. J Gastroenterol 2018; 154(2): 319–332.e2.
- Dellon ES, et al. Am J Gastroenterol 2025; 120: 31–59.
- Dellon ES. Gastroenterol Clin North Am 2014; 43(2): 201–218.
- Gonsalves NP and Aceves SS 2020; 145(1): 1–7.
- Pokrzynwinski R et al. Adv Ther 2020; 37:4458–4478.
- Muir AB, Wang JX, and Nakagawa H. J Gastroenterol 2019; 54(1): 10–18.
- Kottyan LC and Rothenberg ME. Mucosal Immunol 2017; 10(3): 580–588.
- Lucendo AJ et al. United Eur Gastroenterol J 2017; 5(3): 335–358.
- Underwood B et al. Ann Allergy Asthma Immunol 2023; 130: 28–39.
- Alexander ES et al. J Allergy Clin Immunol 2014; 134(5): 1084–1092.e1.
- Muir AB et al. Clin Exp Gastroenterol 2019; 12: 391–399.
- Bredenoord AJ et al. Am J Gastroenterol 2022; 117(8): 1231–1241.