You did nothing to cause EoE. While we are still learning about EoE and the factors that contribute to it, it is generally believed to be caused by an allergy to food or something else in the environment. Some people may have an increased risk of developing it because it runs in their family. While you did not cause it, there are steps you can take to control it.

Yes — EoE is a lifelong condition. People do not grow out of EoE. That’s why it is so important to follow your doctor’s guidance to treat it, taking any medications that are prescribed or avoiding foods that may trigger EoE. The more you follow your treatment plan, the better you will feel and the healthier you will be.

Your health care team will likely include a gastroenterologist. Your team may also work with an allergist or immunologist and/or a dietitian who is experienced caring for people with EoE. A counselor or psychologist may also be valuable for helping you manage any feelings and challenges you may be experiencing.

Your primary care physician or pediatrician can make a referral to a gastroenterologist or an EoE specialist, or you can consult web resources such as APFED’s “specialist finder” and ​the CURED Medical Professional’s page. You can also ask other people with EoE for recommendations.

This is not uncommon and there are several reasons why it may happen:

• EoE is considered a “patchy” disease. This means not all tissue samples that the doctor took during a biopsy will have eosinophils in them. The tissue that your doctor removed may not have been from an area of the esophagus where eosinophils were present. If your doctor thinks this might have happened, then you may be asked to have another endoscopy with more biopsies taken.
• You may have scarring or constriction of the esophagus (stricturing) that needs a dilation (stretch), since the scar tissue may not completely get better with other treatments.
• Your esophagus may be more sensitive than normal due to the inflammation that was there, and this may require some different treatments to help decrease that sensitivity.
• More time on treatment may be needed to reduce the number of eosinophils and relieve inflammation.
• Your symptoms may be caused by another condition, such as acid reflux (bubbling of stomach acids from your stomach up into your esophagus), which is common in people with EoE (as well as many other people).

Follow the advice of your doctor and continue your treatment plan they have outlined for you. If you have any questions or concerns about your plan or are having trouble following it, don’t feel embarrassed or hesitant to speak up.

When you have EoE, it may feel challenging to have a “normal” social life while making sure you are doing all you can to take care of your health. Here are some tips:

• Learn which foods are “safe” or unsafe. For example, if dairy and wheat trigger your symptoms and your friends or family are ordering pizza, get a salad or other menu item that does not contain unsafe foods.
• Consider taking safe foods with you when you leave home — foods that don’t aggravate your symptoms.
• Organize and participate in social activities that don’t involve eating or where participants bring their own food or snacks.
• Prepare portions of safe foods in advance so you can grab them quickly.
• Arrive at social events with a full stomach to avoid the temptation to eat unsafe foods.
• Practice communicating your dietary needs to restaurant staff or others who prepare your food so they can help you find something suitable to order.

Consider medical benefits your employer may offer. For example, if you use special formula for full or partial nutrition because of your EoE, is it covered under the policy? Does the employer provide health insurance and short-term and long-term disability? These coverages will be easier to obtain from a full-time employer than on your own. Learn more about EoE in the workplace.

Check your organization’s human resources policies for special accommodations should you need to ask for them. Accommodations can include any special requirements you may have during work hours, such as arranging work parties, outings and other social activities in a way that allows you to bring your own food.

Be sure that you have:

• A full set of your current medications, including their doses.
• Copies of your health insurance card, medical records and care plan.
• Referral to a doctor in your new area. Get one from your current doctors or consult web resources (such as APFED’s “specialist finder” and ​the CURED Medical Professional’s page), and support groups for specialist recommendations.
• An emergency plan should you need urgent care. Your plan should also indicate whether or not your medical information can be shared with certain family members or close friends. Put together a comprehensive medical history that includes your diagnosis, names and doses of medications, food and other allergies, prior surgeries, and names and contact information of your doctors.

• Learn as much as you can about EoE using reliable sources of information like this website, APFED, CURED, and your health care providers. The more you understand about EoE, the better you can keep track of your symptoms, stick to your treatment plan, and take care of yourself when symptoms do happen.
• Wear a medical identification bracelet to alert emergency responders to your medical situation, medications and food restrictions.
• Reach out for help, including mental health support, if you think you are experiencing depression, anxiety or other mental health challenges.
• If you are a caregiver of others, make sure you arrange for people to help YOU when you are not feeling well.
• Connect with and learn from other people who are living with EoE.