Living With Eosinophilic Esophagitis

Eosinophilic esophagitis is a chronic autoimmune disease that affects the esophagus, the muscular tube that carries food from your mouth to your stomach. The symptoms of eosinophilic esophagitis can vary and include difficulty swallowing, heartburn, and food impaction. While eosinophilic esophagitis and its symptoms can be managed, there is no known cure for this condition. 

This article will discuss the challenges that come with being diagnosed with eosinophilic esophagitis, as well as strategies to help you cope. 

Emotional

Eosinophilic esophagitis is a serious condition with no known cure. While treatment options are always evolving, this disease can significantly impact your quality of life. 

A 2019 review found that both children and adults with eosinophilic esophagitis are at an increased risk of experiencing anxiety and depression. This is due to a variety of factors, including disease stigma, diet-related anxiety, and social embarrassment. 

Adults

Eosinophilic esophagitis can cause food impaction and difficulty breathing. These symptoms are medical emergencies and require immediate care. Living with the thought of not being able to swallow or breathe is very frightening. Feeling anxious is a normal response.

In addition to the symptoms, eosinophilic esophagitis requires treatments that may lead to anxiety and depression. Most people with this condition follow an elimination diet (like the six food elimination diet) to avoid any food allergens that could worsen symptoms. Though necessary, studies show that abiding by this strict diet may lower your quality of life and cause diet-related anxiety. Some people also report feeling embarrassed in social situations because they are not able to eat the same foods as others at parties or restaurants. 

Children

Children with eosinophilic esophagitis also experience increased rates of anxiety and depression. Feeling nervous about eating or handling their gastronomy tube, or G-tube (a feeding tube bringing food directly to the stomach), is normal for children with this condition. This is especially true when they are at school or otherwise away from home. These worries may lead to social anxiety and school avoidance behaviors. 

Children with eosinophilic esophagitis are more likely to demonstrate behavioral problems and adjustment issues at school as well. Research shows that children experience increased anxiety symptoms when their parents or caregivers are anxious. This is hard to prevent, as caring for a chronically ill child is naturally anxiety provoking. 

Caregivers 

When a child has a chronic health condition, the entire family is affected. A 2020 study found that family members of children with eosinophilic esophagitis reported a lower quality of life than those without an ill child. Parents experienced anxiety over the emotional stress of caregiving and the financial burden of several hospital visits. Parents also voiced frustration over never being able to take a break from worrying about their child and their health issues. 

Families with a child with eosinophilic esophagitis reported experiencing regular disruptions at mealtimes, spending extra time on food preparation, and spending more money on special food. Parents also had the added stress of having to miss work for their child’s frequent medical appointments. 

Physical

In addition to the standard medical therapy, an essential part of treatment for most people with eosinophilic esophagitis is an elimination diet. These diets aim to identify any food allergens that trigger an increased number of eosinophils in the esophagus. When these white blood cells build up in the lining of the esophagus, inflammation occurs and leads to chest pain and difficulty swallowing. 

The following elimination diets may be recommended:

• Food test-directed elimination diet: If your allergy testing reveals any food sensitivities, those foods are eliminated for a period of time. While this type of diet has not been proven effective in research studies, it may be helpful for some individuals. 
• Empiric elimination diet: An empiric elimination diet eliminates all major food allergens from the diet. These foods usually include dairy, egg, wheat, soy, peanuts, tree nuts, fish, and shellfish. These types of diets have been proven effective at treating eosinophilic esophagitis. To reintroduce the foods back into your diet, your doctor will likely recommend adding one food back at a time and then performing an endoscopy to look for any signs of eosinophilic esophagitis. This type of diet can be challenging to stick to, so meeting with a dietician for tips and meal ideas may be helpful. 
• Elemental diet: An elemental diet is the strictest type of elimination diet and involves removing all possible allergens from the diet. Individuals usually receive their nutrition from a liquid amino acid formula. Children may require a feeding tube to ensure they drink enough of the formula to get adequate nutrition. This type of diet is usually needed in children who have several food allergies and have not responded to other treatments. 

Social

Living with eosinophilic esophagitis can naturally lead to social anxiety. Social support is essential for living well with this chronic condition. Consider joining a local support group or online community. These groups will offer a chance to voice your concerns and hear from others who may understand what you are going through. 

The following organizations offer resources for finding a support group for living with eosinophilic esophagitis:

• American Partnership for Eosinophilic Disorders (APFED) 
• Campaign Urging Research for Eosinophilic Disease (CURED)

Resources for Parents

It is common for children with eosinophilic esophagitis to experience social anxiety. Helping your child stay connected to their friends and teachers is helpful but may be difficult.

Talk with personnel at your child’s school about your son or daughter's health needs and any needed accommodations. It is important to remember that your child has the legal right to an education, regardless of their disability or chronic condition. This is guaranteed by the Free and Appropriate Public Education (FAPE) regulation.

Schedule a meeting with your child’s teacher, guidance counselor, and school nurse. Be sure to keep all communication with the school in writing and ask for email summaries of any meetings. 

Practical

It may feel as though eosinophilic esophagitis affects every area of your life. The following list may help you navigate certain social and practical situations. 

Eating Out

Eating out at a restaurant or friend’s house offers special challenges for those with eosinophilic esophagitis. It may not be possible to know every ingredient used in your dish, which makes eating out anxiety provoking.

When visiting a restaurant, go in with a plan. Call the restaurant ahead of time and ask to speak with the manager or chef. Explain your situation and ask if they can accommodate you. When you arrive at the restaurant for your meal, check in with the person you spoke to. Consider visiting the restaurant during a slow time when the kitchen staff won’t be hurried or distracted. 

Parties 

Getting together with loved ones is an important part of life. It’s natural to feel nervous about eating at someone else’s home, though. It may be helpful to eat before you visit so that you do not have to guess which party foods are safe for you. If you are attending a potluck, offer to bring a dish that you know is safe.

It may be helpful to remember that not all social situations have to involve food. Ask your friends if they’d like to meet for miniature golf, bowling, or simply a long walk. If you’d like to go out for a meal, try packing a picnic and hitting the park. There are creative ways to stay social and safe. 

Travel

When traveling, it is best to pack your own food for the trip. Pack plenty of snacks for the flight or car ride. If you are staying at a hotel, call ahead to ask for a room with a kitchenette or refrigerator. This will allow you to bring safe food with you. 

If you are flying, pack all of your food and medications in your carry-on so that they will not get lost. Ask your doctor for a letter of medical necessity if you need to bring supplies such as formula or a G-tube. You may want to bring all of your medical information in a folder and wear a medical identification bracelet in case of emergency. 

Work

It can be difficult to know how to handle your illness at work. Remember that you cannot be penalized at work because of a health issue. You are protected under the Americans with Disabilities Act of 1990 (ADA), which prohibits job discrimination. 

Summary 

Eosinophilic esophagitis is a chronic disease with no known cure. It is natural to experience anxiety and depression because of your symptoms or treatments. Resources to help you cope with your chronic condition include meeting with a therapist, following an elimination diet, and staying connected to family and friends. 

A Word from Verywell

Eosinophilic esophagitis affects everyone differently, and you are not alone in how you are feeling. Whether you are experiencing the disease yourself or caring for a loved one, you have likely felt overwhelmed, worried, angry, or depressed. Remember that these reactions are normal and there is help. It's important to adhere to your medical therapy and reach out for support often. Don’t hesitate to ask for any accommodations you need.