Introduction

Eosinophilic gastroenteritis (EGE) is an inflammatory condition that affects the upper part of the digestive tract (usually the stomach and small intestine).¹ It is rare, with between 8.4 and 28 cases per 100,000 people in the United States.² Most patients are children.

The symptoms are often nonspecific and can change over time, which makes diagnosis difficult. Even when a diagnosis is made, management of the disease can still be challenging.To make a diagnosis, doctors often need to run many tests and examinations to rule out other conditions. This can disrupt daily life and routines. Combined with the natural anxiety and worry about health, this can take a toll on mental well-being.

Studies have shown that people diagnosed with EGE are also more likely to experience mental health disorders. That is why it’s important not only to treat the medical side of the condition, but to look at the emotional and social side as well.

Symptoms and daily challenges

Symptoms may differ depending on which part of the digestive tract is affected.
There are three main forms:

• Mucosal form (most common): affects the inner lining of the digestive tract, the mucous layer¹
• Muscular form: affects the muscle layer of the intestinal wall¹
• Serosal form: rare, reaches the outer covering of the intestine, the serosal covering¹

For the mucosal form, the most common symptoms (seen in almost half to most patients) are abdominal pain, diarrhoea, weight loss, and malabsorption (trouble absorbing nutrients), which may cause iron deficiency or protein loss.³ 

In case of the muscular form (12–30% of cases), the inflammation affects the muscular layers and thickens the intestinal wall, which in turn can lead to obstructions, like pyloric stenosis or bowel blockage.⁴ 

Serosal form is rare and characterised by inflammation spreading through all layers of the digestive wall to the outer layer, the serosal cover. This can lead to fluid in the abdomen (ascites), peritonitis, or even perforation in severe cases. There might be additional duodenal disease of the peripapillary duodenal region, leading to pancreatitis or bile duct blockage.¹

All of these symptoms can disrupt daily life. People may need to switch to restrictive diets, avoid restaurants, or adjust work and school schedules.

Because flares can happen unpredictably, many patients find it difficult to plan ahead for social events, travel, or even a normal workday.

Emotional and mental health effects

Studies show a clear link between EGE and mental health conditions such as anxiety and depression. In one study of 79 patients with non-esophageal Eosinophilic Gastrointestinal Disorders (EGIDs), more than half also had a psychiatric condition.⁵ The exact reason isn’t fully known, but it’s likely due to a combination of factors: physical symptoms, costs of treatment, and the stress of living with a rare disease.

Treatment

Treatments can be tiring, expensive, and frustrating.⁶ Some patients worry about side effects, which only adds to stress.⁷

Diet

Sticking to special diets can feel restrictive and time-consuming. Research shows that food-related anxiety (e.g., worrying about availability, safety of food, or meal preparation) can make it harder to follow diets.⁷

Social life

Many patients talk about embarrassment or distress in public, whether it’s eating out, going for job interviews, or worrying about choking in front of others.⁷

Stigma

Because EGEs are rare, people often feel misunderstood. They feel like family or friends don’t fully understand what they’re going through, or they will think of symptoms as “just some stomach problems”.

On top of this, the symptoms themselves, pain, fatigue, unpredictable flare-ups, create ongoing stress and uncertainty.

A large 2018 review found that people with EGE often report that their daily life is disrupted by symptoms, from difficulty eating to constant discomfort.⁸ The more severe the symptoms, the more quality of life is affected. Treatment helps, but the emotional impact remains.

If you’re a family member or friend of someone living with EGE, learning about these challenges is an important step in providing understanding and support.

Symptoms of depression and anxiety

If you or someone you care about is living with EGE, it’s important to recognise signs of mental health conditions.

Symptoms that persist for at least two weeks that may point to depression are the following:⁹ 

• Fatigue
• Trouble sleeping 
• Difficulty concentrating or making decisions
• Feelings of emptiness 
• Loss of interest in hobbies or activities
• Changes in appetite
• Unexplained aches or pains
• Thoughts of death or suicide 

Important to know: If you or someone you know needs help, you can contact the emergency call or the Suicide Prevention Lifeline in your country. 

Anxiety may look like:

• Persistent worry or nervousness
• Restlessness or irritability
• Racing heart
• Trouble sleeping
• Feeling on edge
• Unexplained aches or tension

You can also use simple screening tools, such as the Beck Depression Inventory or GAD-7 (Generalized Anxiety Disorder questionnaire), to help identify symptoms - but these should not replace professional evaluation.

Coping strategies and support

Here are some strategies that may help a person with EGE:

Self-awareness

• Keep in mind that your symptoms are real, but stress and worry can make them feel worse
• Recognising this mind-body link may help reduce fear and give you more control
• Be kind to yourself: celebrate small victories and remember you are not alone.

Communication with your doctor

• Share not only physical symptoms but also stress, mood changes, and daily struggles with your doctor
• Ask for clear explanations about procedures and treatments. Understanding helps reduce anxiety

Manage anxiety before procedures

• Feeling nervous before major procedures, like an endoscopy, is normal
• Deep breathing, guided relaxation, or bringing a trusted person can help ease the stress

Daily life coping tools

• Take your time while eating, since eating too quickly may increase swallowing difficulties
• Try mindfulness or relaxation exercises to ease the anxiety that often comes with meals

People 

• Don’t isolate yourself. Share your experience with friends and family so they can better understand and support you
• Remember: people often fear what they don’t understand, explaining can bring closeness, not distance
• Social support reduces the risk of depression in people with chronic illness
• Consider joining a support group (online or local) to share tips and experiences. Having social support has been shown to help prevent mental health problems in people with chronic conditions⁷

Here is a list of support groups:

• APFED (American Partnership for Eosinophilic Disorder) Connect Virtual Support Group https://www.inspire.com/groups/eos-connections/ 
• Eosinophilic Family Coalition – https://eoscoalition.org/ 
• EOS Network in the UK – https://www.eosnetwork.org/
• Support group in Spain – https://www.aedeseo.es/ 
• Support group in Italy – https://www.eseoitalia.it/ 
• Support group in Switzerland – https://www.e-oe.ch/ 
• Support group in Denmark – https://dsgh.dk/ 
• Australian Support Group – https://www.ausee.org/support/virtualsupportgroupform/ 
• Eosinophilic Gastritis Support Group (Facebook group) – https://www.facebook.com/groups/258285487951166/ 

Summary

Eosinophilic gastroenteritis (EGE) is more than a digestive disorder, it touches every part of life, from what a person eats to how they feel day to day. Managing it means looking after both body and mind.

By raising awareness, building empathy, and strengthening support systems, we can make life with EGE less isolating and more manageable. A person with EGE shouldn’t deal with this condition alone.