Eosinophilic gastrointestinal disorders (EGIDs) are a group of rare conditions that affect the digestive system. They are caused by high levels of eosinophils, a type of white blood cell that is involved in allergic reactions.

EGIDs are currently separated into four main diseases: EoE, EG, EGE, and EC.

Eosinophilic Esophagitis (EoE)

The esophagus is the tube that connects your mouth to your stomach. In eosinophilic esophagitis (EoE), eosinophils build up in the esophagus and can lead to inflammation and injury.

Signs and Symptoms of EoE

Infants and young children with EoE may refuse to eat or have a low appetite. This can lead to poor growth or even weight loss.

Older children may have frequent vomiting and abdominal pain. Adults and children will typically have difficulty swallowing (dysphagia) and/or painful swallowing.

Who gets EoE?

The estimated rate of EoE is 1 out of 2,000 people. Both males and females can get EoE, but males are affected at a higher rate. Many people with EoE and EGIDs have allergic conditions such as asthma and eczema.

What is the cause of EoE?

The cause of EoE is currently unknown. At this time, the general consensus is that an immune response to certain foods plays a role in EoE. Researchers are looking into specific EoE genes that can hopefully drive new ways to approach this rare condition.

How is EoE diagnosed?

As with any EGID, it is essential to work with your doctor to first rule out more common causes of symptoms. 

A gastroenterologist will use a flexible tube with a camera on the end called an endoscope to see into the esophagus, stomach, and upper intestine. This is called an upper endoscopy. Biopsies (tissue samples) will also be taken during the procedure and used to make an EoE diagnosis.

How is EoE treated?

EoE is often treated with a combination of dietary changes and medications.

The most common diet trial for EoE is the six-food elimination diet (SFED) where wheat, milk, egg, nuts, soy, fish, and shellfish are avoided and then reintroduced if possible. The use of hypoallergenic elemental nutrition drinks may also be necessary. Working with a registered dietitian who specializes in EoE is highly recommended.

Medications for EoE include topical steroids and acid suppressing medications. A medical procedure called dilation may be needed if the esophagus has become too narrow from EoE.

Eosinophilic Gastritis (EG) & Eosinophilic Gastroenteritis (EGE)

In eosinophilic gastritis (EG), eosinophils cause injury and irritation to the stomach. In eosinophilic gastroenteritis (EGE), both the stomach AND the small intestine are affected.

Although EG and EGE are different diseases, they have many similarities.

Signs and Symptoms of EG & EGE

• Nausea
• Vomiting
• Trouble eating (loss of appetite, swallowing difficulty, food refusal)
• Abdominal pain
• Poor growth and/or weight loss
• Anemia (low red blood cell counts)
• Fatigue

Who gets EG & EGE?

The estimated rate of EGE in the United States is 5.1 to 8.4 out of 100,000 people. EG and EGE can affect both males and females and both adults and children.

What are the causes of EG & EGE?

The causes of EG and EGE are unknown at this time.

How are EG & EGE diagnosed?

An upper endoscopy is performed and biopsies are taken. If the biopsies show a high level of eosinophils, then this will be used along with clinical symptoms and other factors to help make a diagnosis.

How are EG & EGE treated?

While there are currently no consensus guidelines for the treatment of EG and EGE, the goal of treatment is to reduce inflammation and damage caused by eosinophils.

Currently, dietary changes to remove common allergens is a typical part of treatment. Medications to lower inflammation may also be used.

Eosinophilic Colitis (EC)

In eosinophilic colitis (EC), a large number of eosinophils are present in the colon (large intestine) and can cause injury and irritation.

Infants with EC often grow out of it, but it can often be chronic for older children and adults.

Signs and Symptoms of EC

• Diarrhea (infants will often have bloody diarrhea)
• Nausea
• Vomiting
• Trouble eating (loss of appetite, swallowing difficulty, food refusal)
• Abdominal pain
• Poor growth and/or weight loss
• Anemia (low red blood cell counts)
• Fatigue

Who gets EC?

EC can affect both males and females and both adults and children. Symptoms usually present before the age of 6 months.

What is the cause of EC?

The cause of EC is currently unknown. However, it has been found that cow’s milk protein may make symptoms worse.

How is EC diagnosed?

A colonoscopy is used to diagnose EC. A tube with a camera on the end is inserted into the rectum in order to see the large intestine. Biopsies are taken and used along with clinical symptoms and other factors to help diagnose EC.

How is EC treated?

While there are currently no consensus guidelines for the treatment of EC, the goal of treatment is to reduce inflammation and damage caused by eosinophils.

Common allergens may be excluded from the diet to help control symptoms. In infants, removing milk and/or soy can often resolve EC.

Steroids and other anti-inflammatory medications may be used to help lower inflammation in the large intestine.

Although EGIDs are rare, the community of those who have been touched by these diseases is strong. We recently interviewed Kathleen Sable and her son who has EoE and learned about caregiving and advocacy for EGIDs. Click here to listen to the Gastro Girl Podcast Episode!

EGID Resources:

National Eosinophil Awareness Week is May 16-22

Click here to learn more about EGIDs and get involved!

American Partnership for Eosinophilic Disorders (APFED)

Mission Statement: “To passionately embrace, support, and improve the lives of patients and families affected by eosinophil-associated diseases through education and awareness, research, support, and advocacy.”

Campaign Urging Research for Eosinophilic Disease (CURED)

The CURED Mission: “CURED is committed to raising substantial funding to aid in research, advocating on behalf of EGID patients and their families, and working to educate and increase awareness about this complex group of diseases.”

EGID Partners

“EGID Partners is an online cohort of patients with eosinophilic gastrointestinal diseases (EGIDs) brought to you in a collaboration between Patient Advocacy Groups and Researchers.”

Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGiR)

Mission: “To improve the lives of individuals with eosinophilic gastrointestinal disorders through innovative research, clinical expertise and education via collaborations between scientists, health care provides, patients and professional organizations.”