What Is Eosinophilic Gastritis and/or Eosinophilic Duodenitis?

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Eosinophilic gastritis and/or eosinophilic duodenitis (EG/EoD), previously often called eosinophilic gastroenteritis, is a form of gastrointestinal disease that causes a variety of GI symptoms.

In people with this disease, there is an overabundance of two types of white blood cells — eosinophils and mast cells — in the lining of the digestive tract. This overactivity of cells leads to chronic symptoms, meaning that they persist long-term, but may come and go through periods of active disease and remission.

Eosinophilic Gastritis and/or Eosinophilic Duodenitis Symptoms

Julie Bang / Verywell

Types of Eg/EoD

Eg/EoD is one of several different conditions that are called eosinophilic gastrointestinal disorders. This also includes eosinophilic esophagitis and eosinophilic colitis. Because the conditions may have some aspects in common, some of the research done for one of the conditions may give clues to the diagnosis and treatment of the others.

It was estimated that Eg/EoD affects about 50,000 people in the United States, but newer research and more advanced diagnostic protocols provide growing evidence that this may be a vast underestimate and EG/EoD goes largely under and misdiagnosed.

Historically, there have been no large-scale studies that address how to diagnose and treat the disease. For that reason, most of what is understood is from the case reports published since the disease was first described in 1937.

In 1970, three different types of disease were defined.

Predominantly Mucosal Disease

This type of disease involves the innermost layers of the digestive tract—the mucosal and submucosal layers. It might affect the entire digestive tract.

The signs and symptoms that are more common with this type of disease are abdominal pain, nausea, vomiting, and diarrhea. In some cases, there might also be bleeding, anemia, protein loss (protein-losing enteropathy), malabsorption, and weight loss. It is thought to be the most common form of the disorder and tends to be chronic in nature.

Predominantly Muscular Disease

In this form, the stomach and the duodenum (the first part of the small intestine) are often involved. The deeper layer of muscle that is beyond the mucosal layers in the digestive tract is affected.

Because the muscle is involved, the bowel wall may become thickened, and patients might have other signs such as a bowel obstruction or a narrowing of the opening between the stomach and the small intestine. This type tends to go through periods of active disease and remission.

Predominantly Serosal Disease

The serosa is the outer layer of the digestive tract. With this form, the full thickness of the wall of the digestive tract is involved. It is the most uncommon type and tends to cause fluid buildup in the abdomen (ascites). However, steroids are often an effective treatment.

There might also be more complications with this form of the disease, including affecting the perianal area, causing neuropathy, or even chronic pseudo-obstruction. However, this form tends toward being self-limiting, with some patients experiencing one flare-up that improves with treatment and then doesn’t occur again.

EG/EoD Symptoms

EG/EoD symptoms may be different for each patient. People who have more advanced disease may have more severe symptoms. Where the disease is located, such as the stomach and/or the small intestine, will also play a role in which symptoms show up.

These signs and symptoms are often nonspecific and overlap with symptoms of conditions such as irritable bowel syndrome (IBS), acid reflux, and other GI diseases, which can contribute to the length of time it takes to get a proper EG/EoD diagnosis and treatment.

Some of the signs and symptoms of EG/EoD can include:

  • Abdominal pain
  • Anemia
  • Ascites (fluid buildup in the abdomen)
  • Bloating
  • Constipation
  • Diarrhea
  • Dysphagia (difficulty eating)
  • Fatigue
  • Heartburn
  • Loss of appetite
  • Nausea
  • Poor growth (in children)
  • Vomiting
  • Weight loss

Causes

The causes of EG/EoD are not well understood. There may be a connection to having environmental allergies or having an allergy or intolerance to some foods.

People who have a personal history of allergies or who have a family history of allergies may be at a higher risk of developing the disease. Food allergies are common in those who are diagnosed with EG/EoD.

Historically, the disease is thought to be related to having too many eosinophils and mast cells in the digestive tract. Both are white blood cells that normally fight bacteria and parasites, and are also involved in allergic reactions.

The theory is that the presence of these white blood cells causes irritation in the lining of the intestine and leads to injury and the symptoms of the disease.

Other studies are focusing on the role that Th-2 cytokines (proteins that carry messages between cells) and eotaxins (a type of cytokine that activates white blood cells) play.

Diagnosis

In most cases, it is the signs and symptoms along with a history of allergies that may lead to suspecting EG/EoD.

Because the symptoms are so nonspecific and can be caused by many other disorders, prompt testing to either confirm or rule out other disorders may be needed. Stool, blood, and breath tests may be ordered to rule out these conditions:

Imaging and Radiology

Some imaging tests are helpful in the diagnosis of EG/EoD. They help medical professionals understand more about what's happening in the wall of the digestive tract.

Abdomen sonography, barium studies, and abdominal computed tomography (CT) might be used. These radiology tests might show that the walls of the digestive tract are thickened due to inflammation.

However, inflammation can occur with a variety of digestive conditions, so while these results may support a diagnosis of EG/EoD, they're not the only tests used.

Biopsy

A biopsy (a piece of tissue) taken from the stomach and/or other parts of the digestive tract may be done. If the biopsy shows an increased amount of eosinophils, that may help in making the diagnosis.

There is no one level of eosinophils that is used to make the diagnosis. Rather, it is a higher than typical number of eosinophils along with the signs and symptoms of the disease and other changes to the cells lining the digestive tract that might lead to the diagnosis.

Endoscopy

The digestive tract may or may not appear normal during an endoscopy. In an endoscopic procedure, a flexible tube with a light on the end is inserted through the mouth and down through the esophagus into the stomach. This gives a physician a look at the inside of the digestive system.

In some cases, there could be ulcers, redness, nodules, thickening of the mucosal layer, or tissue that appears granular (granularity) or tears or bleeds easily (friable).

Upper Endoscopy With Biopsy (EGD)

An updated testing method known as an upper endoscopy with biopsy (EGD) can provide medical professionals a clearer picture of EG/EoD as a cause of GI symptoms. During the procedure, you will be sedated and tissue samples from your stomach and upper small intestine will be collected — ideally, 12 samples are needed for a comprehensive test, and they are sent to a lab for an eosinophil count. Higher levels may suggest the presence of EG/EoD.

Given that this updated testing method is fairly recent, it is important to bring it up and discuss it with your healthcare professional, especially if you have been tested or diagnosed with a different GI condition but are still experiencing symptoms.

Treatment

The lack of major trials on EG/EoD means there isn’t one treatment that has been approved or proven effective through trials and expert consensus. The treatment goals include reducing inflammation, controlling symptoms, and preventing the development of complications.

Even though there is no consensus on treatment, there is a menu of medical options that have been used to manage the condition, and additional research is being conducted on novel therapies.

Diet

There is a focus on diet and identifying any potential allergies that a patient may have. Several different types of diets have been tried to treat the condition, with varying forms of success.

Unfortunately, it can be difficult for patients to follow restrictive diets, and sometimes symptoms will return when food is reintroduced.

Some of the diets that have been studied include the two-, four-, and six-food elimination diets. At the core of these diet plans is eliminating a certain number of the top eight allergens (milk, wheat, soy, egg, peanut, tree nuts, fish, and shellfish) from the diet.

Guidelines show that the four- and six-food elimination diets might be more effective in eosinophilic disease, but they can also be challenging for adults and children to follow. These diets are usually used only for a short period of time, and then foods are slowly reintroduced.

In some cases, following an elemental diet may be recommended. An elemental diet is when all food is replaced by a nutritional formula. This is quite restrictive and can be expensive to follow when not covered by insurance.

However, an elemental diet may have a higher rate of success than the two-, four-, or six-food elimination diets in some cases. An elemental diet is followed only for a certain amount of time, and then food is slowly reintroduced.

Steroids

Steroids are also commonly given to manage the disease, sometimes after dietary changes aren’t effective. However, steroids can have a poor side-effect profile and aren’t an option for some people. For children, in particular, they can have a negative effect on growth and should be used for the shortest time possible.

Mast Cell Stabilizers

Various types of mast cell stabilizers have also been used, either alone or along with steroids. These drugs may work by stopping the production of histamine and other chemicals in the body associated with an allergic response. Histamine is released by the immune system in response to an allergy.

Leukotriene Receptor Antagonists

Drugs called leukotriene receptor antagonists might also be tried. These are medications that stop the formation of leukotrienes, which are chemicals that the body releases in response to an allergen. They are also given to treat asthma.

Biologics

Biologics might also be used to treat EG/EoD. Biologic medications work by blocking certain inflammatory pathways. They have been shown to be effective in some patients, but these drugs can be expensive and often require delivery by injection or infusion. There are more medications in this class being studied to treat the condition.

Prognosis

The diagnosis and treatment of EG/EoD have improved in recent years. There is still a need for more study to understand the causes and to find new therapies. How the disease will progress varies greatly from patient to patient. 

In most cases, the long-term treatment will revolve around finding therapies that will help avoid the use of steroids. This is especially true for children because steroids can affect growth and are associated with other adverse effects.

In some cases, there might be a need to repeat diagnostic procedures in order to keep tabs on how the disease is affecting the digestive tract.

Coping

Living with EG/EoD symptoms comes with many challenges, especially for children. The disease may come and go, and living with the unpredictability can be difficult. 

Children and young adults who are in school may want to seek accommodations. This could include being given more time for breaks, altering or removing certain physical education requirements (especially when on an elemental diet), or accessing classes remotely.

Speaking to the school nurse, social worker, and/or accommodations department will be helpful in deciding what is needed and how to implement the changes.

Treatment also usually includes dietary changes. Getting a referral to a registered dietitian and learning how to manage diet will take some of the difficulty out of meal planning. This also helps ensure that children who live with the disease are receiving all the nutrients they need for growth.

Others who live with the condition can also be sources of information, recipes, and support when starting or maintaining one of the elemental diets.

It may be helpful to seek out support groups for both patients and caregivers. In some cases, doctors or hospital systems can help in connecting families who are affected by the same condition.

As the disease has historically been considered rare, and it is vastly underdiagnosed, rare disease patient groups can also be helpful in meeting others who are living with the same condition. Looking on social media for patient leaders or discussion groups is another way of finding community members.

Patients and their families may also find it helpful to seek out a therapist experienced in rare diseases or chronic illnesses. There will be a variety of emotions that come along with living with a rare disease.

Parents and children will have specific needs in learning to cope with all the experiences that living with a chronic illness brings. Having help in processing will be an important part of taking care of one’s overall health.

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Article Sources
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Additional Reading
  • American Partnership for Eosinophilic Disorders. 2021. https://apfed.org/

  • Kaijser R, Kenntnis, Affektionen, et al. Allergic diseases of the gut from the point of view of the surgeon. Arch Klin Chir. 1937;188:36–64. 

  • Klein NC, Hargrove RL, Sleisenger MH, et al. Eosinophilic gastroenteritis. Medicine (Baltimore). 1970;49:299–319.