What Is Eosinophilic Enteropathy?

Could this rare condition be causing your digestive symptoms?

eosinophil white blood cell
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Eosinophilic enteropathy (EE for short) is a condition where a particular type of white blood cell—the eosinophil—builds up in your digestive tract. This can cause numerous symptoms, including heartburn, stomach pain, vomiting, diarrhea and bloating.

Researchers aren't sure why these white blood cells, which seem to be associated with allergic reactions, accumulate in your digestive tract, but the result is inflammation, polyps, ulcers and a ​breakdown of the tissues lining your digestive organs.

Eosinophils can build up anywhere from your esophagus to your rectum and cause these problems, but it's most common for eosinophilic enteropathy to affect the large intestine, the stomach, the esophagus, or the stomach and the small intestine simultaneously. When you have the condition, eosinophils also appear in your bloodstream at higher-than-normal levels.

Eosinophilic enteropathy can be called by different terms, depending on which part of your digestive system is involved. These terms include eosinophilic esophagitis (where your esophagus is affected), eosinophilic colitis (colon), eosinophilic gastritis (stomach) and eosinophilic gastroenteritis (stomach and small intestine).

Who Gets Eosinophilic Enteropathy?

Eosinophilic enteropathy is thought to be rare, although more cases are being diagnosed as awareness of the condition grows. It's more common in people with food allergies, asthma and eczema, or in people who have a family history of these conditions. There's also a possible association between eosinophilic enteropathy and celiac disease. Men may be slightly more likely to get eosinophilic enteropathy than women.

It's not clear what causes eosinophilic enteropathy, although some researchers believe a hypersensitivity to certain foods or to other allergens may be to blame.

Diagnosing Eosinophilic Enteropathy

If your doctor suspects you may have the condition, she will recommend a procedure called an endoscopy, in which an instrument is inserted through your mouth and into your digestive tract to observe what's going on and to take small samples of the tissue there. It's also possible to obtain tissue samples via a colonoscopy. Either way, if those samples show high levels of eosinophils, then you most likely have eosinophilic enteropathy.

Eosinophilic enteropathy is considered to be a chronic condition, meaning symptoms may at times be more or less severe. There's no cure, but eliminating particular foods may help you manage it. If your symptoms get particularly bad, you may need to consume what's called an elemental diet, which is various nutrients in a hypoallergenic liquid form. Your doctor may also use steroids to treat your condition.

Living with Eosinophilic Enteropathy

There are several major challenges to living with EE—managing the painful symptoms, coping with a restricted diet, and in some cases, dealing with elemental diets, which may be unpalatable and are certainly boring and repetitive.

In some cases, removing a few allergens from the diet makes a major difference in the course of eosinophilic enteropathy. However, for some people, it's necessary to remove numerous foods from the diet to have a noticeable effect. This can create three major issues.

First, and most immediately, a severely restricted diet may cause difficulties in getting sufficient nutrients and calories. Second, finding foods that are safe for a diet with multiple allergies can be frustrating and challenging. And finally, severely restricted diets compound the normal social pressures of living with food allergies, especially for children.

A Word from Verywell

There's no doubt that living with eosinophilic enteropathy can be challenging. Here are some tools that you may find helpful.

First, connect with one of the major organizations providing support, resources, and information to the EE community. The American Partnership for Eosinophilic Disorders (APFED) and Campaign Urging Research for Eosinophilic Disease (CURED) both offer a wealth of information on their websites and may be able to help you get in touch with other families or resources in your area.

Second, consider working with a nutritionist or dietitian with specific expertise in restricted diets. Your allergist or gastroenterologist may have a recommendation for such a professional in your area. APFED offers a resource for families whose doctors may have recommended an elemental diet.

Finally, managing the social and emotional aspects of a restricted diet are similar for EE patients and for people with other food allergies, although many people with EE have to contend with many food allergies. You may find it helpful to learn how to manage holidays with food allergies (especially if you celebrate in someone else's home), and how to cope with allergy-related stress.

Finally, if you have a young child with a restricted diet, you should explore how to handle preschool for children with food allergies.

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