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What are Eosinophilic Gastrointestinal Disorders (EGID)?

Eosinophilic gastrointestinal disorders (EGID) are a series of medical problems characterized by excessive levels of eosinophils in various parts of the gastrointestinal tract (digestive tract). Specifically, these problems include:

Eosinophilic Esophagitis (EE): high numbers of eosinophils present in the esophagus;

Eosinophilic Gastritis (EG): high numbers of eosinophils in the stomach;

Eosinophilic Enteritis: high numbers of eosinophils in the small intestine;

Eosinophilic Colitis: high numbers of eosinophils in the large intestine the colon.

Eosinophilic Gastroenteritis: high numbers of eosinophils accumulate in multiple parts of the gastrointestinal tract.

Inflammation is not always present visually during an endoscopy or colonoscopy, but it may be seen under the microscope. Abnormally high numbers of eosinophils within the digestive system alone may or may not be enough to diagnose a person with an EGID. It may also depend on what the eosinophils are doing while present. Doctors consider: inflammation, quantity of eosinophils, activity of eosinophils, and symptoms.

Unfortunately, many people go undiagnosed for years, suffering with what can be severe symptoms. Recent studies at Cincinnati Children’s Hospital have shown that one type of EGID, Eosinophilic Esophagitis, is even more common than other well known diseases that affect the gastrointestinal tract such as Crohn's Disease and Cystic Fibrosis.

What are the Symptoms of EGID?

Symptoms can vary greatly, depending on the area affected, but include:

Nausea

Vomiting

Diarrhea

Failure to thrive (poor growth or weight loss)

Abdominal or chest pain

Reflux that does not respond to usual therapy (i.e. proton pump inhibitors, a

medicine which stops acid production)

Dysphagia (Difficulty swallowing)

Food impactions (food gets stuck in the throat)

Gastroparesis (Delayed emptying of the stomach)

Anorexia (poor appetite, but not the self-induced kind)

Early satiety (feeling full sooner than you should)

Bloating

Anemia

Blood in the stool

Malnutrition

Difficulty sleeping

None of these symptoms are limited to EGID, and many can occasionally occur in healthy kids or adults, so the diagnosis is not usually considered unless the symptoms have not resolved. The symptoms of Eosinophilic disorders can be similar to inflammatory bowel disease, food allergies, irritable bowel syndrome and reflux, as well as others.

In addition to the above, some people also experience pain in their lower limbs (legs, ankles & feet) which is not uncommon with GI disorders, ear infections, asthma, croup, migraines, mysterious fevers, and more frequent “colds” when they are reacting to a food. Behavioral changes (*) have also been reported in some children.

(*If your child has ongoing behavioral issues or any developmental issues, you may want to consider an evaluation by a Developmental Pediatrician.)

How is EGID diagnosed?

Endoscopy and biopsy is the ONLY way to confirm the diagnosis of EGID. It cannot be diagnosed based upon symptoms alone. During an endoscopy, the gastroenterologist uses an endoscope (a tube with a light and camera at the end) to look at the GI tract and take multiple small biopsies. The biopsies are later reviewed by a pathologist. A high number of eosinophils (counted per high power field under the microscope) suggest the diagnosis of EGID. The pathologist will also look for the location of the eosinophils (which part of the GI tract they are from & how deep in the tissue), changes in the layers of tissue, and degranulation (spilling of the contents of the eosinophils). Eosinophils can normally be found in small numbers in all areas of the GI tract except the esophagus. GERD (acid reflux) is associated with low numbers of eosinophils in the esophagus. With eosinophilic esophagitis, the number of eosinophils seen is much higher and remains elevated despite treatment with acid reflux medication (proton pump inhibitors or histamine-2 receptor blockers).

Once the diagnosis of EGID is confirmed, food allergy testing is typically recommended to guide treatment. Tests for food allergies include skin prick testing, patch testing and RAST (Radioallergosorbent test).

Treatment:

There is currently NO cure for EGID, but the goal of treatment is to alleviate symptoms in the gastrointestinal tract. It is based upon the location of the eosinophils, whether only in the esophagus, only in the stomach, only in the large intestine, or a combination of locations. Treatment may include:

Food restriction, such as in an elimination diet where foods that have been positively identified via allergy testing are strictly avoided. Many people find that this option works very well for them.

Elemental diet, a special medical food (elemental formula) is consumed either by mouth or feeding tube.

Medication

Elimination diets: Some doctors are advising to remove only what a patient has tested positive to via skin prick testing, RAST testing & patch testing. Others are suggesting that the patient remove the top 8 food allergens (milk, egg, peanut, tree nut, soy, wheat, fish, & shellfish). However, it could be any food or combination of foods. While allergy tests are used to guide an elimination diet, there can be false negative and false positive test results. It only takes one false negative food for the elimination diet to fail. When an elimination diet does not do enough to clear the GI tract of eosinophils (as evidenced by scope with biopsy), sometimes a stricter diet is needed.

Elemental diet consists of a medical food (elemental formula), without any proteins, either in its whole or incomplete form (pre-digested or hydrolyzed). Elemental formulas are made of amino acids (the building blocks of proteins), fats, sugars, vitamins and minerals. Amino acids do not cause allergic reactions but whole or partial proteins can.

Although new flavors are available to make the formulas more palatable, kids and adults who need elemental formula may have a difficult time drinking enough of it. To maintain proper nutrition, some require enteral feeding tubes to allow the formula to go directly into the stomach. In the most severe cases, nutrition is administered directly into the blood stream (parenteral feeds, or TPN).

Medication: No medication can cure EGID. They can be used, along with dietary management, to suppress the symptoms of the disease. The most common medication is steroids, which can be given topically (spray that is swallowed), orally, through a feeding tube or through an intravenous (IV) line. A physician determines the type of steroid, amount and duration of treatment based on individual needs. Side effects from steroids often limit long-term use. There is also a new treatment being studied (infusions of an anti-IL5 medication) which, if successful, may allow for an expanded, albeit still limited diet for some patients.

****DISCLAIMER****

This website has been set up by parents of children with eosinophilic disorders. We are NOT doctors.

The information shared on this website is not intended to replace advice from your licensed healthcare provider.

Decisions regarding medical care should always be made with your licensed healthcare provider.

Please consult your doctor before making any changes in medical care.

No one should ever disregard or delay seeking medical advice due to the content of this website.