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Joanne Van Zuidam

Eosinophilic Gastrointestinal Disorder (EGID)

If baby is refusing food, not gaining weight or has acid-reflux symptoms that don’t improve with treatment, an EGID may be to blame. Here, what they are, and how they’re treated.

What is EGID?

When the body produces too many eosinophils, a type of white blood cells, in response to an allergen, the result is chronic inflammation that damages tissue. Eosinophilic Gastrointestinal Disorders (EGIDs) are a broad category of at least four diseases that affect different parts of the digestive system. The most common is  eosinophilic esophagitis (EoE), which affects the esophagus. Eosinophilic gastritis affects the stomach, eosinophilic gastroenteritis affects the intestinal tract, and eosinophilic colitis affects the colon.

One cause is an allergic response to food. “If your baby is having symptoms related to the intestinal tract, such as not eating very well, throwing up, refusing to eat, weight loss and diarrhea, and he has other allergic diseases like eczema, asthma, food allergies — or a family history of them — these may hold clues to the diagnosis,” says Glenn T. Furuta, MD, director of the Gastrointestinal Eosinophil Diseases Program at University of Colorado School of Medicine, and pediatrician at Children’s Hospital Colorado. Your physician will also look for problems with growth and development. Because these symptoms can cause malnutrition, your child may not be gaining weight as well as they should, or hitting developmental milestones.

The complex disorder, which is treated differently depending on its location in the digestive tract, is a lifelong condition often managed with a team of experts: a gastroenterologist, an allergist and a dietitian.

What are the symptoms of EGID?

Babies with EoE have problems with eating or abdominal pain (older children may have swallowing problems). With eosinophilic gastritis, there are symptoms of abdominal pain or vomiting, and decreased appetite. Eosinophilic gastroenteritis symptoms include diarrhea, abdominal pain and weight loss. Eosinophilic colitis — common in babies with a milk or soy allergy — may have symptoms such as diarrhea, abdominal pain and sometimes blood in the stool.

Are there any tests that diagnose EGID?

An endoscopy (or colonoscopy) is performed and the tissue is biopsied to look for signs of inflammation. That, plus an increased number of eosinophilics, or normal white blood cells, indicate the disease. “These white blood cells are typically associated with allergic diseases,” Furuta explains.

Once a diagnosis is confirmed, an allergy test is usually done. Both a skin prick test and skin patch test are ordered, and possibly blood tests as well. Even if these tests come back normal, the child may still have a food allergy, says Rita Verma, MD, section chief of Clinical Gastroenterology at The Children's Hospital of Philadelphia. That can be very frustrating for families, she says, explaining that the allergy tests are used more as a guide to know which foods to focus on to see what baby is reacting to. Parents are asked to find the food triggers by eliminating certain foods from baby’s diet, allowing six to eight weeks for the tissue to heal, then doing another endoscopy to see if the eosinophils are gone from the esophagus. It’s time-consuming and could take years to pinpoint the culprits.

How common is EGID?

According to the Registry of Eosinophilic Gastrointestinal Disorders, eosinophilic esophagitis affects up to one in 1,000 people. The other eosinophilic disorders occur less frequently.

Can you have the disorder in multiple EGIDs?

Yes. If elevated levels of eosinophilics are seen in more than one part of the digestive tract, it’s referred to as esosinophilic gastroenteritis.

How did my baby get an EGID?

It could be a matter of heredity — he may be predisposed to have allergic diseases, including EGIDs. If either parent has an allergy, there is an increased likelihood that your child will have allergies too. However, the triggers for allergic responses are really hard to pinpoint. An infection or autoimmune disorder may increase the risk of an EGID as well. What is known: It occurs more often in boys than in girls, and it’s been identified in all races and ethnicities.

Can EGID be prevented?

Unfortunately, there’s no special prenatal diet you can go on to prevent this condition if you’re concerned that you may pass an EGID down to baby.

How is EGID treated?

There are two main approaches to treatment: drugs and diet. For EoE, the medications are topical steroids sprayed in the mouth, so they can coat the esophagus to help it heal. For the other diseases, systemic steroids may be prescribed.

The side effects of the topical steroids (taken for EoE) are pretty safe. In growing babies, however, the steroids may affect their height. Your physician will most likely monitor a child’s height very closely. Another side effect from steroids is a fungal, or yeast, infection in the mouth.

The steroids are taken every day, twice a day. There is a small percentage of children for whom this doesn’t work. A follow-up endoscopy makes sure the eosinophils have improved and the therapy is working.

As far as diet is concerned, you may want to eliminate the food you’re allergic to (if you find out what it is). For baby, that could mean a special type of formula, if you’re bottle-feeding. For an older child, it gets a little bit tougher. “When children are at home, it’s easier to follow diet therapy,” Verma says. “Once the children go away to school, it’s easier to do the steroids.” You can mix and match and see what works best, but it’s a lifelong treatment.

Are there complications of EGID?

There are three things to think of in terms of EoE: Children don’t grow adequately because of malnutrition; a piece of food can get stuck in their esophagus, and if it gets stuck, they have to go to the emergency room and get it taken out via an endoscopy; and if left untreated, the chronic inflammation causes a narrowing or a stricture within the esophagus so that food can’t go down as easily. In the case of a stricture, dilation is done to stretch the esophagus.

Are there any other resources for dealing with EGID?

American Partnership for Eosinophilic Disorders

North American Society for Pediatric Gastroenterology, Hepatology and Nutrition

Campaign Urging Research for Eosinophilic Disease

The Bump experts: Glenn T. Furuta, MD, Professor of Pediatrics at the University of Colorado School of Medicine, and Director of the _ Gastrointestinal Eosinophilic Diseases Program with Children’s Hospital of Coloradoand Pediatric Gastroenterologist in the Digestive Health Institute at Children’s Hospital Colorado; Rita Verma, MD, Section Chief of Clinical Gastroenterology, _ The Children's Hospital of Philadelphia