Eosinophilic Esophagitis (EE)

  • Not all allergic reactions are immediately noticeable. Most people have heard of allergies that require emergency treatment, but many allergic reactions come on slowly, with subtle symptoms. Eosinophilic (ee-oh-sin-oh-fill-ic) esophagitis is one of these reactions.

    Eosinophilic esophagitis (or “EE,” and also known as “EoE”) is an allergic reaction that causes inflammation and damage to the esophagus, the muscular tube that connects mouth to stomach.

    EE may affect your child’s ability to eat – both physically (a swollen esophagus makes it hard for food to go down) and psychologically (a child may grow to associate eating with discomfort). It’s usually caused by a food allergy.

    • A child can get diagnosed with EE at any age – even into adolescence and beyond.
    • It’s estimated that the condition affects about 1 in 10,000 children.
    • Males are more likely to be affected than females.
    • A cure has yet to be found – it’s a chronic condition that requires lifelong management.
    • EE is not a life-threatening condition, nor does it increase your child’s risk of esophageal cancer.
    • Treatment may include medications and/or dietary modification.

    How Boston Children's Hospital approaches EE

    The Eosinophilic Gastrointestinal Disease (EGID) Program at Children's is a multidisciplinary clinic dedicated to caring for children and adolescents with eosinophilic esophagitis and other eosinophilic gastrointestinal diseases (EGIDs).

    We’re the only multidisciplinary program in the Northeast that cares for children with these conditions and we’re the medical liaison for the local support group, EGID Boston. EGID Boston meetings are held here at Children’s, at our Waltham branch.

    Our program provides comprehensive evaluation and treatment for infants, children and adolescents with suspected or diagnosed EGIDs, including:

    • eosinophilic esophagitis
    • eosinophilic gastritis
    • eosinophilic gastroenteritis

    The program is staffed by an experienced team of clinicians, all with specialized training in the care of children with these complex chronic conditions. Our staff includes:

    • gastroenterologists
    • allergists
    • registered dieticians
    • a clinical social worker
    • nurse practitioner to coordinate with parents

    Eosinophilic esophagitis: Reviewed by Elizabeth Hait, MD, MPH, and John Jhe-Yun Lee, MD © Children’s Hospital Boston, 2011

    Boston Children's Hospital
    300 Longwood Avenue
    Fegan 5
    Boston MA 02115
      617-355-7964

  • At Boston Children’s Hospital, we understand that you may have a lot of questions when your child is diagnosed with an EGID:

    • What is it?
    • How will it affect my child long term?
    • What can we do about it?
    • Will my child be able to live a normal life?

    We’ve provided some answers to those questions here, and when you meet with our experts, we can talk with you more about your child’s specific situation.

    For many parents, their child’s diagnosis is the first time they’ve heard the word “eosinophilic,” let alone heard of eosinophilic esophagitis. With that in mind, here’s what you need to know about what “eosinophilic” means:

    What’s an eosinophil?

    An eosinophil is the least common of all white blood cells. Only a tiny fraction of your child’s blood cells are eosinophils.

    What does eosinophilia mean?

    It means that there’s a higher-than-normal level of eosinophils in your child’s blood.

    What causes eosinophilia?

    Lots of things can cause eosinophilia. In the United States and other developed nations, it’s most often caused by allergic reactions to food or to something in the environment.

    What are eosinophilic gastrointestinal disorders (EGIDs)?

    EGIDs are conditions caused by high levels of eosinophils in different parts of the gastrointestinal (GI) tract. Each EGID is named for the part of the GI tract where the eosinophils cluster:

    • eosinophilic esophagitis – in the esophagus
    • eosinophilic colitis – in the colon (large intestine)
    • eosinophilic gastritis – in the stomach
    • eosinophilic gastroenteritis – in the stomach and small intestine.

    The -itis suffix means “inflammation.”

    Is there a cure for eosinophilic esophagitis?

    Not yet. But we can help your child manage his condition with dietary recommendations and, if necessary, medications. Researchers at Children’s and elsewhere are working to gain a better understanding of these disorders.

    What happens in eosinophilic esophagitis?

    If your child has EE and eats something that he’s allergic to, eosinophils will migrate to the inner lining of his esophagus, and attach themselves there. This can cause his esophagus to swell up, making it difficult to swallow and increasing the chance that food will get stuck there. But this doesn’t happen right away – your child may feel fine after eating something he’s allergic to. It can take hours or days for the allergic reaction to appear. This means it’s often hard to know which food caused the reaction.

    What complications are associated with EE?

    Complications associated with EE include:

    • choking
    • food impaction (getting food stuck in the throat) that requires a trip to the emergency room
    • eating disorders can develop if eating is painful
    • scarring and narrowing of the esophagus that may require surgery to fix
    • feeding aversion may develop in toddlers, so that even if their EE is being managed, they may still not want to eat because they associate eating with feeling uncomfortable

    Luckily, the earlier your child’s EE is diagnosed and treated, the less likely he is to develop complications.

     

    Causes

    In the United States and other developed nations, EE is most often caused by allergies. If your child is allergic to something (called an “allergen”), it means that his immune system reacts as though the allergen is more dangerous than it actually is. The irony is that sometimes it’s the reaction that causes the damage.

    Researchers aren’t clear on why some people have allergies and others don’t, but there seems to be a strong hereditary component. Allergies are extremely variable, too – your child might be extremely allergic to something, or have an allergy so mild that he never notices it.

    Symptoms

    While each child may experience symptoms differently, common signs of EE include:

    • difficulty swallowing (dysphagia)
    • food getting stuck in the throat (impaction)
    • chest pain
    • vomiting
    • poor weight gain
    • refusing to eat (especially in toddlers)
    • increased sensitivity to food texture – some kids might dislike “mushy” food like bananas, others might dislike hard, crunchy food like carrots.
    • reflux in babies that doesn’t respond to medications

    It’s important to remember that none of these symptoms points definitively to EE – they’re also often found in gastroesophageal reflux disease (GERD) and can even occur in healthy children and adults. That’s why it’s important that your child is diagnosed by specialists who have a lot of experience with EE and how it appears in children.

    FAQ

    Q: Is there a cure for eosinophilic esophagitis?
    A:
    Unfortunately, a cure for EE has yet to be found. Our experts can help your child manage his EE with dietary recommendations and, if necessary, medications.

    Q: Could my child outgrow EE?
    A:
    Researchers aren’t quite sure yet – since it’s a fairly new disease (first described 20-25 years ago), no one really has long-term data about this. But there have been reports of people having outgrown allergies to one or two of the foods that were causing their EE.

    Q: Will my child be all right?
    A:
    Yes. He’ll most likely need to make some dietary and lifestyle changes, but EE isn’t life-threatening and it’s very treatable.

    Q: What is my child allergic to?
    A:
    It’s often hard to know for sure. Our allergists have different ways of determining which foods your child is likely to be allergic to, and we can remove them from your child’s diet and see if his symptoms improve.

    Q: Are there any foods that kids with EE tend to be allergic to?
    A.
    Foods that seem to be most likely to trigger EE include:

    • milk (and all dairy)
    • egg
    • wheat
    • soy
    • chicken
    • beef
    • corn

    It’s important to read labels carefully, since some of these foods can be hard to avoid, especially milk and soy. Companies are required by law to use certain words when they list some foods (including milk, egg, wheat, soy, peanuts, nuts and shellfish) on the label. Your child’s dietician will explain everything you need to know about reading labels.

    Q: How soon will we know what my child is allergic to?
    A:
    We can think of determining food allergies as something that happens in two parts:

    1. The first part is a matter of scheduling appointments. If your child is being seen at our EGID clinic, he’ll see his allergist and his gastroenterologist on the same day. The results of the skin and blood allergy tests are available that day, and patch testing (another type of allergy testing) is a three-day process, with results available on the third day.

    These tests give us an idea of what your child might be allergic to, but the only way to know for sure is to test it. We do this by removing these foods from his diet.

    2. If our predictions about your child’s food allergies are right, it takes about six to eight weeks for the inflammation in his esophagus to go away – even if his symptoms start to improve within a week or two. So after six to eight weeks, we’ll do another endoscopy to look for inflammation and see if his level of eosinophils has decreased.

    Q: My child seems to have severe EE. Does that mean he’s probably allergic to more things?
    A:
    Not at all. People with EE may have very severe or very mild cases, and this has nothing to do with how many or which foods they’re allergic to.

    Q: Could environmental allergies be causing my child’s symptoms?
    A:
    Yes, this is possible – your child’s allergist will test for these, too.

    Q: Will my child have an allergic reaction if he eats meat that comes from an animal who ate something he’s allergic to?
    A:
    Most likely not – if the animal has already processed the protein, it should be fine for your child.

    Q: Should my child’s sibling avoid the same foods?
    A:
    No, there’s no reason for the sibling to avoid the same foods. Since there’s a hereditary aspect to EE – if your child has it, there’s a one in ten chance another family member will as well – we may test the parents, too. But what gets inherited is the tendency to have allergies, not allergies to specific things.

    Q: Will my child need to be hospitalized?
    A:
    Occasionally, a child’s symptoms might be so severe that he needs to spend some time in the hospital, so that we can correct malnutrition and stop diarrhea and the loss of blood and fluids. We might treat him with a special diet, medications, or, in some cases, surgery. But please be assured that as a valued member of your child’s health care team, if this happens, you’ll be kept fully updated at all times.

    Q: Should I tell my child’s school about the diagnosis?
    A:
    Definitely. His teachers and school nurse can encourage him to follow his diet at school and provide alternative snacks or treats when appropriate.

  • You may have heard that eosinophilic esophagitis can be difficult to diagnose, and unfortunately, that’s true. But our experts at Boston Children’s Hospital's Eosinophilic Gastrointestinal Disease (EGID) Program have lots of experience in diagnosing and caring for children with EE–in fact, we’re the largest EGID clinic in New England.

    What makes it so hard to diagnose EE?

    EE–and all EGIDs–can be difficult to diagnose because:

    • they’re relatively rare, and many doctors aren’t familiar with them
    • there aren’t specific symptoms that unambiguously point to EGID
    • doctors sometimes disagree over what should be considered a high level of eosinophils
    • there’s no typical way that the GI tract of a person with EE will look in an endoscopy

    How do you diagnose EE?

    At our EGID clinic, a thorough diagnosis of eosinophilic esophagitis is a four-step process:

    Step 1. Determine whether acid reflux could be causing your child’s symptoms

    The first thing we do is have your child take an acid-blocking medicine for at least four to six weeks. If his symptoms improve, it’s likely that they’re caused by gastroesophageal reflux (GERD) and not EE.

    Step 2. Determine that your child’s symptoms are caused by eosinophilia in the esophagus

    If his symptoms don’t improve on the acid-blocking medicine, we perform an upper endoscopy–a procedure in which the gastroenterologist slides a long, thin, flexible tube with a tiny camera on it down your child’s esophagus, and into his stomach. This lets us look for inflammation and for a high number of eosinophils.

    Sometimes the eosinophils can only be seen under a microscope, so we’ll take tissue biopsies from your child’s esophagus, duodenum (part of the small intestine) and stomach. These biopsies are tiny and don’t hurt. If we see more than 15 eosinophils while your child is taking this acid-blocking medicine, we can diagnose eosinophilic esophagitis.

    Step 3. Eliminate the possibility that the EE is caused by something other than an allergy

    We use blood, serum and stool tests to check for evidence of an infection and rule out other conditions and possible causes of your child’s symptoms.

    Step 4. Test for possible food allergies

    The next step is to figure out what foods your child may be allergic to – in many cases, staying away from these foods is all the treatment he needs. Your child’s allergist will perform three types of food allergy tests: skin, blood and food patch tests.

    Why do we need three kinds of food allergy tests?

    Skin and blood tests pick up on different allergies, and food patch tests allow us to check for delayed allergic reactions.

    Skin prick tests are used to look for food and environmental allergies. Your child’s allergist will use a small needle to prick his skin with a bit of oil from certain food extracts. The oils will stay on your child’s skin for 15 minutes, and if he’s allergic, a little hive will appear. The allergist might also use this method to test for allergies to pollen, dust, mites, mold, cat and dog dander.

    The tests themselves aren’t painful, but a positive reaction could cause itching that might be uncomfortable.

    Unfortunately, these tests aren’t 100% accurate, so a positive test may not mean that your child is allergic to that allergen, and your child may test negative for an allergen that he actually is allergic to. Our expert allergists have many years of experience in interpreting this data.

    Some medications may interfere with the test results, and your child should not take these before his appointment with the allergist.

    Blood tests (also known as RAST, or radioallergosorbent tests) are used to measure antibodies that your child’s body produces if he’s allergic to certain food and/or environmental allergens.

    Blood tests don’t predict how severely your child would react to an allergen, but they do give a sense of how likely your child would be to have a reaction. These tests are also not 100% accurate, and will be interpreted by your child’s allergist. Skin prick and blood tests can be done on the same day.

    Food patch tests are used to detect possible delayed-reaction food allergies. We usually test about 20 foods this way, and only ones that your child hasn’t tested positive for with skin or blood tests.

    For the food patch tests, your child will be asked to visit our Allergy Program twice:

    1. During the first visit, your child’s allergist uses tape to secure food patch test panels to your child’s back. These come from an allergy kit, and each one is a backing with tape that a small amount of food has been placed onto.

    2. We ask you to remove the patches after 48 hours.

    3. At 72 hours, you and your child come back to Children’s, and his allergist checks for any redness, swelling or hives at the sites where the patches were placed.

    It’s important to remember that no test can definitively diagnose or rule out an allergy, and sometimes the doctor won’t be able to identify an allergy, and the disease will be thought to be “non-allergic” or else caused by unidentified allergies.

    After these tests are complete, your child’s allergist will meet with your family to discuss the test results, and decide together on what the next steps will be.

  • If you've just learned that your child has eosinophilic esophagitis, you may be feeling a mix of emotions–relief from finally knowing what's causing his discomfort, but also concern about what lies ahead. Rest assured that at Boston Children's Hospital's Eosinophilic Gastrointestinal Disease (EGID) Program, we've treated lots of children with eosinophilic esophagitis. And unlike some EGID programs that default to tube feeding after a certain number or combination of food allergies have been identified, we work closely with you to come up with a tailored treatment plan that works for your child and your family.

    How is eosinophilic esophagitis treated?

    In most cases, we can take two approaches to treating your child's EE:

    • prescribe medications that tame the inflammation and reduce the number of eosinophils in his esophagus
    • create a diet plan that restricts specific foods, based on his allergy test results

    Medicines

    There are some medicines–particularly steroids–that are effective at treating eosinophilic esophagitis.

    Can steroids cure my child's EE?

    No, but your child is likely to experience remission (absence) of symptoms for as long as he takes them. As soon as he stops taking the steroids, the EE will come right back.

    What are the long-term side effects of taking steroids?

    Other than the risk of yeast infections (thrush) in the throat from swallowing them, so far no one knows for sure. You may have heard that steroids suppress the adrenal glands (the functions of which include producing testosterone and helping to regulate blood pressure), but short-term studies indicate that this is not the case. We can't yet say whether long-term steroid use could affect growth and bone density.

    When would EE be treated with medicine?

    Sometimes we use medicine as a kind of treatment bridge while we try to figure out what foods your child is allergic to. And some families feel that they're unable to follow the diets recommended by the dietician. Depending on your child's allergies and where you live, it may be hard to find foods that his body can tolerate. Your child's age might also be a factor–sometimes teenagers don't want to adhere to a restricted diet, or when they go off to college, they find that it's not practical to do so.

    Dietary modification

    While EE is a chronic condition, the vast majority of people who have it are able to eliminate their symptoms simply by avoiding the foods that trigger them.

    There are three main approaches to dietary therapy: avoiding the foods indicated by the allergy test, the empirical food elimination diet, and a strict elemental diet.

    Avoiding the foods indicated by the allergy test

    With this approach, your child avoids between three and six foods (usually) for which he tested positive for allergies. Since dairy often doesn't get picked up by allergy testing, we often also remove milk from the diet, just to be safe.

    Since allergy tests aren't 100% accurate, this approach relieves EE symptoms in 50-75% of patients.

    Empirical food elimination diet (sometimes called the “six food elimination diet”)

    With this diet, your child avoids the foods that are known to be the most common allergens, such as dairy, egg, wheat and soy. There are also a couple of other foods that are added to this list, depending on what is indicated by the latest research–another reason why it's important to be seen by specialists who are up-to-date with the current thinking about EE.

    Strict elemental diet

    Sometimes a stricter diet–called an elemental diet–is needed. This means that your child gets 100% of his nutrition from a special formula that's made of amino acids (the building blocks of proteins), fats, sugars, vitamins and minerals. Even though the proteins that your child is allergic to are made of amino acids, the amino acids themselves are safe and won't cause a reaction.

    This approach has a 95% success rate. Most of the time when we use this diet, we start off by restricting all food, and then gradually re-introduce foods until we discover which ones are causing your child's allergic reactions.

    Children and adults who rely on an elemental diet either totally or even just partially can sometimes find it hard to drink enough of the formula to maintain proper nutrition, so we might use a special tube (called a “G-tube”) to introduce the formula directly into your child's stomach ("enteral feeds"). In extremely severe cases, nutrition may be administered directly into the blood stream ("parenteral feeds").

    We know that none of these diets are particularly easy to follow, especially for kids. That's why at Children's, we focus on what your child can eat. Our dietician can give you lots of suggestions for putting together meals and snacks, new foods to try (such as quinoa and barley–whole grains that are versatile and easy to prepare) and even recipes.

    Follow-up

    In the beginning, while we're discovering which foods trigger your child's symptoms, you'll come in for visits maybe three or four times per year. Together with the doctors, you'll decide which, if any, foods to try to introduce back into your child's diet. Once we've established the best diet for your child, we'll see you for yearly follow-up visits–and of course, if you have any concerns in the meantime, we're here for you.

    Should I tell my child's school about the diagnosis?

    Absolutely. Your child's teachers and school nurse can be great allies in helping to protect your child's health by encouraging him to follow his diet at school and providing alternative snacks or treats when appropriate.

    One thing to remember is that for many teachers–and many people in general–a “food allergy” is something that causes an immediate, dramatic reaction, and requires emergency medical attention. They may need to be educated about your child's condition. Our clinic has prepared a letter that explains EE and can be customized to reflect your child's exact situation that you can give to your child's school. With your permission, our social worker can collaborate with school staff on strategies to support your child's medical treatment plan at school.

     

    Life with EE

    There's no denying that food plays a large role in culture. For a family affected by severe food allergies, it may seem like the restricted foods are everywhere you look, including celebrations, dates, casual gatherings and even ballgames. It can be easy to feel frustrated and left out, especially for a child.

    The good news is that food doesn't have to be a prominent part of our lives. Deciding how to retool family traditions to make them less food-centric can be a creative and fun activity that your family can do together. After all, inventing your own custom-made traditions is something many families never think to do. Remember that even though your child may be limited in what he can eat, you can still save some ‘safe' foods for celebrations and special occasions. Here are some other tips to keep in mind as you begin to chart your child's new nutritional path:

    EE at school

    • Ask your child's teachers to let you know about upcoming birthday celebrations. Then, together with your child, decide in advance how to help him feel a part of it.
    • Make sure your child has a stash of ‘safe' food in the classroom to ‘match' the food served at birthday parties and snack times.
    • Together with your child, come up with a plan for what he can say to other kids if they ask about his special foods.
    • Make sure your child is prepared with food on field trips and other school events.

    Dining out with EE  (from the American Dietetics Association)

    • Know what ingredients are in the foods at the restaurant where you plan to eat. When possible, look over the menu in advance (many restaurants now post their menus online).
    • Let your server know from the beginning about your child's food allergy. Ask about preparation and ingredients before you order. If your server doesn't know or seems unsure, ask to speak to the manager or chef.
    • Avoid buffet-style or family-style service, as there may be cross-contamination of foods from using the same utensils for different dishes.
    • Avoid fried foods, since the same oil may be used to fry several different foods.

    It's estimated that around 12 million people in the United States have food allergies. That's a big incentive for companies to produce – and restaurants to serve – more ‘safe' foods.

    EE and friends

    • Schedule parties and get-togethers with friends for times other than traditional mealtimes, such as mid-afternoon or after dinner.
    • Encourage your child to pursue non-food related interests and hobbies.
    • Plan fun, creative birthday parties.

    These sites can provide more information and suggestions for life with EE:

    Kids with food allergies

    Food allergy and anaphylaxis network, including lunch suggestions

    American Partnership for Eosinophilic Disorders

     

    Coping and support

    It's important to remember that while having a child with an EGID can feel isolating, many children and their families have been down this path before. We've helped them, and we can help you, too. There are lots of resources available for your family– here at Children's, in the outside community and online. These include:

    Patient education: From the very first visit, our nurses will be on hand to walk you through your child's treatment and help answer any questions you may have. And they'll also reach out to you by phone, continuing the care and support you received while at Children's.

    EGID support groups: The EGID Support Group of Boston holds its monthly meetings at Children's Waltham location.

    Social work:  Coping with a chronic medical condition can be stressful for the entire family.  Our clinical social worker is available to provide support, assistance and resources during the course of your child's treatment.

    On our For Patients and Families site, you can read all you need to know about:

    • getting to Children's
    • accommodations
    • navigating the hospital experience
    • resources that are available for your family
  • Boston Children’s Hospital is home to the world’s most extensive research enterprise at a pediatric hospital. We also have many partnerships with research, biotech and health care organizations, and we work together to find innovative ways to improve kids’ health.

    The Eosinophilic Gastrointestinal Disease (EGID) Program joins several other centers of excellence within the Division of Gastroenterology, Hepatology and Nutrition, including those for IBD, liver disease, celiac disease, clinical nutrition, motility and functional gastrointestinal disorders and endoscopy. The Division of Allergy and Immunology cares for more than 6,000 children in New England, as well as children with rare immunodeficiencies from around the world.

    While we are learning more about the cause and treatment of EGIDs, much remains uncertain. The EGID Program at Children’s is actively involved in cutting-edge research with basic science, clinical and translational studies, including investigating ways to recognize the presence of eosinophils without having to do an endoscopy.

    You may be offered the opportunity to participate in a study. Please know that while conducting research is a very important mission of our program, your child’s care in the EGID Program will never be compromised should you decline to participate.

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