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Treatment of EGIDs
Consensus Recommendations for the Diagnosis and Treatment of eosinophilic esophagitis (EoE) was published in 2007 and updated in 2011. At present, the two main treatments recommended for EoE are dietary management and topical corticosteroids. For other EGIDs, there currently is no documented consensus for treatment, however, dietary management as well as systemic steroids may be prescribed.
Many children and adults with EoE respond favorably to dietary treatments, but the response may be less predictable for those with other EGIDs such as eosinophilic gastritis, gastroenteritis, enteritis and colitis. The dietary restrictions are guided by food allergy testing, a detailed medical history, and ‘fine-tuned’ with food trials once the symptoms have resolved.
Targeted Elimination Diets
Targeted elimination diets, in which "positive" foods on allergy testing or history are removed from the diet, are one type of dietary treatment. An elimination diet may be the only treatment needed for some individuals.
Empiric Six-food Elimination Diet
The Empiric Six-food Elimination Diet is another type of elimination diet that has shown success in some patients. Instead of basing dietary elimination on skin testing, patch testing, or serum IgE testing, patients eliminate 6 common allergenic foods (milk, eggs, wheat, soy, peanuts/other nuts, fish/shellfish) regardless of the results of the allergy testing. These foods must be restricted in all forms, in any amount. This six-food elimination diet may also sometimes be referred to as an 8-food elimination diet, with fish and shellfish, and peanuts and tree nuts counted as individual foods.
Learn more: Elimination Diet 101
Elemental diets, in which all sources of protein are removed from the diet, are another dietary therapy that are effective in treating most people with EoE, and may prove effective in patients who have other EGIDs. An elemental diet includes only an amino acid formula (building blocks of protein), with no whole or partial proteins. Simple sugars, salt and oils are permitted on an elemental diet.
Children and adults who rely in part, or completely, on an elemental amino acid based formula may have a difficult time drinking enough of the formula. While unflavored versions of these formulas may not be palatable, more palatable flavored versions are now available for oral use. In some situations, to maintain proper nutrition, tube feedings directly into the stomach (enteral feeds) may be required. Amino-acid based formulas are very expensive and are only sometimes covered by health insurance. In children and young adults, consideration of developmental issues are paramount in deciding if these diets are appropriate and close follow up is always warranted.
Food trials involve adding an ingredient back at a time to one’s diet, most often one at a time, to determine specific foods causing a reaction. Food trials begin after symptoms resolve and eosinophils have cleared. Food trials are handled differently by different professionals, but may involve repeat endoscopies with biopsies as foods are introduced to determine which foods are ‘safe’ for an individual.
Learn More: Food Trials for EoE
Food Trials from a Child's Point of View: "My name is James. I am 9 years old. A food trial is when I slowly go back on a food that I previously eliminated to see if my body does well with it. If I fail a food trial, I feel like I have the flu. I throw up every food I eat. When I stop eating the food I am trialing, the symptoms stop.
"One time, I was eating the food up until the scope, and then I failed the scope. I did not have any symptoms at all when that happened. After the scope, we got biopsy results to show whether or not I failed the food. I felt crushed when I failed that food, cauliflower.
"When I pass a food on a food trial, I get to keep eating it. It makes me feel happy that I have one more food.
"After 4 years of food trials, I am still determined to keep going with them. I have passed more foods than I have failed, which helps me want to keep going. When I have to pick a food to trial, it feels like there is too much to choose from, because there is. Once I finally choose the food to trial, I am excited to get to try it but am prepared for possibly failing the food."
Medications For EoE
Medications for eosinophilic esophagitis most commonly include steroids to control inflammation and suppress the eosinophils. Steroids can be taken orally or topically (swallowed medicines traditionally used for asthma). For many patients, swallowed topical corticosteroids (fluticasone or budesonide) have led to EoE remission (improvement while on treatment), though their long-term use for maintenance treatment has not been studied. For some people on swallowed steroids, Candida (yeast infections of the mouth and esophagus) can be a side effect. Acid suppressors may also help symptoms in some patients with reflux. Oral viscous budesonide is currently in clinical trials for the treatment of eosinophilic esophagitis.
For other EGIDs
For patients with eosinophilic gastritis, gastroenteritis, enteritis and colitis systemic steroids, such as prednisone, may be needed to control the disease. Anti-inflammatory medications that are time released in specific parts of the small or large bowel may also be used. Your healthcare provider will determine the type of medication, amount and duration of treatment based on individual needs. Side effects from systemic steroids often limit long-term use. Not all types of eosinophilic diseases respond to the same treatment and different people with the same disease type may need very different medications.
Researchers are working on developing new medications to treat EoE and EGIDs. For more information on these research studies, and to see if you may be able to participate, please go to our Clinical Trials page.
EoE does not appear to limit life expectancy and there is currently no strong data suggesting EoE causes cancer of the esophagus. In some patients, EoE is complicated by the development of esophageal narrowing (strictures) which may cause food to lodge in the esophagus (impaction). It can also make eating very difficult and uncomfortable for children and adults. It is not clear how long EoE has to exist before strictures form. Typically, patients present with strictures in the older ages >6 years of age. However, since the natural history of EoE is only emerging, careful monitoring and long-term follow-up is advised. The initial diagnosis of EoE can be overwhelming and often affects the entire family. A positive attitude and a focus on non-food activities go a long way in learning to live with EoE. With proper treatment, individuals with EoE can lead a normal life.
Patients with EoE will require additional endoscopies to assess how the esophagus is responding to specific treatment. Physicians and scientists are working to discover other methods of monitoring and diagnosis. Novel medicines are also being tested that may help with future management of EoE.
For other EGIDs, the prognosis will depend on the patient’s response to treatment. Recurrent episodes can occur.
Frequently Asked Questions
by Dr. Philip E. Putnam, Cincinnati Children’s Hospital and Medical Center
“Is ok to include ‘unsafe’ foods in the diet periodically?”
There have been no formal studies to answer this question, so no one knows what amount and frequency of ingestion of a food that is known to cause esophagitis but not a severe immediate reaction might be permitted. My common sense approach has been to recommend strictly avoiding all known offending foods, because we don’t know if it’s safe.
More importantly, as a practical matter, it is hard to argue with a child whose non-adult/immature logic is, “Well, if I could eat it yesterday and it didn’t bother me, why can’t I eat it today?” If the answer is set, predictable, and consistently applied (i.e., “No, you can’t even try it once”), then the argument is avoided. We have seen many families wherein the parent loses control over the situation with one food, and then more foods as the child continues to test the limit again and again. Eventually, the esophagitis comes back and it is impossible to determine which food or foods might have been responsible, so there are few options other than to start over.
“Do most kids with eosinophilic esophagitis need a feeding tube to survive?”
No. In truth, a relatively small proportion of children who have EoE have a feeding tube. As with all diseases, there is very broad spectrum of disease severity and management possibilities under the rubric of EoE. As such, there are certainly some children who have EoE who undergo an elemental diet trial and who won’t take the amino acid-based formula orally. Those children have a feeding tube (either temporary nasogastric tube or gastrostomy tube) placed so that the formula can be delivered directly to the stomach. That avoids the child needing to taste the formula and assures that enough is administered to meet the child’s needs for growth and development. So, although it’s true for a small subset of children who have EoE, the word “most” is a gross exaggeration.
“Are most kids with EoE not able to eat enough foods to maintain adequate nutrition without formula?”
No. There is a small subset of children who have EoE who are highly allergic and who have not been able to advance their diet without a recurrence of EoE. The nutritional quality of the foods they are permitted is too limited to meet their needs for normal growth. As such, they remain dependent on the elemental formula to meet their nutritional requirements. The fraction of children who have this form of EoE is small, but they get a lot of attention and we work hard to find ways to improve their quality of life within the confines and limitations of their condition. The good news is that the vast majority of children who have EoE can be managed in a way that ultimately permits adequate oral nutrition without the continued use of an elemental formula or a feeding tube.
- Overview of feeding tubes
- Single ingredient cooking
- Extreme Cooking for Exceptional Diets - Cookbook available for purchase
- Eosinophilic colitis: epidemiology, clinical features, and current management (open access review article)
- Treatment of EGIDs
- Six-Food Elimination – Practical Tips
APFED’s Educational Webinar Series
- Support for those requiring enteral and parental nutrition – Oley Foundation
- Support for those living with feeding tubes – Feeding Tube Awareness Foundation
- Resource for those with limited diets: Celebrating the Holidays booklets from Kids with Food Allergies
© American Partnership for Eosinophilic Disorders 2008.
Updated 3-15-2013. Authors: Wendy Book MD, Harvey Leo MD