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Table of Contents
What are eosinophil- associated gastrointestinal disorders (EGID)?
What is an Eosinophil?
What is Eosinophilic Esophagitis?
What are the Symptoms of EGID?
Diagnosis?
Treatment?
  
Dietary Therapy
       Restricted diets
       Elemental diets
       Feeding tubes
  
Medication
Living with EE and EGID (Adults)
How will EGID Affect my Life? (Children)

Resources for Healthcare Professionals and Consumers
Recipes - Extreme Cooking for Extreme Diets, APFED recipe book
"Celebrating the Holidays" Courtesy of Kids With Food Allergies
Frequently Asked Questions

April 2008 Patient Power replay with Dr. Furuta


About Eosinophil-associated Gastrointestinal Disorders (EGID)

What is EGID?

A growing number of children and adults suffer from a chronic and complex group of disorders described as Eosinophilic (ee-oh-sin-oh-fill-ick) Gastrointestinal Disorders (EGID). These disorders are characterized by having above normal amounts of eosinophils, a type of white blood cell, in one or more specific places anywhere in the digestive system. EGID is further subdivided into organ-specific diagnosis. For example, Eosinophilic Gastritis means eosinophils infiltrating the stomach. "itis" means inflammation. While visual inflammation is not always present, inflammation may be apparent under the microscope.

Eosinophilic Esophagitis (EE): high numbers of eosinophils occurring in the esophagus.    Learn more: Eosinophilic Esophagitis

Eosinophilic Gastritis (EG): high numbers of eosinophils in the stomach.
Eosinophilic Gastroenteritis (EGE): affects the stomach and small intestine.
Eosinophilic Colitis (EC): describes the occurrence of high numbers of eosinophils in the large intestine.

Above normal amounts of eosinophils within the digestive system may or may not be enough to diagnose a person with an EGID; what the eosinophils are doing while present is equally important. Currently, without a standardization of diagnostic criteria, medical institutions use different variations of the same criteria including: inflammation, numbers and activity of eosinophils, and symptoms.

The increased numbers of eosinophils present does not always indicate EGID.  Other inflammatory cells and other inflammatory changes that include eosinophils, but which are not exclusively eosinophilic, are common in other inflammatory diseases such as Crohn's disease and ulcerative colitis.

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What is an Eosinophil?
Eosinophils (ee-oh-sin-oh-fillz) are a type of white blood cell (WBC). Eosinophils are the least common of the white blood cells and comprise approximately 1-4% of the blood’s cellular make-up. Named after “Eos” the Greek goddess of dawn, eosinophils are characterized by their bright red-pink color and double nucleus when stained and viewed under the microscope. Eosinophils are most commonly associated with allergic diseases and parasite infections. Learn more: What is an Eosinophil.pdf

What are the Symptoms of EGID?
Symptoms vary widely, depending on the area affected.
Symptoms include:
• Nausea or Vomiting
• Diarrhea
• Failure to thrive (poor growth or weight loss)
• Abdominal or chest pain
• Reflux that does not respond to usual therapy (which includes 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)
• Bloating
• Anemia
• Blood in the stool
• Malnutrition
• Difficulty sleeping

Since none of these symptoms are specific for EGID, and many occur at times in healthy children or adults, the diagnosis is generally sought only after the symptoms have failed to resolve. Eosinophilic disorders can mimic the symptoms of other diseases like inflammatory bowel disease, food allergies, irritable bowel syndrome and reflux, among others.

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How are Eosinophil-associated GI disorders Diagnosed?
Endoscopy and biopsy is the ONLY way to confirm the diagnosis of EGID.
During an endoscopy, the gastroenterologist looks at the GI tract through an endoscope and takes multiple small samples (biopsies) which the pathologist reviews. A high number of eosinophils (counted per high power field) suggest the diagnosis of EGID. The pathologist will also look for the location of the eosinophils, changes in the tissue layers, and degranulation (spilling of the contents of the eosinophils). Eosinophils may be normally found in small numbers in all areas of the GI tract except the esophagus. GERD (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 on medication for reflux.

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 Radioallergosorbent test (RAST).

View Images of Upper and Lower Endoscopy
Learn more: EGID Diagnosis

Can EGID be Cured?
There is no "cure" for EGID, but treatment can help alleviate symptoms and prevent further damage to the gastrointestinal (GI) tract. Treatment of eosinophilic disorders will vary based on the location of the eosinophils, severity of symptoms, and other medical problems the child/adult may have. In most cases, dietary measures and medications can significantly improve problems related to the underlying eosinophilic disease. Your doctor will help guide you through the various treatment options to find a therapy that is best for you and your family. Learn more: Treatment of Eosinophilic esophagitis, gastroenteritis and colitis

Treatment options include:
• Restricted or "elimination" diets Learn more: Restricted Diets.pdf
• Elemental diets Learn more: Elemental Diets
• Medications

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Dietary Therapy
Food allergy testing is used as a guide for an "Elimination" diet. An elimination diet means strictly avoiding all foods to which the patient has tested positive on allergy testing. Skin and patch testing are used to guide elimination diets, but it only takes one false negative food for the diet to "fail".

Single ingredient cooking for food trials.pdf

Recipes for restricted diets (coming soon)

Sometimes a stricter diet – an elemental diet – is needed. Skin and patch testing are used to guide elimination diets, but it only takes one false negative food for the diet to "fail". Elemental diet means No protein, either in its whole or incomplete (pre-digested or hydrolyzed) form is allowed. Special 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.

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. To maintain proper nutrition, some require tube feedings directly into the stomach (enteral feeds). In the most severe cases, nutrition is administered directly into the blood stream (parenteral feeds).

Learn More: Sticking with an elemental diet
 
Learn more: Living with Feeding Tubes.pdf

View an Illustration of an NG Tube

Medication
There are no medications to ‘cure’ eosinophilic disorders. Medication may suppress eosinophils in the gastrointestinal tract and relieve symptoms of the disease. Steroids are most commonly used in conjunction with dietary management. Steroids can be given topically (spray that is swallowed), by mouth, through a feeding tube or through an intravenous line. Your healthcare provider will determine the type of steroid, amount and duration of treatment based on individual needs. Side effects from steroids often limit long-term use. Aside from diet and steroid treatment, there is no "magic bullet" available to treat eosinophilic disorders. Not all types of eosinophilic diseases respond to the same treatment and different people with the same disease type may need very different medications. Learn more: Treatment of Eosinophilic esophagitis, gastroenteritis and colitis

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How will EGID Affect my Life?
The diagnosis of an eosinophilic disorder is life-altering. Beyond the debilitating physical symptoms, those afflicted often suffer social and emotional scars by living in a society that focuses on food. A positive attitude and a focus on non-food activities go a long way in learning to live with these disorders.

Adults with EGID face unique issues associated with employment, inter-personal relationships, insurance, medical care and family. Holidays, parties and family gatherings are often food-focused, particularly for adults. There is no need to miss out on holiday and other celebrations. Attend anyway, and engage in cheerful conversation!

Learn more: Adult FAQ.pdf
Learn more: Adult Insurance Issues.pdf
Learn more: Guide to Celebrating Without Food.pdf

The challenges
Children with EGID face depend on the severity of illness, treatment, and dietary restrictions. Some children with eosinophilic esophagitis do well with elimination of a few foods from their diet.  Staying involved in your child’s school is important.

Tips for restricted diets at school

§          Plan ahead when possible to ‘match’ food served at birthday parties and snack time with a ‘safe’ version.

§          Be sure your child has a stash of ‘safe’ foods or stickers in the classroom for unexpected parties.

§          While educating teachers and school administrators about your child’s restriction is important, even small children can remember to only accept ‘safe’ foods from a known source (parent, guardian).

Other, more severely affected children, face the additional challenge of managing chronic illness while in school. Missed school days, holidays parties, feeding pumps and the feeling of isolation complicate what should otherwise be a care-free childhood. Children often reflect parental attitude about their illness and limitations. Readjusting attitude towards food is a very important first step. Food is simply nutrition, whether formula through a tube or a severely restricted diet.

Some suggestions to help your child adjust:
• Focus on what your child CAN do.
• Encourage your child to pursue non-food related interests and hobbies.
• Stay involved in your child’s school.  Participate in planning holiday celebrations.
• Plan creative fun birthday parties.

Learn more about school issues:
Guide to Celebrating Without Food.pdf
IEP/504 Plans.pdf
Post-Secondary School.pdf
Student Health Forms.pdf
Health Information Sheet, Patient.pdf
Guide for Students with Chronic Illness.pdf

No-food Birthday cakes.pdf

Resources for Healthcare Professionals and Consumers
Reading List for Healthcare Professionals.pdf
Link to Clinical Trials page.

 

Revised 4-1-06
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