Continued from Part 1 ...

Recurrence
EGIDs are chronic, although patients’ state may fluctuate: sometimes they are stable and other times not. A recurrence is defined as the reappearance of symptoms and eosinophils in a patient who was previously stable, with a restricted diet under control and no eosinophilic infiltration apparent in the affected area of the gastrointestinal tract. When this occurs, the cause, or new allergens, must be identified and eliminated. In a patient who is unable to resolve the presentation of symptoms the disease is considered persistent.

Treatment
Because EGIDs affect the gastrointestinal system, but are typically mediated by allergy, they are dually managed by an allergist and a gastroenterologist. The general treatment for EGIDs is removing the offending foods from one’s diet.

Frequently the challenge is figuring out what the offending foods are. Skin prick tests are a fairly common method used to identify allergens. Many people don’t have an immediate reaction to an allergen, and don’t test positive with skin prick testing (SPT). Some eosinophilic research centers in the US are now using atopy patch testing (APT). APT was initially used in Europe for patients with eczema. Spergel et al (Allergy Asthma Immunology 2005; 95:336-343) found that 77% of EE patients improved after six weeks on a restricted diet when patch testing was used in conjunction with SPT to determine what the allergens were. Despite this favourable response, Dr Liacouras explained that patch testing is not reliable, in part because it is not standardised, so the results differ from location to location. The testing is conducted by mixing commercially available food product (milk, dried whole egg powder, tomato, corn, etc) with saline to make a paste. After mixing, the food paste is applied to the skin of the upper back and removed and scored between 48 to 72 hours.

Allergen prevalence
The children in Assa’ad et al’s 2007 study had as many as 62 food allergens and 11 indoor and outdoor environmental allergens, as identified by SPTs. With so many potential allergens, trial and error is not a realistic method to figure out the problematic foods. It is hoped that in three to five years APT will be commercially manufactured so that its results will be consistent and it can be widely used.

While some people with EGIDs have many allergens, others may have only one or two. If testing is not conclusive, other methods to identify the allergens are needed. One such method is an elimination diet, where the patient’s food intake is limited to five or six foods. Very gradually, one food at a time is introduced. After each food introduction the patient is scoped, to check for eosinophils. Depending on the number of determined allergens, a patient’s diet may be severely restricted and he may have a difficult time getting a nutritionally balanced diet, or enough calories. Amino-acid based formulas like Neocate or Elecare may be taken to supplement the diet or be used as a sole source of nutrition. Since these formulas are not very palatable a feeding tube is sometimes surgically implanted into the stomach and the formula directly ingested.

Drug treatment
While currently no medication completely resolves the symptoms of EGIDs, some drugs do help. Antacids and proton pump inhibitors that treat GERD alleviate some symptoms. Systemic (prednisone) and topical (inhaled through a metered dose) corticosteroids have resolved acute symptoms of EE, but when the medication is discontinued the disease’s signs return. (Gastroenterology, 2007)

Jack, now a charming 12 year old boy, is an articulate and animated speaker. During the interview for this article he conveyed a positive outlook toward the bi-monthly endoscopies. Jack is clearly a partner in the team made up of his family and physicians. He is currently on a trial of an intranasal corticosteroid; he’ll be scoped again to determine if the medication alleviated his symptoms presumably caused by environmental allergens. After the medication’s effectiveness is determined, a food challenge is planned: apples. Six to eight weeks eating apples and he’ll be scoped again.

Support
The emotional toll of EGIDs on a patient and his or her family is great. It is tough for someone to manage one or two food allergies. Challenges increase with each additional forbidden food. Creativity in the kitchen is a must, as is support from friends and family. Fortunately, today there are support groups, chat rooms and a gradual increase in awareness.

Beth Mays knows how important support and awareness are. When her son, Charlie, was diagnosed with EG his doctor told her there was nothing credible to be gained from consulting the Internet. Beth took the challenge and in 2001 she founded the American Partnership for Eosinophilic Disorders (APFED).

Now with 875 members from more than 10 countries, the organisation provides accurate information to members, advocates for education and awareness of EGIDs, and raises money for research. APFED’s website receives 1,500 hits a day and its 400 pages translate into 14 languages.

APFED successfully sought legislation to declare the third week of May National Eosinophilic Awareness Week in the USA. The group was the driving force behind the currently pending proposal in the United States to develop unique ICD-9 codes for EGIDs. Dedicated ICD-9 codes allow physicians to standardise patient diagnosis. This infor- mation greatly enhances re searchers ability to classify, track and report patients with EGIDs, and consequently to develop new treatments and improve awareness.

Research
Disbelief that there was no cure for the disease that was affecting her daughter, Ellyn Kodroff was driven to establish the Campaign Urging Research for Eosinophilic Diseases (CURED) in 2004. CURED recently raised over $600,000 USD, all earmarked for research. Cincinnati Children's Hospital Medical Center, a recipient of some of these funds, will pursue the identification of eosinophilic markers in the digestive system; their goal is to support diagnosis via blood work instead of an endoscopy.

Dr Liacouras said that researchers continue to explore whether those with eosinophilic disorders are predisposed genetically, if there is a trigger that causes the disorder to kick into gear or if people are born with the disease. The disease’s progression is also being explored, including tissue changes such as fibrosis (scar tissue formation). Medications to treat the effects, such as anti-IL5, are also on the horizon. Researchers in Australia have been involved with clinical research for several years, and in Italy, Spain and England they are just starting to get interested. With growing interest in EGID, those on the forefront of the disease are optimistic that the research and increased awareness will yield positive results.

Support groups

APFED - Support, awareness, education, research, chat room
www.apfed.org

CURED - Research and awareness
www.curedfoundation.org

FABED - Support, awareness, chat room for families in the UK
www.fabed.co.uk

First published in 2008

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