What are EGIDs?

EGIDs are caused by having too many Eosinophils, a type of white blood cell, in the Esophagus (Eosinophilic Esophagitis), in the stomach (Eosinophilic Gastritis), in the intestine (Eosinophilic Enteritis) and in the large intestine (Eosinophilic Colitis). Eosinophils do occur in small numbers naturally in everybody and they help fight infections caused by parasites and play a role in allergic response.  A normal range of eosinophils in the blood is between 0% and 5% of the total white blood count. Eosinophils are normally absent in the esophagus, and very low in the rest of the gastrointestinal (GI) tract. When there are too many eosinohphils, inflammation and tissue damage can occur.

Patients with EGID may experience a variety of symptoms including nausea, chest pain, heartburn, food impaction, poor appetite, difficulty swallowing, abdominal pain, weight loss, regurgitation, vomiting, inadequate weight gain, and diarrhea.

The effects of this disease can be huge.  Some patients (at the present time, mostly children) can manage their illness on a restricted diet, omitting just a few foods to handle their symptoms, but others have so many triggers to their illness that they are forced to omit vast numbers of foods from their diet, leaving out whole foods groups. Sometimes, patients can tolerate so few types of food that they need to receive an elemental formula, not unlike baby milk in its appearance. If they are unable to consume enough formula orally they are fed via tubes placed surgically in their stomachs or through their noses.  Many EGID patients also need medication to control the disease and these can range from antihistamines to steroids, some of which bring with them their own side effects.

EGID is not just a physical illness it is also an emotional one. Unless you live with this illness it is difficult to understand the emotional rollercoaster that patients and families find themselves on.  Symptoms can flare up by necessary medications for other common ailments (such as antibiotics) causing pain and suffering for the patient. Children have to live among their peers and families watching them eat while they sit with them (sometimes receiving their meals via a feeding tube). Imagine your own birthday party, but not being able to eat your cake with the other children. Children with EGID are different and the problems they face with the stigma of this illness, particularly when they have obvious signs of the illness such as feeding tubes, can be as difficult as dealing with the illness itself.  Other children's lack of understanding of the condition can mean a lack of empathy and even cruelty. 

Unfortunately the knowledge and treatment of this illness in the United Kingdom is severely lacking. Much of the advice and support and research into the disease happens in the United States. Diagnosis of this illness is a huge part of the battle as many family doctors are unaware of the disease and diagnosis can sometimes take years putting an immeasurable amount of stress on the family of the patient and can leave the patient suffering with debilitating and painful symptoms for a long time. Because the symptoms of EGID can mimic other illnesses, and can sometimes just be a natural part of growing up, patients often have to fight for their diagnosis as doctors are reluctant to perform the necessary tests to diagnose the disease (which can really only be diagnosed by taking biopsies of the gastrointestinal tract). Some doctors may not even consider EGIDs as possible diagnosis. Patients can be sent away with their parents being told that "it is nothing, they will grow out of it", they can be given incorrect (and potentially damaging) treatments through mis-diagnosis, and even told that the parents are "being neurotic, mentally unstable and even suffering from Munchausen's by Proxy" (and in these cases Social Services are sometimes involved).

We feel this cannot be allowed to continue and this is why TEDS has been formed.  We hope to offer advice and support to patients and families on their road to diagnosis and then dealing with the disease after diagnosis by offering practical advice on tips when dealing with the disease and emotional support at difficult times.  We aim to do this via our website (currently under construction),  help line and the introduction of local support groups.

At the present time we are working towards gaining charitable status to allow us to make a real impact on this illness by raising awareness of the disease, providing assistance to those families in need and hopefully funding research.  With the support from experts in the field of study.

With your help we can make a difference to this illness. As yet there is no cure for EGID but we live in hope everyday, and until that day comes with your help we can make a real difference to people living with Eosinophilic Gastrointestinal Disease.