EGIDs - Caitlin, Erin and Eosinophils

Long-time Foods Matter subscribers will remember reading about two-year-old Samuel and his mum, Amanda. Sam had multiple gastrointestinal, skin and behavioural problems that were finally tracked down to an eosinophilic disorder - a condition that is now becoming more widely recognised. Caitlin Walker and Erin Chappell also suffer from eosinophilic disorders - and their mums, Kelly and Nicky have set up a charity,TEDS, to help other families cope with this truly horrendous condition.

Eosinophilic Gastrointestinal Diseases (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).

Patients with EGID, mainly children, 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 diarrhoea.

Caitlin could not tolerate breast or formula milk when she was born. By six weeks she had rashes all over her face and body, terrible sickness and diarrhoea, blood in her nappy, couldn’t sleep and cried constantly.

Our GP prescribed Wysoy with Gaviscon sachets with each feed, which helped for a couple of weeks, but by the time Caitlin was 12 weeks old, we were practically living in the hospital. We were emotionally crushed seeing our beautiful baby in pain and knew that we had to do everything we could to find out what was wrong.

Cows’ milk and soya allergy
A consultant diagnosed Caitlin with cows’ milk and soya allergies and recommended another milk substitute, Nutramigen, which helped for the next couple of months - but then we moved on to solids. Reaction after reaction made her so ill that if anyone sneezed near her she got an infection and we would be back at the hospital. She reacted to oral medications and ended up on intravenous antibiotics for a week. She had inhalers because of her breathing and then, following a full-blown reaction to paracetamol, we started to carry Epipens with us everywhere. We all suffered weeks of agony without any sign of a diagnosis.

Immune system collapse
In July 2005, Caitlin’s immune system was at an all-time low. She was reacting to everything, including the air around her. Her face was a complete scabby blister, the skin behind her ears was pouring with pus where it was split and infected, she was screaming all the time, wasn’t sleeping longer than an hour a night, losing weight and in a really bad state. Through Allergy UK, I met a mum in a similar situation. She told me about Neocate, another milk substitute available through the NHS.

Neocate - and diagnosis
I went to the hospital armed with information and a request for Neocate. I was told I didn’t know what I was talking about, and that Caitlin had impetigo. I camped out at the nurses’ station and, six hours later, was handed two tins of Neocate and then asked to leave the hospital without even being shown how to use it. Thank goodness I was able to turn to Allergy UK’s support service for help. After that we had amazingly fast results. For four months we got some sleep!

We finally decided to go private and saw a doctor at the Cromwell in London who diagnosed Caitlin with allergic enterocolitis as well as cow and soya milk allergies and multiple food protein intolerances.

Relapse - move forward
Caitlin had a total relapse at Christmas in 2005 after reacting to some chicken and we were back to square one. But since then, with the help of an excellent dietician at St Mary’s and a wonderful gastro-enterologist in London, we have finally been given answers and are moving forward.

Apart from multiple food protein intolerances, Caitlin is under investigation for acid reflux and has eczema and asthma. She has lotions and potions for her skin and inhalers for her breathing.

She has been provisionally diagnosed with eosinophilic colitis but this condition can only be confirmed through a biopsy. All the time she is stable and thriving we are reluctant to put her through this invasive procedure.

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First published in 2006

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