Living with Eosinophilic Disease – why non IgE responses need greater awareness

Just for a change as I’m sure you get bored with my voice on here all the time, here is a blog about Eosinophilic gastrointestinal disorder (EGID) which I have to confess to knowing very little about.

Here to entertain you today is Kate who writes The Recipe Resource blog and also attended the Houses of Parliament Allergy briefing which I spoke at earlier this month.

She shares my passion that more awareness is needed amongst the NHS about both IgE and non IgE mediated allergic responses; something which sadly is still very poorly understood amongst the medical profession.

She started her blog to support those catering for multiple food allergies, particularly in children. Her youngest children suffer from EGID (Eosinophilic Gastrointestinal Disease) which amongst other things manifests as reflux and constipation caused by food allergies. Providing a broad spread of alternatives not full of sugars, fillers or preservatives can be quite a challenge! It’s easy to find baby foods with few ingredients, and supermarkets stock a variety of adult “free from” foods, but children are sadly often neglected. You can find out more using the link below… and now, over to Kate.

So what is Eosinophilic gastrointestinal disease?

Eosinophilic disorders occur when eosinophils, a type of white blood cell, are found in above normal amounts in various parts of the body. When the body wants to attack a substance, such as an allergy-triggering food or airborne allergen, eosinophils respond by moving into the area and releasing a variety of toxins.

This is a Type 4 Hypersensitivity, or delayed hypersensitivity. Many people with EGID will not test positive in skin prick tests or RAST allergy tests because it is a localised, delayed response. It is still an immune response however and a true allergy! – See more at: http://thereciperesource.blogspot.co.uk/p/what-is-egid.html

Getting a diagnosis

We encountered the world of EGID via Gastroesophageal reflux disease (GORD) symptoms initially. My whole family on my Dad’s side had always suffered Gastro Oesophogeal Reflux to some extent (myself included) along with plenty of IgE allergies, autoimmune problems and supposed Irritable Bowel Syndrome (IBS). I became very involved in supporting other parents dealing with infant reflux, and became aware that whilst other people’s children seemed to outgrow their symptoms, ours waxed and waned, changed over time but certainly never went away.

In 2010 our 4 year old twins, who suffer most of all my children (I have 4, yes I’m a glutton for punishment!) were referred to Great Ormond Street Hospital (GOSH) and received diagnoses of EGID. It is highly likely that many family members suffer this inflammatory disease to some extent.

The average age for diagnosis of EGID is currently aged 5, which means that just like us, most families struggle to make sense of and cope with a whole spectrum of symptoms without recognition and understanding, feeling isolated and all too often facing speculation that they are fabricating so many symptoms because there is no easy answer.

For us we had severe reflux, Sandifer’s Syndrome, motility problems, reactions to food, swallowing difficulties and dangerous choking episodes, eczema, breathing problems and blue episodes, some IgE responses, developmental delays, Faltering Growth (FTT), night sweats, mouth ulcers, rashes, joint pains, hypermobility, mood swings/behaviour problems and poor temperature regulation, unhappy, screaming babies who never slept and a never ending round of feeding and clearing up. I was even told by one paediatrician, (in the middle of all this and after less than 30 minutes sleep) when the twins were around 9 months old that “Reflux in children who are not physically disabled always ends before their first birthday”. I wish!

But whilst a diagnosis was vindication of my sanity (at least in respect of the children’s medical issues!) it didn’t offer easy answers.

Suffering from what is still an emergent disease means frequently changing attitudes to symptoms and treatment (particularly between doctors and hospitals) is at best confusing and at worst pretty terrifying. As with IgE responses, symptoms can occur with the slightest exposure – if my daughter has the tiniest amount of gluten or soya she is unwell for weeks, with crippling abdominal pain, reflux with regurgitation and sometimes vomiting, constipation and abdominal distention so bad she looks pregnant. The responsibility of feeding a child who is so sensitive is huge, and she reacts to all dairy products, soya, wheat, gluten, some sugars and cannot safely swallow most meat due to swallowing difficulties resulting from years of reflux. And the sad reality with EGID is that whilst removal of the offending protein does improve symptoms, prolonged avoidance tends to make the next response more severe.

Her twin brother has bigger problems with motility, but having had fundoplication surgery years ago his reflux is much better than it was. But he spends considerable lengths of time on the toilet each day, often repeatedly in the night and suffers regular bouts of pain. He has also fallen prey to the “Allergic March” and developed Hay Fever, rhinitis and asthma as he has got older. As with other allergies gut allergies seem to run in families. Both my older children suffer a variety of allergies and gut symptoms as do I.

How do you treat EGID?

Treatment and advice is not universal – it varies between consultants and is frequently changing. Allergy medications, drugs that reduce histamine production in the gut and mast cell stabilisers like Nalcrom (sodium cromoglycate) are a first line of defence in treating EGID. Exclusion diets usually go hand in hand and for the most severely affected elemental feed is used as a substitute for food. This can be given temporarily or long term in severe cases. A tiny minority require parenteral feeding, via an access line directly into the heart which just goes to show the massive impact gut allergies have on a rare few.

Although EGID is an “emergent disease”, gut allergies are not new. NICE guidelines issued Feb 2011 set out advice for diagnosis and assessment of food allergy in children and young people, so you would be forgiven for thinking that over two and a half years later most healthcare professionals would have had sight of this document, given the alarming escalation of food allergy in the UK population as a whole, and more specifically in children. And yet far FAR too few doctors, nurses, Health Visitors and even Consultants are unfamiliar with delayed allergic reactions (particularly those in the gut) beyond Coeliac disease and Crohn’s. There is still frequent misunderstanding over where intolerances end and allergies begin and how a non-IgE allergy is even possible, let alone how it can impact on the human body.

How does this affect the Eosinophilic child?

My children feel “different” far too much of the time. They cannot eat school meals in a school whose policy is for the vast majority to subscribe.

They cannot eat food at parties and take a lunch box, they cannot eat out except on rare occasions, they take medication several times daily, have frequent hospital appointments and regular physiotherapy.

Holidays are infrequent and challenging, days out much the same.

Following a long, tearful discussion with my daughter during her school’s “Healthy Eating” Week about how chips really are important for her diet and are not intrinsically “bad” I wrote an explanation for other children for her to take in to school. Poor self esteem is as important for delayed allergies and IgE allergies. This year my daughter became so distressed she started pulling her hair and eyebrows out…

But aside from all this the bigger question is still being neglected – WHY are SO many children suffering severe gut allergies? Why does our youngest generation suffer food protein allergies on epidemic proportions? Because seriously, that’s what we are looking at here.

At the twins’ school, six children have a diagnosis of EGID now. SIX. And of those I have helped support on forums over the years, friends I have made, I know about 50 children with gut allergies impacting seriously on their lives. Our Consultant at GOSH asked my daughter and I to appear on TV for the 100th Anniversary of GOSH to spotlight the Gastro department and highlight the escalating number of children suffering from gut allergies. He used the word epidemic then, and it was no exaggeration.

But it seems no one is doing the Maths, taking the data and analysing it. No one is sending out the information and any new results to local hospitals, explaining how gut allergies work, sharing new knowledge. Our NHS is functioning in crisis mode and only dealing with the here and no, the in-my-face-and-un-ignorable crisis/case I have to address. But at some point, SOMEONE or some group is going to HAVE to address this massive issue and start looking at why our children cannot eat. At why their digestive systems are no longer happy in the twenty first century first-world environment we are bringing them up in. I would like to hope that in the not so very distant future non IgE allergies have the recognition and care IgE allergies currently have, although a more holistic approach to both would be better!

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Thank you Kate for sharing a heartfelt life story of EGID in just one small family. Has anyone else reading this got experiences or a diagnosis of EGID? How do you cope? How long did it take you to get a diagnosis? How can we make things better for the future generations?