The Child First and Always?

Last night we waited for the ITV programme on Great Ormond Street with trepidation. So many families I know feel violated all over again by the articles over on The Bureau of Investigative Journalism which although ground breaking in many respects fall short of holding the Gastro department at GOSH to account.  They - and we - have had to endure years of poor care/no care/false accusations whilst being kept in the dark about what was really happening at the hospital. For some it's cathartic that some of the truth is coming out at last, but for many it's opening old wounds.

Our thoughts?
It was a good start. We thought the documentary was quite clear the disease exists, but is rare. It covered the accusations of over diagnosis and over treatment simplistically but fell short of making it clear how desperate many families are for help by the time they get to GOSH. More concerning was that it also came across on the programme that it was clear cut this had occurred and that this was founded on an agreed definition of Eosinophilic Gastrointestinal Disease - EGID.

Anyone who has any experience of EGID will tell you there is no such thing.

A Post Fact Era

- or how Great Ormond Street Hospital for Children managed to avoid the factual information of their damning Investigative Review in 2015 from going public whilst parents took the blame.

So today, you have probably read The Guardian article on over diagnosis and over treatment of EGID at Great Ormond Street Hospital over the past seven years. Having been in the middle of this for all of those seven years, I can assure you there is MUCH more to the story. There is more info here, sadly the Syrian situation meant the Guardian article was cut down. It's STILL not the whole story though. 

Warning: This is super long. The events at Great Ormond Street over the past few years have left many of my friends and I reeling, collateral damage as the Gastro department attempted to extricate themselves from a hugely damning - and damaging, had it been made public - investigation by the Royal College of Paediatrics and Child Health. What followed their investigation in 2015 should make you angry. Very angry. This hospital persistently campaigns for charitable funding over and above any other hospital in the UK. Many departments are centres of excellence, but not Gastro. The RCPCH identified considerable failings, but in an attempt to restore order the proverbial baby went out with the bath water. Good doctors were scapegoated along with parents and the biggest losers of all were the patients. 

Children.

Our Story

We first went to GOSH at the end of July 2010. With a very strong family history of reflux and associated gastro issues, also seemingly non-associated non-gastro issues, we were desperate for answers.  As per our story here http://thereciperesource.blogspot.co.uk/2014/02/why-i-set-up-recipe-resource-long.html we were making progress on the reflux but struggling with motility issues, distension and a host of other issues.

We initially saw our new consultant privately, following an NHS referral from our local hospital being moved to another Consultant. (Our local paediatrician was keen for us to see this particular doctor because she had several patients under him and felt he was most expert on allergic gut conditions and would aim for the most normal approach possible, unlike some consultants at GOSH who were renown for pulling all food and imposing formula only diets when EGID or similar was suspected.)

Our consultant was quite thorough but very quickly fitted both twins into the allergic gut camp during our discussion. 

The photo below of our son’s hugely distended abdomen concerned him considerably. He later said he was concerned this was symptomatic of Pseudo Obstruction but in actual fact it was more connected with the 12 sachets a day of Movicol he had been prescribed locally for some time - something I had been concerned about. Movicol is the same plastic that is in disposable nappies. All parents have no doubt seen what happens when a toddler in a nappy sits in water.... it's a great drug for those with hard stool, but if your gut can't move loose stool, it certainly isn't going to do a great job of moving large volumes of loose stool...

We were prescribed medication - cetirizine daily, sodium chromoglycate and maintained our high dose of PPI medication (acid production suppressant) and were booked for review. Unfortunately our son’s motility issues were no better so he was booked for a gastroscopy and colonoscopy. This was no knee jerk reaction. Our son was going 2-3 weeks without passing stool then blocking the toilet, and was in huge discomfort. We were told that significant eosinophils per hpf were found throughout his bowel, in addition to lymphoid hyperplasia and he was diagnosed with Eosinophilic Enterocolitis. 

There was discussion as to whether Lymphoid Hyperplasia is EGID “waxing” or “waning”, and I actually asked how he knew eosinophils were intrinsically bad - or whether they in fact be part of the repair process? I know of many families for whom LH became the sole reason for diagnosis, and later many more who were diagnosed on symptoms alone. I suspect the desire to reduce invasive testing was the paramount concern for our consultant, but however well intentioned this meant some were perhaps labelled without supporting evidence. This should however be weighed against the merits of trialling treatments to produce resolution as quickly and easily as possible though with minimal discomfort and maximum gain for the patient. For this reason we never queried his assertion that our daughter was also an EGID patient.

Over the next few years our children never really became symptom free, although treatment DID mean they were better managed, growing properly and thriving.  

This should not be understated. Gt Ormond Street is not a local hospital. It's usually a place of last resort, where children with chronic or seriously acute problems go when no one else can help. Families are often desperate - like us - and grateful for help. It's also a place of novel and slightly unusual treatments, doctors are at the cutting edge of paediatric medicine and are always trying to push boundaries to help children. We embraced the plan - and the early results it brought.

Not waving, but drowning.

Both The Times and The Telegraph are today running stories on concern over middle class children being starved due to misplaced parental concern over food allergies. Clearly this article has been shared between both newspapers but what concerns me is the complete lack of medical advice or concrete information on the subject amongst the sweeping accusations made. Whilst loosely based on the collaborative report in Sense About Science  on Allergy, it's just another scaremongering article which belongs in the gutter press and helps no one. Indeed, the original report, whilst more balanced, still neglects to described the non IgE food allergies so many - including my family - suffer from.

I'm sure there is some genuine cause for concern, and it's true to say that more affluent parents are more likely to fall foul of the latest food fad since a)they have more money to spend on their children and therefore have greater choice and b) possibly more time to consider the options. (A child in my daughter's class is "allergic" to sandwiches, but eats cakes and biscuits with wheat in...) Certainly middle class tooth decay is no myth, as one comedian observed in his comment on raisins being "middle class crack for kids" our obsession with meeting the "Five a Day" guidelines led many to unwittingly feed their children frequent fruit snacks which were so full of sugar that the incidence of tooth decay soared amongst children of the better off.

The Gwyneth Paltrow's of this world do little to help, and the media should know better than to support the celeb drive for fashionable exclusion diets. Convinced that they "feel healthier" off wheat, gluten or whatever the latest craze is, they apply the same warped logic to their children, thus controlling their diet too. In a world where fast food is ubiquitous and many children are overweight- even obese - I can see they might find this attractive, but they would receive no medical support for this. Perhaps the media should focus their attention specifically on such a group, striving to enlighten and advise rather than tar all allergy parents with the same brush? The way to avoid indiscriminate attacks like today's articles is to write responsibly and include a little factual information at least somewhere in your piece - either that or write for the Daily Mirror...

I wrote here about Free From foods not being a Lifestyle choice - and for many they most certainly are not. Eating "freefrom" food is not a lifestyle choice for the vast majority who do so, it's a no-alternative, medically imposed way of life and to suggest otherwise is both ignorant and offensive. What is really crucial here, is explaining the difference between systemic IgE allergies, and non IgE allergies. They are both allergies, both involve the immune system and neither is an intolerance. Despite being detailed in the NICE guidelines of February 2011 most doctors are still ignorant of  Non IgE responses to food proteins, still confusing them with intolerances which involve sugars.

The difference is that non IgE patients don't risk their lives on a one-off encounter with a protein they react to. The reaction will be slower, possibly delayed and more insidious. You can read about it here but the main symptoms are likely to be as follows:-

IgE (systemic) allergy

non IgE (local) reaction

Most frustrating of all, YOU CANNOT TEST FOR NON-IGE ALLERGIES. So there might be no initial reaction, no "waving" - but the sufferer is still "drowning" - having an allergic reaction under the surface.

So I cannot prove to you, here and now, that my daughter reacts horribly to soya. But come and spend a couple of days with us and watch and THEN I can demonstrate to you how she suffers. Telling me she is not allergic because you watched her eat something with soya in and she didn't stop breathing is down to ignorance - not prejudice, and the media should act responsibly and add some degree of education in its articles to avoid perpetuating this awful situation. 

My kids have EGID - Eosinophilic Disease. If they eat food their body has a local reaction to then inflammation occurs in the gut. Basic bodily functions such as digestion, absorption and defecation don't happen as nature intended. And that's the VERY short version. EGID is a very unpleasant, poorly understood, emergent disease, with other unpleasant symptoms beyond the gut. It often goes with other disorders too, Hypermobility Syndrome, EDS and (as is increasingly noted) Autism. We have the full house here. For the EGID side of things we are dairy, soya, wheat, gluten free and on minimal egg, beef and other foods. One of my kids used to be tube fed and without a strict exclusion diet he was heading towards bowel surgery due to chronic inflammation and resultant nerve damage.. And we are the lucky ones - I know far too many children who cannot eat at all - some whom the media, in particular the Daily Mail - seek to advertise as rare and bizarre anomalies. Sadly their numbers are dramatically increasing.

For reasons unknown to current researchers and health professionals there is a cluster of cases of this formerly rare disease in the Home Counties and London, and again, for unknown reasons vitamin deficiencies often PRECEDE this condition. There is current research into Vitamin D levels and gut allergies, which needs further funding - which is going to be less likely when such drivel is written in the media. Less than 1% of ALL research funding goes on gastrointestinal conditions, NONE on paediatric gastrointestinal conditions - despite health professionals widely acknowledging that children with chronic gastrointestinal diseases having the poorest quality of life of all chronically sick children.

So whilst there might be some incidence of middle class over reaction to food allergies, just as you would not publish a thesis without some research and a decent evidence base, no health article should be based on hearsay either. The media needs to start exercising some responsibility for what they publish.  Articles like this trivialise serious conditions like Eosinophilic Disease instead of educate their readers on how to seek advice if they suspect their child has a problem with a certain food.  We need greater awareness (see here) with accurate information which would not only make misunderstanding less likely, but offer greater community to support to those really suffering.

Why we need a culture shift on medical research in children - for Eosinophilic Awareness Week

Yesterday BBC News reported that the Nuffield Council on Bioethics called for “a culture shift in medical research to make sure children can take part.”

I’m sure many would have the (understandable) knee jerk response that using children as guinea pigs isn’t top of their list for culture change, the more extreme response I heard on social media was that this group advocated using children as “lab rats”. Nothing could be further from the truth.

Most new medicines today are designed for adults, with adults as the target user group. Not only does this mean children are faced with fewer options for treatment but doctors have to guess the appropriate paediatric dose for these medicines. Worse still, fewer drugs are licensed for children - and only tertiary level care can prescribe drugs for children without a paediatric license, and then at their own risk. The licensed drugs are not necessarily safer just because they have been around a while either - medical research and knowledge moves fast, the older drugs often give an inferior form of treatment.

Perhaps most worrying is that children break down drugs at a different rate to adults so doctors are really basing their paediatric dose on guess work. The risks involved potential more than outweigh any considered risk of participating in research. You might think this only affects a small percentage of people - but you would be very wrong, and it’s something we are acutely aware of here.

Three of my children have Eosinophilic Gastrointestinal Disease, which as an “emergent disease” doesn’t have a clearly defined treatment protocol. Treatment usually comprises of symptom management and a few more risky options for the worst affected. For their reflux, all three are on proton pump inhibitors. At the maximum dose - and have been for YEARS. There is no license for that, no data for long term use in children, so we agonise regularly over the decision to keep them on these medicines. Then there are the pain medicines - the dosage difficult to titrate and resulting in neutropenia (low white blood cell count) and other health risks.

Next week is Eosinophilic Awareness Week, a debilitating condition involving non IgE allergic responses to food and environmental proteins, now thought to be autoimmune in nature. You can read about EGID here and on the FABED charity site here.

So this BBC news article was really relevant to us.

Gastro research is drastically UNDER FUNDED. It is not "glamorous" and rarely on the radar for celebrities and focus groups, and rarely attracts public interest unlike cardiac care and cancer research. Gastro conditions are badly neglected in the UK when it comes to research funding allocation but without research treatment and outcomes are not likely to improve much.

Approximately 1% of the total amount of medical research funding available in the UK can be accessed for Gastro research. There are currently no listed projects specifically for Eosinophilic Disorders on the National Research database. Gt Ormond Street Hospital have a Gastro Research Project that will include related conditions/problems and FABED is the main UK charity supporting families with members (adult and children) who suffer from eosinophilic disease.

FABED are also the UK partners supporting the United States Eosinophilic Awareness Week next week, coordinated by APFED. Two years ago they made this video to promote awareness. Read more about Eosinophilic Diseases here.

So next week, do something to raise awareness. Tell someone about EGID and the appalling lack of funding for gastrointestinal disorders in the UK. Discuss the ethics of testing drugs on children and don't make knee jerk responses to new reports. Because as Prof Modi said this week: "Of course decisions involving children are never easy, but this should not be an excuse for inaction; the danger of not developing the evidence base is far greater than the risks of recruiting young people to well-run, carefully regulated programmes."

Fabed from the Beginning - Guest Post

Unless you are new to the Recipe Resource, you will know that this week is EOSINOPHIL AWARENESS WEEK which is being co-hosted between 

APFED in the USA and FABED here in the UK. 

FABED is a wonderful charity which support those of us living with the confusing nightmare that is all too often EGID/ Simply put, EGID (Eosinophilic Gastrointestinal Disease) is an inflammatory condition thought possibly to be autoimmune. It involves the immune system, in a local response to food and environmental proteins. These ARE allergies, but like Coeliac Disease, Crohns or something like eczema it's a local reaction, not a systemic (whole body) response so you cannot test for these types of allergies. EGID can only be diagnosed by Biopsy.  

Here is the story of the wonderful Lucas family, dealing with multiple cases of EGID and how FABED was started.

FABED from the Beginning

Back in the olden days when Emma-Kate asked us to write a guest post for the excellent Recipe Resource (well it seems that long ago!), we said “No problem, will have it to you in a flash”.  Well it’s finally here, so as every one knows it’s now time to sit on the carpet in a circle, legs crossed and listen to the story... (or pour a large glass of something, you may need it by the end!)

FABED was conceived in 2005 and became into being in 2006.  It was the brainchild of 2 families (Lucas and Cordell), after visiting the APFED annual conference and leaving a little shell shocked.  As to the why we felt the need, it is important to understand the family story.  The Cordell family story that started the whole chain reaction is here, we have never really told ours, what follows is a VERY abridged version (honestly, this really is the short one) of the Lucas family WHY?

Eosinophilic Awareness Week 18th-24th May 2014

18th-24th May 2014 is Eosinophilic Awareness Week. Read about EGID here.

Gastro research is drastically UNDER FUNDED. It is not "glamorous" and rarely on the radar for celebrities and focus groups, and rarely attracts public interest unlike cardiac care and cancer research. Gastro conditions are badly neglected in the UK when it comes to research funding allocation but without research treatment and outcomes are not likely to improve much.

Approximately 1% of the total amount of medical research funding available in the UK can be accessed for Gastro research. There are currently no listed projects specifically for Eosinophilic Disorders on the National Research database. GOSH are running a Gastro Research Project that will include related conditions/problems.

Alarmingly, children with allergic gut conditions are reaching epidemic proportions according to GOSH as our Consultant there explains in this video (celebrating 100 years of Great Ormond Street Hospital, screened on Daybreak in Spring 2012) At 6min 17sec in he speaks about the significant problem this is becoming.

No one knows why the UK has the highest incidence for Allergy. I went to Westminster to attend the All Party Group for Allergy in October 2013 and heard how in the 19th Century, a study into Hay Fever took two decades as it was so rare and there were insufficient people to include in the study. Today it is incredibly common. The UK tops the league table in the incidence of allergy in its population, with Australia second - which is interesting as their population obviously share a similar root. Allergic gut conditions are becoming common and hugely problematic for NHS paediatric services and Eosinophilic Disease is a specific subset of this group.

FABED is the main UK charity supporting families with members (adult and children) who suffer from eosinophilic disease.

FABED are UK partners supporting the United States Eosinophilic Awareness Week. This is coordinated by APFED. Two years they made this video to promote awareness.

Read more about Eosinophilic Diseases here.

During Eosinophilic Awareness Week, do something to raise awareness. Tell someone about EGID and the appalling lack of funding for gastrointestinal disorders in the UK.

Free From Foods are NOT a Lifestyle Choice

I published this on my other Blog Musings of a 21st Century SAHM in response to an email received today.

In my inbox this morning was a request to complete a short and sweet questionnaire about "Free From" foods. Right I thought, I'm a bit of an expert on that one... should only take me a minute! So I duly clicked on the link... how long could it take?!

Well that depends on whether you find the questionnaire possible to complete in the first place, and whether it triggers a response like this or not :-

So why I am getting so hot under the collar about an innocuous set of questions? Well here they are:-

I'll tell you what my "attitude" towards them is; that they are an essential, vital form of sustenance for my children who would otherwise become very ill. Foods which are sold as if I should be grateful, which are often poor in nutritional content and high in price, which we cannot do without.

It wouldn't be so bad if the first option in question 2 was "Medical Necessity" - because after all, that is the main reason the "Free From" food industry exists, even if it has become something of a fad amongst many, and this growth in consumption of "dietary" foods has undoubtedly increased production, which benefits us all. However, if the main focus for it's existence is forgotten, short cuts will be taken and those with medical needs will be the first to miss out precisely because  - and hear we come to the crux of the argument - for us it's NOT a CHOICE! 

Eating "freefrom" food is not a lifestyle choice for the vast majority, it's a no-alternative, medically imposed way of life and to suggest otherwise is both ignorant and offensive.

So when faced with a questionnaire asking me to rate answers as to why I choose "free from" food in order of importance, seeing options such as "helps weight loss" and "they are lower calorie" makes me not a little cross!

Cooking with Neocate - Quiche revisited...

I've posted about our efforts with Quiche before both here and here. I've used two pie crust pastry recipes over the years, but we are now gluten free so I stick to the Juvela Harvest White mix recipe on the back of the boxes. It works well for us - BUT it isn't egg free.

Eggs serve to enrich a dough because of their fats. So anything with a certain amount of fat would work like condensed milk or extra butter or oil. However, keep in mind that though eggs are liquid when you add them to a recipe they change into a solid when they are heated. So if you are adding an ingredient such as milk or oil that does not solidify on heating, you must remember to add a little more flour to your recipe to act as a binder.

The other reason egg is used in pastry is to make it more malleable, you can use milk or water to replace egg but your pastry will not be as delicate as milk and water release the starch out of the flour and make it stretchy. So it will be perfectly edible but not as delicate.

It IS a dilemma, but given that THIS post is about quiche - or EGG PIE as we have to call it in this house - and given that quiche needs egg I'm going to gloss over this. Sorry. However, I do feel this a bit lame, and have tried backing an eggless quiche once. The Vegg can be used to make the filling and an eggless crust IS possible, just not as easy to work with. There is a list of egg substitutes here.

I would LOVE to see some of your egg free success stories, (especially the savoury ones) and will test and feature any I'm sent on the Recipe Resource.

Now for the Neocate part....

Why I set up the Recipe Resource. (The long version!!)

Inspired by Vicki's Guest Post for me, about her reasons for starting her Blog I realised I had never really given mine. So here they are - the long version...

The first few years of life are a time when most children gain weight and grow much more rapidly than they will later on, and the first year especially so. Having already had two babies with moderate reflux I expected our twins to suffer too, I felt I had “been there” and bought the proverbial T Shirt, even having two with reflux need not be too challenging, surely? How wrong can you be?!

Coeliac Disease and a “gut allergy” to Gluten. What’s the difference?

From our background of complex gut allergies/immune responses I find the topic of Coeliac Disease particularly interesting. People “get” Coeliac Disease. It might often be tricky and time consuming to diagnose, but it is well understood by many health professionals, has a set diagnostic criteria and is widely recognised. To the extent that a formal diagnosis will earn you gluten free foods on prescription.

The NHS Choices website says it is an autoimmune condition - which it is, and it is a type of Delayed Hypersensitivity, explained well on Wikipaedia here.

“Coeliac disease is what is known as an autoimmune condition. This is where the immune system – the body’s defence against infection – mistakenly attacks healthy tissue.
Coeliac disease isn't an allergy or an intolerance to gluten.
In cases of coeliac disease, the immune system mistakes substances found inside gluten as a threat to the body and attacks them.
This damages the surface of the small bowel (intestines), disrupting the body’s ability to absorb nutrients from food.
Exactly what causes the immune system to act in this way is still not entirely clear, although a combination of a person's genetic make-up and the environment appear to play a part."

NHS Choices

This is not so very different from EGID (Eosinophilic gastrointestinal disease) although the latter rarely receives half the understanding that Coeliac Disease does, despite being far more complex and overwhelming for the sufferer. And yet - and this is the bit which *really* puzzles me - just like Coeliac Disease, EGID is NOT an IgE allergy, NOT an intolerance, and is actually a delayed, Type IV hypersensitivity - a cell mediated response and currently thought to be autoimmune in nature also.

Gut Allergies - and why we NEED awareness and understanding

On the support forum I run and another I co run I am constantly writing the same replies to the same questions. Time and again the same questions come up - a child/baby with reflux who the doctors say they will "always" outgrow by 6 months fails to do so. Then 12 months comes, but weaning is problematic and the child appears to be reacting adversely to Cows Milk, Wheat and other foods. Tests are negative and parents are fobbed off and made to feel they are blowing symptoms out of proportion.

Many doctors perform allergy tests, for gut allergies which cannot be tested for, and then promptly dismiss the case because there is nothing for them to do. They may perform a pH study, previously the "Gold Standard" reflux test which cannot detect alkaline/allergic reflux or pressure changes in the bowel and possible allergic bowel inflammation is never picked up. Few hospitals can offer an impedance study, fewer still know how to interpret the results adequately. So because they don't have a clear answer many doctors are dismissive.
You would be horrified how often this happens, I hear about it all the time.

Some carry out endoscopies but stop above the stomach and the results are clear - so there must be "nothing really wrong". All too often the spotlight is then turned on the mother who "must" be neurotic, over-reporting symptoms, depressed perhaps? But lack of understanding or explanation is NEVER an excuse for being dismissive and accusatory. Ignorance does not excuse such actions - or have we not come so far from the Witch hunts of the seventeenth century? I have no explanation does not equal "someone is to blame". Even the most sympathetic doctors run out of ideas when tests come back clear.

I'm not sure what alarms me most - that there is still so little understanding amongst health professionals about gut allergies and their impact on the full length of the GI tract and elsewhere, or the stark truth that gut allergies in infants and children are occurring in epidemic proportions.

For us, we struggled for years with all of the above until we were referred to GOSH who FINALLY performed scopes below the stomach. Bingo. Serious bowel inflammation, duodenal ulcers and other damage. Everything above the stomach had looked near perfect, ph studies had been reasonably  acceptable... and skin prick tests negative for the most part. Dealing with an emergent disease like EGID, or symptoms which doctors have yet to put together and diagnose is a massively uphill slog, and unless you have the strength of Goliath, the stubbornness of Thatcher and the unwavering focus of Churchill you don't stand a chance.

But aside from all this the bigger question is 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 diagnoses 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.

Until then, I will continue to post the same answers, day after day, and share the information I have learned over the years, the information GOSH share through their APG Study Days for Parents and Professionals because until *everyone* understands what a gut allergy IS (and it is NOT an intolerance!!)  there is no hope of a consistent, helpful approach for parents in the nightmare that is feeding and caring for a child whose gut cannot perform the basic functions it was intended to AS it was intended to. And I, for one, cannot live without hope. My children and all the other children I know suffering with gut allergies and related diseases deserve better. FAR better.

May 19th-25th is Eosinophilic Awareness Week

Next Week is Eosinophilic Awareness Week. Read about EGID here.

Gastro research is drastically UNDER FUNDED. It is not "glamorous" and rarely on the radar for celebrities and focus groups, and rarely attracts public interest unlike cardiac care and cancer research. Gastro conditions are badly neglected in the UK when it comes to research funding allocation but without research treatment and outcomes are not likely to improve much.

Approximately 1% of the total amount of medical research funding available in the UK can be accessed for Gastro research. There are currently no listed projects specifically for Eosinophilic Disorders on the National Research database. GOSH are running a Gastro Research Project that will include related conditions/problems.

FABED is the main UK charity supporting families with members (adult and children) who suffer from eosinophilic disease.

FABED are UK partners supporting the United States Eosinophilic Awareness Week next week.This is coordinated by APFED. Last year they made this video to promote awareness.

Read more about Eosinophilic Diseases here.

Next week, do something to raise awareness. Tell someone about EGID and the appalling lack of funding for gastrointestinal disorders in the UK.

Raising Awareness for Eosinophilic Awareness Week

Healthy Eating - What it means for us

 The third week in May is Eosinophilic Awareness Week. Help raise awareness of food allergies, and their impact on young lives by considering sharing this child-friendly information with your child's school:-

"There are different types of food allergies. We have Eosinophilic Disease, when the body gets confused and thinks some foods are like germs and need attacking. The problem is this attack can end up hurting your body too! Eating those foods make your throat, tummy or bowel red and sore and stops them working properly. If you are not careful then things we all take for granted like eating, swallowing and digesting food don’t happen properly. Going to the toilet can be painful, take a long time and be really difficult.

Like any other food allergy you must stop eating the food your body is reacting to. Some people react in a quick, dangerous way to foods. This can be life threatening. Others react more slowly but the long term effect can be very serious. All our bodies like to be cared for, letting them get red, sore and swollen for long periods of time can damage them. Our bodies work best when they are properly cared for. We all try and look after our teeth by not eating too many sweets! If you have a food allergy you look after your body by avoiding those foods your body reacts to. Sometimes that means you cannot eat foods which have important things in them for growing. That can mean you need to find those important things in other foods, or in a special formula drink, and take medicines to keep healthy.

We all know someone who cannot eat nuts, or eggs, maybe both. Imagine not being able to eat anything made from milk, AND nothing made from wheat, gluten - which includes oats - OR soya. It’s hard. Getting enough energy is really important - we use a lot of it in school! So sometimes food you might think is less healthy is just right for us! Healthy Eating is really important. It is about looking after your body. But most of all it is about eating in a way to take care of your own body in the best way possible for you."