Slow hand clap to the Food Standards Agency...

You know that popular meme of someone staring at a computer late into the night? Can't go to bed because "someone is wrong on the internet"? Quite appropriate..... except it's not bedtime and I *should* be focussing on the kids' homework, the child who is on the loo (he won't be going anywhere for around 45 minutes though, but then that's non IgE allergies for you...) and the fact that after the week I've had it really *is* Wine O'Clock and this could wait.

Except it can't.      

Myself and many, many others, from Fabed, National Allergy Strategy Group, Adam Fox and his team of paediatric Allergists and Allergy nurses, based at St Thomas's hospital, numerous paediatric gastroenterologists here and abroad plus parents dealing with the reality of life with non IgE food allergies have spent years campaigning to increase awareness and understanding amongst health professionals, teachers and communities that food allergy is not confined to an acute IgE episode. 

I wrote about the desperate need for increased awareness here . You would be *stunned* to know how many parents I know who have encountered health professionals who still simply do not understand how delayed allergic responses work, what FPIES and EGID are, or how cell mediated gut allergic responses cannot be tested for. The numbers of families damaged by poor or indifferent care, or those with little support for children at school, and even those hounded by Social Services because community professionals just don't "get" non Ige allergies. I've attended meetings for the All Party Group on Allergy before, and there are increasing numbers of people appreciating these issues - then the FSA railroads over all recent work in one ridiculous picture.

Yup, they've attempted to differentiate between food allergies and intolerances by reaction time, not even mentioning non IgE allergies. There is so much wrong with this I scarcely know where to start. Their sole defence is that they are trying to "simplify" things. But that's like listing a simplified list of political parties in Britain as Labour and the Conservatives. It's not simple, it's simply WRONG. it helps no one and subtley erodes the hard-won gains made by those of us trying to bring hope for our children.

If my daughter has half a slice of gluten free bread with egg in she becomes unwell several hours later and the response lasts days. If she has the tiniest amount of soya the entire response process which includes soiling and bleeding lasts up to a month. Just where on that chart would she fit? Or her twin brother who has long term bowel damage from non IgE symptoms and narrowly escaped surgical intervention years ago, whose non IgE allergic gut reaction to wheat in particular accumulates over days and weeks.

This isn't a simplified chart, it's an exclusive one, which excludes a significant proportion of those with food allergies. 

We have to contend with the media spouting about the middle class disease that is food allergies, who never stop to think of the opportunity such an editorial presents for education, for explanation and enlightenment. I've contributed myself as a lay person to publications on allergy, which fail to accurately detail non IgE food allergies. Yet still the ignorance persists.

It's not even particularly new information. The National Institute for Clinical Excellence (NICE) has had their own chart since February 2011, which is here. THEIR chart is reproduced below. It's a bit small, but that's because you just cannot over simplify this, at least not in the way the FSA are attempting to.

So what *are* non-IgE Allergies?

Non IgE food allergies DO involve the immune system, but locally, in the gut. It is a cell mediated response rather than a systemic, whole body reaction. It isn't immediately life threatening, but the long term impact ca be significant. t is a local reaction and is rarely possible to test for. Gut allergies are often delayed, which is why food allergies are so traumatic and difficult to manage, requiring strict exclusion diets to determine responses to possible triggers. Imagine an eczema reaction in the gut - it's a localised response to an allergen (or a false allergen which the body responds inappropriately to) and causes a localised problem - no anaphylaxis, no outside response (although IgE responses are often present in addition in those with gut allergies) and is very difficult to diagnose. Wikipedia actually explains this very well here . Like I said, it isn't new, and there is NO excuse for the FSA being so slapdash.

So my advice to them is to get with the programme. Work IN the 21st Century, add a third column and revise your information. Or delete it completely, because quite honestly, you've just shown yourself to be out of date, out of touch and under-informed. Unfortunately though, that picture has probably done more damage than the impact its had on your reputation.  

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ePetition to improve frontline care for those suffering from reflux and allergies

Readers of this Blog old and new will know only too well how poor the diagnosis and care of children with food allergy often is. We lag well behind other Western countries in our diagnosis and care of those suffering from allergies, and this is particularly shocking when you learn that the UK has the highest incidence of allergy in the world. Yes - in the WORLD.

Our rates of allergy - reported AND diagnosed/confirmed are soaring, particularly the rate of non IgE allergy. In babies and young children this often manifests as allergic gut with symptoms such as reflux and or motility problems. In the nearly seventeen years since I have been a parent of a child with such health problems there has been frighteningly little progress. 

(I have written about my reasons for setting this Blog up here. )

And what is MORE alarming is that when under-informed front line health professional blame the parents - or more often the mother. It is three and a half years since NICE published their extensive guidelines for Diagnosing and Treating Babies and Children with Allergy - and they clearly set out likely non IgE allergy symptoms - and contrast these with intolerances which are very different. Yet STILL our NHS is stuck in the Dark Ages and resources are misdirected.

 If you want to clue yourself up about the differences read this.

My children have multiple consultants when one Paediatric Allergist would most likely replace almost all of them. But the system prefers to crisis mange symptoms depending on their location in the body, rather than the underlying cause. Small wonder there is little funding left! 

Too many times I hear of families who are wrongly informed by so called professionals that their child cannot have a food allergy because skin prick tests are negative - this is incorrect, and yet it persists. 

Last Autumn I attended the All Party Group for Allergy at Westminster and heard more depressing statistics and how very far we have to go. But to my mind THE most important thing is that front line health professionals - Health Visitors, GPs etc have at least READ what is NOT new information. Is that really too much to ask??

Please, please sign this petition to help, too many mothers are blamed for symptoms their babies suffer because those they seek to ask for help fail them.

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!

Alpro Soya "Nut-gate"

The Interwebs are currently buzzing with the news that Alpro Soya are now printing warnings of potential hazelnut and almond contamination in their soya products as they are altering sites for production of their dairy free alternative milks. Understandably, there is an outcry as many who avoid dairy products choose soya as their dairy substitute and are also allergic to nuts. Alpro responded to concerns on the Allergy UK website. Certainly their measures sound as stringent as anything any parent of an allergic child can achieve by any other means but there are always those who will be affected. This is a production choice Alpro have made and they may indeed lose customers because of it. However, I sincerely believe the bigger issue is being ignored here.

In an increasingly allergic world there are as many combinations of allergies in individuals as there are allergic people. And any reliance on only one substitute can precipitate issues including new allergic responses. The reliance of the dairy free industry on soya is not a long term option, far too many people have IgE and non IgE responses to Soya - and it is one of the "Big Four" to avoid  according to many health professionals. Certainly Gt Ormond Street Hospital advise going "MEWS free" as an important first step when embarking on exclusion diets. (MEWS = Milk, egg, wheat and soy)

Undoubtedly Allergic Disease is almost epidemic at present with the UK topping the world table of incidence of allergic disease. More about that here, information learned when I attended the All Party Group for Allergy at Westminster this Autumn. We should not be complacent in our careful replacement of major allergens from our own or (especially not) from our children's diets. Fortification of alternatives (e.g. calcium and Vitamin D in milk alternatives) is essential, as is careful pricing of worthwhile products, support for new producers and accurate information for consumers. The fact that yet another producer appears to have caved to the litigation-prevention soft option is not good news. It seems a massive fob-off for those shopping for exclusion diets - avoiding the issue of careful checking and stringent manufacturing processes. Or does it?

My Guest Post on WhatAllergy?

Ruth at WhatAllergy? has kindly invited to me to write a guest post on her Blog.

What Allergy is one of the Top 5 Allergy Blogs and I am thrilled to have been asked to contribute. Packed with over 400 articles about living with multiple food allergies, intolerances, eating out, gluten free, coeliac disease, eczema and a whole lot more it really is a mine of information.

The All Party Group for Allergy meeting 16th October 2013

Yesterday I attended a Meeting to discuss Allergy at the Houses of Parliament. It was a collaboration between the All Party Parliamentary Group for Allergy and the Parliamentary Office of Science and Technology  supported by Allergy UK. The meeting was to discuss progress in Allergy in the UK since the Lords' report of 2007. (More details here.)

Dr Adam Fox (Joint Clinical Lead for Allergy, Consultant & Reader in Paediatric Allergy Guy's & St Thomas' Hospitals ) explained how whilst Allergy is not new, its incidence amongst the population is increasing exponentially. Whilst it was a rare phenomenon when described in the early Nineteenth Century this is sadly no longer the case -with the incidence of allergic disease higher in the UK than any other country in the world. There has been considerable progress in joining up care improving transition from paediatric to adult services, and in beginning to address equality of availability and access to services across the country but there is still a long way to go. GPs are not trained to support allergic patients and too often symptoms are partitioned and dealt with singly rather than a holistic approach with specialist allergy care at the centre. There are only 20 specialist Paediatric Allergists in the UK at present, and only 28 Adult Allergy Specialists. Many US cities boast far more.

Recent NICE guidelines have been issued (Feb 2011) to advise on diagnosis and assessment of food allergy in children and young people which, if taken up would greatly improve the situation of many, many children and young people across the country. However, as GP Dr Matthew Doyle reminded everyone, GPs receive many new guidance documents on a weekly basis

Unfortunately there was little time for meaningful questions and I was unable to publicly ask the burning question I had nurtured all afternoon-

"What is being done to address the relative lack of progress in both awareness and understanding of delayed non IgE allergic reactions amongst the medical professionals?"

Because all too often I encounter ignorance about delayed reactions - the assumption that if it isn't an IgE response, cannot be tested for it isn't an allergy. There is considerable research into cell mediated responses and they are detailed extremely clearly in the NICE guidelines - yet they are unread, ignored or rubbished.

It's a great document. I recommend anyone dealing with delayed gut reactions in particular - which include EGID, Ulcerative colitis, Chrohn's, Coeliac disease, allergic gut disease, multiple food intolerances to read it.

I was also lucky enough to hear Ruth Holroyd speak, from What Allergy? What Allergy? was voted in the Top 5 UK allergy blogs by Cision UK and regularly gets 2000+ unique visits a day with some blog posts getting hundreds of comments each.