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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It's been a while... #FewFoodDiet

I've been really slack about updating - but the truth is, this is HARD. Really hard. Not being a stranger to exclusion diets I knew it would be, but nothing prepares you for the reality that is an indignant, stroppy tweenager who understandably wants to be like her friends and is facing a *much* longer term than expected of a very limited diet.

We've made progress, mostly by sensible planned means - but I confess in absolute desperation we tried some BFree rolls before every ingredient had been tested and thankfully, these are ok. This success not only brought a bumper set of accepted foods but a real possibility of a school packed lunch! This is not to be sniffed at, in a school where packed lunches are not permitted, she really will be the *only* child having one, and if it's as near normal as possible that matters. A lot.

We've done well with carbs. Protein - not so much. And she's now completely refusing every possible (sneaky) attempt to get chickpea into her diet as it's now "revolting". This is a stage all parents face on similar exclusion diets, the child is understandably feeling utterly out of control and I completely understand why she needs to do this. She's telling me that whilst she accepts the restrictions imposed by her medical team, she still calls the shots. Her body - her rules.

This, in my opinion, is vitally important to appreciate. We couldn't have embarked on this without her consent. Giving a degree of control, where appropriate really helps though - for example, blood tests really panic her, causing a rapid escalation into anxiety which she can barely cope with. So we've now adopted the policy that she has control, she makes the choices, but she needs to understand why they are necessary. On the whole it works too. She tells the doctor or nurse where they are allowed to put the needle (hand, arm etc) and whether she has cream, spray or nothing. Within reason she has the right to refuse too - although she hasn't yet, because she's in control and is actually pretty sensible for a ten year old.

So we've also followed her list of priorities for food introductions too, which sadly hasn't included much protein! We've made pancakes (above) using a pot of pear puree instead of egg, my fruit, cashew and seed bites  with a few alterations and she's done a fair bit of experimenting too. She enjoys the BFree pittas with lettuce, sweetcorn and carrot chopped inside, with some Violife cheese in. I just wish there was some protein in it!

On the (hugely) positive side, when she's not reacting to new foods, I have a daughter who barely refluxes. Seriously. Hardly at ALL. After 10 1/2 years of moderate to severe reflux this is life changing - and if the unpleasant bowel and urinary symptoms are indeed delayed and related, we could be looking at one seriously healthy and happy young girl.

Which makes it all worthwhile.

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.

Facebook Group Recipe Round-up

The members of our Facebook group are soon going to put me out of a job.... we've had some inspirational cooking with very few ingredients showcased on there this week.


Here a just a few of them!





Chicken Pop Corn Kebabs

• Cooked chicken breast, cooked mashed sweet potato, dash of oil and a little water if needed. 
• Bind all ingredients together in a bowl with maize meal (polenta). 
• Season if allowed and then divide into balls and pop on a baking tray, keep checking and turning. (Not an exact science as to when done. Just check and check.)
• Once crispy and firm take out. I bought cake pop sticks and put 3 on each (like a kebab). 
• Eat hot and cold.

Gingerbread Reindeer

Using a slightly different recipe to mine - (from the Glutafin site) one member made her own gingerbread reindeer. It's really simple, you can read more here.

I love the glass cherries for the red noses!

Lollies - Coming Soon!!!

Last but not least, I take my hat off to the person who made lollies on sticks from sugar alone, and wrapped them to look like store bought lollies! A real treat. For children who can only eat homemade food, sometimes making something look less homemade is a treat. My Mum used to make most off my clothes when I was younger, and clothes with labels in generated a great deal of excitement!

Keep checking back/subscribe for more info on how to make these simple treats.

Travelling with Allergies!

Travelling with children is tough enough, but travelling with children with any other health issue is definitely into the next league. We have a collection of complex issues and haven't travelled abroad once in ten years because it is just too anxiety provoking. The last time was when my twins were two, one drinking elemental formula and one 100% tube fed. This actually made it a million times easier than sourcing free from foods abroad, or having to take ingredients and find somewhere to cook when you get there.

Don't get me wrong, travelling with any medically complex child earns you the right to feel smug about what is no small feat when you return home, triumphant yet in need of a proper holiday to recover.... but travelling without knowing if you can actually FEED your child precipitates a nasty churning feeling in your stomach which has thus far put me off trying.

That's fine if you have summers like 2008 or 2010 with long weeks of summer sun and you can do THIS in the UK...

But sometimes our temperamental climate just doesn't cut it. We are desperate to travel next year so I ask some of my lovely Facebook Group friends to offer some advice.

An explanation of Food Allergies for Children

Healthy Eating - What it means for us

Dorothy's friends Katherine and Alfie are eight years old. They suffer from food allergies, in their case “gut allergies” called non IgE allergies which you can’t test for.

IgE allergies are the ones which bring an instant reaction, and extreme forms can cause anaphylaxis.
Do you know anyone who carries an Epipen? They contain medicine for that sort of allergy. You can test for those - which makes identifying your trigger foods a little easier, although food allergies are never easy!

"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."

Food still needs to be fun though - Katherine and Alfie do lots of baking and cooking with their mum. You can substitute most foods to make delicious recipes.

Katherine says "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."

Want more information on food allergies? 
For “classic” IgE food allergies Our Allergy Adventures is a great site for kids. Lots of activities and useful child-friendly information.
For general info on allergies for kids www.allergykids.co.uk/
Or if your parents want to read more about allergies and intolerances, or more specifically Gut Allergies.

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?!