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.

Allergy Awareness Week and #livinginfear - top tips for teachers

This week is Allergy Awareness Week and this year Allergy UK are focussing on the fear most people with severe allergies live in every single day of their lives.

Did you know?

BRITAIN is in the grip of a major allergy crisis, with millions of sufferers at risk of dying because of a terrifying lack of life-saving awareness among the public? And those not at risk from life threatening allergic reactions are living compromised lives in fear of chronic pain and illness?

Allergy UK are raising awareness of the fears of allergy sufferers this week and are asking people to get involved on Twitter. You can join the awareness campaign on Twitter using the hashtag #livinginfear and tweeting a picture of yourself with your biggest fear. My allergies are hugely restricting though and have had a massive impact on my life- and continue to do so. But as a mum, my biggest fears are for my children, who are more profoundly affected by allergy. 

So here's my photo:-

Children with food allergies can feel isolated in school as well as elsewhere. So much of their lives, of our society revolves around sharing food. And as with children who suffer from disabilities or chronic illness children with food allergies often lack independence. Food is a basic human need, but for kids with food allergies this basic daily task is fraught with anxiety and the need for constant vigilance. It’s also a fundamental step in growing up to gradually sever the feeding bond with your mum, but imagine if your mum was the only person you could trust to feed you? It’s pretty restricting. My nine year old twins rely on me totally for their food, school cannot cater for them and neither it seems can anywhere else. They are most definitely very “attached” to me still, and I now understand why. (You can read more about food allergy and independence here.)

Isolation in school is a particular concern for me, my children are mostly well accommodated in school but cannot participate in cooking sessions, many trips, school lunches etc and constantly feel "different". Other parents are anxious about inviting them home to play as food is such an integral part of entertaining, and consequently they feel even more isolated in school.

So here are my "Top Tips" for teachers (I was one once too!) to help reduce isolation in school:-

1. Plan ahead. Most mums of kids with allergies will bend over backwards to help their child and will be only too happy to provide ingredients, advice and reassurance. (Just don’t contact them late the night before you are baking to request a list of ingredients!)


2. Listen. Mums really do know their children best and are usually just following instructions from health professionals. Whilst there are undoubtedly a few who are over anxious and possibly ill-informed the vast majority will have genuine concern and want to keep their child safe - whilst not wanting to restrict the enjoyment of any other child in the class.


3. Keep food treats in school to a minimum, or (as our children’s teachers did) plan ahead and ask for a safe treat for the allergic child.


4. Ensure safety doesn’t stop fun. It’s vital all children are safe in school, but that doesn’t mean children cannot have fun. Safety must also be age appropriate too. So at age nine my twins can cope with baking something they know they must not eat, but are supervised when they do. A Reception age child could never cope with this! Similarly, making the child who carries an Epipen for a dairy allergy your class milk monitor isn’t a very wise idea!! (It happened to us though!)


5. Avoid making the child who IS different feel different. Pretty obvious, but subtlety is key. Substituting safe chocolate in the class advent calendar and making a note of the date for the allergic child to take it is far, far better than leaving them to come to you to swap their treat in front of others.


6. Food still needs to be fun though, and even children with allergies need positive experiences with and around food. You can substitute many ingredients easily, there are recipes for children on exclusion diets on The Recipe Resource ( http://thereciperesource.blogspot.co.uk) and lots of other sites too!


7. Tackle the “Healthy Eating” message tactfully. With recent research to demonstrate that fats are not always the bad guys, the message is becoming slightly blurred anyway, but children with food allergies are missing important proteins from their diet, and often important fats too. Our twins were wisely told by a senior dietician that they need plenty of fatty foods like chips, and oils like olive and hemp oil in their diet as they are dairy free (amongst other things) and miss the natural fats present in dairy food.


8. Don’t judge. I was once asked why there were concerns about my daughter’s growth when she was clearly very chubby, and that she looked really healthy. Children are all different, but children with food allergies, especially the non IgE ones are prone to poor growth. Poor absorption leads to poor growth - and the body needs to gain mass before it is able to grow upwards. My kids were short and chubby for a long time, sadly it wasn’t a sign of health at all. It’s stressful enough as a parent to navigate life with a child with food allergies, judgement from others is hard to take.


9. Expect to see more of the parents of kids’ with food allergies. They are not overly fussy, and need reassurance as much as their children. They are your best allies for a smooth year with an allergic child in your class, and dislike being the “bad penny” often feeling embarrassed ad in the way. Any reassurance is much appreciated!


10. Educate. Obviously - you’re a teacher :) But a tiny bit of knowledge for the allergic child’s peers goes a long way to helping them feel one of the class. There is a simple explanation aimed at Key Stage 1 children here.

Allergies have a serious impact on sufferer's lives, and they are certainly life changing, but we can and should limit the fear they live in. Unfortunately the current situation is almost unbearable for some, and as the excellent article in The Guardian last week explains ignorance about allergy is not helping. This is why awareness is key.

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.

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.

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.

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.

Bran and Raisin Muffins

Makes 20 cup cake size mini muffins or approx 12 larger ones.

Free from Wheat (gluten free if using rice bran), Dairy, Soya and can be egg free if you use egg replacer or try omitting the egg which does work although not as well.

Ingredients

• 120 mls pineapple juice / orange juice / juice and smoothie mix (I did the latter)
• 60mls Molasses or treacle, or I used Golden Syrup and it worked just as well
• 150g Oat bran (or rice bran for gluten free)
• 1 tsp vanilla essence
• 75g raisins
• 1 egg
• 120mls Oatly cream (or for gluten free use rice cream or soya cream if allowed)
• 60mls vegetable oil
• 1/2 teaspoon cinnamon
• 115g rice flour/blended plain gluten free flour
• 1 tsp baking powder
• 1/2 teaspoon baking soda
• 1 shredded carrot or shredded apple (optional) or drained stewed apple (again, optional)

Method

• If you have an electric mixer you can mix all the ingredients at once in this recipe. Otherwise mix all the wet ingredients plus bran, cream/yoghurt, and raisins and leave for 10 mins 
• Combine with all the all the dry ingredients. 
• Combine and mix in the carrot last.
• Line a muffin/fairy cake tin and spoon out the mixture. 
• Bake at 200C for about 10 mins or until firm.