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If your child suffers anaphylaxis, don’t you need to be one of the first to know?

Introducing the Alert 5 smart phone app

I have recently received details of Alert 5, which is a new app that could prove invaluable in the event of an anaphylaxis emergency.

What does the app do?

With a single tap, the app can be used to tell up to 5 people:

  • That the allergic person has had a severe reaction.
  • The exact location on a map of the person suffering anaphylaxis.

alert5-3

If the alert is being sent to:

  • A mobile, then a text message is sent, explaining the sender is having a reaction. The message includes a 20 character URL, which links to a detailed map pinpointing the sender’s exact location.
  • A landline, the text message is read out.

An allergic child with their own mobile phone can therefore alert their parents, brother, sister etc that they are experiencing a reaction.

The stored numbers are easy to amend, so you can set different numbers for different times of the day. You might, for example, include the school office number during school hours, but change this to something different at weekends.

alert5-2

Recipients need to know the drill

For the system to work well, the key is that the recipients of the message know:

  • That the alert will only be sent in the case of an emergency.
  • The agreed plan of action when an alert is received. This would differ from family to family. For example, it might be down to the parents to head off immediately to find the child. The other 3 recipients might check that the parents have received the message safely and be on hand to help with other children.

Handy for parents’ phones too

The app could also be useful for parents to download onto their own phones too. My son, at 4, is (I hope) some way off demanding an iPhone. However, by having the app installed on my mobile I can let my partner and, for example, his grandmothers know that he has had a reaction.

When my son had his second anaphylactic reaction, my sole focus was on administering the EpiPen, giving his inhaler and anti-histamine and keeping him calm. I didn’t have the time or the brain space, whilst in the thick of it, to phone my partner (much less other family members) to let everyone know what had happened. Luckily, on that occasion, a friend was there to make the calls. However, had I been by myself and subscribed to Alert 5, I could have tapped my phone and sent out the distress signal. Ian would have known to come and find us. D’s grandmothers would be alerted to the fact he has had a severe reaction. They could double check that Ian had received the alert and could, for example, be getting ready to head over to our house.

The information screen

The app also allows the sender to press a button to display an information page on your phone, or iPad etc, which would let those around you know what they can do to help if you are too unwell to explain. For an allergic child, the information screen could detail the child’s allergies and let readers know where their EpiPen can be found.

alert5-4

Key message: (1) adrenaline (2) call 999 THEN (3) use app

My main concern when I heard about the app was that someone might waste valuable time in an anaphylaxis emergency rummaging for their phone, when what they need to do first is administer adrenaline and dial 999. When I put this to one of the app’s founders, Lee Henderson, himself a former fireman, he agreed completely: for anaphylaxis emergencies the app is an additional step for AFTER adrenaline has been given and an ambulance called. What the app does is to provide added peace of mind.

How Alert 5 could work in an anaphylaxis emergency

It’s easy to imagine scenarios where the app would come into its own:

  • Your child is at the park with friends when s/he has anaphylaxis. The EpiPen is given, the ambulance is called and the friend presses the help button so you can get to the scene.
  • Your secondary school aged child is at the far side of the school playing field. They have a reaction: hopefully they have their EpiPen with them. If not, if the staff room number was stored in Alert 5, valuable minutes could be saved by pressing the button for help.
  • Your teenager is on a night out. It won’t remove your worry but at least you know they have a simple way of telling you if they have a reaction.

How the technology might evolve in future…

Calling an ambulance at the touch of a screen

I understand that Alert 5 are talking to police and ambulance services about a direct link between the app and the emergency services. If this development goes ahead, the alert button would both call an ambulance and let your 5 emergency contacts know.

Solving the problem of a locked phone

Another concern I had was if the child’s phone was lockable. Would their friends need to know their pin to be able to send the alert? Was there any way the app could override the locking, so someone else could summons help?

Whilst the company make a special “defender phone” which has an emergency button to override the phone’s lock, this product is more suitable for companies to buy for their lone workers, and likely too expensive for individuals. However, Alert 5 are looking at the issue of locked phones to see whether there is a way the app could override the lock with a combination of button pushes. For Android phones, they are also seeing whether there could be a means of overriding the lock if it is shaken for three seconds. I understand that if these upgrades do take place in future, then Alert 5 subscribers will get the benefit of them within their £4.99 pa subscription.

How much is Alert 5 and where can I get it?

Alert 5 costs just £4.99 per year and is available for both iOS devices (iPhone, iPad etc) and Android phones. You simply go to your app store and download it by searching for “Alert 5”.

For me, provided everyone understands it is an action to take AFTER adrenaline has been administered and the ambulance is on its way, £4.99 a year for an added layer of reassurance is well worth it.

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Has your family missed having muesli as a breakfast option?

Before entering the nut free world, muesli was a regular fixture on our weekly shopping list. When my son suffered anaphylaxis to peanut in spring 2012, our doctors advised that he should avoid all nuts. Dorset Cereals, Jordans, Alpen… every box I checked listed nuts as an ingredient. I gave up looking, believing muesli to now be an off limits food, banished from our nut free home.

We recently came back from holiday full of the usual virtuous intentions… drink less, exercise more, eat more healthily and on and on. Whilst I’ve not yet mustered the willpower to even look for my trainers, the healthy eating kick got off to an excellent start when I received samples of Frebaco’s nut free muesli and porridge.

The degrees of nut allergy separation

Although the stats show that 1 in 50 children now has a peanut allergy, that’s only the tip of an iceberg. When a child is diagnosed peanut or tree nut allergic, many homes then become nut free zones. The allergy doesn’t just affect the allergic child’s diet, it affects how an entire household eats. A recent survey by Rich Products looked at the “Nut Allergy Ecosystem”, which showed how one child’s nut allergy impacts on how a wide circle of people shop (family, friends, teachers and so on).

Rich-s-Nut-Allergy-Ecosystem-Infographic from Foodnavigator-usa

(image courtesy of Foodnavigator-usa.com)

Whilst it might be a rare child who professes to love muesli, it is important that nut free versions of these products exist, for the parents who now find themselves living in nut free homes. Although finding nut free chocolate brands is great, a family’s supermarket shop isn’t just about treats. There is therefore a demand for nut free versions for ANY type of food, and particularly products which typically contain nuts. Some Chinese or Indian cooking sauces are a prime example. Muesli is another.

Introducing Frebaco

Step forward Frebaco. They’ve just launched a range of nut free breakfast cereals in the UK. There are “plain” and “fruity” versions of both muesli and porridge. My partner’s now a fan of the organic muesli, which he’s been eating with chopped fruit and yoghurt. Whereas I’ve enjoyed ploughing through the ready made option – the fruit muesli with added pineapple, papaya, banana, raisins and coconut flakes. As for the kids, my daughter has been stealing spoonfuls of my fruit muesli and they were both persuaded to make like Abney & Teal, sampling the oat and barley porridge, with jam. I suspect the children might be bigger fans of the company’s FRAX flakes, when they’re brought to the UK. I’ve not tried these yet but they are more geared to children: hoop shaped and in either cocoa & chocolate flavour or strawberries & blueberries.

The muesli and porridge are currently retailing at selected branches of Tesco (more on that below) at the following prices:

  • Oat & Barley Porridge: £3.25 (750g)
  • Oat & fruit porridge: £3.25 (750g)
  • Fruit Muesli: £3.00 (625g)
  • Organic Muesli: £3.00 (625g)

So all in all, they are quality nut free products at prices comparable to nutty muesli brands and something we will now be buying regularly.

Frebaco’s nut free credentials

Frebaco state on their website that they “do not allow any nuts in our factory and all our ingredients are certified to be nut-free”. Both their ingredients and products are tested for almonds, brazil nuts, cashews, hazelnuts, macadamia nuts, peanuts, pecan nuts, pistachios and walnuts. They are:

“Certified as a “nut-free” company, nuts are not allowed anywhere in the factory. Likewise all ingredient suppliers to Frebaco have similar certification and strict procedures.”

I confess I hadn’t heard of an official nut free certification previously. The Frebaco website includes a detailed nut free statement, which explains that the certification includes “BRC, ISO (Quality and Environment), Swedish National Food Agency (NFA nut-free ) and EU Organic / KRAV (organic products).”.

Where can I get hold of Frebaco cereals?

Frebaco has just launched in the UK in Tesco, who are pioneering a nut free zone as part of their “Lifestyle Food Fair”. The event is running until 31 August in certain Tesco Extra stores (here’s a  list of participating stores) and online at Tesco.com:

(I understand there’s also a “4 for 3” promotion running until 24 August.)

I will save my comments on the Fair’s unfortunate title for another day (intrigued: does anyone shop nut free by choice?). For now, I’m happy to acknowledge that this initiative is a stride in the right direction for food allergic consumers, provided it continues long term.

The Frebaco products are certainly worth tracking down. Fingers crossed this brand continues to be available here after August, hopefully in a range of supermarkets and throughout the UK. It could provide a safe muesli option to many a nut allergy network.

Update (28 November 2014): Great news! Frebaco muesli is now available to order online from the TotallySwedish website.

 

Frebaco nut free muesli and porridge

Full ingredients information

Oat & Barley Porridge: 

OAT flakes* 50%, BARLEY flakes* 50%

*wholegrain

Fruit Muesli:

OAT flakes*, pineapple crisp (WHEAT flour, wholegrain  OAT flour*, BARLEYmalt extract, flavouring, salt), WHEAT flakes*, cornflakes (maize flour, salt, BARLEY malt extract), pineapple 9,3% (pineapple, sugar, antioxidant (citric acid), preservative (SULPHUR DIOXIDE), RYE flakes*, papaya 8,6% (papaya, sugar, preservative (SULPHUR DIOXIDE), BARLEY flakes*, banana 6,2% (banana, coconut oil, sugar, flavouring), raisins, toasted coconut flakes 3,6%.

*wholegrain.

Organic Muesli:

OAT flakes* **, WHEAT flakes* **, BARLEY flakes* (BARLEY* **, salt), RYE flakes* **.

*organic ingredient

**whole grain

Oat & fruit porridge:

OAT flakes* 85%, raisins 7%, papaya 4% (papaya, sugar, preservative (SULPHUR DIOXIDE), pineapple 4% (pineapple, sugar, antioxidant (citric acid), preservative (SULPHUR DIOXIDE).

*wholegrain

 

 

 

 

 

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Last Saturday, I attended Allergy UK’s first annual conference at St Thomas’ Hospital, London. It was an incredibly informative day, combining some fascinating insights on the latest allergy research, together with stacks of practical advice on managing allergies day-to-day.

My family has been part of the allergy world for two years. On 30 April 2012, my then 20-month-old son suffered severe anaphylaxis when he bit into a peanut butter cookie, resulting in a three day spell in intensive care. In addition to his peanut allergy, eczema and asthma, we’ve since discovered he has a host of environmental allergies (grass, cat, dog, house dust mite). He had his second anaphylactic reaction in May last year, which our allergists believe was triggered by grass pollen. I was therefore attending first and foremost as a “nut mum”, but one with more than a passing interest in asthma and grass allergy too.

The overriding takeaway point for me was the need for allergy parents to know about the NICE guidelines on Food allergy in children and young people and Anaphylaxis. When should your GP refer you to an allergy clinic? When should you be offered skin prick tests? When should you be prescribed an EpiPen? These guidelines have the answer.

I’ve set out below the top tips I picked up. They’re based on my scribbles from the day – any errors are mine alone! I’ve inserted any relevant weblinks I can find.

Research on allergy management

Every reaction we’ve experienced with D has been an “immediate”, IgE mediated reaction. I haven’t got any first hand experience of “delayed” allergies or intolerances. So Professor Howarth’s explanation of how different adverse reactions are categorised was very helpful.

Professor Howarth and Dr Jo Walsh both used a diagram to explain this. Here’s my jotted copy, amalgamating the two:

Reaction-diagram

During the panel discussion, an audience member asked whether intolerances could turn into allergies. Apparently, it might be that although an allergy doesn’t show up on skin prick tests (SPT) to begin with, it IS developing in the gut. The more exposure the child then has to the allergen, the more they become sensitised, until eventually the allergy shows on a SPT. So whilst, as the SPT results were initially negative, it might appear that an intolerance has become an allergy, it was in fact an allergy developing all along.

Although the experts believe that allergy is an interaction between environment and genetic factors, some patients have no family history of allergic conditions.

Today, 1 in 6 children have asthma and 40% of teenagers have hayfever.

The link between gut bacteria and allergies

One area researchers are looking at is the link between allergies and the profile of bacteria in a child’s gut. Studies have shown that reduced “microbial diversity” in the gut leads to an increased likelihood of asthma.

The normal gut process means a child becomes tolerant to foreign proteins. So scientists are researching how an abnormal bacterial profile might stop this tolerance from happening.

They are looking at various factors which “influence the infant microbiome”, for example:

  • Whether the mother chews the baby’s food before giving it to the baby (apparently this is common in some cultures).
  • Breastfeeding.
  • Skin contact.
  • Normal birth vs c-section (some studies have pointed to an increased asthma risk for children born by Caesarian).

What can parents do to reduce a child’s allergy risk?

There’s no magic answer to this one … yet.

There was a 2006 study (Perkin & Strachan) which suggested drinking unpasteurised milk had a protective effect. (I hasten to add, it wasn’t suggested we all start doing this – it was highlighted as an interesting link!)

Taking probiotics during the final weeks of pregnancy (and giving them to your young baby) might help… or might have zero impact. The data is conflicting.

The allergic march

The allergic march is where a child goes on to develop a range of atopic conditions. Typically the march will progress from food allergy > eczema > asthma > hay fever. One heartening stat was that food allergy is unlikely to begin after 6 years of age.

A child’s exposure to allergens

Professor Howarth discussed the link between a child’s exposure to food allergens and the risk of that child developing an allergy. Some experts now believe that both too little exposure OR too much exposure can lead to an increased risk.

The LEAP study is one to watch. This is currently investigating the issue of whether peanuts should be avoided or introduced early into a child’s diet.

The results of immunotherapy trials have been promising. Fleischer and colleagues carried out a sub lingual immunotherapy trial, where drops of peanut are given under the tongue. Researchers at Addenbrooke’s recently reported the outcome of their oral immunotherapy trial (where children were given peanut solution to drink).

In time, the principles from these trials might be applied to other allergens such as egg and fish.

Vitamin D

Research trials are looking at whether being given Vitamin D can reduce the risk of asthma and allergy. The theory is that people with high levels of Vitamin D have a reduced allergic response. Urticaria (itchy hives) has also been linked to low vitamin D levels.

A lot of the UK receives insufficient sunlight for the required levels of Vitamin D. Sunscreen also blocks 99% of dermal vitamin D synthesis. We may need to increase our time outdoors and up our Vitamin D intake from food or supplements.

A basic understanding of allergy and treatment

Maureen Jenkins (Director of Clinical Services, Allergy UK) talked about the different allergic conditions and shared tips for allergy and anaphylaxis management. These were the key points for me:

  • Allergy is an immune system response to a normally harmless substance in a sensitised atopic person.
  • Allergy is proved by both testing (for example, a positive skin prick test) and a clinical history (symptoms).
  • An interesting point was that not all asthma, rhinitis and eczema is allergic (although most is).
  • For an allergic reaction, there is always inflammation (of the skin, eyes, airways, gut).

Types of allergic condition

  • Food allergy affects 6-8% of children. It often begins with milk (which is usually outgrown by 2-3), then egg (which is usually outgrown by 3-5), then more once a baby is weaned.
  • Peanut allergy has tripled in the last decade.
  • If a child has severe eczema, they are more likely to get food allergies too.
  • Eczema is a faulty skin barrier, which means both that moisture escapes and that bacteria and infection seep in. Itching at night leads to a disturbed sleep, which in turn leads to lethargy and poor concentration.
  • Hayfever (allergic rhinitis) is like having a bad cold a lot of the time. 40% of children with hayfever drop a grade between their mock GSCE and their final GCSE. This goes up to 70% if they are taking a sedating anti-histamine.
  • Hayfever can trigger asthma attacks, so if you have asthma it’s important to have your nose checked too.
  • Asthma can lead to poor sleep and therefore reduced concentration. It can also cause anxiety – breathing difiiculties are frightening. Asthmatics often avoid exercise (for fear of making their symptoms worse) or social situations (if, for example, self-conscious about coughing).
  • Hives (utricaria) are for the most part not related to allergy.
  • Some people have recurring angiodema (deep swelling), without knowing why.

Allergen management

  • Avoid your allergens.
  • Take your medication as prescribed. Take preventative medicines. ASK your doctor how to use the medicines properly.
  • For eczema, “moisturise copiously”! You should be getting through 1 tub of eczema cream a week.
  • ALWAYS carry your adrenaline auto injectors (and practice regularly with a trainer pen).

Anaphylaxis

Symptoms include:

  • Airways in spasm – so you wheeze or can’t talk (in a school setting, don’t assume a child is okay if they’re not talking).
  • Flushing.
  • Nose running.
  • Rapid heart rate.
  • Dropping blood pressure.
  • Feeling of impending doom.

The advice to lie the patient down and raise their legs is so that you get the blood to their head.

You need a second EpiPen if they are showing no response after 5 minutes.

The key points are:

  • Control asthma.
  • Always carry your auto-injector.

Child allergy (Birth to 12 years)

In the afternoon, I attended GP Dr Jo Walsh’s workshop on child allergy.

The first part of the session focussed on the difference between allergies and intolerances, specifically the difference between cow’s milk protein allergy (CMPA) and lactose intolerance. I learned that as an intolerance is to do with digestion, symptoms such as a skin reaction, reflux or respiratory symptoms show a doctor that something is not just an intolerance.

Although a child can outgrow CMPA, they can then be left with a lactose intolerance because the bowel wall has been damaged, and the child can’t then absorb lactose (the sugar in milk) properly. One interesting point was that you need to stick with an elimination diet for 4-6 weeks, before you can say it isn’t working (to give the bowel chance to repair, if damage is leading to the symptoms).

Symptoms of a delayed food allergy can include:

  • Skin – eczema (although an acute reaction can also flare eczema).
  • Bowel (anything from colic down to diarrhoea).
  • Respiratory (but it is often difficult to differentiate this from a small child just being snuffly).

As regards allergy testing, the NICE guidelines Diagnosis and assessment of food allergy in children and young people in primary care and community settings set out the best practice for GPs when a food allergy is suspected. There is also information on the guidance for parents.

Testing should be carried out “based on the results of the allergy-focused clinical history”. So, there needs to have been a reaction history, and a specific IgE blood test needs to be done for just one food. GPs shouldn’t be doing screens of blood tests for lots of different foods.

The guidelines set out when a child should be referred to an allergy clinic. The criteria include:

  • Faltering growth and gastrointestinal symptoms.
  • Significant eczema and the parent suspects food allergies might be the cause.
  • Persisting parental suspicion of food allergy, despite a lack of supporting history.

Many GPs don’t have expertise in allergy. So, if you are being refused a referral, but fit the NICE referral criteria, it might be a good idea to show the guidelines to your GP…

There is also NICE guidance on anaphylaxis. This provides that under 16s who have had emergency treatment for suspected anaphylaxis should be admitted to hospital. Before being discharged from hospital, the family should be given advice on anaphylaxis, an adrenaline auto-injector and be referred to a specialist allergy service.

As regards nursery and school, the advice was to build trust. Start by finding out if they have any experience of dealing with children with allergies. If your school doesn’t have allergy policies in place, examples can be found on the web. Effective safeguards can include a “red plate” system, where allergic children’s meals are checked twice: by the kitchen and then by the nursery staff in the child’s room. Beware of hidden dangers, such as cereal boxes being used when the children are playing shop. You can download emergency allergy action plans from the BSACI website.

Teenage allergy (13 to 18 years)

Dr Helen Brough (paediatric allergy consultant) hosted a session on the daily impact of allergies, asthma and eczema for adolescents.

Several parents attending the session reported that their teenage food allergic children now refused to eat at restaurants when out with their friends. They would sit and have a drink whilst their friends ate a meal, even it was a restaurant they had eaten at safely with their family in the past. This was an eye opener for me. You think you are doing all the right things by taking your child to restaurants and showing them how to inform the staff about the need for a nut free meal, however a teenager might still prefer to miss the meal than draw attention to themselves in front of the restaurant staff or their peers.

Whilst peanut allergy, for example, has been shown to lead to more anxiety than diabetes, there is not much psychological support. For these types of issues cognitive behavioural therapy (CBT) can be useful. Your child may be able to be referred to Child and Adolescent Mental Health Services (CAMHS) in respect of this.

Another issue covered was the age that a child might be expected to be able to self administer adrenaline. This tends to be any time from 10 years of age onwards.

How Allergy UK can help you

Towards the end of the conference, Sarah Stoneham (Allergy UK Trustee) gave an update on the work of Allergy UK, which also described her own family’s allergy journey since her daughter suffered anaphylaxis as a baby. The stand out tips for me included:

  • As well as a helpline (01322 619898), there is a web chat facility on the Allergy UK website.
  • There is a support contact network, where you can be matched with people with similar issues.
  • Allergy UK sell a range of translation cards, from the basic (I have an allergy to…) to restaurant cards and emergency cards.

In summary…

So, all in all, an extremely informative day… and those are just the sessions I attended! In addition, there was also a workshop on adult allergies (which looked at, for example, occupational allergy) and demonstrations for nasal sprays, adrenaline auto injectors and eczema creams.

Thinking of going in 2015? I’ll definitely see you there!

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How much attention do you pay to ingredients labels on your toiletries and cosmetics?

I recently heard from Sharon, about recommendations for nut free hair products. She had come across the following information on the Aveda website (as at 9 April 2014), that Aveda:

Aveda nut allergy information

I remember having a nervous moment, in the early days following my son’s peanut allergy diagnosis, when it dawned on me that my Aussie hair products and Burt’s Bees cosmetics contained nut oils. I binned the lip glosses but asked our hospital about the shampoo and conditioner. They advised me it shouldn’t be a problem, particularly given any nut oil in shampoos and conditioners is likely to be highly refined. I have continued to buy Aussie (containing macadamia nut oil) but do check the labels on new products for references to “arachis oil” (peanut oil) or other nut oils. I also say “no” to cuticle oil when having a manicure, in case that too contains peanut or nut oils.

Am I being too lax, still using shampoo containing a nut oil?  Is it necessary to scrutinise every toiletries label for mention of nuts?

Reading the Aveda warning prompted me to delve into the issue of nut containing toiletries and cosmetics a little deeper…

nut_free_toiletries

Should nut allergic people avoid toiletries and cosmetics containing nuts or nut oils?

The Anaphylaxis Campaign’s view is yes. Their factsheet on this topic notes:

“From the start it is important to point out that little is known about the allergenic risk from food ingredients that are present in [cosmetics, toiletries etc]. As far as many products are concerned, that risk may be small or non-existent because the ingredients used (for example, oils produced from nuts) may have been highly refined to the point that most of the proteins present have been removed.”

However, their advice is:

“If you are allergic to a food, and know it is present in a non-food product, avoid using that product. “

And for cosmetics:

“The key message is: Always read the label whenever you buy any cosmetic product.”

Ingredients labelling for toiletries and cosmetics

According to the Allergy UK site, EU law requires:

“all the ingredients to be included in the label for soaps, cosmetics and ‘personal care products’.  This classification is taken to include any preparation that is applied to the skin, eyes, mouth, hair or nails for the purpose of cleansing, giving a pleasant smell or enhancing appearance.”

Unlike food labels, for toiletries, the ingredients can be given in Latin. Both Allergy UK and the Anaphylaxis Campaign have translation lists. Examples of nut ingredients include:

  • Almond, bitter – Prunus amara
  • Almond, sweet (and almond oil) – Prunus dulcis
  • Brazil nut – Bertholletia excelsa
  • Cashew – Anacardium occidentale
  • Hazelnut – Corylus rostrata/americana/avellana
  • Macadamia nut  – Macadamia ternifolia
  • Peanut – Arachis hypogaea
  • Pistachio – Pistacia vera
  • Walnut – Juglans regia/nigra

US website, Bestallergysites.com notes that peanut oil may be listed as “arachis oil” or “arachidyl behenate”.

Nut free toiletries and cosmetics: recommendations?

As regards “nut free” products, the SkinsMatter website is worth a look as this showcases “free from” skin care brands.  One of the entry criteria for their FreeFrom Skincare Awards is that products must not contain”Peanut / peanut-derived ingredients”. Products may also be tree nut free, as entries must exclude three or more of “wheat, gluten, dairy, sesame, tree nuts, soya and egg”. They have a page dedicated to Skincare ranges free from food allergens.

Does anyone have a recommendation for peanut and nut safe toiletries and cosmetics? (particularly hair care brands to help Sharon and I!) If so, please do post a comment below – I would love to hear from you!

Further information

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Severe allergies…

I’ve talked previously about how best to describe my son’s peanut allergy in conversation, so other people understand the severity. I’ve fallen into the habit of saying he is “severely allergic”, for fear that saying “allergic” might make the listener think “hmm, yeah, isn’t everybody these days” and saying “anaphylactic” might not be understood.

In recent months, I have read on several occasions that there is no such thing as a “mild” allergy: as any allergy has the potential to result in a severe allergic reaction. You can’t predict with absolute certainty whether an allergic person will have a mild or severe reaction on coming into contact with their allergen. They might have hives on one occasion, but anaphylaxis on another. So I am probably undermining the term “allergic” by qualifying it with the word “severely”. Simply saying “allergic” SHOULD be enough.

… and the allergy pretenders

Then I heard a story that left me somewhat aggravated and which also made me realise there is a need to spell out to people that, not only is my son’s allergy severe, it is also very “real”.

A friend of a friend said he had an allergy to chillies. One evening, whilst at a rugby club social, my friend realised a spicy dish had been taken to the “allergic” man’s table by mistake. She panicked, rushed over to warn him  … only to be met with a mumbled “erm, I think this will probably be alright” and then to see him continue eating it. Turns out, he was pretending to have an allergy, to make sure people didn’t serve him chilli-laden food.

I’ve also heard talk of people feigning allergies or intolerances to certain foods, so they don’t have to confess to counting their calories. Obviously, this all takes a far more worrying turn if someone is claiming an allergy to mask an eating disorder, and I am in no way qualified to pass comment on that. However, the woman who goes out for a meal with friends and, to save face when ordering a salad, pretends to have an intolerance? Unnecessary, unhelpful, and for goodness sake, how unassertive?

It would appear faux food allergies have been in vogue for some years, with the Washington City Paper reporting on the trend back in 2008.  The article quotes restaurant owner Jeff Black, who says of the “ingredient-averse” who feign an allergy:

“When people fake disease, it’s just like people who fake to get handicap plates… It’s ethically and morally wrong.”

Absolutely. So, why do diners do it? Is it an expression of control freakery where they otherwise don’t trust a restaurant to make a meal to their taste (or within their budgeted calorie allowance?). Is it a form of attention seeking, so that they are fussed over by the restaurant or receive sympathy from friends? Or is it simply a cowardly way of ensuring you get the meal you want, and these people haven’t realised the disservice they are doing to real allergic diners?

The problem of pretend allergies may even be rife amongst school children. It seems some parents are not above claiming that their child “can’t eat” something, when the truth is they “won’t eat” a certain food. During my recent spate of primary school tours (sussing out which were allergy savvy before my son starts this September), one headmaster stressed to me the need for a doctor’s letter confirming that D had a diagnosed allergy. Apparently, this proof is required so the school can differentiate the children with genuine dietary requirements from those who are merely picky eaters.

This approach is also recommended the School Food Plan, where the section dealing with allergies in the Q&A for headteachers states:

“Make sure that dietary needs are backed up with a medical certificate or letter from the doctor, so you ensure you are only altering your catering for those who are medically certified – or those who have special diets for religious or cultural reasons.”

I find the whole notion of pretend allergies quite incredible. It may seem like a harmless white lie, but the more allergy pretenders there are, the more catering establishments and the general public will be cynical about the claims of those with real allergies. So… men who can’t handle hot food, dieting ladies and pandering parents, please think twice before turning allergy pretender. It really doesn’t help those with the real medical condition.

Further information

Severe allergies

The Allergy UK site contains information on an allergic person’s chance of having anaphylaxis. It states this is:

“a little more likely in someone who has:

  • had a previous anaphylactic reaction
  • moderate-severe asthma
  • underlying cardiovascular disease”

Factors such as “exercise, heat, alcohol, the amount of allergen taken, and, for food, how it is prepared and consumed” can also influence the severity of the reaction. (For full details, see Allergy UK, Anaphylaxis and Severe Allergic Reactions).

Allergy pretenders

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*** See NUT FREE EASTER EGGS – YOUR 2016 SHOPPING GUIDE for my round up of the Easter eggs and chocolate goodies available for 2016 ***

I haven’t yet got myself organised for Easter 2014. However, as Easter this year is from Friday 18 to Monday 21 April, I’m optimistic that I still have time to stick to my New Year’s resolution to spare myself a frazzled Good Friday dash around Sainsbury’s, hunting for the last remaining Kinnerton eggs.

It seems like some of you are already beginning to stock up on nut free Easter chocolate treats. So here’s a list of the nut free Easter egg options I’ve come across so far. This list is compiled from the chocolate brands featured on the Nutmums nut free food directory and the great tips shared on the Nutmums facebook page on Tuesday (big thank you everyone!).

As always, please do check the labels each time and contact the manufacturer if you are at all unsure whether something is safe.

Cadbury

The Cadbury website lists certain chocolate products as “nut absent”. Of their many Easter products, only the regular Creme Eggs are shown as nut absent. The mini Creme Eggs and the “Mini Eggs” (the little ones in the shells!), for example, are labelled “may contain nuts”.

“Choices” by Celtic Chocolates

Celtic Chocolates do not use nuts in their factory and none of their ingredients contain nuts. Their products are available online from Free From For Kids and I’ve seen them on the Sainsbury’s website too.

D&D Chocolates

D&D Chocolates produce dairy free chocolate and carob, which is also “Gluten Free, Nut Free and Egg Free”. There are Easter eggs, mini eggs and lollies (all in either chocolate or carob) available to order from their website.

DandD mini eggs

Holland and Barrett

I’ve heard that Holland and Barrett sell nut free eggs, however, at the time of typing their website only shows “Eco Eggs” by Montezumas (which “may contain nut traces”) and “Hazelnut Crunch” eggs (say no more). It may be that your local branch has nut free eggs in stock. Last year, they were selling nut free Celtic Chocolate “Choices” eggs through their website, so they may yet reappear for 2014.

Kinder

Certain Kinder products appear safe, for example their Special Edition Eggs and Easter Lambs. However, some products (such as the mini easter eggs) contain hazelnut.

Kinnerton

Think nut free chocolate, think Kinnerton. Famous for their nut safety promise, they produce a range of Easter products (eggs, eggs with buttons, eggs with bars, eggs with mugs, eggs with mugs and plates…) in a variety of different characters (for example, Peppa PigDoc McStuffinsThomas and Something Special).

Luckily, my 3 1/2-year-old son and soon to be 2-year-old daughter are still firmly in the Thomas and Peppa demographic, so I think Kinnerton have probably got it sewn up for our family again this year. For those of you with older children, you might want to check out their adult egg (pictured below), which is dairy, egg, gluten and nut free. According to the Kinnerton website, it’s stocked by Asda, Morrisons, Sainsbury’s and Tesco, although there is limited availability.

Kinnerton adult egg

Malteser (made by Mars)

As with Cadbury Creme Eggs, with the “Malteaster” range, the nut status varies from product to product. Whilst the Malteaster Bunny 5 pack lists only egg as a “may contain”, the Malteaster Luxury Easter Egg, for example, may contain nuts.

Mini Milk

Mini Milk have brought out an ice cream van Easter egg this year, which includes four lollipops:

Mini Milk easter egg

Nut Free Chocolate People

Nut Free Chocolate People make “Delicious chocolates without any nuts or nut traces”, available to order from their website. Scroll down on their Seasonal delights page to see their selection of eggs and Easter themed chocolates.

Plamil

Plamil products are made in their “own factory which never uses dairy, gluten or nuts”. They are stocking both full Easter eggs and half eggs for 2014.

Plamil easter egg

Sainsbury’s

Sainsbury’s have confirmed that their Freefrom dark chocolate easter egg is nut free.

Tasha’s Dairy Free Delights

Tasha’s Dairy Free Delights has a range of handmade Easter chocolates (including some lovely looking Easter gift tins). Tasha’s use both Plamil and Moo Free chocolate. Plamil is a dedicated nut free brand. Moo Free chocolate may contain nut traces. I understand that you can specify that they use Plamil when you place your order.

… Any more?

If I’ve missed any, please do post a comment below. Happy Easter!

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Today’s allergy entrepreneur sharing her story is Hailey Phillips, the founder and creator of Allergy Adventures, which aims to help “children with food allergies live safe, happy and healthy lives, filled with fun and adventure”. If you visited the Allergy Show this year, you’ll no doubt have seen the Allergy Adventures zone for children. Every time I passed, the stand was buzzing with children taking part in craft activities whilst parents snapped up the fun storybooks about Minoo, Woot and friends and their magical lunchbox adventures. Allergy Adventures are already improving children’s experiences at hospital allergy clinics and will soon be increasing allergy awareness in schools. Here Hailey talks about the many ways in which she is helping children to have a positive mindset about their allergies.

Hi Hailey. It’s great to talk to you about Allergy Adventures. Let’s start with how it all began. I know you have coeliac disease … but that a huge inspiration behind you founding Allergy Adventures was your niece?

Yes, my niece was diagnosed with an egg allergy at eight months old. But it wasn’t until she was two that I started to realise how emotionally damaging food allergy can be for children as they get older.

Birthday parties, school lunches and seasonal festivities like Easter, Pancake Day and Christmas, are just a few of the times when children with allergies can feel excluded.

And it’s not just the feelings of ‘missing out’; extreme allergic reactions can be terrifying.  My niece had an anaphylactic reaction at her nursery when she was two, and we’re currently going through a series of food challenges to nuts after she had a reaction late last year. She’s now seven and still hasn’t shaken the pesky allergies off.

So with all of this in mind, I gave up my full-time job in London as a graphic designer – sorry mum! – to create Allergy Adventures®, with the aim of helping children with food allergies learn about their condition in as light-hearted a way as possible. I created the maze design in recognition of the confusing journey that parents start on when their child is diagnosed with food allergies.

But the journey can be rewarding when you find a way forward; be that a successful free from bake in the kitchen, or finding a new free from product to try.  And for children, the maze creates a look that’s fun, and I mix this up with exciting ideas and new things for them to discover. This helps them to manage the seriousness of food allergy, and to keep themselves safe around food.

Allergy Adventures booksYou have a range of children’s storybooks where characters with different allergies go on all sorts of adventures. Was this something you created originally for your niece?

Yes. I wanted to help my niece realise that, in spite of her food allergies, she could enjoy a variety of other foods that wouldn’t make her ill. And above all, make it a fun learning experience, so I came up with my quirky characters who go to magical places and have cool adventures with allergy-friendly foods. There’s an onion ringmaster at a circus and a beetroot monkey at a zoo, who does a very funky dance. It sounds a bit wacky, doesn’t it? I obviously read way too much Alice in Wonderland and Charlie and the Chocolate Factory when I was a kid!

But behind the fun there are serious messages in the books that teach children how to keep themselves safe around food, and to always look out for hidden allergens.

“My Seaside Adventure” hit the shops before Christmas, which tells the story of Woot who is allergic to nuts. Another character Boskus is peanut allergic – is he going to have his own adventure sometime soon?

Allergy Adventures Woot nut allergyAllergy Adventures Boskus peanut allergy

Ahh Boskus, I’m a bit worried that he might be a victim of Allergy Adventures®’ success! Although his story is all sketched out – he has a pretty wild time on some dodgems made from jelly – he may have to wait a little before I can bring him, and his funfair adventure, to life.

I’ve just been awarded a grant by the Wellcome Trust to develop an online workshop for schools – I’ll come back to that in a minute – so that will knock out much of 2014. And beyond that… well, I’m hoping 2015 will be his year!

I’m even wondering whether he might make his début in an eBook, I’d love to know what readers think of that idea…

 

Last year you launched the “Allergy Adventures Passport Pack” at St Thomas’ Hospital in London and this is now also being used at the James Paget Hospital in Great Yarmouth and by Dr George du Toit in his private allergy clinic. Can you tell us a bit about the passport pack? Are there plans to introduce it in other hospitals across the country?

Allergy Adventures passportThe idea for the Passport Pack came about after I saw how stressful and scary children can find a trip to the allergy clinic. Often parents aren’t really sure what will happen, and so families arrive at the hospital feeling anxious, with vague thoughts about being pricked on the arm and maybe having a reaction.

I wanted to create something that would appeal to children, explain clearly what would happen to them during their visit, and also instills a proud sense of achievement on completing their journey. When children arrive, they are given their own Allergy Adventures® Passport and as they visit each part of the clinic – height, weight, dietician, etc – their Passport is stamped by the nurses and consultants. At the end of the visit they receive a reward certificate and a sticker.

I’m currently working behind the scenes to introduce the Allergy Adventures® Passport Pack into other hospitals, but I’ve also had some great support from parents who have been mentioning the Passport to their clinics. That’s what happened at Great Yarmouth; a parent asked her hospital to consider the idea, the medical staff got in touch and now the Passport is up and running. Never underestimate parent power!

Your online workshop for schools sounds like a fantastic project – tell us more!

Yes, this was huge news for Allergy Adventures! Recently I was awarded a grant by the Wellcome Trust to develop an online, science-based workshop for schools, to help improve awareness and understanding of food allergy in schools.

The workshops will include fun, educational videos, which will provide the focus for classroom activities. Through a series of cool experiments and explorations, children will learn facts about the human body, such as how the immune system reacts to a threat (allergens) and how medicine can be used to counteract a reaction. Children will also learn key safety points too, to help keep friends with allergies safe.

I’ll be working with a team of experts to produce the workshop, including paediatric allergy specialist, Dr Adam Fox, and psychologist, Dr Rebecca Knibb. It’s a great opportunity to build awareness and understanding about food allergies in schools, and will hopefully lead to children with allergies feeling less excluded.

It’s very much in the early stages, but I’ll be keeping everyone informed of my progress on Twitter and Facebook!

And whilst the workshop is developed you have an educational safety poster for schools? Where can people get hold of a copy for their school?

By visiting: http://shop.allergyadventures.com/products/allergy-poster

Allergy Adventures poster

Finally, you are currently carrying out some research into cooking lessons, food allergies and schools? How can Nutmums.com readers help?

They can head over to my blog – HERE – and answer my very short questionnaire. Or they can email the answers to me at: hello@allergyadventures.com. The results so far have been fascinating, and there’s a clear need for teachers, at both primary and secondary level, to be more aware about food allergies.

Thanks so much for talking to us, Hailey!

Contact details

 

For a review of the Allergy Adventures “My Seaside Adventure” nut free storybook, click here.

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This post was originally published as a guest post for Allergy Aware Kitchen, see Biography below.

My name is Louise and I have two children, a son (aged 3 ½) who has a severe peanut allergy and a daughter (almost 2) who, touch wood, has no known allergies as yet.

The first reaction

We discovered my son’s peanut allergy the hard way. When he was 20 months old he took a bite of a peanut butter cookie. It was the first time he had knowingly been given peanut. He suffered an allergic reaction that was immediate and severe. His lips puffed up and his eye swelled shut. His breathing became loud and wheezy.

Luckily, his grandmother, a retired nurse, recognised the signs of anaphylaxis and dialled 999. The early response paramedic arrived within minutes with the life saving adrenaline injection. However, when he was taken to hospital, the doctors became concerned that the swelling in his throat was not subsiding. They made the decision to induce him into a coma, so that they could insert a breathing tube, before his throat swelled closed. He spent three days in intensive care, on a life support machine, whilst the doctors waited for signs of a “trickle” around the breathing tube, which would show them that the swelling was going down.

Fortunately, he recovered well and by the end of the week he was back home playing with his Lego and watching CBeebies. You would not guess by looking at him what he had been through. However, then began our task of learning to live with a life threatening nut allergy…

How does a severe food allergy change your life?

My son’s peanut allergy impacts on all areas of our family life. That may sound extreme: I’m not saying it dominates. However, it does add an extra layer of organisation for everyday things. For example:

  • Wherever we are and whatever we’re doing, we always have to have my son’s emergency medication to hand. On entering the world of allergies, we had to learn how to recognise the symptoms of an allergic reaction and make sure that we know the drill for what to do in an emergency (including adminstering his “EpiPen” adrenaline auto-injector). The same is true for anyone who cares for our son: babysitters, nursery, school, his friends’ parents when he goes for a playdate. They all need to be trained in what to do.
  • We have to check EVERY food label for the mention of nuts. On doctor’s advice, we avoid all types of nuts. So, if a food label mentions “peanut” or any other type of nut in the ingredients list, then my son doesn’t eat that food. We also avoid any foods which have a nut warning label (for example, “may contain nuts” or equivalent wording).
  • Going out for the day? As well as carrying his emergency meds, I need to make sure I have some safe snacks too, in case there are no nut allergy friendly options when we are out and about.
  • Choosing a school? I need to find out which are food allergy savvy and check they have safeguards in place to protect allergic children and deal with a reaction, if it happens.
  • Booking a holiday? What’s the airline’s peanut policy? Do I need a GP’s letter to carry my son’s EpiPens onboard? Does the resort have a supermarket where I can buy safe foods? Where’s the nearest hospital? Do I know the emergency number for calling an ambulance and can I report “anaphylaxis” in the local language?

Saying that, despite his peanut allergy, as a parent, I want him to have as normal a childhood as possible. Yes, we have to be careful. However, I feel strongly that his allergy shouldn’t prevent him from going to, for example, parties, playdates and restaurants. Although it may require more planning and organisation, I don’t want him to be deprived of those experiences. We just have to figure out a safe way of achieving them.

Eating out with a nut allergy

Going to a restaurant can often feel like a fairly daunting prospect. As tourists in Keswick one lunchtime, the thought of going into a café or tea room and having the “nut chat” (the conversation with the manager where I ask if they can cater for my son) just felt too exhausting a prospect. We ended up buying supermarket bread rolls and a packet of ham and sitting on a bench eating a bland, makeshift picnic.

What would have made things easier for us that day? Maybe if we had spotted a chain restaurant which had a reputation for being allergy friendly, or if one of the cafes had a sign outside saying “Dietary requirements? Just ask!”? I’m sure that would have lured us inside and we might have forked out £10 a head, rather than a few pounds between us for bread and ham.

The perfect eating out experience?

One of our first attempts at eating out post peanut allergy diagnosis was at our local Pizza Express. Having explained about my son’s allergies to the waitress, she told me that one of the chefs had a severe nut allergy, having recently suffered anaphylaxis to some soft cheese which contained nuts, unbeknownst to him. Although you wouldn’t wish a food allergy on anyone, that was music to my ears. If anyone was going to “get” the need to serve my son a nut free dish, a nut allergic chef would.

So, short of there being a nut allergic chef, here are my suggestions for restaurants as to what would happen on an ideal visit:

  • No blagging! Firstly, I should say that if you genuinely CAN’T cater, please say! I’d much rather be told “we’ve got a tiny kitchen and there are nuts everywhere” than someone say “yeah, yeah, yeah… no problem” and then serve my son something that isn’t safe.
  • Website allergy info. Wherever possible, I will research restaurants online before venturing out. My eyes will light up if I see a statement along the lines of “Please talk to us about any food allergies, full information is available”. A downloadable allergy guide, detailing which dishes contain which allergens, is also extremely useful. Although this would only cover intentionally added ingredients and I would still need to talk to the restaurant about cross contamination, the fact there is an allergy guide hints that the restaurant is alert to its allergic customers.
  • A confidence inspiring greeting. On arrival at a restaurant, my stock opener is “my son has a severe nut allergy, is this something you can cater for?”. The most confidence inspiring response I can receive to this would be “Yes, many of our dishes have no nuts in the ingredients and we are well used to cooking for people with allergies. Come in, and I will ask the manager / chef to come and talk to you.”
  • Recommending a safe option. When we talk to the manager or chef, I don’t expect them to say that every item on the menu can be made nut safe (although obviously it would be fantastic if that were the case). I think it’s perfectly reasonable to tell me, for example, “these dishes are fine, but avoid anything made on the grill”, if that’s where there’s a risk. If we’re only offered one or two nut safe options, I am grateful… even if it means my son eating pasta and tomato sauce for the 50th time running.
  • Reassure me about cross contamination! After we’ve identified a nut free meal, I need some reassurance on how that will be prepared. It’s fine to tell me “we can’t guarantee that any food is 100% nut free”. One manageress explained that whilst there were nuts in the kitchen, these were kept in sealed containers and that my son’s meal would be prepared in a separate area. I was reassured. I’m happy if you tell me (1) there are no nuts in the ingredients and (2) you understand the need to use fresh pans and utensils and everyone will know that nuts must not come anywhere near this meal.
  • Then keep reassuring me… When we get to the point of placing an order, in the most confidence inspiring restaurants, the wait staff will tell me (before I’ve had a chance to ask!) that they’ve made a note of my son’s allergy on their pad. Once our order has gone into the kitchen, I’m really appreciative when our waiter comes back over to us and says something like “the chef knows about your son’s nut allergy and that the [tomato pasta] needs to have no nuts”.
  • Nut free desserts? When it comes to ordering dessert, if the waiter/waitress recommends a nut free option without me having to ask (or even comes over and says “I’m sorry, there are no nut free dessert options”), that makes me feel like the restaurant is on the ball and is still keeping my son’s allergy in mind.

Our experiences of eating out with a nut allergy have certainly varied. All too often, on entering a pub/restaurant/cafe, we’re met with an expression of raised eyebrows teamed with puffed out cheeks then a nervous comment which tells me they’re not willing to cook for my son. We then need to search for somewhere else or my son eats a packed lunch whilst everyone else tucks into a restaurant meal.

However, on those occasions where an eatery can provide a safe meal and their service does inspire confidence, I am incredibly grateful and will go home and sing their praises on Nutmums.com and social media. That nut allergy friendly restaurant will then become a regular haunt and the place I recommend when family or friends are thinking about arranging a get together.

How things might improve from December 2014

At present, if a prepacked food or alcoholic drink contains one of the top 14 food allergens (or an ingredient made from one of them), this must be declared on the label. The “top 14 allergens” include peanuts and, separately, nuts. At present, allergen information does not have to be provided for foods sold loose and when eating out. However, this is about to change.

On 13 December 2014, the EU Food Information for Consumers Regulation will require cafes and restaurants to provide information on food allergens. This could be done in writing (for example, on a menu or a blackboard) or the information could be given verbally by a member of staff. So, if I go into a restaurant, they should either be able to tell me which dishes contain nuts as an ingredient, or point me to where the allergen information is written down.

Whilst the new rules are an improvement in that restaurant staff will not be able to simply shrug and claim not to know what a dish contains, they unfortunately only cover ingredients which have been intentionally added to the recipe. They do not cover accidental cross contamination. So a restaurant will still be able to say “that pizza doesn’t have any nuts in the ingredients… but our kitchen is tiny and there are nuts everywhere!”. We will still have to have the “nut chat” on arrival, to seek some reassurance that they understand cross contamination.

Even without addressing cross contamination statements, the new regulations mean all cafes and restaurants are forced to think more about allergens, and therefore hopefully in turn become more allergy aware generally. I think a likely key factor in the legislation’s success is the extent to which consumers demand the allergen information to which they are entitled. If we report those restaurants who continue to meet requests for allergen information with a shrug and a “dunno”, then standards are likely to improve.

In summary? The new rules are a welcome step in the right direction to make eating out with an allergy a safer, and therefore more relaxing, experience.

Biography

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I thought I had my head round the fact that nut allergies have a far reaching impact on family life. Then I moved house last Friday. I hadn’t given a second thought to the “nut allergy considerations” of the move. Frankly, I had enough to think about organising removals companies, change of address letters and the like, given we had a little over a week between exchange and completion.

So this is just a very quick note to mention three points which took me unawares, in case they are handy for anyone to bear in mind when moving house (or even when renting a holiday cottage or similar):

  1. Moving into the kitchen: what’s been in those food cupboards before? What’s been cooked in that oven? There was a study last year that concluded “Peanut allergen is very robust”, having discovered that peanut residue stays on a surface for 110 days. So stock up on cleaning products and allow yourself extra scrubbing time!
  2. Our new house has a second house in the garden. It’s not so much a bird table, more of a bird annexe. It’s monstrous. Did I think to check for hanging bags of peanuts beforehand? Nope. Obviously, this was something for us to check (and not something you’d ever expect a seller to think about). However, had we thought on about this, it would have been very easy to ask the seller to take any bird feed with them. (For other unexpected sources of peanut, see this handy list on Bestallergysites.com)
  3. Got a nut allergic child, maintain a nut free home, right? Whilst unpacking a box, I found a half eaten chocolate chip cookie among the packing paper. We haven’t had chocolate chip cookies since those days of blissful ignorance pre-peanut allergy diagnosis, when my one-year-old would eat Maryland choc chip and hazelnut cookies like they were going out of fashion. It hadn’t occurred to me to mention my son’s nut allergy to the removals men… or about them snacking as they worked. Next time, I’ll remember to mention the need to keep the house a nut free zone. Not that we’re ever moving, ever again…
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Do you avoid products with precautionary labels (“may contain nuts” or equivalent wording)? We do. A fellow nut mum recently asked me why this was, as her doctors had advised that she could safely ignore such warnings. I thought it would be worth explaining my thinking.

Our doctors’ advice

We were given the same advice when my son, D, was first diagnosed with a peanut allergy. Our allergy doctors told us (1) to check the ingredients list on food labels, to make sure there was no mention of peanuts or any other nuts and (2) that we could disregard advisory or precautionary labelling (“May contain nut traces”, “Produced in a facility that also processes nuts” and so on).

I think the logic behind this advice is that:

  • The risk of a food labelled “may contain” containing enough peanut to trigger an allergic reaction is extremely slim.
  • As a side point, there is a concern that if we cut out “may contain” foods too, D could have a restricted diet.

Furthermore, given “may contain” labelling is completely voluntary (and will continue to be so when the new labelling regulations come into force in December 2014), is a product labelled “may contain nuts” any more dangerous than another product where the manufacturer knows there is a cross contamination risk, but chooses not to flag this on the label?

Cross contamination: assessing the risk

In the UK and EU, the ingredients list on prepacked food must be accurate. If even the tiniest amount of peanut (for example) has been intentionally added to the recipe, then “peanut” should be listed in the ingredients.

“May contain” labels are intended to alert consumers to the possibility of accidental cross contamination during the production process. So, for example, if your supposedly nut free breakfast cereal is produced in the same factory as nutty granola, the manufacturer might put “may contain nuts” (or an equivalent warning) on your cereal packet.

A few points worth making about “may contain” labels:

  • They are voluntary. If there is no warning wording, you cannot safely assume there is no cross contamination risk.
  • If the manufacturer chooses to use a “may contain” label, you have no way of knowing whether the risk is genuine or whether the manufacturer is just trying to cover its back.
  • You cannot gauge the level of risk from how the warning is phrased. For example, a product labelled “Not suitable for nut allergy sufferers” is not necessarily more high risk than one labelled “May contain nut traces” (and vice versa).

An opposing view from the Anaphylaxis Campaign, Ireland and the University of Nebraska

In the early months following diagnosis, we followed our doctors’ advice and focused only on the ingredients list. However, as I touched on in my recent post on Oreo, our attitude to “may contains” has evolved. When I started Nutmums.com in January 2013 (and particularly when I joined Twitter), I began reading a lot more about food allergies and allergen labelling law. I realised that many allergic people avoid products with advisory labelling. In fact, it seemed as if we were in the minority for not having sworn off “may contain” products.

I then discovered that the Anaphylaxis Campaign advises people to “heed the warnings every time” and that ignoring the warnings is “risky behaviour”. Two recent studies have further underlined this approach:

  • An Irish study tested 38 food products with peanut or nut “may contain” warnings. Peanut was detected in 5.3% (2 of 38) of the products tested. The study concluded “Although it appears that the majority of food products bearing advisory nut statements are in fact free of peanut contamination, advice to peanut allergy sufferers to avoid said foods should continue”.
  • Similarly a study by the University of Nebraska discovered detectable levels of peanut in 8.6% of foods labelled “may contain peanut” (or similar advisory wording). This study concluded that “Peanut-allergic individuals should be advised to avoid such products regardless of the wording of the advisory statement”.

In the UK, the Food Standards Agency have:

“been working to reduce the unnecessary use of ‘may contain’ labelling and to provide clear advice to the public on why these labelling terms are used and what they mean.”

The FSA hopes to publish the outcome of this work shortly.

Peanuts, murderers and lightning bolts

I read recently in the Metro that “People with a food allergy are more likely to be murdered than to die from their condition”. A comforting statistic? Not really. As to my mind, psychopaths can come after anyone, but my son’s one of those with a target on his back where peanuts are concerned.

Similarly for the adage that you’re more likely to be struck by lightning than die from a food allergy. If you’ve got a peanut allergic child with a prior history of severe anaphylaxis, it kind of feels like your kid is the one with the 50 ft conducting rod pointing at them.

It’s also not just about death (although, it goes without saying, that’s the main overriding worry). I don’t want my son to have ANY kind of allergic reaction, if I can possibly help it. I don’t want him to be on life support again, even if within a week he is back home building Lego and watching CBeebies as if nothing has happened. I don’t even want him to spend one night on the children’s ward for observation after a mild reaction, IF I can help it.

The statistics about murderers and lightning bolts might offer me some perspective on his allergies generally. However, they’re not something that would influence my decision on may contains. Avoiding a food labelled “may contain nuts” is something I can do. It’s an element of this whole food allergy business that I can control. There may only be a slim chance that a food labelled “may contain nuts” actually contains enough peanut to trigger a reaction. It may therefore follow that the chance of a life threatening reaction from a “may contain” product is incredibly small. But it’s not outside the realms of possibility and it’s a risk that’s easy to avoid.

Why we avoid products labelled “may contain nuts”

In summary:

  • If a manufacturer has decided to state that its product “may contain nuts”, I take that statement at face value and avoid the product.
  • Even if the chance of a reaction to a may contain product is extremely unlikely, that chance still exists.
  • We’re only dealing with a nut allergy, so, whilst it may mean more time spent searching for nut free options, I don’t feel D has a restricted diet by avoiding products labelled “may contain nuts”.

So, for now, for us, any product with a “may contain” label doesn’t even make it as far as the shopping trolley. If there is no warning wording, I then have to resort to checking the manufacturer’s website or emailing their customer services team.

For me it comes down to this. Would I forgive myself if I knowingly gave my son a product labelled “may contain nuts” and he had an allergic reaction? No. Would it be any comfort whatsoever, if a doctor then told me what had happened was “incredibly rare”? Precisely.

So, until the law on advisory labelling is improved, we will continue to avoid “may contains”.

Sources