One of our sons has a severe allergy to all tree nuts including coconut and pine nuts. (Some hair-splitters may point out may or may not be tree nuts). The bottom line though is he can’t eat any of them because they could make him very ill.

The recent tragic incidents involving Owen Carey and Natasha Ednan-Laperouse centred around food mislabelling. And as a parent of a child who has a severe nut allergy, I feel so sorry for the young people and families in question. In addition, stories such as theirs feed a sense of nagging disquiet for the well-being of our own child.

Coupled with a recent holiday packed with challenges on the food front, these recent occurrences have prompted me to write this blog.

Discovery

We discovered our son’s nut allergy when he was three years old and sampled some small pieces of nuts. And by small, I mean the size of your little fingernail. Within 10 minutes, he was struggling to breathe and our world changed. One ambulance trip later, RAST tests, and armed with EpiPens and anti-histamine, our relationship with food had to adapt overnight. We already knew he had allergies to dust mites, pollen and some animal hair. Throw a food allergy into this mix and things became a whole lot harder.

Over the next month, his anaphylaxis was followed by a severe asthma attack which left him on a nebuliser for an entire weekend. After which his little body was dogged by a huge eczema flare-up, the sores of which became infected with MRSA. This, in turn, was treated with strong antibiotics which stained all his little milk teeth brown. To say we were strung out was an understatement. Slowly and steadily, over the next few months, we all found our feet again and built our new normal.

Not all nuts are equal

Some nuts are worse than others for him but none good. If he were to eat brazil nuts or walnuts, for example, he is likely to have a severe anaphylactic reaction. We’ve been warned that future episodes are likely to be more severe than the first one, so we’d rather never go there. Other nuts such as hazelnuts also cause reactions. To date, these have been less severe although they will still make him ill.

We and he, as he grows older, have to make sure that there are no tree nuts present in any food or drink he consumes. We are now well used to this. Seasoned in the challenges this can present, we cook from scratch and do stacks of home baking. We know labels and supermarket stocks very well. You have to.

Eating Out

But whenever we eat out or head off on a holiday, being a nut allergy sufferer becomes much more challenging.

We make a mean cheese butty but they do become boring after a while. On occasions when we do eat out, we always, without exception, inform staff about his nut allergy. And we always ask about menu items if ordering food. You can feel embarrassed doing so but it’s a must-do.

We’ve been refused service (not often). On occasion, we’ve chosen to leave an establishment when we’re unsure whether he would be able to eat safely there. And there are certain types of restaurants where we never eat because the risk is just too high. Even a trip to a pizza restaurant has its’ challenges.

We don’t think his nut allergy should define him so we do choose to eat out. We have our favourite places. The ones where the staff are always friendly and thorough, where no questions are considered to be a problem. And from time to time, we’ve had brilliant service where people have gone the extra mile to make sure all is well.

Parity

We have also tried very hard to make sure that our son isn’t treated any differently because he has an allergy. When he was small, I’d make sure his infant school had a stock of treats/snacks in just in case someone in his class brought in a birthday cake. We choose to eat in places where we know he will be well catered for. And I often bring home bake with me so he can enjoy a cake alongside his younger brother who does not have a nut allergy. But a food allergy is a cruel allergy because food is such a staple of everyday life and should be embraced with pleasure, not worry.

Looking to the future, as he grows more independent, we have to take confidence in the knowledge that we’re raising him to make sensible, informed decisions. Enabling him to manage any risks himself. But on wobbly days, as a mum, I do find myself worrying about what might happen. And I know my husband feels the same.

Living with a child with a nut allergy creates stress, concern and at times, cold spine-tingling fear. You have to rise above it but it never completely goes away.

Holibobs

Going on holiday can be a significant challenge. Since our son was diagnosed some ten years ago, we have only ventured abroad twice. Language and cultural barriers seem endlessly high. We used to travel extensively but it’s really not an easy option at the moment.

This was reiterated to us this summer when we headed off to La Gomera in the Canary Islands.  We encountered countless issues with mislabelled food, inaccurately labelled food and confusion about what is a nut, a seed or a spice. And this was despite the hotel where we were staying having labels on every dish in compliance with the EU labelling law on allergies. The right boxes had been ticked.

But in truth, it was exhausting. Every meal had to be carefully chosen. He was fed up – it’s not cool having your mum and dad helping you choose food when you’re 13 and a half. I had a hard knot in my tummy every mealtime. Don’t get me wrong, the hotel was great. La Gomera was a fascinating destination. But it wasn’t quite the relaxing holiday I was hoping for.

Substitute

It is worth pointing out that you could easily substitute the term “nut allergy “ for dairy, egg, or gluten allergy and many more. The point I’m making is that living with a child with a severe food allergy is far from easy for anyone concerned – child or parent. Yet it could be made so much more manageable with careful thought and understanding from food suppliers and producers.

Until you have to see the world from the perspective of an allergy sufferer, it isn’t easy to really get what it means on a day to day level. You could just never eat out, never push the boundaries. But that’s unrealistic and unsustainable.

Education

Much more needs to be done to make sure that establishments selling, packaging and serving food are aware of the need for clear, accurate labelling. And to educate them on how to adopt some simple, sensible practices. Here are some examples:

• How many times do you watch all flavours of ice cream being served with the same scoop and thus cross-contaminated?
• We often see cakes and biscuits with nuts on stacked with ones with none, making the risk of cross-contamination too high and off the menu.
• Do you know that peanuts are not nuts? Nor are sesame, pumpkin or sunflower seeds; likewise nutmeg or cinnamon and granary bread for that matter and nut allergy sufferers can eat them.
• Many cafe menus still have no allergen information (though this is improving). And staff often don’t know the answers to simple questions about ingredients.
• How many labels have been written to protect the food manufacturer or supplier rather than the consumer? Leaving the person trying to purchase “safe” foods in a quandary of having to take risks?

Don’t eat out

You could counter the above by saying that someone with a food allergy simply should not eat out. But over 10% of the UK population now have some element of food allergy and the percentage is growing, so this answer will simply not do. It is also discriminatory. And if we can safely produce allergy-friendly food at home, then it should be equally possible elsewhere.

Broad brush

There is too much labelling that guards against litigation and provides easy broad brush legal cover. Marks and Spencer is a prime example – a large proportion of their foodstuffs carry a “packed in a factory which also handles nuts” warning. Even products such as tomato ketchup and creme caramels! We think that this is in part because slapping on an allergy warning is an easier approach instead of addressing their production methods. And this should be challenged. Whether that’s right or wrong, we don’t buy much of their lovely food because they make it too hard to do so.

“May contain”

The “may contain nuts” label applies to foods which don’t contain nuts but have been made on a production line which also handles nuts. Here there is a chance of cross-contamination so there is a degree of risk. Again, the label protects the supplier and doesn’t help the consumer. Does it or doesn’t it contain nuts? We usually choose to avoid foods bearing these labels to minimise risk. Though it all depends on what the product in question is.

“Packed in a factory”

The “packed in a factory which also handles nuts” is a label to which we tend to apply some logical thinking. Is it food which would usually have nuts in it? No? Then we may buy it. But we think hard before doing so.

This  “packed…” and “may also contain…”  if followed to the letter means that for our son, like many food allergy suffers, many foods are excluded. We fall back to home-bake, packed lunches and safe choices. It does keep him safe but these labels limit the diet of an allergy suffer and at times, the enjoyment of food. If you produce the same food safely at home, then in principle, the same should be possible commercially.

The sensible advice from his paediatrician is that the best medicine is avoidance. Largely because you can’t be sure.

Better education

Surely this doesn’t have to be the case. Perhaps some of the big brands out there should look again at their production methods and labelling practices. Consider them from the perspective of an allergy sufferer who needs clear, reliable direction and reasonable choice. Not just from a legal perspective.

Owen Carey’s family is campaigning for better labelling in food restaurants which we completely agree with. Natasha Ednan-Laperouse’s family have already achieved great results from their campaign to ensure that pre-packaged food is clearly labelled for ingredients and allergens. Both are fighting to make sense of a circumstance that they should never have found themselves in and are doing an amazing job.

Reducing the risk

But I would take thinking further. Having seen allergy labels in play this summer which ticked boxes but were inaccurately and potentially lethally applied was frankly frightening. The potential for harm is huge.

Unless individuals working with food understand food allergies thoroughly, and the ingredients they are working with, labels alone are not a reliable tool. If, for example, someone does not understand that a pine nut is a nut, that buttermilk is a dairy product and that you can’t mix up gluten-free bread with standard bread, they can’t accurately label the food they make and serve. This ignorance increases the margins of error and the risk of another avoidable and needless death.

If a requirement to label foods was accompanied by compulsory food education, this would go some way to make living with a child with a food allergy a little easier and safer.

In the meantime, we continue to ask when we eat out and cook the majority of our meals from fresh. We encourage our son to take a real interest in food and how it is produced. He now navigates his secondary school canteen, where the staff know he has a nut allergy. He’s out and about with friends (and his Epipen) and starting to make his own decisions and food choices. He’s grown out of his asthma, likewise, his peanut allergy which is fantastic but his nut allergy is there to stay.

And we have to trust that between the choices that he and we make and those producing and packaging up the food he eats, that we are collectively getting it right.

ItsLello | 13.10.19