What’s it like to live with a food allergy? In our house we love eating and cooking a variety of food, but there are some foods we haven’t eaten for over 15 years and will never have in our house. This is because one of our girls has a peanut allergy.
It is a feature of our age that a growing percentage of people around us seem to have a food allergy of one sort or another. We are grateful that where we live a food allergy is a fairly straightforward thing to manage, especially when you compare it to the chronic long term issues facing young people we know, things which require constant management just to keep functioning. All we have to do is avoid peanuts and everything is fine.
Having said that, avoiding those foods can sometimes be easier said than done, and managing an allergy can feel like a whole new world, especially at first. I wanted to share some of the lessons we have learned along the way as we have lived with a food allergy for almost 15 years.
My first trip to the supermarket ended in tears
The first time our eldest daughter tried peanut butter it was thinly smeared on a small square of toast, with both my husband and I watching very closely as she ate. Almost immediately, tiny red bumps like flea-bites appeared all over our 14 month old daughter’s face.
Several trips to doctors and an allergy clinic followed. The tests showed low level allergies to a number of common allergens such as egg, dust mite, and some animals. Those tests also showed a severe allergy to peanuts with a potential risk of anaphylaxis.
Getting your head around unexpected news like this can take some time as you adjust to the new reality. Funnily enough, one week later we discovered half way through my pregnancy that we were expecting twins. That was a big week!
Now we had to come to terms with this new reality, starting with emptying our house of all nut products. I remember my first trip to the supermarket being so frustrating as I took such a long time to read every label on every product, trying to navigate the minefield of the biscuit and cereal aisles, crossing things off the list. What does “may contain traces of nuts” actually mean, especially when you read it on a packet of frozen blueberries or something equally unlikely to contain nuts? I was almost in tears at the end of that shopping trip thinking “what can I buy?” and “what will we eat?”
New challenges and a new normal
Quite a few years and many shopping trips later, we know exactly what we can and can’t have and how to find alternatives, and I can speed read ingredient labels with the best of them.
A similar thing has happened with each new challenge along the way – at first it seems a little overwhelming, so many questions, so much new information to digest to educate yourself and those around you. Sooner or later you get used to it, and the situation that was new and scary at first, now becomes the new normal.
I have noticed this each step of the way when I think about “allergy milestones” such as going to birthday parties, starting school, leaving for camp, etc.
The latest “allergy milestone” for our daughter is going out for meals herself with friends and family. She will have to speak up for herself and think ahead in each situation, to avoid the risk of exposure and to manage that risk if she has to face it. I’m sure she’ll conquer it in her usual style.
Some things are hard
Life with an allergy has some challenges. Everywhere we go, so does the emergency medication. We have had to train all our girls from an early age to be super careful about what they eat, as some things can make people very sick. A certain level of anxiety can creep in and be hard to shift, both for us and for our daughter. It can also be a constant and uphill journey to educate those around us and be our own “food police”, which at times could get awkward when kind and well meaning people were just trying to feed us.
The safest food option for a person with an allergy is to prepare all your own meals from scratch. Most of the common allergens could easily be avoided if we never ate packaged, takeaway, or other people’s food. Fortunately, I really enjoy cooking, and I do think home cooking is great for all sorts of reasons, but it can also be time consuming. So much more convenient to buy something in a box!
I really noticed this when we had a toddler and baby twins who needed home prepared foods wherever we went. There was no relying on purchased snacks or (most) other people’s food. I won’t tell you about the only time I ever threw anything across the room in frustration: it was those little containers that needed filling with food almost every time we left the house.
Learning sobering lessons
Because of my work, I am the type of person who is both willing and able to read inquest reports. With sadness I have read through the findings and recommendations of several inquests into allergy related deaths. I noticed some common threads:
- Communication about the allergy started well but that communication chain wasn’t completed to the pointy end of the risk
- Not carrying emergency medication at all times
- Not speaking up and asking questions, or making clear to friends, colleagues and restaurants the significance of the allergy
Some things are helpful
- Friends and family who remember that we live with an allergy – thank you!
- Going places where there are nut free alternatives on the menu
- Clear labelling on food so we know what to avoid
- People who ask questions so as to find out which foods will be safe
- Schools with an awareness and a willingness to manage allergy risks
- A growing awareness of allergies in general, which means many places are more likely to have allergy prevention and management strategies which reduce the risk of a reaction for anyone with an allergy
Life then & now
I bought some eggs from the supermarket on the way home from the allergy clinic when our daughter was five and we heard the good news that she had grown out of her egg allergy. The following week we got ourselves some backyard chickens. It can be a challenge to make a nice cake without eggs until you find a recipe that works and have had a little practice.
After years of carefully avoiding all traces of nuts, our daughter has slowly but surely expanded her range of safe nuts, starting with the low-contamination risk of the macadamia nuts still in their shells at the farmers market. All other nuts are now safe to eat, which is fantastic. I am actually sitting here snacking from a bowl of salted pistachio nuts while writing, and I love including almond meal and many other nuts in our cooking.
I have always tried to take the approach that there is always an alternative to the food we can’t have. For example, some brands of chocolate are off the menu, but we’ve discovered that the more upmarket and very tasty one is absolutely fine. We can’t have peanut butter, but I make my own almond butter with roasted almonds and it’s delicious! We rarely eat out, but we eat very well at home. We regularly update emergency medication, and have gratefully never had to use it.
Now our “baby” is a happy and healthy teen with a bright future ahead of her (and an Epipen and antihistamine in her bag).
You are not on your own with a food allergy – there is a lot of helpful information and support out there. For example, the allergy support charity Allergy & Anaphylaxis Australia have been a really valuable source of resources for our family. They produce the booklet about preparing for camps and school trips pictured in the photo above.
Parts of this post originally appeared in my article in the Canberra and Region Multiple Birth Association (CARMBA) newsletter “Two Up” in 2004, and is reproduced with permission. CARMBA and other regional organisations like it are made up of volunteers helping each other with information and resources, and advocating on behalf of families with multiples.
(the photos are of our girls, then and now)
Do you live with a food allergy? What are the lessons you have learned along the way?
Walnuts stock photo under CC0 license from pexel.com