This week’s interview is with Ellie Harwood, a mother of a little girl with multiple allergies – eggs, wheat peanuts, milk protein and soya, coconut, legumes, barley and lamb and more. Thank you Ellie for taking the time to talk to me about living with these allergies.
How old is your little girl and what allergies does she have?
My daughter Deryn is 12 months old. She has IgE mediated allergy to eggs, wheat, and peanuts, plus non-IgE mediated allergies to cow’s milk protein and soya. She’s also intolerant to coconut, most legumes, barley and lamb, amongst other things. We’re still at the start of the journey with regard to identifying and managing her allergies, which means she’s currently following a fairly restricted diet.
How did you first find out your daughter had these allergies?
Deryn had severe colic and reflux from birth. Due to her low birth weight she was topped-up with cow’s milk formula in hospital – she projectile vomited it back up each time. Her first few months were mostly spent crying, vomiting or feeding, non-stop, around the clock. Looking back she had all the classic markers, including persistent rhinitis, puffy shadowed eyes, eczema patches, and mucous in her nappies. Despite going back and forth to the doctor and health visitor I was told it was normal for babies to cry and prescribed antacid medication for her reflux.
It was only when I started weaning her that the extent of her allergies emerged. A teaspoon of plain yoghurt caused her to be sick and hives to appear on her face, followed by days of upset stomach and an eczema flare. A teaspoon of scrambled egg led to immediate full body hives and facial swelling, followed by an ambulance ride to A&E. I began a food diary and as I breastfeed, a strict exclusion diet for myself. Within a fortnight Deryn was like a different baby. Her reflux totally disappeared, she completely stopped being sick and no longer needed her medication. She stopped crying, smiled all the time. Her nappies became normal, her skin cleared up and is now as smooth as a peach. Her eyes shone bright and clear with no shadows or puffiness.
At what age was Deryn when the allergy was first diagnosed?
We had to wait 3 months from Deryn’s A&E admission to see the dietician and allergy team at the hospital. In the meantime I kept methodical food and symptom diaries and introduced new foods very cautiously. She was 9 months old when we had skin prick testing at the hospital. This identified an IgE mediated allergy to peanuts, and the egg and wheat allergies were confirmed. Her soya and milk allergies don’t show on skin prick tests because they’re non-IgE reactions, so the paediatrician used the diaries and photos I provided to diagnose these. We’re currently waiting for RAST blood tests to see what other allergies she may have, and she’s also due to be tested for coeliac disease soon.
‘It is perfectly possible to eat healthy, delicious food even on a free-from diet.’
What did you find most difficult about putting her on a free from diet?
Managing Deryn’s diet can be very stressful because getting it wrong can make her seriously ill, and failing to balance everything properly could affect her long-term health and development. Fortunately I breastfeed her so I know she gets a lot of good nutrition from that. The fact that milk, wheat and soya are added to pretty much all processed food means I have to make everything she eats from scratch. This is obviously time-consuming, expensive and requires a lot of organisation. I do struggle to trust other people enough to let them feed her because it’s so easy to make mistakes. As she’s getting older I am having to say no to her when she wants to eat what everyone else has, but she’s far too young to understand why. Fortunately I’m avoiding most of her allergens too, so I know exactly what she’ll be going through as she grows up with these allergies. Life isn’t going to be easy but it is perfectly possible to eat healthy, delicious food even on a free-from diet.
Sometimes it can be quite difficult to diagnose and get support for allergies. Did you have good support from your doctor/allergist?
Fortunately we have an excellent GP who has provided great support and been very thorough in referring us on to further support. The trouble in our area is the incredibly long waiting times to see a specialist after you’ve been referred. You’re given so little information and advice on what to do, if it wasn’t for the internet I’m not sure how I’d cope. There are a couple of great Facebook groups to support parents of children with allergies. The CMPA Support for Breastfeeding group is particularly helpful because it helps you manage your own free-from diet as well as your child’s. And it’s nice to know you’re not the only one longing for an ice-cream or a bar of chocolate from time to time.
I found our first appointment with the paediatric allergist quite difficult though. He was very ill-informed about breastfeeding and really pressured me to stop, saying it had no nutritional value and I was just feeding her for my own benefit! Fortunately I work as a research and data analyst and have done a lot of reading into the benefits of breastfeeding beyond the early weeks, so I had to challenge his advice and work with our dietician to managing both mine and Deryn’s diet to ensure we’re both healthy. We’re currently waiting to see a different allergist, as our health board is in the process of appointing someone new to replace the first doctor we saw.
How do you handle parties for your little one?
We’ve recently started going to a lot of birthday parties as my daughter and her friends are all turning one. I just take all her food and feed her separately from the other children at the moment. We leave the room when the cake is being cut! We had a picnic for her first birthday, with an amazing free-from cake that everyone could enjoy. I have no idea how we’ll cope as she gets older, I hope she will be able to understand why she can’t have what everyone else is eating and will enjoy her own treats instead. Where possible I’ll try to distract her when the food part of the occasion is taking place, but I accept sometimes we’ll probably just have to miss these occasions out.
What is your favourite free from product?
Deryn loves hemp milk, it’s so nutritious and full of calcium and good fats, so we buy a lot of that. The Dietary Specials white rolls are the only wheat-free, soya-free, egg-free bread products I can find, and she loves to have a little sandwich so I am very grateful they exist. I’m on a soya-free vegan diet and don’t get many treats, but love booja booja chocolates and vegusto cheese – these two products make it all bearable for me!
Is there one product you wish you could find for your child what would it be?
I wish you could buy an affordable, tasty wheat, milk, soya, legume and egg free loaf of bread.
Do you have a supermarket or health store nearby which stocks the foodstuffs you need?
Fortunately our local Tesco Extra sells hemp milk and the Dietary Specials rolls. I go to Cardiff to buy most of her ingredients from a shop called Beanfreaks – they stock a really wide range of alternative flours, cereals and non-dairy cheese and milk. I order baby food products from the Ulluli website. If all else fails our local Holland and Barratt also has a few bits and pieces she can eat.
Do you find your family and friends understanding?
My niece had CMPI so my family are very understanding and accommodate Deryn’s allergy really well. They’re also pescitarian so understand avoiding certain ingredients as a matter of course. My friends are very kind and some go to great lengths to keep Deryn safe – I really appreciate the simple things, like wiping their kids hands after they’ve eaten, or clearing up dropped food quickly. Obviously we do get comments like ‘why don’t you just give her a little bit to build up her immunity’, and people still give her milk chocolate and so on as gifts. But it’s hard for most people to really understand what it’s like to manage life when your child has allergies – the worry, the expense, the constant work to chase appointments and plan meals and ensure your baby is healthy and well. But I am very grateful for the help I do get, and the effort people make to include Deryn and keep her safe.
Did you and your family go free from also?
I have always been vegetarian so when we discovered Deryn’s egg and milk allergies I knew I’d have to become vegan to keep breastfeeding her. Initially it was really hard, as she reacts to soya too, and most dairy replacements are soya based. Plus I absolutely love cheese and found myself pretty much unable to eat out, or enjoy a cuppa or a piece of cake. But as time has gone by it has got much easier. I don’t think I’ll go back to drinking cows milk now, the thought of it seems really odd! My partner has continued to eat his usual diet, so we usually have lots of different types of milk in the fridge, and different shelves to keep his food separate from ours. None of us eat eggs any more though, at least in the house. Her reaction was so strong we don’t want to risk her coming into contact with them again.
The main benefit to going free-from is that I really understand what life will be like for Deryn as she grows up. I have had to learn to cook and shop in a different way, and to be very creative with a limited range of ingredients. I hope we’ll be able to enjoy healthy family meals together as she grows up, and she won’t find her allergies too much of a barrier to enjoying a full and happy life.
Ellie Harwood lives in south wales with her 12 month old daughter, Deryn, and partner Alun. She works as a Research and Data Analyst for a charity, and likes to spend her time free time getting outdoors and exploring the countryside with her family.