Daisy's fresh start
Trigger warning: ED
I am very pleased to share Daisy’s story. When I first saw Daisy on Instagram, her food is what drew me, but her story is what kept me. She is a student dietician in her fourth year, with an emphasis on allergies. She wants to share her story with food and what she has learned in her studies. Daisy’s story is sensitive but not uncommon. When I spoke to her I felt that she had a deeper connection to food, as I do. People manage allergies in different ways. I experienced a lack of control with food, like Daisy, but we managed it very differently. I ate everything I could, and she didn’t eat. There is no one way to play the hand we are dealt, there is no perfect formula to deal with allergies. Unfortunately, neither of us had the knowledge or resources to know better then. That is why Daisy is doing this now, sharing her story so that she can inspire people to live a happy and healthy life with their allergies. We are in an amazing time right now, more connected to each other than ever before, share your story; inspire someone, you might never have met, to change their lives. I am honoured that Daisy was open and allowed me to share her truth.
Daisy’s Story
Daisy and her siblings
I come from a big family; 4 of us have food allergies and 3 don’t. Not only do we have food allergies (which is hard enough) we don’t all have the same ones. Mealtime is like a restaurant, everyone’s food is different and safe for them. I eat the Daisy Diet because I am allergic to dairy, sulphites, egg, orange and some others. Our house is egg, nut and sesame-free, which is interesting for the chef.
I didn't actually develop food allergies until I was around 13 years old, but I did have experience of them from birth; 2 of my brothers have had food allergies since they were born, so I have many different perspectives on allergies. I have the side of being a carer of someone with food allergies and being a reactor of food allergies.
I rarely speak about my experience as a sibling to someone with food allergies. I didn’t think it mattered, but mainly because I was embarrassed by some of the feelings I felt before I had food allergies. I remember being quite jealous, jealous that I was left out. I didn’t have allergies and the boys got a lot of ‘extra’ attention because of theirs. It seems rather silly to me now, as I hate the attention my allergies get me, but that is because I have firsthand experience now, which puts things into perspective. When I was younger I couldn’t quite see it that way, I didn’t understand what the fuss was about.
My feelings changed as I grew up, but they changed to guilt. When I got older I hated seeing what they had to miss out on, and I was so upset watching them be left out on things because of their allergies. I started to feel scared of what would happen if they had a reaction and that in turn made me feel a massive sense of responsibility to protect them. I see now that at times I was over-protective, but I wouldn’t trade that, they are my family.
Their allergies also taught me things that helped me immensely when I developed my own allergies. From very early on I learned how to read ingredients on labels. Labels have come so far since then but, when I started doing it, allergens in bold and free-from aisle weren’t a thing. I got tasked with reading all the labels, in stores, friends houses, cafes, family events; I got very good at it. Whilst reading all of these, I started to realise how often allergens appeared in products, and as a result, how much they couldn’t eat. Coupled with this, I found that a few things didn’t have an ingredients label, and so even if it seemed like something they would usually have, they couldn’t eat it. I couldn’t stand seeing them miss out on everyday treats, birthday cake, party food, I wanted to give them something safe. I turned to home-baking.
Everything seemed to be going smoothly from then. My brothers were eating safe foods, I was developing my skills in the kitchen and really enjoying it, but then at 13/14, I began having a few of my own allergic reactions. They were non- IgE mediated reactions (non - anaphylactic) but made my asthma flare, I developed hives and a lot of GI issues ie. nausea, vomiting, stomach upset. When these started happening I saw a paediatrician who advised me to cut wheat out of my diet, to improve the symptoms. Unfortunately, it did not help. I was then advised to cut yeast out, too, that didn’t help either. I then had an endoscopy and a colonoscopy, they were trying to rule out Crohn’s and coeliac disease. They then ruled those out, due to the procedures. However, I was diagnosed with lactose intolerance ( which then turned into a non-IgE cow’s milk allergy).
Whilst all of this was going on I lost a lot of weight. This was due in part to the reactions I was having putting me off food and partly because I kept being advised to cut out major food groups. I also found my safe place to be when I was being physically active. I have always been into sports and with everything going on I saw that as my sanctuary, a distraction, away from food. As I was starting to slim down, I got a lot of compliments on my new physique. It was amazing, having everybody praise me, my body, it felt like some things were going right for me. It then became an addiction for me. Every time I went to the doctors I was weighed, and seeing the number go down each time was thrilling. I am only telling you this because this is part of my allergy story, I can’t truly explain how developing allergies affected me without saying that I developed Anorexia Nervosa. This is not to say that everybody who has food allergies will develop an eating disorder, and I can trace back to when mine started and the major catalyst for it was the erratic development of food allergies.
My disorder started to spiral, and I was eventually rushed to A&E (emergency room) because my heart rate was at a very scary low. I spent three weeks in that hospital and whilst there I had a severe allergic reaction. My mum was desperately trying to get me to eat (I was still avoiding lactose and wheat) and the hospital was only serving ready meals which were not appetising. My mum brought in my food for me and one day she managed to get me to eat a couple of dried apricots, but within in seconds my eyes were streaming, and I was having trouble breathing. Thank goodness I was in the hospital, and they did what they had to. It was a traumatic experience, but they also decided to run actual allergy testing on me, and my allergies were diagnosed. Sulphites were added to the list.
After those three weeks, I was transferred to an eating disorder unit. This was a relief for everyone around me, but my life, my sense of freedom, changed. I couldn’t do anything without being watched. They confiscated my phone, which I was only allowed one hour an evening to use. I was frightened at first, I did make friends, but it was very difficult with my allergies. They didn’t know if I was avoiding food because of my reactions or the disorder. They were aware of my allergies but still didn’t take them seriously, and I had a reaction because of their errors. It was extremely distressing to me and the other patients. They did, however, get me through my recovery and save my life. I wish I could say that it was all uphill from there, but I did relapse. I went into a day patient facility, and it was there that my recovery journey truly began. The staff were kinder, and I had a dietician who took my allergies seriously. They made sure the food was safe but also like it was normal, I didn’t have to miss out on things. That truly helped my recovery but also made me think about my future. I saw what that one person did for me, and I wanted to do that for others. She opened my eyes to dietetics, and I saw the way she made sure that my allergies wouldn’t hinder the recovery process. That experience made me want to become a dietician; I saw that eating disorders are so much more than the food.
The recovery process is long, and I went through a lot between then and now, but I am so grateful for that experience. I am in my fourth year at university, studying dietetics, and I love it. I still have moments, wobbles but I have the tools to quiet those voices of my disorder and more importantly, my life no longer revolves around food. Understanding now, how my food allergies affected my eating disorder, it is imperative that we should speak openly about the links. A lot of studies are now being published, such as APPEL-1, which is the first and largest quantitative study to look at the psychosocial impact that severe peanut allergy can have on both an individual and their family. As the rise in individuals affected by food allergies, we must start being open about the impact they can have on mental health and wellbeing. The care pathways need to be adapted to support us and allow us all to live a happy and healthy life.
I now run an Instagram and blog called The Daisy Diet. It is a means for me to share ‘allergy-friendly’ recipes and provide evidence-based nutrition. I am so grateful to have this platform and share my story to hopefully inspire and to show that people are not alone, and we can go through recovery and get out the other side, happier and healthier than before.
Give me a follow, DM, and I can’t wait to meet you.
Daisy
Instagram @thedaisydiet
Website The Daisy Diet Blog