A Parent’s Perspective (Part 2)

This is Part 2 of our special story to mark Food Allergy Week 2024. It’s an insight into one family’s 14-year rollercoaster of managing allergies and food-related autoimmune disease. Read Part 1 here.

PART 2: Living & learning

The scare

We were at a family gathering shortly after Edie started school and her peanut allergy diagnosis. She was playing happily with her (dribbling) younger cousin – but we didn’t know he’d eaten a peanut butter sandwich a few hours before. Soon Edie was feeling sick, developed hives and said her tongue felt funny. I whipped out the EpiPen and watched her like a hawk! She improved quickly but, that night, woke with bright red hives covering her entire torso. We called a home-visit doctor, who gave her a stronger antihistamine, monitored her, and advised that hospital wasn’t necessary.

Our specialist told us to assume the next reaction to peanuts would be anaphylactic, as her immune response had escalated so much. His other advice? Never, ever hesitate to use the EpiPen. It won’t harm her, but delaying it could. When in doubt, use it immediately.

Building awareness 

As Edie got older, we gradually built her awareness and understanding. She knew not to accept food unless we (or a trusted adult) checked it, not to swap/share food, and how to tell an adult if she was feeling strange or unwell. We met with her new teacher before the start of each school year, and provided a stash of “safe” treats for special occasions (when other children brought in food). In Year 4, she was invited to write a letter to her classmates to describe her allergies and how they could help her stay safe. She loved doing it.

The best thing? Children are generally so allergy aware and protective! Her friends would only let their parents pack “Edie-friendly food” in their lunchboxes. Children with allergies are reportedly more susceptible to bullying, but fortunately that hasn’t been our experience.

The next surprise

Later in Year 4, I noticed that Edie was often pale and lethargic. Blood tests showed that she was low in iron and also revealed the reason why: suspected coeliac disease. The diagnosis was confirmed by an endoscopy, a procedure that collects tiny biopsies from the small intestine. Coeliac is not an allergy or intolerance: it’s an autoimmune disease. Any amount of gluten – a protein found in wheat, rye, barley and oats – damages the small intestine lining, stopping the absorption of nutrients and causing inflammation in other parts of the body.

Nutritional deficiencies can cause anaemia, fatigue, weakness, delayed growth and more. Over the long term, if undiagnosed or unmanaged, it can lead to osteoporosis, liver disease and an increased risk of certain forms of cancer. There’s no cure, but it can be managed by a lifelong gluten-free diet. Even a crumb is enough to trigger the autoimmune response.

The first step was overhauling our kitchen. We are lucky to have a downstairs kitchenette – so we chose to “de-gluten” our entire main kitchen and only prepare food with gluten (like sandwiches for our son) downstairs. Simple tasks like grocery shopping became intricate exercises in label reading. We started to check every ingredient list for wheat, rye, barley or oats – and learned the “exceptions” to the rules.

We joined Coeliac Australia (full of great tips and resources), visited a paediatric dietitian, and explained it all to Edie in an age-appropriate way. We also met with her teacher and updated her school records and action plans (again!) while advising family and close friends what it all meant.

Then, one year later, a skin prick test showed Edie’s reaction to egg had substantially decreased. We repeated the cooked egg challenge – and success! She had outgrown her egg allergy. At 10 years old, after a confusing array of tests and diagnoses, Edie had two food-related diagnoses: a severe peanut allergy and coeliac disease.

In Part 3: Read about social situations, school camps, eating out and the “teen transition”.

At The Wellbeing Food Co, we specialise in helping clients navigate multiple allergies, intolerances and culturally-sensitive dietary needs. Special meals are individually sealed and labelled to eliminate guesswork and cross-contamination risk. Because every child deserves great food – and providers and parents deserve certainty, every day.

Want to improve your management of allergies and dietary needs? Read more here or call us today.