Shared experiences create a unique kind of connection that’s hard to replicate in any other way. Whether a diagnsois of coeliac disease is challenging or easy because others you know have been diagnosed before you, every individual's experience is unique.  For Hayley, it went like this...

2025 started off great. We had a busy season on the farm and were excited to get away to Jackson's Bay on the West Coast for a break with the kids. Jackson's Bay didn’t disappoint; we had lovely weather and a great time. Little did I know that the night we arrived home would be the beginning of a series of health issues.

I’ll never really know why or when my coeliac disease “kicked in,” or if it had been sitting silently for many years. I fell ill after our trip away and was diagnosed with pericarditis, which then changed to mild myocarditis. During this time, I was, at one point, on over 20 pills a day, ranging from antibiotics and pain relief to steroid medication. This later changed to iron tablets and two types of reflux medication. Despite a clear MRI scan, I was still feeling very unwell and losing a lot of weight.

Walking into the GP clinic, I felt ridiculous about the long list of symptoms I was experiencing. I guess that’s the thing about coeliac disease, and why it can take so long to diagnose, as the symptoms can vary so much.

After my own investigation, I asked for a coeliac blood test and a gastroscopy to see why I was having stomach problems. Sure enough, I received a phone call confirming that my bloods were positive, with my anti-tTG IgA levels >4965. Along with the gastroscopy, this confirmed the diagnosis.

I didn’t know anyone close to me who had coeliac disease, and even though I come from a large family, I have no family members who are coeliac. This was all new territory for me. I think I assumed that removing gluten would be a quick fix to recovery. While some things did improve after a few weeks, five months on from my diagnosis - and nearly a year since first feeling unwell - I still suffer from neurological symptoms such as fatigue, numbness, and brain fog. My levels have since improved to 369, and my ferritin levels have also been improving.

Finding Coeliac New Zealand was a key part of understanding my new normal, especially as it can be overwhelming and isolating when you don’t know anyone else with experience in this area. I attended two of the online Zoom sessions they ran and used many of the online resources to help navigate my new way of life. It’s such an invaluable tool we are lucky to have, and even the blue Crossed Grain Logo label on products reassures me - especially at the beginning of what can be a daunting transition to a new way of eating.

While this journey has been really tough, I feel lucky that we have a strong coeliac community in New Zealand. I know that this change in diet, while necessary, will also benefit the health of my family overall.