For those who have Coeliac Disease, having a little crumb or trace of gluten can mean a raft of horrible symptoms, that can take months to go away. This week is Coeliac Awareness Week, so we chat to a young Kiwi woman about her experiences with CD and what she wishes everyone else knew about the disease…
This story was first published on June 12 2024
On the outside, Rosie Jerram looks like your typical 23-year-old. She works as an Auckland-based corporate finance analyst, has great friends and loves to cook. But… on the inside, Rosie has been dealing with an invisible illness, Coeliac Disease (CD) since she was diagnosed at the age of 16.
‘Oh, you have the thing where you get a bit sick if you eat gluten?’ can often be people’s response, not really fully understanding her condition.
“Something that is often misunderstood about coeliac disease is that eating gluten actually has negative effects far beyond having to lock yourself in the loo for a while,” says Rosie. “It is hard when people minimise the illness and write it off as a ‘funny tummy’ when the consequences can be much more severe, although likely not observable to those around you. Your body takes a long time to heal from a gluten incident with CD, meaning symptoms such as fatigue, nutrient deficiencies and brain fog can continue for many months.”
And, a reaction can happen extremely easily. Rosie doesn’t need to eat a large quantity of something that contains gluten – it can just be a little trace.
“Something I wish people knew about coeliac disease is that all it can take is a single crumb to launch a reaction,” she says. “This means cross contamination is extremely important – your coeliac friend/colleague/customer is not being dramatic when they ask you if their food can be kept separately with fresh utensils! They are simply trying to protect their health.”
Rosie says that’s she’s one of the very fortunate people who have CD in that her diagnosis came very quickly – something that can often take many years of suffering to get.
“It’s a tricky condition to diagnose because symptoms are often nondescript and easily mistaken for other causes,” says Rosie, who first started noticing symptoms when she was 16 years old.
“I began falling asleep everywhere… watching TV, on car trips, in my classes (which was quite out of character)! I also lost weight quite rapidly and had noticed some gut symptoms so ended up being screened for coeliac by my GP via a blood test. I then had a gastroscopy to confirm the diagnosis (with the time leading up to this becoming my gluten eating bucket list!) It was certainly a surprise to get the diagnosis. I felt a mix of relief/empowerment that I could self-manage, but also a bit daunted by the challenges ahead.”
This week is Coeliac Awareness Week (June 15 – 21), with a special theme focus this year on the importance of building a strong support system of family, friends, and colleagues to thrive while navigating a gluten free lifestyle
Rosie says she’s extremely fortunate to be in a workplace that is considerate of her needs as a coeliac, but knows not all workplaces are quite so accommodating.
“On my first day at my job, my boss suggested that I explain what CD is to the team and what I need from everyone to make sure I can eat safely – this set the tone and has made everyone very considerate,” she says.
In previous jobs, Rosie says she’s tried to be proactive and her own advocate, to ensure she stays safe at work.
“I’ve found that putting my hand up to take charge when ordering food for a shared lunch or planning a team dinner makes life much easier with CD so that you can control what you eat. It is a bit of extra admin, but helps to avoid those hangry, jealous moments! I also think you’ve got to speak up and be your own advocate in these situations, which may involve getting in touch with the person in charge and letting them know your needs and some potential solutions.”
If you work with someone who has CD, the advice is also pretty simple – just be considerate. If they have a separate area, utensils etc for preparing their food, be respectful and keep your food away from them. If you’re planning a shared food event, or eating out, keep their needs in mind.
Rosie’s Gluten-Free Recommendations
When you’re GF you quickly get to know the best spots to eat at – it always helps if you have someone in the know point them out too, to help expand your list of go-to’s! Here, Rosie shares her favourite GF haunts in Auckland, Christchurch and her go-to dishes to make at home!
In Auckland, I love Hammer & Tongs (Commercial Bay, 100% GF), Taco Teca (mostly gluten free), Wen & Yen bakery (GF donuts and pies) and Mekong Baby (most of the menu is GF).
When visiting my whānau in Christchurch, I never miss a visit to Riverside Market, which has a myriad of gluten free options (dosa, burgers, fish and chips, sweet treats, tapas – you name it, Riverside has it!)
At home I am a passionate home cook, and love experimenting with new foods/styles. I am generally heavy handed on the vegetable front and tend to make everything from scratch, so I know it is safely gluten free. An all-time favourite recipe is the Kushari from the Ripe recipe book – a delicious Egyptian rice dish with a spicy tomato sauce, would definitely recommend!
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