Pictures: Selina Nunn
It cost her her job, social life and many of her favourite foods, but Brooke Jordan is glad she was finally able to put a name to the debilitating disease that had plagued her for so long.
The bubbly 30-year-old lives in north Canterbury with her three-year-old daughter Thea. She believes coeliac disease, a long-term autoimmune disorder caused when the gut reacts to gluten, leading to inflammation and damage in the small intestine, was present since her birth.
“I was constantly vomiting and suffering from diarrhoea as a child,” recalls Brooke. “I also had acid reflux and gastroenteritis. Doctors believe it’s the reason I’m shorter than my brother and sister. Because coeliacs can impair growth in children.”
But Brooke, who moved to Australia in 2013, didn’t receive a diagnosis until she was 23.
“I managed to live without the worst effects of it while I was growing up. But when I moved to Brisbane with my former partner, the symptoms started to reappear.”
Doctors believe it was anxiety that triggered Brooke’s life-changing pain and fatigue.
“I was so stressed that my body shut down and the coeliacs ramped up again,” she tells. “I was constantly vomiting and having diarrhoea, and my body ached all the time. My stomach was bloated and I was so tired that some days I couldn’t get out of bed. All I wanted to do was sleep.”
The former beauty therapist struggled through six months of agony. “It was a classic case of, if I ignore it, it will go away. But it didn’t and after six months, I had enough and went to my GP.”
A specialist referred Brooke and performed a series of medical procedures, including a biopsy of her small intestine, gastroscopy, and colonoscopy. Specialists diagnosed her with coeliac disease, which doctors then told her she likely had from birth.
“I’d never even heard the term before!” she says. “They had to explain it to me and the major changes I needed to make to my life.”
That included removing all gluten from her diet – from bread to beer and even some sauces.
“Marmite on toast was my favourite food, but that had to go, along with pasta, cake and even beer. I had to replace anything with gluten with non-gluten substitutes, which can be a bit dry and not nearly as nice as regular food. They sent me to a nutritionist who helped me work out what I could and couldn’t eat.”
But after removing all gluten from her diet, Brooke’s sacrifice paid off when her pain and tiredness disappeared.
“It took about a month for me to get back to normal health.”
Unfortunately, Jordan’s boss eventually sacked her for taking time off work to attend hospital appointments.
“I was working in a café and even though I had notes from doctors, my boss said that while she understood I was unwell, she couldn’t keep me on because I’d had too much time off.”
Although at the time Jordan didn’t take any action, she now wishes she’d spoken up.
“It was a chance for me to be kind to myself and get better before I looked for another job.”
“I was going through this life-changing event and my boss couldn’t have compassion for me. I now know I could have taken some action against her because that’s not the way to get rid of someone who’s unwell. But at the time, I was so tired and stressed, I left it. Even though I was scared of being unemployed and relying on my former partner for financial support.”
Brooke eventually decided to turn her dismissal into a positive, taking eight months off to heal herself.
That’s not all the disease has taken from her. Even today, Brooke often turns down invitations to social events, worrying she might consume gluten by accident.
“Sometimes I’ll take my own food or I just won’t go because it’s not worth it,” she tells. “If I swallow even a tiny crumb of gluten, I’ll get sick and be in pain for two days.”
Brooke, who returned from Australia during lockdown, says she can’t even share a toaster with her friend Sarah or Sarah’s three-year old daughter, who she and Thea live with.
“If Sarah makes a sandwich or uses the sandwich maker, I have to thoroughly clean down the surfaces before I use them because the smallest thing can trigger a reaction.”
She’s also about to have her daughter tested for the incurable disease. She explains, “I want to have Thea tested for coeliac disease because she has suffered from a bloated belly, stomach pains, and diarrhoea. I’m not messing around because I don’t want Thea to go through the hardships that I’ve been through.”
This week is Coeliac Awareness Week and this year’s theme focuses on supporting colleagues in the workplace who live with coeliac disease. For more information and tips for how to make your workplace coeliac-safe, visit coealic.org.nz.
