Like many Kiwi kids, Emily Cameron spends her weekends and free time playing sport. The 11-year-old from South Auckland enjoys soccer, netball and basketball, which is a surprise and delight to her parents, Corinne and Jacob.
They remember Emily’s first five years as a period punctuated by regular trips to hospital, where their oldest child frequently ended up on an IV drip because she was dehydrated from vomiting so much.
Corinne recalls, “Friends had kids who used to get earaches and I’d say, ‘Oh, my child gets spew bugs.’ But when Emily got sick, she got really sick – dehydrated and ending up on a drip in hospital. She’d vomit every 10 minutes.”
As the family grew – Emily has younger sisters Charlotte, nine, and Anita, seven – Corinne says the vomiting episodes and trips to the hospital every three to four months became part of the fabric of family life.
“We knew no different, so it was our norm. We used to say that every Mother’s Day and every long weekend, I’d be up at the hospital because we always had a sick child. She was so happy and so active otherwise, though, we didn’t think that much of it.
Life for Emily today is a far cry from her early childhood punctuated by hospital stays.
“It would often come on so quickly and it was often out of hours – because kids love to get sick on weekends or in the middle of the night – so the response was to treat the condition now rather than looking at the overall picture.”
As Emily’s fifth birthday and first day at school drew near, Corinne became increasingly concerned that she still took lengthy afternoon naps.
“I thought, ‘Maybe I’m not lucky that my child still takes such a long nap. How’s she going to cope when she’s at school all day?'”
Corinne continues, “We went to our GP and the big clincher for us was when they did some tests. Her iron levels came back majorly low. The doctor said, ‘Come back for more tests because there’s no reason for a young child who eats well to have no iron.’
“Her iron was pretty much non-existent, which explains why she was so tired. They did another test and said, ‘Wow! Your markers for coeliac disease are off the chart,’ so the next step from there was to do a biopsy of her intestine.”
Emily was sedated while the biopsy was done at Starship children’s hospital and the results were conclusive.
At age five, she was diagnosed with coeliac disease (pronounced see-lee-ak), which is thought to affect up to 100,000 New Zealanders, including around 30,000 Kiwis aged under 18. Many are unaware they have it.
Although Corinne says the family was relieved to finally know what made Emily sick, it meant changing their diet and lifestyle to avoid gluten, which triggers an immune response in people who have this condition. With help and advice from support group Coeliac New Zealand, the family altered the types of food they ate and found alternatives to gluten-filled products they enjoyed, such as bread.
“Because we had a baby and a toddler who were naturally messy, the whole house went gluten-free because I simply couldn’t contain the cross-contamination risk from having two little ones in the house, when even the smallest crumb could set off an autoimmune reaction in Emily,” says Corinne, adding that the rest of the family now eats foods containing gluten.
“Dinners were the easiest because you can have rice or potato and find substitutes for pasta. It was lunches that we had to get a bit more creative with.”
Being coeliac means Emily enjoys things like frittatas, rice-based lunches or leftovers from the night before, but she admits she misses donuts and some types of bread. “But I would say to others, ‘Think about what you can eat and not about what you can’t.'”
Emily’s now learning how to cook – her favourite things are gluten-free waffles, chocolate cups, smoothies and scrambled eggs – and knows she has to stay vigilant to stay well. She agrees with her mum that a restricted diet is worth it if it lets her lead the active life that she now enjoys.
“From diagnosis to going gluten-free, the change in Emily was instantaneous,” tells Corinne. “The energy!”
Her advice to is talk to your family GP as soon as you suspect something isn’t right – but don’t quit gluten until you know for sure because for diagnostic tests to work, gluten has to be in the system.
“Even if it’s not coeliac disease, to see your child go from unwell to well is just the best thing. We’re fortunate that this is a disease that’s totally treatable through diet and we don’t need medication. If we stick to the diet, Emily is just as healthy as everyone else.”
The Camerons are living their best lives since Emily’s diagnosis.
Raising awareness
This week’s Coeliac Awareness Week is held to raise awareness of coeliac disease, the challenges sufferers face and the benefits of diagnosis. Coeliac disease is a serious condition that occurs when an immune response is triggered by exposure to gluten found in wheat, barely, rye and oats. This reaction causes damage to the small intestine, which can lead to a range of symptoms and, if left untreated, results in serious health issues. The theme of this year’s Coeliac Awareness Week is “My coeliac challenge – take charge, get diagnosed and find help”. To find out more or to donate to Coeliac New Zealand, visit coeliac.org.nz.
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