Coeliac disease – Haven’s story

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American-born Haven started to experience an increase in stomach discomfort around the time she moved to New Zealand to be with her Kiwi partner.  She was 25 years old and began to associate these warning signs with anxiety over the big move, so Haven suffered in silence.

She had actually been experiencing digestive problems and a chronic lack of energy since her early twenties and the symptoms seemed to increase in intensity as time went on.

Diagnosis

Finally, when she was 29, Haven went to the doctor after two weeks of suffering from what she assumed was a stomach bug.  “We went through possible diagnoses of IBS, a dairy allergy and lactose intolerance before the blood tests showed that my coeliac antibody count was sitting at 300+.  An average person’s count is normally around 15.”

Haven had a biopsy to complete the diagnosis and then faced a major change to her diet and lifestyle.  “Coming from an Italian-American background, pasta, bread and beer had all featured fairly heavily in my weekly diet.  All that was taken away and I was told I would never be able to eat those foods again.

“I had to go cold turkey and, while it was a relief to finally figure out what was going on, I spent the first little while feeling like I was missing out.  It was only when I changed my focus from what I couldn’t eat to all the things that I could that I started to feel better.”

It’s now been four years since her diagnosis and Haven still has to be extremely careful when eating away from home.  “I am very sensitive to the slightest trace of gluten in my food.  I have to make sure I speak to the chef or restaurant manager if we go out to eat.  Once, in an Auckland restaurant, the gluten-free rice noodles in a dish I specially ordered from the chef were swapped with wheat-based noodles and I ate them, unknowingly – I was as sick as a dog for hours afterwards.  Most people don’t understand the difference between being gluten-free as a dietary choice and being gluten-free as the result of a medical condition.”

Health and Fitness

Coeliac disease affects one in a hundred people and symptoms of the disease often emerge in young adulthood.  After three and a half years symptom-free, it’s not just Haven’s diet that has changed.  “Coeliac disease was a wake-up call for me,” she said.  “My mum died at 53 as a result of heart problems and emphysema.  I was never over-weight but I didn’t exercise and wasn’t at all fit – I’d never even been to a gym.”

Now Haven trains three times a week and runs twice a week with friends.  She concentrates on eating whole food for fuel rather than pleasure and has ‘turned her whole life around.’  According to Haven, the trouble with coeliac disease is that the symptoms creep up on you.  “You’ve always felt that way so it’s hard to isolate the problem – I certainly didn’t get on to it quickly enough.  Coeliac disease is just not an obvious diagnosis.”

Find out more about how GGS and CLP can fit in with a coeliac diet.