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Living with coeliac disease

We all know coeliac disease has many ‘faces’ - it can affect anyone from any walk of life and has a wide range of symptoms that aren’t always easy to see or explain. Throughout Coeliac Awareness Week we’ll be sharing stories  about our people who are living well with coeliac disease and inspiring others to do the same (thanks to the generous support of Bennetto Natural Foods Co).

We’ll also encourage those who might have the condition or is at risk to follow their gut feeling and take the online self-assessment and get diagnosed so they can live well too.

Introducing Joseph

Hi my name is Joseph. When I was 3 I got a gastro bug. I had fevers, everything. A week later I had recovered but was so tired and grumpy, my mum took me to the doctor thinking I was dehydrated. A month later mum had me back seeing the doctor as the gastro bug just didn't go away. The doctor was really good and referred me to the hospital where they thought I had diabetes. By this time I had already had 4 bloods tests to find out what was going on (they weren’t nice, and it wasn’t nice for my family to see) including one for coeliacs which came back negative. I also tested negative for diabetes and that was that - or so the Dr said!

Thankfully my mum however never stopped pushing - she knew my mood swings, fatigue and lack of growth was not normal. She kept pushing even though the health professionals kept telling her that I was all good - "let's just keep monitoring him" . That was despite me not gaining any weight and going lower down the growth chart year after year, for the next three years.

I was very sick looking, pale and skinny, everyone was commenting. But finally we got to an ENT specialist who thought I had severe reflux so called in a special tummy doctor to do biopsies. Turns out they came up positive with coeliac disease this time and a genes test also confirmed it.

So now after 3 years I’m on the right diet and I’m feeling better. My mum always says, if you know you're not getting the right answers keep pushing - and I’m glad she did as now I don’t wet my bed, I’m not so tired, I don’t get grumpy as much and I don’t have a sore tummy.

I had a hard road with 7 blood tests to get to know why my tummy was sore - and now I am back to being an awesome me!

Stronger Together

If you know someone who would like to share their story of diagnosis please send your article to admin@coeliac.org.nz

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