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Living with coeliac disease twins

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We recently celebrated Coeliac Awareness Week. This time two years ago I was blissfully unaware of what coeliac disease really was, but later that June we had the diagnosis for one of our twins, aged 9. He’d complained of a sore tummy for years, but in multiple visits to the doctor never once had a coeliac test been suggested, until we took him off gluten briefly after noticing a reaction, and the sore tummy improved, so the doctor suggested a test saying “it probably will come back negative”.

We had to get him eating gluten again for the test (for at least 6 weeks prior) - a simple blood test, which sometimes is followed up by a biopsy for confirmation. His test came back in the extremely high range. Then a test for his identical twin brother (who did not have the same symptoms), now a 75% chance of having it too as a twin - and yes another high positive result!

Our boys had low ferritin levels on and off for years, despite eating iron-rich foods, and now we know why… The second twin's symptoms were achy joints, some nausea, and tiredness which magically resolved once gluten was removed. Both boys had difficulties concentrating at school which also improved drastically over the months after going gluten-free.

Navigating life as a coeliac is interesting. They cannot have anything that even has a tiny amount of gluten (barley, rye, oats, or wheat). You don’t realise how many things potentially have gluten in them until you have to avoid it. Our first few trips to the supermarket took hours, scanning labels and working out what they can and cannot eat. We have to be extra careful of cross-contamination when cooking gluten and nongluten foods in the same space. Even a crumb can cause long-term damage.

We are lucky that our boys are at a great age and good at asking if they are unsure whether something has gluten in it. Coeliac disease makes eating out a challenge for our family. There are very few places that we can trust to eat out at in Tauranga. Even if they say “gluten free”, it doesn’t always mean that there isn’t cross-contamination from the same preparation area or fryer, for example. Coeliac-friendly options are often more expensive too, e.g. $7-10 for a loaf of gluten free bread. Our grocery bill is insane!

The Coeliac Disease NZ Facebook page has been an amazing resource for recipes, places to eat (or avoid!), and general tips. We joined Coeliac NZ and got a great pack of information, and the boys have been to a couple of their Tauranga kid's club events.

Some days I feel a bit sorry for them when they miss out on some treat at school or have to take their own food to parties, but I am so glad we found out when we did for the sake of their health, and that they are on this journey together.

The article was written by Jo Newcombe Cook (Mother of twins with coeliac disease) to support Coeliac Awareness Week.

Photo not supplied with the article.

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