Coeliac disease: 10 tips for parents

Starting solids is an important milestone in a baby's life, but for baby Sophie Melane, solids meant misery.

"Up until then she was a healthy, blooming baby," says Sophie's mum Hannah Melane.

"She went from being a baby who enjoyed snuggling into my chest, to a baby who always arched backwards and pulled away from me."

Believing Sophie had colic, Hannah tried all the appropriate medications, feeding and burping techniques, but to no avail. Sophie lost weight and was diagnosed as failing to thrive. Finally, blood tests showed she was gluten intolerant and had coeliac disease, a life-changing diagnosis for her and her family. Now a robust 8-year old dance star, Sophie is full of energy and almost never sick, says Hannah. 

What is Coeliac disease? Coeliac disease (pronounced see-lee-ak) is a permanent, autoimmune disorder that causes a reaction to gluten which is found in wheat, barley, rye and oats. About 1 in 70 New Zealanders are estimated to have coeliac disease, but up to 80% of those are unaware they have the condition. For more information see the Coeliac NZ website.

Here are Hannah's top 10 tips for coping with a child diagnosed with coeliac disease.

1. Trust yourself:  if you think something is wrong, there probably is.  

2. Keep a close eye out when starting solids: obviously this is where it all started for me, and I wish I’d kept a little food diary and noted how she reacted to what new foods.

3. Poo tells a story! Not a nice subject, but my child would go from one extreme to another - loose and all over the place, to hard little pebbles.  If your child is consistently having these bowel issues, it means something is not quite right.

4. Have an open mind: I was so sure that it would not be Coeliac Disease - I don’t have it and neither do any immediate family.

5. It’s not that bad: Ok, so it means limited takeaways and therefore needing to be a little more prepared, but in general it is relatively easy, and getting easier all the time. Movements such as Coeliac Awareness Week are really helping people to understand our struggles a bit more.  

6. Study/Research it: I have found all the handy books I received when I joined Coeliac New Zealand such a huge help!  All the information that you could ever need is there.  You would think that anything that had WHEAT in bold letters contained gluten right?  Not the case, Wheat Glucose Syrup has been so highly processed that it contains no traceable wheat and is therefore gluten free………. what the??

7. Read Labels: yes, Gluten Free specific products are generally more expensive, but there are so many other products out there are naturally gluten free.

8. Everyone is different: each person with Coeliac is different.  Sometimes even one little crumb will start a reaction.  I choose to allow ’this product is made in a factory containing gluten’ items, as long as the item itself is Gluten Free.

9. Gluten can hide in crazy things: packaged grated cheese, baked beans, sauces, ice-cream for example in theory wouldn’t have gluten - some brands do, some brands don’t. Some flavours do, some don’t.  And don’t forget Play Doh at pre school, some lip balms/body products and medication.  

10. People get it wrong: there will be times when people feed your child the wrong thing or accidental cross contamination can occur.  Thankfully our body can heal itself, and as long as its not a constant occurrence you will be fine.  Try to teach the people close to you about Coeliac Disease, speak directly to the chef at a restaurant, and always pack your own little lunchbox wherever you go.

Hannah's quotes taken from her article: From failing to thrive, to winning at life, printed in Coeliac Link Winter 2017.



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