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My Toddler Has Coeliac Disease – How This Mum Manages It

My Toddler has Coeliac Disease is a guest post by Bronwyn Brady at Four2Adore.

This is Will. He’s an energetic, athletic, friendly, happy seven year old. He’s a doting big brother to three little kids, and he’s my awesome firstborn child.

My Toddler has Coeliac Disease - Love from Mim
Will competed in his first TRYathlon earlier this year

He’s also got coeliac disease.

Coeliac Disease in Toddlers

BC (before coeliac):

Will was a delightful baby who grew into an active toddler with a huge appetite. He loved sandwiches and Weet-Bix the most.

When Will was eighteen months old, he suddenly became sick. He began vomiting after meals, and then later, downright refusing to eat food. After two weeks, I took him to visit our GP. She gave him a general check up and then said she believed he was simply going through a picky eating stage and reassured me that kids generally start eating again soon enough.

My Toddler has Coeliac Disease - Love from Mim
Will lost 20% of his body weight in a matter of months, prior to his diagnosis of Coeliac Disease.

Once home, I started to record a food diary, hopeful that a pattern would emerge. But it seemed that whatever I fed him, he’d nibble at and then be sick.

I recall being at a barbecue and my husband giving Will a plate of chopped up sausage, and Will vomiting all over the poor host’s patio floor. At that point I was at a complete loss. I didn’t believe the problem was behavioural.

That evening, I weighed him and discovered he had lost a substantial amount of weight. I felt anxious and concerned.

Making an appointment

I took him back to the GP early the following Monday.

Will was looking very poorly by this stage. His eyes were dark and sunken and his shoulder blades were poking through his back. I was extremely worried. Our GP was concerned, too. She wanted to rule out serious illnesses such as diabetes and cancer. Upon hearing this, I was beside myself.

She ordered blood tests and he was immediately seen by the phlebotomist. The following day we were recalled to discuss the results. The bloods indicated the presence of Coeliac disease. The doctor recommended we remove all gluten from his diet immediately.

Coeliac disease was confirmed soon afterwards during an endoscopy procedure in the Lady Cilento Childrens’ Hospital.

Game-changer

I had mixed emotions about Will’s diagnosis. On one hand, I was immensely relieved that he wasn’t suffering from a more dangerous disease. I was happy to learn that we could easily adapt his diet and his outcome would be positive. But I was sad, too. I thought of all of the foods Will would miss out on in his lifetime. No burgers after school with mates. Or a beer at the uni pub after exams.

My Toddler has Coeliac Disease - Love from Mim
No German beer in your future, I’m afraid!

I was heavily pregnant with our second son, Sam, and wondered if he would also have Coeliac. As I delved further into information about Coeliac I learned how imperative it would be for me to ensure Will didn’t ingest any gluten. The cumulative effects of repeated gluten exposure on Coeliac patients are worrying and severe.

My Toddler has Coeliac Disease - Love from Mim
We love attending parties and I prepare special snacks to take along for Will to enjoy.

The hospital arranged for us to visit a nutritionist and develop a plan for Will. This service and support was fantastic. She would weigh him upon each visit and I was thrilled to see him gaining weight week by week. The was thriving again, no longer a weak, pale little boy; he was back to himself. We were over that hurdle.

Life with Coeliac:

It’s not just Will’s life which has been impacted by his diagnosis.

My husband and I now have four children, and although Will is the only one with Coeliac disease, we all eat a low-gluten diet. It’s been a learning journey, and although facilitating Will’s gluten free diet seemed overwhelming at first, it’s relatively easy to manage within our home.

My Toddler has Coeliac Disease - Love from Mim
Our family loves being active and healthy.

I plan meals ahead of time to ensure I have the correct ingredients for Will’s portion. After the diagnosis, I was preparing one gluten-free family meal per night. However, gluten free food is costly, so I quickly switched to cooking two versions of the same meal. This does require extra planning, preparation and cooking time, but I find the financial savings worthwhile.

My Toddler has Coeliac Disease - Love from Mim
The boys decorating special occasion treats using gluten free ingredients.

I was concerned at first about how Will would get on when he was away from me, at kindy or eventually school. Will is amazing at managing his requirements when out and about, and always has been. I was so proud of him when he’d ask in his little toddler voice “Is this gluten free?”, or decline cake at parties and explain “I’m gluten free”. Now his brother and sister also check foods for him. The words “gluten free” are spoken dozens of times a day in our household. People are constantly handing me packets to check ingredient lists!

Out and about

As for outings, I make sure I have a little ziplock bag of gluten free lollies just for Will in my bag, in case other children at events are enjoying sweets. If we go to a birthday party I take along a slice of gluten free cake (I either buy at a local cafe or have some portions in my freezer). Our close friends kindly cater to Will and have gluten free options available which we really appreciate.

Over the five years since Will’s diagnosis, he has had a handful of gluten exposures, and these have been unpleasant, but serve as reminders for me to be vigilant, as he is quite sensitive.

During this time, gluten free food has become much more accessible in mainstream supermarkets. The prices have become more affordable, and the range has broadened considerably.

Will’s school tuck shop sells several gluten free lunch and snack options, so he’s able to enjoy a treat once each week.

My Toddler has Coeliac Disease - Love from Mim
Me with my precious boy.

Another silver lining to being a Coeliac family is the wonderful people we’ve met.

One of Will’s dearest mates since kindergarten incidentally also has a gluten intolerance, and the boys (and the mums!) have formed a great friendship, and looked our for each other.

I had the pleasure of meeting Mel, owner of Melinda’s Gluten Free Goodies, and she’s been very generous, donating gluten free food to our school fete and sports club events.

It hasn’t been an easy journey, but having Coeliac disease is just a minuscule fraction of who Will is. He’s taken his diagnosis and subsequent lifestyle changes in his stride, and his positivity is such a credit to him.

With continued development of new gluten-free food ranges, I am so glad to know that someday down the track, Will will be able to enjoy a burger (on a gluten free bun), or have a gluten free beer with his mates.

A diagnosis of Coeliac disease, while serious, can be managed and for that I’m so very grateful.

My Toddler has Coeliac Disease - Love from Mim

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1 Comment

  1. Kylie T
    / 8:21 pm

    Thanks for sharing + raising awareness; what an amazing little boy and family!

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I acknowledge the Traditional Custodians of the land I work and live on, the Awabakal peoples, and pay my respects to Elders past and present.
I thank them wholeheartedly and express my love and gratitude for the privilege to live and work in such a beautiful part of the world and for the opportunity for my family to be part of this vibrant and supportive community.