Our family has gone through a few big changes in the last year, and one of those changes has been that Max was diagnosed with coeliac disease which means he can’t eat gluten. You may have noticed the gluten-free recipes here on the blog.
When Max was diagnosed my first concern was that his dad wouldn’t understand that Max had to eat gluten-free. His dad is really into embracing all the food groups and is super suspicious of food trends, elimination diets, even vegetarianism. But I sold him short with that worry — he totally understood that having coeliac disease is a medical condition.
If you’re not familiar with it, here’s a video that Max and I like that explains coeliac disease, gluten-intolerance, and who needs to eat gluten-free (and who doesn’t):
Max was asymptomatic so we didn’t find out he had coeliac disease until he was nearly ten. I took him to a private paediatrician for a check-up and she threw the coeliac disease serology in with the other blood work because he was small for his age. She called me first thing the next day.
It was kind of surreal to be rushing Max into all these specialist appointments with people talking about how sick he was when he seemed totally fine. If I hadn’t taken him to the private paediatrician I don’t know when we would have realised. Maybe never. I’ve found out since that 1 in 70 Australians have coeliac disease, but of that 1 in 70, 80% of them don’t know they have it.
In hindsight there were some signs — apart from being small for his age (which I always put down to my Asian genes) he didn’t like bread. Who doesn’t like bread? But on the other hand, he loved pasta, so I guess there’s really no way to know for sure unless you get tested.
As it says in the video, he inherited the disease. Mark and I both got tested and it turns out I have both the genes, but I don’t have the disease, which means I should still eat food containing gluten. Mark doesn’t have either of the genes and neither does Rose.
Max has been an absolute champion about taking the info on board and sticking up for himself and his health at parties, school, and even at home. It takes strength to be okay with being different from the people around you, and I admire how he’s dealt with the change. The only thing he complains about is not being able to eat store-bought donuts anymore. And he really misses sushi.
The biggest challenged I’ve faced is figuring out how to communicate to other adults just how strict they have to be about food prep for Max. For example, people with coeliac disease can have their intestines damaged by just 1/100th of a slice of bread. That means he can’t have food that has even touched food containing gluten. Sleepovers, friend’s parties and going away on holiday are made more challenging by this.
We’re still working on finding restaurants in Sydney who are willing to prepare gluten-free food separately. Max and I love eating out and really miss it.
If you have any recommendations for restaurants or food stores, I would love to hear them. And if you have coeliac and have any tips for us please get in touch! You can email me at firstname.lastname@example.org or leave a comment on this post.
For more info on coeliac disease check out Coeliac Australia
You may also like:
Max: Bobo Choses tee from Harley and Soo
Rose: Bobo Choses dress from Buckets and Spades
Photo: Bron Bates