The first chapter

Daily Life

22 June

My first e-book (out now), is the story of our daughter’s journey with coeliac disease. While looking over my medical history, and family history with some of my own specialists, I realised I’d also written down lots of things about our girl’s journey, as I was searching for answers for her. Diary entries, notes I’d scribbled to ask doctors, messages my husband and I had sent to each other, and discussions I’d had with her teachers. I also had lots of medical records and reports, and it dawned on me. There was a story there.

On and off, over the course of almost a year, I collated my notes and put together all the information I had. I wrote down all the questions we’d asked in the early days, and all the things that we wished we’d known. Suddenly, there was something there. Something that could possibly help other families who were in the early days of childhood (or even adult) coeliac disease.

I spoke to the kids about their feelings throughout the whole diagnostic process. I chatted with extended family and friends. I asked questions and chatted to members of the coeliac community. I sought answers from doctors, specialists, and brands. I researched meticulously, looking at regulations in Australia (where we live) and New Zealand, as well as the rest of the world. I wrote it all down.

And just like that, there was a book. Pages and pages worth of feelings, learnings and discoveries.

I rewrote it more times than I can count. Changed sections, rearranged chapters. Added and removed photos. Until it was something that I would have wanted to read in the early days.

Then I sent it out for editing. We changed sections. Removed some things, added some others. Some sections were way too personal, way too emotional and some, needed something more. It got edited for a second, and then a third time. We finally agreed it was perfect.

So I sent it out to a small group to read and review. Some were awaiting biopsy. Some had the diagnosis, but it was still brand new. Some were extended family members wanting to understand better. I got their feedback, and made a few more tweaks.

Finally, it was ready to send out into the world.

My hope for this book, is that it reaches all the new parents and families who are feeling overwhelmed, who are feeling lost, who are feeling emotional. I hope that it brings them comfort that they’re not alone, and the assurance that they can get through it. I hope it gives them the knowledge and the confidence they need to support their child as they transition to gluten free life.

Below, you’ll find part of the first chapter. I hope you enjoy it.

Jo x

OUR STORY

Our journey to diagnosis, like many others, was a long, painful and drawn out process, that’s resulted in trauma and anxiety around food.

My story began in 2014, when I found myself in a constant state of exhaustion. I also hadn’t been able to shift the baby weight the second time around. My doctor at the time ran blood tests, and found I was anaemic, had insulin resistance, was a bit dehydrated and had mildly elevated liver enzymes. He suggested it was due to working full time with two young kids. He thought more rest would help, and also suggested I start a keto diet, cutting out all processed carbs. He said I’d feel much better. And I did.

So began the keto cycle of the next 8 years. I’d do keto for 6 months, feel so much better, then slip back into normal eating habits, and slowly go back down hill. The exhaustion and anaemia would return, and over time, as I cycled between a keto and normal diet, I began to develop stomach aches, and eventually the unfortunate stomach side effects would come with it. I felt awful. I also developed a fine red pimple-like rash on the back of my arms that would come and go as I changed my diet. By this time I had put together that gluten was the issue, and I avoided it most of the time, only eating it if we went out (and would then pay for it dearly the next day).

In early 2022, I started a new job and as I knew I wouldn’t just be able to dash to the bathroom when I needed, I decided it was time to just stop gluten altogether. While I would still get stomach issues, the symptoms I’d been experiencing were much better, and the gastro attacks were much further apart. It was only really bad after I would eat food prepared outside the home, and for the most part, I could control that.

Our girl’s story began during the lockdown of 2021. She was emotional, anxious, clingy and had sleeping problems. At first, we put it down to the stress of the time, but it didn’t improve after the lockdowns ended. In fact, she got worse. She would have angry outbursts, and would get panicky if she didn’t know what was happening, or who we were going to see if we went somewhere. If we were out, she would be anxious about how long we were staying for, and asking when we were going home. I thought it was just the trauma of lockdowns, and wanting to be back at home in our safe bubble, but watching my previously happy go lucky girl be so sad and anxious, broke my heart.

It finally came to a head at one of her dance competitions in August 2022. She came off the dance floor, and fell into my arms crying. I didn’t understand - she’d come first place, but she sobbed, and told me she was just so tired. She had to have the next day off school – she just couldn’t get out of bed.

I spent that day googling. We had looked into childhood anxiety and were using strategies to help her, but it felt like more than that. When I put all her symptoms in, one thing repeatedly came up – coeliac disease. I fell deep into the hole. It was describing our girl to a tee, but it also described me. Everything I’d been experiencing for almost a decade.

We took her to the GP, and while our girl waited outside with her Dad, I explained all my worries, and had a little cry. I also mentioned my thoughts on coeliac disease, and after googling, and hearing both of our symptoms, she agreed it was a possibility. She then asked me to call them into the office. The doctor asked her about how she’d been feeling, and told her she needed to get some blood tests. We got the blood drawn, and we waited.

The positive results came back a few days after her 10th birthday.

She was also severely anaemic. She was low in most vitamins, and her liver enzymes were high. Our GP diagnosed her as coeliac, and said to start her on a gluten free diet immediately, as well as iron supplements, and to bring her back in three months for repeat blood tests.

I remember feeling this immense relief that we had answers, and I just thought to myself, “It’ll be fine, I’m gluten free, it doesn’t bother me, I know it’s worth it, she will too”.

But it was just so different for her.

While I had actively avoided gluten, I didn’t know anything about cross contamination, and had never looked into gluten in products, only avoiding the obvious things like bread and pasta. I also thought it was easy to eat out on a gluten free diet - but I soon realised that while I enjoy eating salmon and veggies, a mushroom risotto, or a grilled chicken salad at a restaurant, there really aren’t kid friendly, gluten free options on restaurant menus.

While I tried to put a positive spin on things, and research every single article and website that mentioned coeliac disease (especially in children), our girl was mourning her previous life. She desperately wanted to go to McDonalds for a cheeseburger, or eat cake at a birthday party.

That first three months were hell. There were so many tears. So much anger. So much jealousy. She would cry herself to sleep, saying over and over, "why do I have to be different”. “Why did I have to get sick”.

It broke my heart.

I also didn’t expect the repercussions that filtered through the family. I struggled with nightly dinners, and quickly found that cooking two meals every night wasn’t feasible. Finding good gluten free alternatives that everyone liked, also seemed impossible. My husband struggled with grocery shopping - label reading was overwhelming, and our grocery budget blew out from impulse buying every new gluten free product that we saw - when a lot of them didn’t even taste that great!

But the biggest struggle, was for our son who found it harder to cope with the change than I thought he would. At 12, he didn’t understand why he couldn’t go out for takeaway, or have certain foods - he didn’t have coeliac disease, why did he have to miss out too?

We stopped going out for dinners. We turned down invitations from friends. It affected every single aspect of our lives.

One shining light at that time, was my parents and my sister (and brother in law). They embraced the diagnosis, and researched it as well. My Mum would call me daily, checking ingredients as she converted all her recipes to gluten free, and my sister searched the supermarket and internet for snacks and new things for us to try. Sunday night dinners at my parents house were the highlight of my week. My brain could take the night off, knowing we were taken care of. My little nephew even proudly announced that he’d tried a gluten free snack, and started to ask at dinner times, if something she was eating was gluten free. Within the walls of our homes, it was suddenly the new normal.

When we returned to the GP for her three month check up, her coeliac markers were down, as were her liver enzymes.

By this time we were over the shock of the diagnosis, and we could see the improvements in her. She was also able to admit that she was feeling better, and while she was still hating the gluten free life, she was beginning to understand why it was necessary, and was coming to terms with it. In fact, she seemed to be much more positive overall.

Around this time, we also needed to go clothes shopping. While it had never been obvious that she was bloated, her stomach was suddenly shrinking, and she went down a pants size. She also had a big growth spurt.

As we hit the six month mark, her anxiety had almost completely disappeared, but she began to have leg and muscle pains. Around this time, our son broke his finger playing sport at school, and was sent to Westmead Children’s Hospital in South West Sydney, to have a cast put on his hand while we waited to see if he needed surgery. They asked for a family history, and when I mentioned coeliac disease, the nurse asked if the kids had bone density scans done, and if our girl was a patient at the hospital. I said she wasn’t and that our GP diagnosed her. I remember the nurse pausing, just for a second, and then saying that she thought all kids were diagnosed by a gastroenterologist. She moved on with my son’s patient intake, but it played on my mind.

Over the next month or so, our girl’s leg and muscle pains increased, and some days, she struggled to walk. I went back to our GP, and when she was stumped, I asked for a referral to Westmead Children’s Hospital.