Our Journey to Coeliac Disease

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

I share our story, and our daily lives, in the hopes that it will educate and empower others to ask questions, and seek help to find answers if you, or someone in your family, just isn’t feeling quite right. And if you already have your Coeliac diagnosis – I share with the hope that you don’t feel quite so alone. I hope that you are inspired to create good food, and that you continue to have those amazing social interactions that are centred around food and laughter and good company.

This is our story…

In 2014, 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, slip back into normal eating habits, and slowly go back down hill. The exhaustion and anaemia would return, and over time, stomach aches, and eventually stomach side effects would come with it. I felt awful. I also developed a rash on the back of my arms, that would come and go as I changed my diet. I knew it had to be related. Eventually, I tried to go back on a normal diet, and I just couldn’t. The stomach side effects were so bad, I was in constant discomfort. I’d realised over time, that gluten was the issue, and so decided to just cut it for good.

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. Finally, it came to a head at her dance competition in 2022. She came off the floor, and fell into my arms and cried. I didn’t understand, as she’d won, but she just 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 the day googling, looking into childhood anxiety, and when I put 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.

I took her to the GP, and while our girl waited outside with her Dad, I explained all my worries, and had a little cry. She immediately told me that I know my child best, and if I was worried, so was she. The dr asked me to call them in. The dr asked her about how she’s been feeling, and she ordered blood tests. I asked for coeliac tests to be done at the same time, and explained my history, and wondered if that could be the problem. She did the tests, and we waited. They came back off the charts. She was also severely anaemic, she was low in most vitamins, and her liver enzymes were high.

Our GP said to start her on a gluten free diet immediately, and to bring her back in three months, for repeat blood tests. When we returned, her coeliac markers were down, as were her liver enzymes. Over the next six months, her anxiety almost completely disappeared, but her iron levels didn’t increase as expected, and she began to have leg and muscle pains, that would bring her to tears. Some days, she struggled to walk. Our GP referred us to Westmead Children’s Hospital, and it was then I realised, we’d gone about her diagnosis all wrong.

Her gastroenterologist was concerned that she hadn’t been referred to him six months ago, and worried that she may not have Coeliac, and may have another auto-immune disorder, that was throwing up coeliac markers. He tested her for everything he could think of, but it all came back negative. She still wasn’t improving. Finally, his recommendation, was to do a 12 week gluten challenge, and see what showed up.

While she was loving life, eating all the gluten, we watched her tummy swell, her brain fog return, the aches and pains increase, and her anxiety return with full force. Her exhaustion levels also skyrocketed. She was struggling. 18 weeks later, her blood tests again only showed coeliac markers, but this time, they weren’t sky high. Her gastroenterologist ordered an endoscopy to make a final diagnosis. 

We were so lucky to only wait 2 weeks for her procedure, and finally, 13 months after her diagnosis journey started, it was official. She was diagnosed with coeliac disease – with a marsh grade of 3B (this is when your intestinal villi have shrunk significantly, though she did have patches of complete villous atrophy, where the intestine is completely flat, and there are no villi left).

A year on, it still breaks my heart that her journey was so tough – she has so much trauma around food, and eating out now, but it is something that we work on every day.

As for my own diagnosis - I know I'm positive for both genes that increase the risk of Coeliac Disease (as is our girl), and I have other autoimmune diagnosis' (and chronic illness') that make Coeliac more likely. My doctors currently don't want me to do the challenge as it will put my very unhappy body under more stress, but I do wonder every day, if I have it or not...

Will I ever do the gluten challenge you ask? One day, I think I will, but for now, I'm healing, and getting my body stronger every day, so that when the day comes to find out, it can handle it...

JO xo