Life after a coeliac diagnosis

LIFE

CAFTER A OELIAC diagnosis

Accepting a LIFE-LONG disease.

DIAGNOSIS of coeliac disease is a transformative and intimidating time. It often follows years of unknown discomfort and pain – and while it’s a relief for many to be diagnosed, it marks the beginning of a whole new chapter. It’s a large adjustment to have to think so deeply about food and eating out. But as many people with coeliac know, it always gets better with time. Here, we share the stories of three people diagnosed with coeliac across different life stages to learn how they coped and adjusted to their new normal. the supermarket shopping; I needed handrails to help me in the shower. I became very depressed. Without the

Sue’s story In my early forties I became unwell, overnight. I woke one morning saturated with exhaustion and within hours I could barely walk. This escalated to the point where my coordination was affected, as if I had had a stroke or was quite drunk. I developed severe vertigo and nausea. Days, weeks and months disappeared with me confined to bed. I needed help to do

MICHELLE’S STORY

I CAN LOOK back and think of numerous times over several years feeling ill – bloated, constant reflux or indigestion, nausea bouts, cramping and vomiting, diarrhoea and then constipation. I was not taken seriously by my doctors, and had so many tests come back with no results. One day exactly three years ago, with an enormously bloated stomach and crying my eyes out, I visited a new doctor. I pleaded with her to help me find out what was going on with me, thinking it was something sinister. My new doctor was so thorough and so helpful, checking and testing for some answers. Sue Eventually, a test for coeliac disease came unwavering support of my husband, I would not be here today.

I made, many visits to the

back positive, and my diagnosis was confirmed by further investigation and a biopsy.

Finally, I had a reason for my ailments! I began to work through a diet plan, but mostly I was just so happy to know what was happening in my body. I realised that going on a gluten-free diet was the very least of my worries considering how much help there is!

While adjusting to a gluten-free diet can be a pain in the beginning, it can be easily worked through. Not to mention that there is so much great gluten-free food available now in supermarkets and online.

Now, I am feeling so much better and I am so thankful for my amazing doctor. If you are recently diagnosed, it is certainly not the end of the world and things could be worse. You can adapt and life is good!

doctors, to no avail. Doctors thought it was everything from a virus or a migraine through to a neurological problem. They prescribed a number of pills and tried various treatments, but nothing worked.

I started to work to regain my strength through swimming but one night we dined out and within twenty minutes, I was unconscious, breaking my tooth and nose. In hospital following the incident, we finally clicked that it might be because of food – and coeliac disease made sense, given that my dad was coeliac as well (albeit with very different symptoms!).

Post diagnosis, I had a rough couple of years – with so much inflammation in my system, I had several injuries and slowly lost the use of my left hand.

However over time, I started to eat more anti-inflammatory foods, my hand improved, and my health overall got so much better. I am in my 60s now, and am trying to make up for all that time lost to illness.

Charlotte’s story – as told by her mum When Charlotte was little, we always had trouble trying to figure out why she was crying despite all her needs being meet. She had severe abdominal pain, and eventually stopped eating and started losing weight. We had visited a dietitian who thought that she might be lactose intolerant but I pushed for a coeliac blood test. Finally, when she was two and a half years old, we got the diagnosis.

Before her diagnosis we weren’t aware of gluten and how much of it is hidden in everything. We ended up doing plenty of research and gave our kitchen a good clean up with new utensils, as well as starting fresh with gluten-free ingredients.

It’s been difficult for Charlotte growing up trying to navigate the world as a child with coeliac disease. At her school of 300 kids, she’s the only one who is gluten-free, meaning she misses out on the chocolate and lollies people bring in for their birthdays. She even had to miss school camp this year because it was too hard for the school to do her meals. She struggles to trust anyone besides her dad and me to give her food and when her twin sister is eating gluten, they have to stay apart.

Life with coeliac disease is certainly not an easy road, and it can lead to a lot of frustration. But as Charlotte grows up, she begins to learn more and more about what gluten is and how to read ingredients to know whether she can or can’t eat something. We enjoy baking things she can enjoy – mostly anything with chocolate! Now that she’s ten years old, I hope that she’ll know one day how to manage her disease completely on her own.

As the years fly past Charlotte has learnt what she can and can’t eat and how to read food labels.

Charlotte

Having coeliac disease and following a strict gluten-free diet is not all doom and gloom. We just need to be prepared for any situation! CL

SHERYL’S STORY

When everyone told me the first six months would be the hardest, they were right!

BUT NOW, as I approach two years diagnosed with coeliac disease, I am the most comfortable I’ve been post-diagnosis although it’s certainly been a journey!

Even though I stopped eating gluten straight after my biopsy, it took a long while for my symptoms to subside. My immune system was shot so I had colds and flu for the best part of the year, and I struggled with reflux and bad headaches.

My overwhelming memory of those first six months is being tired and frustrated by having to expend so much mental energy thinking about food. What was I going to eat? Where could I get safe food when I was out? Which restaurants or cafes were safe to eat at? Food was suddenly my sole focus.

I’m blessed with a fantastically supportive family and friends who have gone out of their way to learn about coeliac disease and ensure I’m catered for. Despite some initial incredulity that their much-loved barbecue was a potential source of contamination and that glutencontaining and gluten-free food couldn’t go in the same container, they have embraced the new rules.

Everyone is happy to eat out where I can enjoy the food – it just means I’m now organiser-inchief when it comes to bookings! At work I’m asked for venue suggestions if we are eating out and I’ve learned to do restaurant research ahead of time when going to a new town or suburb.

If you are new to this, it’s okay to get sad, frustrated and overwhelmed. Just know that it will get better. A friend asked me this week if I’m ever tempted to eat gluten. The honest answer is no. Eating glutenfree has become second-nature!