The Hidden Struggle

Despite not having coeliac disease myself, the impact of my sister having the condition was huge. Things I’d never given much thought to became banned in our house.

‘Did you just use that knife on your toast and put it back in the butter?’ Not allowed. Cross contamination.

‘Did you just put my pizza on the same tray as yours?’ Not allowed. Cross contamination.

‘Did you just dip your crisps into this salsa?’ Not allowed. Cross contamination.

Maybe it doesn’t seem like a huge impact, but habits are hard to break. And having to teach myself new ones, after years of the same routine, was something that I found challenging.

And I have no doubt that it was far worse for Anna.

At the age of eighteen, all of the foods that she once loved and grew up eating became the very thing that was making her ill.

And the difference between me and her is that, when we are apart, I can forget all of those food related worries. But she will never be able to leave those concerns behind. 

As we just heard from Cristian, the average time it takes to be diagnosed with coeliac disease is thirteen years. And even though that is not always the case, getting a diagnosis can be a difficult and confusing process.

He also explained that ‘up to 25% of people living with coeliac disease have previously been diagnosed with IBS (irritable bowel syndrome), simply because the digestive symptoms are so similar.’ With these ambiguous symptoms and the high possibility of a misdiagnosis, there is no surprise that some people face major struggles when it comes to getting their correct diagnosis.

In 2021, Riccardo Dalle Grave, Head of the Department of Eating and Weight Disorders at the Villa Garda Hospital, wrote the article ‘The Coexistence of Eating Disorders and Celiac Disease’. He detailed how coeliac disease could trigger the development of an eating disorder and how, living with both coeliac disease and an eating disorder ‘increases the likelihood of developing severe complications of coeliac disease’. 

He also referenced a study that was conducted using the Swedish National Patient Registry. In 2017, a group of researchers used this registry to study the link between coeliac disease and anorexia nervosa and found a strong correlation. They concluded that this link should be heavily considered during the diagnosis process and any follow-up appointments. Unfortunately, there is still a lack of professional research in examining this correlation in-depth.

Despite Laura and Anna being diagnosed in their late teens, coeliac disease can develop at any point in a person’s life – including childhood.

In 2022, Coeliac UK announced their ‘No More Lost Childhoods’ campaign – aiming to help parents identify signs of the disease. They found that 25% of children in the UK had to wait over two years to receive a diagnosis. But for children that are silently struggling, eating gluten can lead to stunted growth and delayed development. Heidi Urwin, Director of Evidence and Policy at Coeliac UK, said that this diagnosis delay in children was partly due to ‘a general lack of awareness of the key symptoms of coeliac disease.’

And unexpectedly for Debbie Bath, it was only after her three year old son was admitted to hospital with pneumonia, that they found out he also suffered with coeliac disease.

‘He was admitted in October last year and he was also anaemic, so they did lots of blood tests. But it wasn’t until March that he was officially diagnosed.’

Her son has now been referred to a gastro-paediatrician and dietitian, but they are yet to hear anything back.

‘The only advice we’ve been given, is to follow a gluten free diet and look at Coeliac UK for more information. But for a little boy who’s been very poorly due to anaemia and a damaged gut lining, I just don’t think that’s good enough.’

Despite this, coeliac disease is actually more frequently diagnosed in people between the ages of 40-60 years old. But this presents even more struggles and challenges, as people try to adapt to their new condition.

Source: beyondceliac.org

‘I thought my life was over.’

Linda Brown, 58, lives in Australia and was diagnosed with coeliac disease fifteen years ago. However, she suffered with tiredness and stomach aches since her early twenties.

‘My GP could never find the cause of my symptoms and then, after having my baby at 32, I was told it could be post-partum depression.’

‘It was only at 43 that I needed a blood test for an unrelated issue, they told me I had coeliac disease. I remember bursting into tears, but now I realise it was the best thing that could’ve happened to me – I feel better at 58 than I ever did at 40!’

Now, Linda has higher energy levels and no pain when she eats, but she admits that the diet was hard at first – especially when eating out.

‘I used to be quite shy about it, but I’ve had to learn to speak up for myself and double-check everything. It can get quite tiresome, but I need to do it to ensure I won’t be glutened.’

And having access to these safe foods is probably one of biggest struggles that those living with coeliac disease have to face.

The struggle from above

Where there is a struggle, there is also a fight.

That even applies to coeliac disease.

For many years, Coeliac UK has recognised the difficulties that come hand in hand with the condition. And, as both a charity and patient representative, they continue to find ways to offer support and ease daily struggles. They provide free information on a range of topics, such as how to cope with diagnosis, local support groups and offering travel guides. But it is not just information they provide. Coeliac UK doesn’t just want to help people navigate ways around a glutenous society – it is real institutional change that they are after, and advocating for this goal is something Tristan Humphreys knows too well.

As Head of Advocacy at Coeliac UK, Tristan works within the Evidence Policy team, but there are many different sectors within this team too – these include food policy, health policy and research. All of which have very different purposes, for example securing funding, engaging with healthcare professionals and providing food safety schemes. Despite this, the same overarching goal is shared – to create positive changes for those with coeliac disease.

But in his position, Tristan’s role goes above and beyond simply asking policy makers for change.