I’ve just been diagnosed with the same disease as 1 in 100 people – but I’ve never felt lonelier

When I returned from a blissful holiday a couple of months ago, I received several missed calls from my doctor and a message to call my surgery urgently.

“We’ve had the results back from your latest blood tests, and it appears you have coeliac disease,” my GP told me, as I returned to reality with a huge bump. He was almost gleeful that he had finally figured out the core reason for the fatigue and other bizarre symptoms that had been plaguing me for months.

As I have two friends with the condition, I thought I was fairly knowledgeable about coeliac disease. According to charity Coeliac UK, one in 100 people are estimated to have it, albeit more than a third of those are thought to be undiagnosed. Team GB Olympic swimmer Rebecca Adlington also recently spoke out about her diagnosis. But as a whirlwind of medical testing, scans and adjusting to a life-long restrictive diet followed, I started to feel more and more alone.

Coeliac disease is where the body’s immune system attacks its own tissues when gluten is eaten – which is present in wheat, barley and rye – and prevents normal digestion and absorption of food. There are dozens of symptoms, including fatigue, stomach pain, nausea, anaemia and neurological issues like “brain fog”. And if the condition is not managed, it can cause serious health complications, including malabsorption, osteoporosis, infertility and even certain types of cancer.

There is no medication, and the only treatment for coeliac disease is adhering to a strictly gluten-free diet and avoiding cross-contamination with foods that contain gluten.

One of the biggest misconceptions about the disease is that “it’s just a food allergy”, but it actually leads to long-term damage to the gut. That’s why it’s crucial for sufferers to avoid eating even a crumb of gluten. However, if managed correctly, sufferers can lead a healthy, symptom-free life.

In recent weeks, when revealing my diagnosis out of both choice and necessity, I received comments such as: “So can’t you have a tiny bit of gluten occasionally?”, “Can you just try one?” and shockingly, even: “If I was diagnosed with that, I don’t think my life would be worth living any more.”

This is a medical condition, not a lifestyle choice. People’s lack of understanding, combined with a struggle to find restaurants that will cater properly for gluten-free diets, left me feeling increasingly isolated.

Until my diagnosis, I didn’t realise gluten-free products aren’t truly safe unless they have been prepared and cooked in a contamination-free environment. For example, they can’t be fried in oil also used to cook gluten-containing items. I’m a very social person and having to check restaurant menus whenever I’m invited anywhere, insisting on specific catering for hen parties, weddings and events over the summer, and requesting my partner to have a kitchen free from gluten has left me feeling like a burden and takes up a lot of energy.

Facing going to the supermarket remains my biggest personal challenge. I feel self-conscious about having to check the label of almost everything I pick up, and I am always horrified at the increased cost of my shopping when I reach the checkout.

It’s not always as bad as I make out. I will soon adapt to the life changes, and I have an amazing support network in my family, friends and partner. There are definitely more options available than a decade or 20 years ago, with gluten-free bread and pasta much improved, and I’ve managed to find some amazing communities online that offer support, advice and healthy recipe options.

However, following my diagnosis, I was shocked to discover that prescriptions for gluten-free staple foods, such as bread and flour, are only available depending on where in the country you live. Research by Coeliac UK last year found people with the condition are paying up to 35 per cent more for their weekly food shop, particularly in light of the cost of living crisis.

I’m in a relatively privileged position when it comes to managing my health, as I can afford the more expensive free-from products, and I live in London, where there is a much wider range of options for restaurants and supermarkets than in other smaller towns. But for many, that’s not the case. And even those with access to free prescriptions may not benefit if gluten-free food is not available on prescription in their area. This may lead to people eating food that contains gluten for cost reasons, leaving them open to short- and long-term health problems, and adding further pressure to an already-overstretched NHS.

Earlier this year, a petition signed by 22,000 people was brought to Downing Street calling for an end to the postcode lottery on gluten-free prescriptions. And to mark Coeliac Awareness Month this May, Coeliac UK is encouraging people to take its online self-assessment to check their symptoms and spread knowledge about the disease.

The more people who are correctly diagnosed means those with coeliac disease are more likely to be recognised and catered for, and fewer of us are likely to feel alone.