Could it be coeliac disease?

For many, food is joy, connection, and comfort but for those with coeliac disease, it can also be a hidden trigger for exhaustion, pain, and long-term health complications.  

For years, Rebecca Adlington OBE, the four-time Olympic medal-winning swimmer, pushed through exhaustion, stomach pain, and recurring mouth ulcers. As an elite athlete, she was used to physical challenges, but these symptoms didn’t fit the narrative of training fatigue or everyday stress. She chalked them up to hormonal shifts following pregnancy, hoping they would subside. Instead, they persisted. 

 “I suffered with stomach pain, fatigue, mouth ulcers, bloating, and constantly felt run down or ill,” Rebecca recalls. “The tiredness affected both my personal and professional life as I didn’t feel as productive or have enough energy like other people.” 

Her symptoms escalated. Despite maintaining a healthy lifestyle, she found herself struggling with low energy and discomfort. The persistent stomach pain, combined with two miscarriages, prompted her doctors to dig deeper, ultimately leading to the discovery she hadn’t seen coming – coeliac disease. 

Rebecca was diagnosed in October 2024 at age 35, and the revelation was nothing short of life-changing. 

The reality of undiagnosed coeliac disease

Rebecca’s story is far from unique. Coeliac disease is a serious autoimmune condition affecting 1 in 100 people in the UK, yet an estimated 500,000 individuals remain undiagnosed. That means countless people, possibly for years, are living with unexplained symptoms that impact their daily lives, from persistent fatigue to painful digestive issues and long-term health risks. 

“Coeliac disease is a gluten-reactive autoimmune disease characterised by specific damage to the small intestine,” explains Robyn Puglia, a nutritional therapist and ION graduate. “The inflammation and damage from active coeliac disease can affect any tissue in the body, but to be coeliac disease it must include damage to the villi [finger-like projections made up of cells that line the entire length of your small intestine]. “When someone with coeliac disease consumes gluten, their immune system mistakenly attacks these villi, causing them to become inflamed and flattened. This damage impairs the intestine’s ability to absorb nutrients from food.” 

Despite how common coeliac disease is, awareness remains low. According to charity Coeliac UK, only 36% of people with the condition have been medically diagnosed.¹ For those affected, an official diagnosis can transform their health, yet many endure symptoms for years without realising their body is reacting to gluten – a protein found in wheat, barley and rye. 

To address this gap, Coeliac UK launched its Coeliac Awareness Month campaign, encouraging individuals to ask themselves the question: Is it coeliac disease? The charity offers a free online self-assessment tool designed to guide people toward testing if their symptoms align with clinical guidelines. 

A diverse experience 

Rebecca’s experience is just one among thousands. For example, Anita, 43, from Worcestershire, discovered her coeliac disease during a routine GP appointment, completely unaware that her symptoms were linked to an autoimmune condition. 

“I was shocked,” Anita shares. “I didn’t even realise my symptoms aligned with coeliac disease.” 

For Anita, adjusting to a strict gluten-free diet was challenging at first, but over time, it became second nature. Years later, she now serves as a Coeliac UK Board Trustee, helping guide the charity’s strategy. 

Her experience reinforces a key takeaway: many individuals aren’t aware of what their symptoms mean, leading to years of unnecessary discomfort. 

Symptoms beyond the gut 

Many people assume coeliac disease only presents with digestive issues like bloating, nausea, diarrhoea and stomach pain. While these are common, the reality is far more complex and wide-ranging. 

According to Puglia, coeliac disease can disguise itself in symptoms far beyond the gut. 

“The inflammation and damage from active coeliac disease can affect any tissue in the body,” she explains. “The most common complaints are fatigue, brain fog, skin issues, and immune-mediated weakness.” 

For years, Puglia herself battled unexplained symptoms – eczema, migraines, infections and anaemia – until her own diagnosis at age 23 helped her reclaim her health. 

The journey after diagnosis 

For Adlington, the months following her diagnosis required major adjustments – but they were worth it. 

“My diet has changed the most,” she shares. “I’ve had to cut out all gluten. To achieve a balanced diet, I eat things that naturally don’t have gluten, like rice and potatoes, but also rely on gluten-free substitutes for bread and flour.” 

Gluten-free living presents unique challenges – not only in finding suitable replacements but also in managing costs. “Shopping takes longer as you have to examine every label and ingredient to make sure it doesn’t contain gluten,” she adds. 

Despite the challenges, Rebecca has noticed remarkable improvements in her health. 

“Since removing gluten, I feel significantly better. My mood, my energy – everything is better. I am not in pain anymore, and I can exercise more as I feel better.” 

Advocating for diagnosis and awareness 

One of Rebecca’s biggest regrets is not getting tested sooner. 

“If you are experiencing ongoing symptoms or issues like I had, just ask the doctor for a test,” she urges. “I never even thought I might have coeliac disease, but I wish I had asked my doctors to test me sooner.” 

Her story echoes Coeliac UK CEO Hilary Croft’s message about the life-changing impact of getting diagnosed. 

“For those battling unexplained symptoms, a coeliac disease diagnosis can be transformative. Our campaign aims to increase awareness and guide people toward recovery.” 

The Coeliac Awareness Month campaign focuses on sharing real stories, like Rebecca’s, to help individuals recognise symptoms, take the online assessment, and pursue medical testing. However, one critical piece of advice stands out: don’t remove gluten from your diet until tested, as doing so could result in a false negative diagnosis. 

Advice from a nutritional therapist

For many, including Puglia, the path to diagnosis is rarely straightforward.

She urges individuals to be proactive: “Get familiar with the full list of symptoms so you can discuss them with your doctor. This is especially important if you’re advocating for a child, as coeliac disease can manifest in brain fog, behavioural shifts, and immune-related issues, not just gut symptoms.” 

For those whose test results are inconclusive, Puglia advises careful consideration of the next steps. “If the test results come back negative but you know you feel better when gluten-free, discuss the pros and cons of an official diagnosis versus simply living strictly gluten-free with a health professional.” 

More than just a dietary issue, coeliac disease is an autoimmune condition, meaning the immune system itself is the source of the problem, not the gut. “Your gut is the target, not the originator of the issue,” Puglia emphasises. “Because of that, it’s important to think holistically about immune health, rather than limiting interventions to digestion alone.” 

But there’s also a bright side: adapting to gluten-free living doesn’t mean sacrificing a love of food. “There’s a whole delicious world outside of gluten,” Puglia assures. “When you’re first diagnosed, it can feel like a big change, and it’s normal to grieve gluten. But eventually, a day will come when you won’t even miss it.” 

A call to action 

Rebecca Adlington’s story, alongside countless others, serves as a powerful reminder that coeliac disease is more than just an intolerance, it’s a lifelong autoimmune condition that requires vigilance, education, and support. 

_{1 Yvonne Nartey, Colin Crooks, Timothy Card, Joe West, Laila Tata. Incidence and Prevalence of coeliac disease across the United Kingdon; University of Nottingham December 2021 (Coeliac UK internal report, as yet unpublished)}