Lisa Thornton, who was in her early thirties and heavily pregnant, became aware of a blockage in her oesophagus – the muscular tube that connects the mouth to the stomach. “At the time, I just thought it was just the pregnancy,” says Thornton, now 50, who lives in the New Forest in Hampshire. “I thought it was everything pushing up. But a few years later, things started to get worse.”
While having a Sunday roast with her family, a piece of broccoli got stuck in her throat, causing spasms that lasted for hours. She tried to drink water, but it would not go down and kept coming back up. She drove to a nearby drop-in center where doctors attempted, but failed, to remove the blockage using muscle relaxants.
After nearly 20 hours, she ended up in A&E. “I was put on a drip and the doctors started to talk about an operation to stretch my oesophagus to release the obstruction,” she remembers. “As a last-ditch attempt, a young doctor gave me morphine [which has a muscle relaxant effect as well as being a painkiller]. I woke up to find that, after 36 hours, the lump had finally cleared. It had been a violent, shocking experience and no one seemed to know why or how.”
Thornton’s journey to diagnose his condition was just beginning. It would require another decade and a number of incidents before he was finally diagnosed with eosinophilic oesophagitis (EoE), which is also known as asthma of the oesophagus.
Most of us do not realize the importance of our oesophagus in our daily lives. The oesophagus is usually less than a centimetre wide when relaxed, but it can stretch to over three times its size to accommodate large pieces of food.
“It’s common to swallow a piece of solids that is two to two and a half centimetres in size,” says consultant gastroenterologist Prof Stephen Attwood. “The oesophagus has to have that stretchiness to be able to open and allow food through.”
Patients such as Thornton can develop a condition where the lining of the oesophagus becomes stiff, swollen, and unable to stretch, causing food blockages. This happens due to an excessive immune reaction caused by white blood cells known as eosinophils. While these cells are important for our immune system to eliminate harmful bacteria and parasites, they can cause allergic reactions and eczema when the immune system becomes miswired.
This condition is called eosinophilic esophagitis (EoE). When EoE was first identified by Attwood in the late 1980s, it was very rare, with estimated rates of less than 10 per 100,000 people. However, like food allergies, EoE has become increasingly common in all age groups, including young children and the elderly, for reasons that are not fully understood.
According to the British Society of Gastroenterology, approximately 63 in 100,000 people are affected by EoE, which Attwood considers technically “a common disease”.
One 2022 study in Sweden even suggested that it could affect more than one in 1,000 individuals – twice as many. “That’s the highest current estimate, but it fits entirely with what we see in daily practice,” says Attwood. “More and more patients are coming through needing assessments for this swallowing difficulty and we know we’re diagnosing it more frequently.”
Hannah Hunter, an allergy dietitian at Guy’s and St Thomas’ NHS foundation trust, has been treating patients with Eosinophilic Esophagitis (EoE) for the last ten years. Many theories have been proposed to explain the rise in EoE cases, which have also been linked to the increase in allergies, asthma, eczema, and hay fever. One of the most widely discussed theories is the hygiene hypothesis, which suggests that modern cleanliness has led to fewer childhood infections, resulting in a less trained immune system that is more prone to dysfunction.
Another plausible explanation for the increased incidence of EoE is the prolonged damage to the sensitive cells that line the esophagus caused by modern diets and common chemicals such as pesticides and detergents.
“Data does suggest there has been a genuine increase that is not explained purely by increased awareness,” says Hunter. “There are many theories as to why – less exposure to microorganisms at an early age, low vitamin D, and more exposure to highly processed foods that include additives, preservatives, sweeteners and emulsifiers.”
Awareness about EoE among many GPs is limited, even though the condition is becoming more common. According to reports, it takes an average of six years for patients to receive a correct diagnosis. Although there is now an effective medicine available, known as budesonide (sold under brand names such as Jorveza), many patients are still misdiagnosed with gastroesophageal reflux disease or indigestion.
If left untreated for several years, EoE can progress to the point where patients experience thick scarring throughout their oesophagus, making it difficult to eat normally or even swallow a small tablet.
Prof Kamila Hawthorne, chair of the Royal College of General Practitioners, says that detecting such a condition is not easy for doctors: “GPs have the broadest curriculum of any medical speciality, yet the shortest training programme, at just three years. Full diagnosis [of EoE] requires a thorough examination and a sampling of the oesophagus in secondary care settings.”
Diagnostics companies are currently developing new methods to help doctors diagnose EoE (eosinophilic esophagitis) without having to resort to a full endoscopy procedure. Traditionally, an endoscopy involves inserting a long, thin tube containing a small camera down the patient’s throat, which can be an uncomfortable and invasive experience for some. In December, Cyted, a gastrointestinal health company based in Cambridge, announced that it had been awarded a £1m grant from Innovate UK, Britain’s innovation agency, to expand the use of its EndoSign capsule sponge test. Although this test is commonly used to diagnose and monitor Barrett’s oesophagus, which is a precursor to oesophageal cancer, Cyted plans to develop it for use in diagnosing and monitoring EoE.
“This would allow for patients to be tested more quickly and with less discomfort than an endoscopy but with the same accuracy,” says Marcel Gehrung, chief executive and co-founder of Cyted.
According to Hunter, there is still a need to gain more understanding about how different types of food trigger the underlying inflammation that drives EoE, which is most commonly triggered by cow’s milk, wheat and eggs. Although EoE is distinct from the reactions typically associated with food allergies, some foods are known to have the potential to worsen the symptoms.
“It would be good to know more about the role of diet in inflammation beyond specific food triggers,” says the allergy dietician. “There is evidence that the way we eat can influence our immune system and so may have an effect on EoE. Highly processed foods, sugar and trans fat may have a detrimental effect.”
Thornton’s entire life began to revolve around avoiding various foods and experiencing heightened anxiety around eating, particularly in social settings, due to EoE. Despite being misdiagnosed for a significant period, Thornton was unaware of a new drug for the condition until she had a chance encounter with Attwood two months ago through a patient organisation. Following Attwood’s advice, she switched to a new consultant and recently began taking Jorveza, which has already had a significant positive impact on her life.
“It should be diagnosed a lot quicker as it has such an impact on your life,” she says. “I’ve been taking Jorveza since just before Christmas and it’s made such a difference. I actually had a steak last week, which I never would have done before.”