Eosinophilic oesophagitis (EoE): symptoms, diagnosis and treatment

The main problem is difficulty swallowing (dysphagia). Guts UK explains it may feel as though food moves slowly or sticks in the chest, sometimes with every swallow, which can range from mild to severe and distressing, with or without pain. Bristol lists regurgitation, a burning or achy sensation behind the breastbone that does not respond to antacid medicines, chest pain and weight loss from eating less.

People often develop coping strategies without realising it. Guts UK and NHS Borders list excessive chewing, eating slowly, being last to finish a meal, avoiding meat and bread, preferring softer or wetter food and drinking a lot during meals. In children GOSH lists feeding aversion, poor growth, vomiting, reflux, abdominal pain, long mealtimes and avoiding difficult textures. Because symptoms are non-specific, diagnosis is often delayed.

• Food catching on the way down, particularly meat, bread or rice.

• Long mealtimes, small mouthfuls and lots of fluids to wash food down.

• Chest or upper tummy discomfort that antacids do not help.

• In children: vomiting, reflux-like symptoms, food refusal and slow weight gain.

Guts UK and Bristol both describe three broad approaches: diet, drugs and dilatation. For diet, Guts UK describes a step-up approach: removing milk first, then milk plus wheat or egg, then milk, egg, wheat and soya, and finally milk, egg, wheat, soya, fish or shellfish and nuts, with repeat endoscopy after about 8 to 12 weeks at each step. It stresses working with a dietitian who has experience in EoE. An elemental formula diet is reserved for when other approaches have failed.

Swallowed topical steroids coat the gullet and treat inflammation locally. Guts UK says budesonide or fluticasone can be used, that they help most people and work for up to 85 in 100 within 12 weeks, and that a budesonide orodispersible tablet is licensed in the UK for adults. GOSH adds that the medicine should not be washed off by brushing teeth, eating or drinking for at least 30 to 60 minutes, and that oral thrush can occur. Guts UK says proton pump inhibitors reduce inflammation in up to half of people and may suffice in milder disease.

Where the gullet has narrowed (a stricture), Guts UK and NHS Borders describe endoscopic dilatation to stretch it, which is used alongside diet or drugs. All three sources emphasise that EoE is chronic and symptoms wax and wane, so treatment is long-term and the plan is reviewed with a gastroenterologist.

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Eosinophils are white blood cells that are part of the immune system and normally present only in small numbers in the gut. In EoE they accumulate in the lining of the oesophagus (the gullet or food pipe), where they cause inflammation. Guts UK describes it as a delayed allergic condition that disrupts swallowing, and the NHS Borders leaflet notes that the inflammation is the body's natural response to injury or irritation.

It occurs in children and adults. GOSH says it is associated with other allergic conditions such as food allergy, eczema, asthma and allergic rhinitis, is more prevalent in males and is more common in children with a history of oesophageal atresia. The Bristol leaflet says it affects more men than women and is more likely if you have allergies such as asthma or hay fever.

The cause is not fully understood. Bristol says it is thought to arise from a combination of genetic makeup and the body's response to the environment. Guts UK describes it as a delayed allergic condition that can be triggered by certain foods and sometimes by breathed-in allergens such as pollen. The most commonly implicated foods are milk, wheat, egg, soya, nuts, and fish or shellfish, although not everyone reacts to all of them.

EoE is not caused by acid reflux, although GOSH notes that proton pump inhibitor medicines, normally used for reflux, can also help. Do not cut out foods before speaking to a gastroenterologist and having investigations, as Guts UK and GOSH emphasise: Guts UK warns that removing foods without expert help can lead to malnutrition.

People with symptoms that suggest EoE are usually referred for an upper gastrointestinal endoscopy, as Bristol explains, which also looks for other causes of the same symptoms such as acid damage. During the procedure small samples (biopsies) are taken; GOSH says a minimum of 6 biopsies are taken from different sites along the oesophagus and that a count of more than 15 eosinophils per high-power field, with other changes, confirms EoE. In children the procedure is usually done under general anaesthetic.

Guts UK says there is no non-invasive test to diagnose EoE in the UK, and that blood tests and X-rays are not helpful for diagnosis, and Bristol adds that a contrast (barium) swallow is not used to diagnose EoE but may look for other problems such as achalasia or a hiatus hernia. Symptoms do not always match disease activity, so repeat endoscopy is often needed after a treatment change. Guts UK says people on proton pump inhibitors should discuss with their gastroenterologist stopping them for three weeks before the first endoscopy, because PPIs can reduce eosinophils below the diagnostic threshold.

EoE is a chronic condition, and Bristol says it will need long-term management that can include preventative measures such as dietary change or medication used to treat flares. If it is not treated, scarring can narrow the gullet and require further endoscopic treatment. GOSH says that if treated effectively, symptoms and the risk of stricturing can be reduced. Bristol says that with careful and proactive management most people can maintain a good quality of life.

Eating socially can become stressful, and Guts UK notes that severe symptoms may stop people eating out and cause anxiety. A symptom log, particularly for episodes of food sticking, is useful in clinic, and families of children are encouraged by GOSH to keep one between endoscopies. Support organisations such as Guts UK and the EOS Network provide information.

Guts UK explains that food can occasionally stick so severely that nothing will pass down the gullet, called a food bolus obstruction, and that this needs urgent medical attention. If food is stuck and you cannot swallow your own saliva, you are drooling, vomiting repeatedly, have chest pain or difficulty breathing, go to A&E or call 999.

Even if the food does pass, tell your gastroenterologist about any episode of impaction, as it suggests the gullet may be narrowed or the disease active. See a GP about swallowing difficulty that persists, particularly with weight loss, rather than adjusting your diet alone.

On the NHS, a GP refers people with persistent swallowing difficulty for endoscopy, usually through gastroenterology, with dietitian and, for children, paediatric gastroenterology and allergy input. EoE is rare, so Guts UK acknowledges that finding an expert can be difficult, and that diagnosis may be delayed.

Private gastroenterology can speed up an endoscopy and biopsy, and some people also access a specialist dietitian privately. It is important that a private clinician takes the standard six biopsies and, where appropriate, has an arrangement for follow-up endoscopy to check response, because repeat testing is part of guiding diet and medicine. Bring a record of any previous endoscopy and biopsy results to appointments.