Coeliac Disease And Gluten Sensitivity

Overview

Coeliac disease is a health problem where your immune system (your body's defence system) reacts to gluten. Gluten is a protein found in wheat, barley and rye. In coeliac disease, eating gluten causes the immune system to damage the lining of the small bowel (the part of the gut that soaks up nutrients from food). The damage makes it hard for your body to take in vitamins, minerals and goodness from food. 'Gluten sensitivity' (often called non-coeliac gluten sensitivity) is different. People get real symptoms after eating gluten, but their gut lining is not damaged and the coeliac tests come back normal. Coeliac disease is not a food allergy, and it is not a lifestyle choice or a fad.

Coeliac disease is fairly common. It affects about 1 in 100 people worldwide. Many people who have it do not know, because symptoms can be mild, vague, or seem to come and go. Gluten sensitivity is less well understood, and it is not clear exactly how many people have it.

Anyone can get coeliac disease, at any age, from babies to older adults. It is more common in women than in men. It runs in families, so if a close relative has it, your chance of having it is higher. It is also more common in people with other autoimmune conditions, such as type 1 diabetes or thyroid problems, and in people with certain genetic conditions such as Down syndrome.

Symptoms

Common symptoms

• Belly pain, bloating and passing a lot of wind
• Diarrhoea or constipation, or both at different times
• Feeling very tired, even after a good night's sleep
• Low iron levels (anaemia), which can cause pale skin and breathlessness
• Mouth ulcers that keep coming back
• Losing weight without trying
• Feeling sick or being sick
• An itchy, blistery rash, often on elbows, knees or buttocks
• Tingling or numbness in hands and feet
• Fuzzy thinking or trouble concentrating
• Low mood or anxiety
• For some people, no gut symptoms at all, which can make it harder to spot

Symptoms in children

• Not growing or putting on weight as expected
• Being shorter than expected for their age
• Tummy pain, bloating, diarrhoea or constipation
• Being irritable, clingy or unusually tired
• Poor appetite and being sick
• Puberty starting later than expected
• Weak or discoloured tooth enamel
• Slow development or poor school performance in some cases

Symptoms in older adults

• Anaemia that keeps coming back, even with iron tablets
• Tiredness and weakness that is put down to 'just getting older'
• Thinning bones (osteoporosis) or more broken bones than expected
• Weight loss and poor appetite
• Tingling, numbness or balance problems
• Mouth ulcers or a sore, red tongue
• Symptoms that are mistaken for irritable bowel syndrome (IBS) or a sensitive gut

Causes

Main causes

• Coeliac disease happens when the immune system wrongly attacks the gut lining after gluten is eaten. It needs three things to line up: certain genes, eating gluten, and a trigger that switches it on.
• It is not caused by anything you did or did not do, and it is not caused by a bad diet or poor parenting.
• Gluten sensitivity is not fully understood. It may involve the way the gut, the immune system and the brain interact, rather than damage to the gut lining.
• Sometimes symptoms that seem to be caused by gluten are actually caused by something else, such as IBS, wheat allergy, or a problem with certain sugars in food.

Risk factors

• Having a parent, brother, sister or child with coeliac disease
• Having another autoimmune condition, such as type 1 diabetes or thyroid disease
• Having Down syndrome, Turner syndrome or Williams syndrome
• Being female
• Having certain gene types (found by a gene test), although many people with these genes never get coeliac disease

When to see a doctor

See a doctor urgently if:

• Severe or worsening belly pain
• Blood in your stools or black stools
• Signs of dehydration: very dark urine, passing little urine, dizziness, confusion
• Quick, unexplained weight loss
• Vomiting that will not stop

Book a routine appointment if:

• Ongoing bloating, wind, diarrhoea or constipation that does not settle
• Tiredness that does not improve with rest
• Low iron levels, especially if iron tablets do not seem to help
• Mouth ulcers that keep coming back
• An itchy blistery rash
• Poor growth or delayed puberty in a child
• A close relative has coeliac disease and you want to be checked
• You feel unwell every time you eat bread, pasta or other wheat foods and want to find out why

Diagnosis

The first step is usually a blood test arranged by your doctor. It looks for antibodies (proteins your body makes when it reacts to gluten). This test only works if you are still eating gluten. You need to eat gluten every day for about six weeks before the test. If the blood test suggests coeliac disease, you will usually be referred to a gut specialist for a small camera test called an endoscopy. If coeliac disease is ruled out but you still feel unwell with gluten, your doctor may investigate other causes and then, with your permission, suggest trying a gluten-free diet for a set time to see if it helps.

Tests that may be done

• A blood test for coeliac antibodies, plus a check of your total antibody level
• A check of your iron, vitamin B12, folate, vitamin D and calcium levels
• An endoscopy: a thin flexible tube with a camera goes down your throat while you are lightly sedated. Tiny samples (biopsies) are taken from the gut lining.
• A gene test, sometimes used to rule coeliac disease out rather than in
• A skin specialist check and small skin sample if you have an itchy blistery rash
• A bone density scan if there is concern about thin bones
• For gluten sensitivity: tests to rule other things out, followed by a planned trial of a gluten-free diet and then, if needed, reintroducing gluten to see what happens

What to expect at your appointment

The blood test is quick and feels like any other blood draw. Endoscopy sounds daunting but is usually over in about 10 to 15 minutes, and most people remember little of it because of the sedation. You may have a sore throat or feel bloated afterwards for a few hours. Results of the biopsy usually take one to two weeks. The most important thing to know is this: keep eating gluten until all your tests are finished. If you stop too early, the tests can come back falsely normal and the diagnosis can be missed.

Treatment

There is no cure for coeliac disease, but it can be managed very well. The treatment is a strict, lifelong gluten-free diet. That means avoiding wheat, barley and rye, and being careful about oats, which are often contaminated with gluten. For most people, the gut lining heals and symptoms improve within weeks to months. Gluten sensitivity is managed in a similar way, but some people find they can tolerate small amounts, and the diet is usually guided by your symptoms with help from a dietitian.

Self-care at home

• Learn to read food labels. Gluten can hide in sauces, soups, stock cubes, sausages, ready meals and some sweets.
• Ask your pharmacist whether your medicines, vitamins and supplements are gluten-free. Some tablets and capsules contain gluten.
• Be careful with cross-contamination in the kitchen: use separate chopping boards, toasters and butter, and wash utensils well.
• Keep a simple food and symptom diary at the start, so you can see patterns and spot accidental gluten.
• Plan ahead for eating out: check menus online, tell staff clearly, and avoid places that cannot guarantee gluten-free cooking.
• Have a small supply of safe snacks with you so you are never caught out.
• Have regular check-ups, including blood tests for vitamins and minerals, and bone health checks if your doctor advises them.

Medical treatments

The main treatment is the gluten-free diet itself, with support from a dietitian who can help you plan meals, keep it balanced and avoid hidden gluten. Your doctor may test your levels of iron, folic acid, vitamin B12, vitamin D and calcium, and suggest supplement tablets if any are low. Sometimes a short course of iron or vitamin tablets is needed. Your care team may also recommend certain vaccinations, because coeliac disease can raise the risk from some infections. Bone density checks may be arranged for some people. Always ask your doctor or pharmacist before starting any supplement or medicine, and mention that you need gluten-free products.

When is surgery considered?

Surgery is not a treatment for coeliac disease or gluten sensitivity.

Living with this condition

The first few months of a gluten-free diet can feel like hard work, with a steep learning curve. Most people find it becomes much easier with practice. Shopping gets quicker, favourite meals get swapped for gluten-free versions, and eating out becomes normal again once you know your safe places. Try to focus on what you can eat. Fresh fruit and vegetables, plain meat and fish, rice, potatoes, corn, quinoa, eggs, beans and most dairy foods are naturally gluten-free. A dietitian can be a huge help here.

Lifestyle tips

• Tell friends, family and workmates what coeliac disease is, so they can support you and understand it is not fussiness.
• Keep gluten-free bread and pasta in the freezer or cupboard so you always have a backup meal.
• Check labels every time, even on products you have bought before, because recipes change.
• Be careful with beer and some spirits; many wines and spirits are gluten-free, so ask if you are unsure.
• Watch out for non-food products that may contain gluten, such as some lip balms, toothpaste and cosmetics.
• Join a coeliac or gluten-free patient group. Shared tips and product lists can save a lot of time and worry.
• Build in rest and gentle activity while your body heals, especially if you have been low in iron.

Diet and exercise

A gluten-free diet still needs to be a balanced one. Make sure you get enough fibre from gluten-free wholegrains, beans, lentils, fruit and vegetables, since many gluten-free products are lower in fibre. Watch out for gluten-free products that are high in sugar and fat. Try to eat plenty of iron-rich foods, such as lean meat, beans and leafy greens, and enough calcium for your bones. Exercise helps your bones, your mood and your gut. Weight-bearing activity such as walking, dancing or light weights is especially good for bone strength. Build up gradually and drink enough water.

Mental health and emotional wellbeing

It is completely normal to feel upset, angry or anxious when you are first diagnosed. Food is part of family life, celebrations, travel and culture, and being told to avoid gluten can feel like a big loss. Some people feel embarrassed about eating out or worry constantly about making a mistake. These feelings usually ease with time and knowledge. If low mood, worry or disordered eating thoughts are affecting your daily life, please tell your doctor. Help is available. If you ever have thoughts of harming yourself, contact your local emergency number or a crisis support line in your country straight away.

Prevention

Coeliac disease cannot currently be prevented. There is no diet or lifestyle change proven to stop it from developing in someone who is genetically at risk. What you can do is catch it early, which is why testing is offered to people with symptoms and to close relatives of people with coeliac disease. Gluten sensitivity also cannot be prevented, but symptoms can be managed once you understand your triggers.

Vaccines

There is no vaccine for coeliac disease. Because coeliac disease can raise the risk from some infections, your doctor may recommend certain routine vaccinations for you. Ask your practice which ones are advised in your situation.

Screening programmes

Testing without symptoms is offered in some situations, because coeliac disease can quietly damage the body. This includes first-degree relatives of people with coeliac disease, and people with type 1 diabetes, autoimmune thyroid disease, or certain genetic conditions. If you think you may be in one of these groups, ask your doctor whether you should be tested. Remember: keep eating gluten until testing is complete.

Complications

If left untreated

• Anaemia (low iron or low vitamin levels) causing tiredness and breathlessness
• Poor growth, delayed puberty and weak teeth in children
• Thinning bones (osteoporosis) and a higher chance of fractures
• Feeling generally unwell, with low energy and low mood
• Trouble getting pregnant or problems during pregnancy
• Nerve problems such as tingling or numbness in hands and feet
• In rare cases, a small increase in the risk of some gut cancers, such as lymphoma. This risk is very low and drops once coeliac disease is treated with a gluten-free diet.
• For gluten sensitivity, the main risk of leaving it unmanaged is ongoing discomfort and poor quality of life, rather than gut damage

Long-term outlook

The outlook is good. Once coeliac disease is found and treated with a strict gluten-free diet, most people feel much better, their gut heals, and the risk of complications falls. It takes commitment and some planning, but it becomes a normal part of life for most people. Many describe feeling better than they have in years. Gluten sensitivity is usually manageable too, with guidance from your doctor and dietitian. If symptoms do not improve on a gluten-free diet, tell your doctor. There is usually another explanation to find and another step to take.

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