Coeliac disease living in adults

Overview

Coeliac disease is an autoimmune condition where eating gluten - a protein found in wheat, barley, and rye - causes the immune system to attack the lining of the small intestine. This damages the intestine and prevents it from absorbing nutrients properly.

Coeliac disease affects about 1 in 100 people worldwide, but many are not diagnosed. It is more common in people of European descent.

Coeliac disease can affect anyone at any age, but it is more common in people who have a family history of the condition, certain genetic markers (HLA-DQ2 or HLA-DQ8), or other autoimmune conditions like type 1 diabetes or thyroid disease.

Symptoms

Common symptoms

• Diarrhoea or constipation
• Bloating and wind
• Tiredness and fatigue
• Unexplained weight loss
• Anaemia (low iron levels)
• Abdominal pain
• Nausea and vomiting
• Skin rash (dermatitis herpetiformis) – itchy, blistering rash on elbows, knees, or buttocks
• Mouth ulcers
• Joint or bone pain

Symptoms in children

• Slow growth and short stature
• Delayed puberty
• Irritability and behavioural changes
• Chronic diarrhoea or bulky, pale stools
• Weight loss or poor weight gain

Symptoms in older adults

• Fatigue without other symptoms
• Bone pain or osteoporosis
• Unexplained anaemia
• Neurological symptoms like numbness or tingling in hands and feet

Causes

Main causes

• Coeliac disease is an autoimmune reaction triggered by eating gluten in people who have a genetic predisposition (certain genes). The immune system mistakenly attacks the lining of the small intestine.

Risk factors

• Family history – having a first-degree relative (parent, sibling, child) with coeliac disease
• Having another autoimmune condition, such as type 1 diabetes, thyroid disease, or Addison's disease
• Having Down syndrome or Turner syndrome
• Certain genetic markers (HLA-DQ2 or HLA-DQ8)

When to see a doctor

See a doctor urgently if:

• If you have sudden severe abdominal pain with vomiting or inability to pass stool
• If you have signs of severe dehydration (dry mouth, little urine, dizziness)

Book a routine appointment if:

• If you have ongoing digestive symptoms like diarrhoea, bloating, or abdominal pain
• If you feel tired all the time for no obvious reason
• If you have a family member with coeliac disease and are worried
• If you have an unexplained skin rash that looks like dermatitis herpetiformis

Diagnosis

Diagnosis involves a blood test to look for specific antibodies, followed by a biopsy of the small intestine to confirm damage. You must be eating gluten regularly (at least one slice of bread per day for 6 weeks) for the tests to be accurate.

Tests that may be done

• Blood test for IgA tissue transglutaminase (tTG) antibodies
• If blood test is positive, an endoscopy with biopsy of the small intestine
• Sometimes genetic tests for HLA-DQ2 and HLA-DQ8, but these are not always needed

What to expect at your appointment

Your GP will refer you to a gastroenterologist (a doctor specialising in the digestive system) for the endoscopy. The procedure is done under sedation and is not painful. You can usually go home the same day. A dietitian will help you learn about the gluten-free diet after diagnosis.

Treatment

The main treatment for coeliac disease is a strict, lifelong gluten-free diet. This means avoiding all foods and drinks containing wheat, barley, and rye. Even tiny amounts of gluten can cause damage. Most people start to feel better within weeks to months.

Self-care at home

• Learn to read food labels carefully for hidden gluten
• Avoid cross-contamination – use separate toasters, utensils, and chopping boards for gluten-free foods
• Choose naturally gluten-free foods like fresh fruits, vegetables, meat, fish, eggs, dairy, rice, potatoes, and legumes
• Look for gluten-free labelled products from reputable brands
• Inform restaurants and friends about your dietary needs

Medical treatments

Your doctor may prescribe vitamin and mineral supplements if you have deficiencies, such as iron, vitamin B12, folic acid, or vitamin D. No medications are available to treat coeliac disease itself. A dietitian will help you plan nutritious meals.

When is surgery considered?

Surgery is not a treatment for coeliac disease. It may be needed only for complications like a rare type of intestinal lymphoma or bowel obstruction, but this is very uncommon with proper diet.

Living with this condition

Living with coeliac disease means planning ahead for meals, especially when eating out or travelling. You need to be vigilant about checking ingredients and asking about food preparation. Over time, it becomes a routine and many people manage very well.

Lifestyle tips

• Join a support group (online or in-person) to share tips and experiences
• Keep a food diary to track symptoms and identify hidden sources of gluten
• Learn which restaurants and cuisines are gluten-free friendly (e.g., many Thai, Indian, or Italian dishes can be adapted)
• Carry gluten-free snacks when you travel

Diet and exercise

A gluten-free diet can be healthy and balanced. Focus on naturally gluten-free whole foods. Regular exercise is important for overall health and can help with any bone density issues. Consult a dietitian to ensure you get enough fibre, iron, calcium, and B vitamins.

Mental health and emotional wellbeing

Adjusting to a lifelong diet can feel challenging and isolating at first. It is normal to feel frustrated or anxious about eating out or social events. Talking to friends, family, or a counsellor can help. Many people find that their mood improves once symptoms are controlled.

Prevention

Coeliac disease cannot be prevented. If you have the genetic risk, it may develop at any time. A gluten-free diet is not recommended for prevention. Screening is advised for close relatives of someone with coeliac disease, so they can be diagnosed early if they develop it.

Vaccines

There is no vaccine for coeliac disease.

Screening programmes

Screening for coeliac disease is recommended for first-degree relatives (children, siblings, parents) of a person with coeliac disease, because they are at higher risk. Screening involves a simple blood test. If you have symptoms or a family history, discuss testing with your doctor.

Complications

If left untreated

• Osteoporosis and bone fractures due to poor calcium absorption
• Infertility or recurrent miscarriages
• Neurological problems like peripheral neuropathy (numbness/tingling) or ataxia (balance problems)
• Increased risk of intestinal lymphoma (a rare type of cancer)
• Chronic anaemia and fatigue

Long-term outlook

With a strict gluten-free diet, the outlook is excellent. Most people feel better within weeks, and the intestine can heal within months to years. The risk of complications reduces greatly. Leading a normal, active life is very possible. Regular check-ups with a doctor and dietitian help keep you on track.

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