What Is Coeliac Disease?

You have just heard from your doctor that you have coeliac disease, or a friend told you about it, and now you are very worried and want to know more about the condition. You are in the right place.

Coeliac disease, also known as sprue, is simply an autoimmune disease that occurs when certain types of food trigger your gut.

Let's dive in more. Coeliac disease is an autoimmune disease that occurs in genetically predisposed individuals. When an individual takes in food containing gluten, inflammation or damage to the small intestine occurs. 

What is gluten? It is a protein that is seen in wheat and other grains like barley and rye.  In people who have been diagnosed with coeliac disease, consuming gluten triggers an abnormal immune system reaction that damages the small intestine.

Coeliac disease is thought to occur in about 1 in every 100 people, and 1 in 3 people are correctly diagnosed. Coeliac disease is inherited, meaning that if someone in your family has it, there is a small chance you may also have it. Coeliac disease occurs at any age.¹

Overview

Coeliac disease, or sprue, is a condition where your immune system attacks your own organ, the small intestine, after eating a meal containing gluten. This leads to damage in your gut, preventing you from taking in nutrients.

Coeliac disease can cause various symptoms, including diarrhoea, abdominal pain and bloating.²

Coeliac disease is caused by an immune reaction to gluten, which is a protein found in³:

• Wheat
• Barley
• Rye

Gluten is also found in any food that contains those cereals, including:

• Pasta
• Cakes
• Cereals
• Some types of bread
• Certain types of sauces
• Some ready meals
• Most beers (as they are made from barley)

Causes of coeliac disease

Coeliac disease has been found to be caused by a combination of an immune response and exposure to an external agent, i.e. gluten and genetic factors.

The interaction of gluten in wheat, barley, and rye with the lining of the small intestine is crucial to the origin of coeliac disease.

Like many autoimmune diseases, coeliac disease is, in most cases, inherited or at least partly inherited.

What does this mean? 

It means that a particular gene mutation passed down through your family made you more at risk of developing the disease. Not everyone with this gene mutation develops the disease; similarly, not everyone who gets the disease has one of the known genes. Some other factors appear to be involved in triggering it.

One theory is that it may be triggered by some significant physical stress that burdens your immune system. Observations over the years by healthcare providers have shown that the disease often shows up after a physical event such as illness, pregnancy, surgery or even a severe emotional event. Another theory is that microorganisms living in your gut may be responsible. More research is still ongoing to explore other factors that may lead to coeliac disease.

Signs and symptoms of coeliac disease

The signs and symptoms of coeliac disease can be divided into gastrointestinal symptoms and extraintestinal symptoms:²

Gastrointestinal symptoms:

• Diarrhoea is usually the most common symptom in untreated coeliac disease and is present in the majority of affected people. It occurs because there is a problem with digestion and absorption of nutrients
• Bloated stomach
• Stomach pain
• Gas release happens when the intestinal bacterial flora feed on undigested and unabsorbed food materials, and produce gas as a by-product
• Constipation
• Pale, foul-smelling stools are present because of increased amounts of fat that is not absorbed by the intestines

Extraintestinal symptoms:

• Anaemia usually occurs because of reduced absorption of iron in the small intestine
• Failure to thrive in children
• Weight loss
• Itchy, blistery skin rash
• Fatigue
• Headaches 
• Joint pain
• Mouth ulcers and canker sores
• Nausea and vomiting
• Hormonal disorders, such as amenorrhoea, delayed menarche, infertility in people assigned female at birth (AFAB), and impotence and infertility in people assigned male at birth (AMAB)

Digestive symptoms are more common in children with coeliac disease.⁴ Here are some of the most common symptoms that are seen in children:

• Stomach bloating and pain
• Attention-deficit/hyperactivity disorder (ADHD) and learning disabilities
• Chronic diarrhoea
• Constipation
• Delayed puberty
• Failure to thrive
• Fatigue
• Gas
• Headaches
• Iron-deficiency anaemia
• Irritability
• Nausea and vomiting
• Pale, foul-smelling stools
• Seizures 
• Weight loss

Management and treatment for coeliac disease

If you suspect you may be suffering from coeliac disease, it is important you book an appointment to see your GP right away. Your GP will ask you questions and run some specific blood tests for you, and it is important that you do not remove gluten from your diet at this stage. A blood test is done to check for antibodies, which usually indicates possible coeliac disease. However, it is possible to have a negative test and yet still have coeliac disease. 

After getting the results of your blood tests, your GP will refer you to see a gut specialist (gastroenterologist). In adults, a particular test called a biopsy is then carried out to confirm the diagnosis. It is important to not remove gluten from your diet until you have been told to do so.⁵

The diagnostic tests for coeliac disease look at how the body responds to gluten. Before this happens, some people may start to reduce gluten from their diet because it makes them feel ill. Unfortunately, this usually leads to inaccurate or wrong results for both the blood test and the gut biopsy. So, it is very important to keep eating gluten throughout the diagnosis process and not stop unless advised to.

If you have already removed gluten from your diet, you will need to reintroduce it once more to make sure accurate test results are obtained during your diagnosis process. While it may be difficult and uncomfortable, it is essential for your health in the long run.⁵

You may be wondering at this point, how is this disease treated?

Is there a cure?

Unfortunately, like many autoimmune diseases, coeliac disease does not have a cure, but it can be treated to reduce symptoms and improve your overall quality of life.

Diet is the mainstay of treatment, and you should introduce a gluten-free diet which involves identifying and completely eliminating gluten.⁶ For proper dietary management, your doctor may refer you to see a dietician who will help you plan and prepare your food in order to completely eliminate gluten from your diet.

Medications are only introduced when complications occur and diet alone is not able to take care of the symptoms.

Once a diagnosis has been made, it is important to:⁶

• Learn about foods that are naturally gluten-free. For example, rice, potato, fish, eggs, corn, yoghurt, vegetables, beans, and lentils
• Join a community, the best support has been said to come from people who are experiencing the same things as you. Coeliac UK is an organisation where you can connect with other people living with the condition and get tips on how to cope with coeliac disease
• Meet with a dietician
• Ensure regular follow-up visits with your doctor
• Visit your local supermarkets or stores for gluten-free products

Complications

If you have been diagnosed with coeliac disease, it is very important that you do not eat any gluten-containing food. If you have untreated or undiagnosed coeliac disease and you are still eating gluten, there are several complications that can occur.

While it is a common misconception that eating a little gluten will do no harm, eating even a tiny amount can trigger symptoms of coeliac disease and increase your risk of developing complications.

The complications that can occur include: 

• Malnutrition 
• Lactose intolerance  
• Cancers
• Weakening of the bones (osteoarthritis)

FAQs

How is coeliac disease diagnosed

Diagnosis of coeliac disease usually involves specific tests which can be ordered by your doctor.

How can I prevent coeliac disease

Unfortunately, you cannot prevent coeliac disease, but you can stop or reverse the damage to the small intestine by maintaining a strict, gluten-free diet.

Who is at risk of coeliac disease

Coeliac disease tends to occur more in people who have any one of the following²:

• A family history of coeliac disease 
• A family member with or a history of dermatitis herpetiformis
• Type 1 diabetes
• Down syndrome
• Turner syndrome
• Autoimmune thyroid disease
• Microscopic colitis 
• Addison's disease

How common is coeliac disease

Coeliac disease is a condition that affects at least 1 in every 100 people in the UK,⁷

although only about 36% of patients have been clinically diagnosed as having coeliac disease.

When should I see a doctor?

You should see a doctor if you notice any of the above symptoms and you have someone in your family with coeliac disease.

What if a gluten-free diet isn't working?

In rare instances, the intestinal injury of coeliac disease doesn't respond to a strict gluten-free diet. This is known as refractory coeliac disease.⁸ If you still experience signs and symptoms of coeliac disease after following a gluten-free diet for more than six months, you may need further testing to look for another explanation for your symptoms.

Summary

Coeliac disease is a chronic, digestive, autoimmune disorder that damages the small intestine, which is triggered by eating foods containing gluten. It occurs in both adults and children. Symptoms of this disease are mostly gastrointestinal, but can also affect other body systems. Common symptoms include abdominal pain, bloating, fatty stools, weight loss, and failure to thrive in children.

If left untreated, it can lead to complications, which may sometimes be difficult to treat. A diagnosis is made by carrying out a specific blood test to detect antibodies in the body, and a gut biopsy is performed to confirm the diagnosis.

There is no cure for this condition, and treatment consists of following a strict gluten-free diet and meeting with a dietician who can help you avoid gluten-containing meals.