Introduction

Brief overview of celiac disease

Coeliac disease is a common autoimmune condition that affects approximately 1 in 100 people in the UK. However, only about one-third of those affected have been diagnosed, which means that there are nearly half a million who are unaware of their condition and continuing to suffer from its diverse and non-specific symptoms.

The symptoms of coeliac disease can be highly variable, ranging anywhere from tummy aches to nerve damage and seizures. Due to its vague and variable presentation, it is frequently misdiagnosed as other conditions, particularly Irritable Bowel Syndrome.

Does coeliac disease affect mental health?

Yes. As with many chronic conditions, coeliac disease is linked to several mental health problems. In fact, some patients with coeliac disease may first see a psychiatrist before seeing a gastroenterologist, as their symptoms may reflect psychiatric disorders. These psychiatric issues can occur in both adults as well as children.¹

The aim of this article is to shed light on the various mental health issues linked with coeliac disease, why these occur, and discuss the ways in which these issues can be managed.

Understanding celiac disease

What is celiac disease and what are its causes?

Coeliac Disease a.k.a gluten-sensitive enteropathy (referring to any disease or disorder affecting the intestines), is an autoimmune condition in which the immune system attacks the small intestine upon the ingestion of gluten. Gluten is essentially a protein component found in food items such as wheat, oats, rye, and barley.

When the immune system in susceptible individuals senses gluten in the body, it inappropriately produces antibodies against it, damaging the innermost layer of our small intestine. This damage affects the functioning of our gut and leads to poor absorption of nutrients. 

Coeliac disease can produce a range of gastrointestinal symptoms such as tummy aches, bloating, diarrhoea, and constipation. Additionally, it can cause non-specific symptoms such as fatigue, weight loss, itchy rash, nerve damage, and incoordination. 

There are several causes for coeliac disease, with the most well-documented being genetic modifications. Specifically, the condition is strongly associated with certain genetic variations in the HLA DQ2 and HLA DQ8 genes. When individuals with these genetic markers consume gluten, antibodies are produced against an enzyme called tissue transglutaminase, which triggers the adverse reaction by the immune system. Additionally, some studies suggest that gastrointestinal infections in early childhood may contribute to the development of coeliac disease later in life.²

Symptoms and diagnosis of coeliac disease

Coeliac disease can present with a wide range of symptoms, including abdominal pain, diarrhoea, constipation, bloating, indigestion, vomiting, and greasy, bulky stools with a rancid odour. The non-gastrointestinal symptoms are fatigue (due to iron & vitamin deficiencies), recurrent mouth ulcers, chronic headaches, numbness and tingling sensations (paresthesia), muscle weakness, seizures, rash (dermatitis herpetiformis) etc.

Several complications can arise due to coeliac disease, including osteoporosis (weakening of bones), delayed growth, malnutrition, failure to thrive in children, lactose intolerance, and cancers such as lymphoma, although very rarely. The risk of preterm labour, growth restriction, and stillbirth is higher in pregnant women with coeliac disease.

For diagnosis of this condition, initial testing is done to look for anti-tissue transglutaminase and anti-endomysial antibodies (another strong indicator of coeliac disease) in the blood. The gold standard for diagnosis is duodenal mucosal biopsy, which is done by passing an endoscope through the mouth and taking out a small piece of tissue from the intestine for examination under a microscope.²

Mental health impact of coeliac disease

The mental health conditions associated with coeliac disease include:

• Anxiety
• Depression
• Schizophrenia
• Bipolar disorder
• Autism spectrum disorder
• ADHD
• Eating disorders

Studies show strong links between coeliac disease and psychiatric conditions such as anxiety and depression. In one such study, the prevalence of anxiety in coeliac disease patients was 62.7%, and that of depression was 34.9%. These mental health conditions in patients were found to be due to a lack of control over their coeliac disease activity, perceived clinical status, and the need for strict adherence to a gluten-free diet.¹ There were mixed findings regarding the link between coeliac disease, ADHD and Eating disorders.^3,4

The quality of life tends to be lower in youth affected with coeliac disease. One study also showed an increased risk of intellectual disabilities and autism spectrum disorder in children.³ The need for adherence to a daily gluten-free diet can contribute to anxiety and depression, which in turn can lead to reduced adherence to a gluten-free diet and lower quality of life.⁴ Some patients may even suffer from cognitive impairment.¹

How does coeliac disease affect mental health?

The exact mechanism by which coeliac disease affects mental health is not fully understood, but studies suggest that the following factors may play a role:

Prior to diagnosis

Patients often experience a sense of reduced well-being as they struggle to understand what can be causing their symptoms. As misdiagnoses are common in this condition, patients may have had to go through repeated consultations with various doctors, and this can lead to a buildup of frustration. Reduced blood flow to the brain, vitamin deficiencies, increased levels of homocysteine in the blood, and associated autoimmune diseases (type 1 diabetes, thyroid disorders, and Down syndrome) could be some of the other causes.

Post-diagnosis

As mentioned earlier, the dietary restrictions (gluten-free diet) that need to be followed after a diagnosis of coeliac disease has been made can cause significant stress and impact the mental health of patients. Being a chronic condition, patients would need to adhere to a gluten-free diet lifelong which can prove to be restrictive and burdensome. While some do feel relieved that a diagnosis has finally been made, others can develop a lot of concern over future investigations and the potential complications of the disease.⁴

Management and treatment

Mental health conditions associated with coeliac disease can be addressed by successfully treating the primary underlying problem: coeliac disease itself. The only treatment of which is, the permanent exclusion of gluten from the diet.² Adopting a gluten-free diet and ensuring adequate nutrition have been shown to significantly improve the mental health and quality of life for symptomatic patients.^1,4

A study conducted in children showed that the psychiatric symptoms decreased just 3 months after starting a gluten-free diet.³ ADHD, in particular, showed notable improvement with gluten gluten-free diet.¹

However, some patients may not respond completely to a gluten-free diet. For such patients, a low FODMAP diet has been shown to improve mental health and well-being.⁵

Adequate management of coeliac disease and its associated mental health conditions often requires a multidisciplinary team consisting of a GP, dietician/nutritionist, gastroenterologist and psychiatrist. 

FAQs

How serious is coeliac disease?

If the disease is well controlled with a life-long gluten-free diet, then you should not have anything to worry about. However, If it is not well controlled, there is a higher risk of heart disease, developing other autoimmune conditions, and, very rarely, cancer of the small intestine, in addition to the various complications mentioned earlier. 

Which food items do I need to avoid if I have coeliac disease?

• bread
• pasta
• cereals
• biscuits or crackers
• cakes and pastries
• pies
• gravies and sauces

Always check the labels of the food items that you buy. Gluten-free versions of the above-mentioned food items can be safely consumed. 

Here is a more comprehensive list of foods to avoid.

Does coeliac disease ever go away?

Unfortunately, coeliac disease does not have a permanent cure. It is a chronic condition; however, it can be managed well with a lifelong gluten-free diet. Most people with coeliac disease go on to have a normal life expectancy.

Summary

Coeliac disease is a common condition in the UK that can significantly impact the mental health of patients, leading to a reduced quality of life. The diagnosis of coeliac disease can be tricky as it has a wide and varied presentation and is often misdiagnosed as IBS. Sometimes, fatigue may be the only unique symptom in the disease presentation. Anxiety and depression appear to be the most common psychiatric illnesses associated with coeliac disease. Strict adherence to a gluten-free diet has been shown to be effective in improving the mental health and well-being of people suffering from this condition.