Coeliac Disease Unravelled

Did you know that coeliac disease prevalence, i.e. affects more females than males?

The average age of diagnosis is between 40 and 60 years old, but coeliac disease can be diagnosed at any age once gluten is introduced into the diet, so young children, teenagers and anyone in between. 

In the UK about 690 thousand of people are affected by coeliac disease whereas in Italy ironically (think what Italian food is about) the percentage of the population affected is 1.62% according to a nationwide study (Lionetti et al, 2023)

The prevalence of coeliac disease is higher in females than in males and significantly greater in children than in adults. The increase in diagnosed cases is not solely due to a rise in contributing factors but also to improved diagnostic methods. As a result, fewer people are misdiagnosed or reach the end of their lives without knowing the true cause of their condition, such as undiagnosed coeliac disease leading to small bowel cancer.

What is Coeliac Disease?

Coeliac disease (CD) is a life-long autoimmune disease that affects multiple organs in the body if untreated. It is triggered by ingestion of gluten and the gluten triggers a reaction where the immune system mistakenly attacks its own tissues, the lining of the small intestine to defend itself from the intruder. Ingesting gluten-containing foods, such as wheat, rye, and barley, or foods contaminated with them, triggers coeliac disease. Some individuals may also be sensitive to oats. It is also known as coeliac sprue, gluten-sensitive enteropathy, or non-tropical sprue (World Gastroenterology Organisation).

Scientists have yet to fully understand the exact cause of coeliac disease, as it arises from a complex interaction between genetic and environmental factors.

How Do I Know If I Have Coeliac Disease?

Gastrointestinal conditions are complex and may overlap, meaning symptoms may not necessarily indicate coeliac disease or irritable bowel syndrome (IBS). People do not always experience symptoms that seem related to their gut.

A medical assessment is required for diagnosis, but if you are considering requesting investigations, it is useful to be aware of how the condition may present.

Coeliac disease is NOT a food allergy or intolerance; it is an autoimmune disease. 

If one has celiac disease but it is left untreated, it can have significant long-term health consequences: 

– anaemia and associated risk, 

– osteoporosis- which in turn increases the risk of falls and fractures, 

– neurological conditions (e.g. gluten ataxia and neuropathy),

– can affect fertility

– an increased risk of small bowel cancer and intestinal lymphoma; although this is a rear consequence, one to be aware of.

It can be particularly concerning when an individual has coeliac disease but is unaware, experiencing only mild or no symptoms at all.

Common symptoms include:

• Abdominal pain
• Anemia
• Bloating
• Constipation
• Chronic tiredness
• Headaches and/or brain fog
• Nausea
• Mouth ulcers
• Vomiting
• Unintentional weight loss
• In some cases, a rash called dermatitis herpetiformis

Risk Factors

Genetics play a role in coeliac disease, meaning individuals with a first-degree relative diagnosed with the condition are at higher risk of also being diagnosed with Coelsi Disease.

Environmental factors can trigger coeliac disease in individuals with a genetic predisposition. While scientists have yet to identify all potential triggers, some evidence suggests links to certain viruses and the amount of gluten consumed by at-risk children before the age of five. Additionally, some studies indicate that the duration of breastfeeding, the timing of introducing solid foods containing wheat, and the quantity of wheat consumed during early childhood may also play a role (Sarno et al, 2015).

People with conditions such as Down’s syndrome, Turner syndrome, type 1 diabetes, or thyroid disorders have a higher risk of developing coeliac disease. Although the exact relationship between these conditions and coeliac disease remains unclear, having coeliac disease does increase the likelihood of developing other autoimmune disorders.

It is worth noting that 4% of IBS patients may actually have coeliac disease, and 8% of those with coeliac disease may also have IBS. However, diagnosis should be made by a qualified healthcare professional rather than assuming both conditions are present.

Consequences of Not Treating the Condition

Some individuals do not receive appropriate support or follow a strict gluten-free diet due to a lack of awareness, difficulty in adapting their eating habits, or unintentional gluten exposure. Many patients report that eating at restaurants not accredited by Coeliac UK carries a high risk of cross-contamination, even when choosing seemingly safe options like plain fish and salad.

If untreated, coeliac disease can lead to the following complications with no particular order the last being a rare complication: 

• Neurological conditions (e.g. gluten ataxia and neuropathy)
• Malabsorption, resulting in deficiencies in B12, folate, iron, or calcium
• Osteoporosis
• Increased risk of small bowel cancer and intestinal lymphoma. The latter being a rear consequence but one that was identified as the consequence. 

Additionally, untreated coeliac disease increases the likelihood of developing lactose intolerance, as gut damage affects the ability to digest lactose. While lactose intolerance does not cause bodily harm, it can lead to digestive discomfort.

In children, coeliac disease can impact growth, bone development, neurological function, and dental health.

Symptoms Beyond the Gut

• Physical discomfort: Bloating, abdominal pain, unexplained weight loss, changes in bowel habits (diarrhoea or constipation)
• Nutritional deficiencies: Osteoporosis, anaemia, extreme fatigue
• Neurological symptoms: Numbness and tingling in extremities, brain fog, balance problems
• Skin conditions: Dermatitis herpetiformis, which causes an itchy, blistering rash (commonly on elbows, knees, shoulders, and face)

Diagnosis

Coeliac disease shares symptoms with other functional gastrointestinal disorders like IBS, which can lead to misdiagnosis if not tested properly. An accurate diagnosis is vital.

NICE Guidelines (NG20) recommend serological testing (blood tests) for coeliac disease screening in individuals with:

• Persistent, unexplained gastrointestinal symptoms
• Faltering growth
• Prolonged fatigue
• Unexplained weight loss
• Severe or persistent mouth ulcers
• Unexplained iron, vitamin B12, or folate deficiency
• Type 1 diabetes (at diagnosis)
• Autoimmune thyroid disease (at diagnosis)
• IBS (in adults)
• First-degree relatives of those with coeliac disease

The primary blood tests include total IgA and IgA tissue transglutaminase (tTG). Endomysial antibody tests (EMA) may be performed if tTG results are weakly positive (Nice Guidelines NG20: Coeliac disease | NICE).

Endoscopy is no longer part of routine UK clinical guidelines but may be requested at the discretion of a doctor for further examination.

Treatment

There is no cure for coeliac disease. The only treatment is lifelong adherence to a strict gluten-free diet. Even the smallest exposure to gluten can cause damage to the intestine, leading to digestion and nutrient absorption issues.

Recovery time and symptom improvement vary between individuals. It is crucial to seek guidance from a registered dietitian specialising in gastrointestinal conditions to navigate the gluten-free diet effectively and prevent deficiencies.

In the UK, registered dietitians are the only healthcare professionals qualified to advise on diet for specific health conditions. NHS services offer support, but waiting times may necessitate seeking private consultations.

A little about prevalence: 

The prevalence of coeliac disease varies by gender, age, and geographical location. However, a meta-analysis conducted between 1999 and 2016 (Coeliac Disease Foundation) found the current worldwide prevalence to be 1.4% based on blood tests and 0.7% based on biopsy results. The prevalence was 0.4% in South America, 0.5% in Africa and North America, 0.6% in Asia, and 0.8% in Europe and Oceania. According to studies conducted for the European Food Safety Authority (EFSA), the number of individuals with coeliac disease in Europe is estimated at 0.7% of the population. In the UK, research by Coeliac UK estimates the prevalence to be around 1% (690 thousand) of the population, however, only 36% of those with the condition have been clinically diagnosed. (Coeliac UK: Home)  In Italy, studies indicate that while around 1% of the population was previously affected, the prevalence has now risen to 1.6%, with only about 40% of those affected having received a diagnosis (Coeliac Disease Foundation and Istituto Superiore di Sanità).

Additional Support

Coeliac UK Is An Excellent Resource With A Wealth Of Information: www.coeliac.org.uk or @coeliacUK

• Lifewellnutrition offers consultations with a specialist dietitian for tailored support (Booking Info – Life Well Nutrition by Wanda Soddu).

If you suspect you have coeliac disease, seek medical advice to ensure an accurate diagnosis and appropriate management.