How Celiac Disease Affects Health-related Quality of Life for Patients

Celiac.com 05/02/2024 - Celiac disease affects millions worldwide, impacting not only physical health, but also the overall quality of life. This autoimmune disorder, triggered by the consumption of gluten-containing foods like wheat, barley, and rye, presents a broad spectrum of symptoms ranging from gastrointestinal issues to atypical and extra-intestinal forms.

Research suggests celiac disease affects 1–2% of people in Western populations, making it a significant public health concern. Despite its commonality, celiac disease often goes undiagnosed or misdiagnosed due to its diverse symptomatology.

Celiac.com Sponsor (A12):
In recent years the health-related quality of life has become an important issue in this context, and most studies carried out so far have shown diminished quality of life in untreated patients compared with healthy controls. Furthermore, there has generally been a beneficial response to treatment with a gluten-free diet. 

Survey of Studies of Health-Related Quality of Life with Celiac Disease Conducted

However, the majority of trials have been carried out among adults with gastrointestinal disease, while in fact several extra-intestinal and atypical forms of celiac disease might be even more common than the classical disorder. In addition, only a small proportion of these studies have been conducted among children. Recently, a team of researchers sought to survey the studies of health-related quality of life and celiac disease conducted to date.

The research team included Kalle Kurppa; Pekka Collin; Markku Mäki; and Katri Kaukinen. Their survey pays particular attention to the extra-intestinal and atypical forms of the disorder.

The cornerstone of celiac disease treatment remains a strict gluten-free diet, which can alleviate symptoms and reduce associated risks. However, adhering to such a diet poses challenges, including financial burden, social restrictions, and potential weight gain. Consequently, patients may experience a negative impact on their quality of life.

Studies have shown that untreated individuals experience a diminished quality of life compared to healthy controls, with notable improvements upon adopting a gluten-free diet. However, managing celiac disease goes beyond mere dietary restrictions; it requires a comprehensive understanding of the patient's subjective experiences and needs.

Assessing health-related quality of life has emerged as a crucial aspect of celiac disease management. By understanding the patient's perceptions and desires, healthcare providers can tailor interventions to enhance compliance and overall well-being. Here are the important findings:

Classical Celiac Disease & Health-related Quality of Life:

• Classical celiac disease often leads to abdominal issues and signs of malnutrition in patients on gluten-containing diets.
• Untreated celiac patients generally experience a reduced quality of life, which improves significantly with a gluten-free diet.
• Some studies show celiac patients reaching similar quality of life levels as healthy individuals after dietary changes.
• Cultural differences, study populations, and selection bias from local celiac disease societies can influence quality of life outcomes.
• Women with celiac disease often report lower quality of life compared to men, and noncompliance with a gluten-free diet can worsen outcomes.
• Challenges in maintaining a gluten-free diet and social restrictions can persistently impact quality of life despite treatment.
• Other undetected disorders like irritable bowel syndrome can contribute to ongoing symptoms and reduced quality of life, especially in women.

Extraintestinal & Atypical Forms of Celiac Disease & Health-related Quality of Life:

• Extraintestinal forms of celiac disease, like dermatitis herpetiformis and gluten ataxia, present outside the gastrointestinal tract.
• Limited data exist on health-related quality of life in dermatitis herpetiformis patients, and controlled studies are lacking for other extraintestinal forms.
• Early stages of celiac disease may still impact quality of life even without significant mucosal damage.
• Quality-of-life studies are needed for patients with normal mucosal structure in early-stage celiac disease.

Screen-detected Celiac Disease & Health-related Quality of Life:

• Screening at-risk groups and populations has led to increased detection of asymptomatic or subtly symptomatic celiac disease cases.
• Quality-of-life studies on screen-detected celiac patients are limited but generally show comparable or improved quality of life with a gluten-free diet.
• Asymptomatic cases may not see immediate benefits in quality of life with treatment.

Health-related Quality of Life in Children with Celiac Disease:

• Children with celiac disease require age-specific quality-of-life assessments, as generic adult questionnaires may not be suitable.
• Parents' perceptions of their child's quality of life may differ from the child's own perspective.
• Studies on children with celiac disease show conflicting results, with some indicating better quality of life compared to adults.
• More research is needed using age-specific and disease-specific questionnaires to understand children's quality of life better.

While advancements in research have shed light on the impact of celiac disease on quality of life, there remains a need for further exploration, particularly regarding the natural course of untreated or partially treated cases. As awareness grows, addressing the multifaceted challenges posed by celiac disease becomes paramount in improving patient outcomes and overall quality of life.

Read more at medscape.com