Examining the Quality of Life in Jordanian Children with Celiac Disease

Celiac.com 01/30/2025 - Celiac disease is a challenging condition that goes beyond dietary restrictions, deeply impacting the daily lives of those affected. A recent study evaluated how this autoimmune disorder affects the quality of life for children in Jordan, revealing significant insights into the physical, psychological, and social challenges faced by these individuals.

Understanding the Scope of Celiac Disease in Jordan

Celiac disease is a chronic autoimmune condition triggered by consuming gluten, a protein found in wheat, barley, and rye. For those affected, exposure to gluten causes damage to the small intestine, leading to a wide range of symptoms that can include digestive distress, malnutrition, and growth problems. While adopting a strict gluten-free diet is the only known treatment, adhering to this diet can present its own set of difficulties, such as social stigma, high food costs, and limited access to suitable products.

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In Jordan, awareness and understanding of celiac disease are still evolving. This study is the first of its kind in the region to assess the health-related quality of life of children living with this condition.

Measuring Quality of Life

To better understand the impacts of celiac disease, researchers used a comprehensive questionnaire called Kidscreen-52. This tool assesses various aspects of health-related quality of life, including physical well-being, mental health, social relationships, autonomy, and school environment. Participants included 126 children, both boys and girls, aged 8 to 18. These children were members of a support organization for celiac disease in Jordan and completed the questionnaire in Arabic.

The study also examined factors such as adherence to a gluten-free diet, the presence of other chronic health conditions, and growth issues like stunted height or weight.

Key Findings

Lower Quality of Life Scores Compared to Peers

Children with celiac disease in Jordan reported significantly lower quality of life scores compared to their peers without the condition. The challenges faced varied between boys and girls, with boys generally showing poorer outcomes across several domains.

For boys, mood and self-perception were particularly affected, especially among those with other chronic health conditions. Girls with growth issues experienced academic difficulties and financial strain, likely linked to the high cost of maintaining a gluten-free diet.

Impact of Diet Adherence and Chronic Conditions

The study found that sticking to a gluten-free diet improved some aspects of quality of life, but it did not eliminate challenges altogether. Children who were not strictly following the diet faced more difficulties, particularly in their home lives and relationships with parents.

Additionally, those with other chronic illnesses experienced compounding effects, leading to significantly worse scores in areas such as mood and emotions.

Growth Issues and Financial Strain

One-third of the participants reported growth issues, such as being shorter or underweight compared to their peers. These issues often stem from malabsorption of nutrients before celiac disease is diagnosed and treated.

The financial burden of a gluten-free diet was another prominent issue. Gluten-free products are often expensive and harder to find in Jordan, making it challenging for families to maintain this necessary lifestyle change.

Recommendations for Improving Quality of Life

The findings from this study highlight the urgent need for targeted interventions to support children with celiac disease and their families.

1. Improved Food Labeling and Accessibility: Clear labeling of gluten-free foods and making these products more available in schools and stores can help children adhere to their diets more easily.
2. Financial Support: Subsidizing gluten-free foods or expanding insurance coverage to include dietary needs could alleviate the financial strain on families.
3. Educational Initiatives: Training teachers and raising awareness in schools can create a more inclusive environment for children with celiac disease, reducing social isolation and bullying.
4. Healthcare Support: Access to nutritionists who specialize in celiac disease can help families manage the dietary and nutritional challenges associated with this condition.
5. Public Awareness Campaigns: Increasing societal understanding of celiac disease can foster greater empathy and support for those affected.

Why This Study Matters

Celiac disease is often viewed as a dietary condition, but this study underscores its broader impact on children’s overall quality of life. The findings emphasize the importance of creating supportive environments that address both the physical and emotional needs of children with celiac disease.

By implementing policies to improve dietary adherence, affordability, and social inclusion, the quality of life for these children can be significantly enhanced. For families in Jordan and similar regions, this research provides a crucial step toward building a more supportive framework for managing celiac disease.

Read more at: cureus.com