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Background <p>Celiac disease (CeD) is a chronic autoimmune condition requiring lifelong adherence to a gluten-free diet. This disease is associated with a considerable psychosocial burden, particularly among women. Despite the relatively high prevalence of CeD in Iran, there is limited data on the lived experiences of Iranian women living with the condition.</p> Objective <p>To explore the lived experiences and challenges of women living with CeD in Lorestan Province, Iran.</p> Methods <p>A qualitative phenomenological study was conducted in 2025. Twenty women with a confirmed diagnosis of CeD participated in semi-structured face-to-face or telephone interviews. The data were analyzed using Colaizzi’s seven-step method with the support of MAXQDA software. Trustworthiness was ensured employing Guba and Lincoln’s criteria.</p> Results <p>Participants described living with CeD as a multidimensional burden that extended far beyond food restrictions. They experienced notable psychological distress, including sadness, anxiety, and helplessness, mainly due to living with a long-term condition that is often misunderstood by others. Limited awareness among family members and friends often led to tension and strain in relationships. In addition, participants reported experiencing stigma and mockery, and many felt they had to keep their illness secret, which led to feeling socially isolated. The participants also reported considerable challenges in maintaining a strict gluten-free diet. The high cost, limited access, and poor quality of gluten-free products contributed to financial strain and, in some cases, dependence on others. Furthermore, a delayed diagnosis and inconsistent medical advice added to participants’ uncertainty and reduced their trust in healthcare providers. These experiences affected their daily routines, family responsibilities, and social life. Thus, CeD affected nearly every part of women’s personal, social, and family life.</p> Conclusion <p>CeD has a major impact on women’s mental health, social life, finances, and family relationships. To address these issues, care should be more patient-centered and involve collaboration among different healthcare professionals. Improved training for healthcare providers and stronger psychological and social support can help patients manage the condition. Policy-level actions are also required to increase the availability and affordability of gluten-free products.</p>

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‘It’s not just about food’: Living with celiac disease as a woman

  • 期刊论文

  • 出版模式：

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  • 发表日期：

    2026年7月10日

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  • Narges Naderi,
  • Bardia Amidi,
  • Javad Yoosefi Lebni,
  • Saleh Azadbakht

摘要

Background

Celiac disease (CeD) is a chronic autoimmune condition requiring lifelong adherence to a gluten-free diet. This disease is associated with a considerable psychosocial burden, particularly among women. Despite the relatively high prevalence of CeD in Iran, there is limited data on the lived experiences of Iranian women living with the condition.

Objective

To explore the lived experiences and challenges of women living with CeD in Lorestan Province, Iran.

Methods

A qualitative phenomenological study was conducted in 2025. Twenty women with a confirmed diagnosis of CeD participated in semi-structured face-to-face or telephone interviews. The data were analyzed using Colaizzi’s seven-step method with the support of MAXQDA software. Trustworthiness was ensured employing Guba and Lincoln’s criteria.

Results

Participants described living with CeD as a multidimensional burden that extended far beyond food restrictions. They experienced notable psychological distress, including sadness, anxiety, and helplessness, mainly due to living with a long-term condition that is often misunderstood by others. Limited awareness among family members and friends often led to tension and strain in relationships. In addition, participants reported experiencing stigma and mockery, and many felt they had to keep their illness secret, which led to feeling socially isolated. The participants also reported considerable challenges in maintaining a strict gluten-free diet. The high cost, limited access, and poor quality of gluten-free products contributed to financial strain and, in some cases, dependence on others. Furthermore, a delayed diagnosis and inconsistent medical advice added to participants’ uncertainty and reduced their trust in healthcare providers. These experiences affected their daily routines, family responsibilities, and social life. Thus, CeD affected nearly every part of women’s personal, social, and family life.

Conclusion

CeD has a major impact on women’s mental health, social life, finances, and family relationships. To address these issues, care should be more patient-centered and involve collaboration among different healthcare professionals. Improved training for healthcare providers and stronger psychological and social support can help patients manage the condition. Policy-level actions are also required to increase the availability and affordability of gluten-free products.