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

Abstract

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.

Introduction

Celiac disease (CeD) is an autoimmune disorder in which the consumption of gluten triggers an immune response that damages the small intestine, leading to both gastrointestinal and systemic symptoms [1]. CeD affects around 1% of the global general population [2], whereas its prevalence in Iran is about 2% [3]. CeD occurs more frequently in women with a female-to-male ratio of about 2–2.5 to 1 [4].

CeD is a chronic disease with widespread psychological, social, and emotional consequences [5]. Its management requires strict and lifelong adherence to a gluten-free diet (GFD) and regular medical monitoring [6]. In many cases, the involvement of family members in adjusting diet and lifestyle is also needed [7]. These demands may affect daily functioning and quality of life among this group [8]. A study by Crocker et al. in the United Kingdom reported that women with CeD had poorer health-related quality of life scores than men with CeD [9]. Research also shows that female CeD patients report greater social limitations and worries with regard to their disease and adherence to a GFD [10].

Although the psychological and social effects of CeD have been widely documented, women may experience the disease differently due to the responsibilities they often carry within their families and daily lives. In many societies, women are primarily responsible for preparing meals, providing family care, and managing the household [11–13]. Therefore, adhering to a strict GFD may influence not only disease management but also interactions with family members and involvement in social life [5]. Understanding women’s experiences within this social context helps clarify how family roles and societal expectations influence the way they live with CeD.

Given these gendered and contextual dimensions of illness experience, a deeper understanding of women’s lived experiences with CeD is needed, particularly in Iran, where the disease is relatively more prevalent and its management may impose significant psychosocial and economic burdens. Qualitative research enables an in-depth exploration of individuals’ lived experiences, perceptions, and challenges [14, 15]. Thus, the present study aimed to explore the challenges faced by women with CeD in Lorestan Province using a qualitative phenomenological approach.

Methods

Study design

This study was conducted in Lorestan Province in 2025 with the goal of in-depth exploration of living experiences of women with CeD. A phenomenological design was employed. This decision was made as this design allows for a more thorough investigation of participants’ experiences, their perceptions, and the meanings they attribute to their illness [16].

Participants

Twenty women over 18 years of age from Lorestan province were included in the study. Of these, 11 were interviewed face-to-face and 9 by telephone. All participants had a medically confirmed diagnosis of CeD for more than 6 months and were able to communicate and participate in the interview. Participants were excluded from the study if they were unwilling to have their interview recorded or discontinued their participation before the completion of the interview.

Data collection

Data were collected through semi-structured interviews using purposive and snowball sampling. A list of patients was initially prepared from the records of the Gastroenterology Clinic of Shahid Rahimi Hospital in Khorramabad. Interviews were conducted either face-to-face or by telephone, depending on participants’ availability and scheduling constraints. No obvious differences were observed in the depth or richness of participants’ responses across interview modalities. Additional women with CeD were subsequently identified and recruited through recommendations from the initial participants.

The interview location was chosen by the participants. The interviews were conducted only in the presence of the participant and the interviewer. Given that the study participants were female, the interviews were conducted by a female medical student (N.N.) who was skilled in qualitative research. The interviewer introduced herself and explained the objectives and procedures of the study before starting each interview. The interviewer also assured the participants that their data would remain confidential. The average duration of the interviews was 45 min, with the longest lasting 70 min and the shortest 20 min. All interviews were audio-recorded with participants’ consent. In addition, the interviewer documented nonverbal cues, including tone, emotions, and pauses during the interviews.

The interview questions were designed based on a literature review and the research team consensus (Table 1). Following the collection of demographic information, main and supplementary questions were asked to comprehensively explore participants’ experiences and perspectives. As interviews progressed, the research team continuously reviewed the content of each interview to assess the emergence of new meanings and experiential patterns. Interviews continued until data saturation was achieved. This was considered to have occurred when no new themes or meaningful insights emerged from the data [17, 18]. Following the 18th interview, no additional themes were identified. To verify that saturation had been achieved, two further interviews were completed, and agreement on data saturation was confirmed after the 20th interview.

Table 1.

Semi-structured interview guide questions

No.	Questions
1	How did you feel when you found out that you had been diagnosed with celiac disease?
2	What were your initial thoughts and perceptions about this disease?
3	What challenges has this disease created in your daily life?
4	What challenges has this disease created in your family and social life?
5	What are your main concerns regarding this disease?

Data analysis

The data were organized with MAXQDA 2018 software and analyzed following Colaizzi’s seven-step method [19]. The analysis began with verbatim transcription. Each interview was fully transcribed into Microsoft Word documents. N.N. and B.A. then read transcripts repeatedly to gain both a general and in-depth understanding of the content. Subsequently, they conducted initial line-by-line coding, focusing on significant statements and meaningful units that reflected participants’ experiences. Following initial coding, J.Y.L., N.N., and B.A. compared the codes to identify similarities and differences. Similar or related codes were organized into broader categories and subcategories. These categories were then further developed into main themes representing the primary features of participants’ experiences. The analysis involved repeatedly reviewing the transcripts, codes, and themes to ensure that the findings remained grounded in the data. To enhance rigor, interpretations were reviewed collaboratively within the research team until consensus was reached. Finally, the obtained results were presented as a comprehensive description of the studied phenomenon. Relevant participant characteristics, such as care-related responsibilities and family context, were included alongside quotations to provide contextual understanding of participants’ experiences. Table 2 shows how a quotation was developed into a code and then into a theme.

Table 2.

Example of the analytic process from raw quotation to category

Raw quotation	Initial code	Sub-category	Category
“You know, you constantly think there is a problem inside you that might become very severe. It might lead to cancer. So you always have this stress no matter what.” (Participant 14, mother of two, teacher)	Persistent anxiety due to fear of cancer	Fear and Anxiety	Psychological–Emotional Challenges

Trustworthiness

The present study followed Guba and Lincoln’s criteria to ensure trustworthiness and rigor [20]. Credibility was strengthened through the recruitment of a diverse sample. Participants were selected from various socio-economic and demographic backgrounds. This was intended to capture a variety of experiences. Prolonged engagement with participants, as well as the use of subsequent questions, increased the data’s depth and accuracy. Member checking was used to verify the findings by sharing the researchers’ interpretations and coded summaries with five participants. Four independent qualitative experts reviewed the findings to enhance confirmability and reduce bias. Based on their feedback, revisions were made to ensure that the results captured only the participants’ experiences, not the personal views of the researcher. Dependability was ensured through the documentation of all research processes. In addition, all members of the research team participated in the coding and analysis process. The final categories were reviewed and reached by consensus. Finally, transferability was improved by clearly describing the study context, participant characteristics, and data collection procedures. Participant quotes were provided to support the applicability of the findings to other contexts. Moreover, four eligible women with CeD, who were not interviewed, were provided excerpts from the interviews. They confirmed that the participants’ perspectives reflected their own experiences.

Ethical considerations

This research was approved by the Lorestan University of Medical Sciences Ethics Committee (IR.LUMS.REC.1404.263). All ethical guidelines were strictly followed. In face-to-face interviews, written informed consent was obtained from the patients, while in telephone interviews, verbal consent was obtained. Participants were informed about the study’s goal and procedures. They were told that their information would be kept confidential. They were also given the option to withdraw at any point. Audio recordings were deleted after data analysis.

Results

A total of 20 participants were included in this study (Table 3). Following data analysis, 16 subcategories and 6 main categories were obtained (Table 4), which are described below with quotations and explanations.

Table 3.

Demographic characteristics of the participants

Variables	Category	Frequency	Percentage
Age	18–29 years	3	15%
	30–44 years	12	60%
	45–59 years	4	20%
	≥ 60 years	1	5%
Marital Status	Married	15	75%
	Single	5	25%
Education Level	Illiterate	0	0%
	High School diploma or below	10	50%
	Bachelor’s and Master’s degree	10	50%
	Doctorate or higher	0	0%
Employment Status	Employed	5	25%
	Unemployed	14	70%
	Retired	1	5%
Place of Residence	Urban	16	80%
	Rural	4	20%
Duration of Illness	6–12 months	1	5%
	1 < years ≤ 5	18	90%
	> 5 years	1	5%

Table 4.

Categories, sub-categories, and codes extracted from data analysis

Categories	Sub-categories	Codes
Psychological–Emotional Challenges	Depressive Symptoms and Helplessness	Discouragement and depressive feelings at the onset of the illness, perceived inefficacy and lowered self-esteem, perceptions of defectiveness and guilt, feeling professionally incompetent, feeling different from others, low energy and apathy, irritability and heightened temper, perceived inferiority and shame, perceived cognitive decline, perceiving illness-related suffering as futile and meaningless, feeling like a burden on the family, self-blame, perceived restriction, perceived coercion to adhere to dietary restrictions, perceived compulsion to cope with the disease
	Fear and Anxiety	Fear of the illness being perceived as dangerous, concern about the disease resembling cancer, persistent anxiety due to fear of cancer, fear of the disease being fatal, initial shock upon receiving the diagnosis, fear of developing comorbid conditions and potential complications, anxiety regarding disease progression, distress related to the chronic and lifelong nature of the illness, fear associated with the perceived incurability of the illness, fear of an uncertain future, anxiety stemming from lack of knowledge about the illness, anxiety concerning intestinal villi damage and its consequences
	Reproductive and Parenting-related Concerns	Anxiety about the possibility of transmitting the illness to children, feelings of regret or ambivalence regarding motherhood, concerns about potential infertility associated with the illness, feelings of guilt about the possibility of reduced cognitive ability in children, concerns regarding the impact of the illness on children’s future marriage prospects
Social Challenges	Social Stigma, Scrutiny, and Misunderstanding	Lack of understanding and oversimplification of the disease among relatives and friends, perceived pressure from acquaintances, others’ surprise regarding the disease, experiencing ridicule and sarcastic remarks from in-law, relatives’ gossip and backbiting, psychological burden of having dietary restrictions perceived as pretentiousness, perceiving the illness as a consequence of the patient’s sins, perceived excessive curiosity of others regarding dietary habits, difficulty tolerating repeated inquiries from others, perceived obligation to respond to numerous questions, experiencing psychological stress due to repetitive questioning, reluctance to answer questions from others
	Social Withdrawal and Isolation	Restricted social interactions resulting from dietary constraints, limitations on socializing with friends, avoidance of social gatherings, concealment of the illness from others, declining invitations to social events, experiences of loneliness and social rejection, inclination toward social isolation and solitude
	Interpersonal and Family Challenges	Dependence on the husband for daily needs, perceived lack of sufficient spousal support, avoidance of informing the spouse’s family because of their perceived inability to understand the illness, restriction on family members from purchasing restaurant-prepared foods, emergence of tension within family relationships, family members experiencing feelings of guilt or pity toward the patient, alteration of family diet in accordance with the patient’s dietary restrictions, family conflicts arising from financial burdens of the illness
Financial–Economic Challenges	Financial Challenges in Disease Management	High cost of gluten-free products, persistent concern about the financial burden of diet, necessitated elimination of essential foods due to financial constraints, difficulty adhering to the diet due to economic limitations, reliance on spouse for financial support, anxiety about anticipated future financial expenses, concerns regarding inability to afford treatment costs, fear of exacerbation of existing financial difficulties
	Lack of Institutional Financial Support	Perceived absence of financial support from insurance or government, inadequate insurance coverage, perceived need for financial assistance
Diagnostic and Treatment Challenges	Challenges and Harm in Healthcare Access	Prolonged misdiagnosis by multiple healthcare providers, delayed diagnosis of the illness, experiencing physical and psychological harm prior to diagnosis, perceived harm caused by healthcare providers
	Limited Awareness and Misinformation About the Disease	Disease initially unknown to the patient, insufficient knowledge about the illness despite higher education, disease unrecognized by some healthcare providers, exposure to inaccurate information from acquaintances, experiencing psychological stress due to misinformation, receiving inaccurate guidance from healthcare providers
	Lack of Supportive Treatment Protocol	Heightened anxiety due to lack of supportive healthcare systems, post-diagnosis confusion arising from unclear treatment protocols, perceived neglect of patients’ psychological needs by the healthcare system
Dietary and Nutritional Challenges	Challenges in dietary adherence	Struggles in adhering to prescribed diet, perceived difficulty in maintaining full dietary restriction, perceived more challenge in adhering to the diet compared to other illnesses, difficulty adhering to the diet during social events and gatherings, difficulty consuming gluten-free foods due to unpalatable taste, poor quality of gluten-free products
	Food-related anxiety and vigilance	Intrusive or obsessive thoughts when verifying food ingredients, concern about potential gluten contamination, vigilance to ensure foods are genuinely gluten-free, distrust toward packaged or processed food labels, anxiety regarding the presence of hidden gluten in foods
	Challenges with Access and Supply	Challenges in finding and accessing gluten-free foods, necessity to travel to procure gluten-free products, limited availability of gluten-free stores locally, scarcity of gluten-free food options
Everyday Life Challenges	Functional Limitations and Academic Setbacks	Limitations in engaging in personal activities and hobbies, avoidance of work-related projects due to perceived incapacity, perceived inefficiency in completing tasks, belief that illness obstructs personal and professional progress, perception of academic lag or falling behind due to illness
	Travel-related Dietary Limitations	Anxiety regarding adherence to the diet during travel, experiencing multiple challenges while traveling, difficulty maintaining dietary restrictions during trips, restricted choice of travel destinations due to limited gluten-free food availability, reduced enjoyment of travel experiences due to dietary concerns

Psychological–emotional challenges

This category consists of the subcategories of depressive symptoms and helplessness, fear and anxiety, and reproductive and parenting-related concerns. These subcategories represent the emotional and psychological challenges faced by patients with CeD.

Depressive symptoms and helplessness

The participants often experienced deep psychological challenges after receiving the diagnosis. Most initial experiences included feelings of discouragement and depression, with predominant emotions of sadness. In contrast to a transient reaction, these emotional responses intensified over time, affecting mood and overall quality of life. In addition, participants reported severe fatigue and helplessness, which significantly limited the necessary motivation to perform daily activities and maintain usual functions.

I felt so bad; it was like I had cancer. Our spirits were down. All of us, our whole family. We cried day and night. We looked at it differently. I thought, for example, that I was on the verge of cancer. (Participant 2, married, university student)

Furthermore, several participants described severe irritability and a quick temper. These findings show that the illness affected not only emotional well-being but also interpersonal interactions and social relationships.

I have become very impatient. I get nervous all the time because of this illness. My temperament has, in my opinion, become very bad; I have become irritable. Whatever anyone tells me, I get angry quickly; I cannot control myself. It is as if I am always waiting for someone to say something so that I can argue. (Participant 7, married, homemaker)

Participants reported a range of problems related to their self-perception after the onset of the illness. Major experiences included feelings of inadequacy and reduced self-esteem, generally accompanied by a feeling of defectiveness and guilt. These feelings were also reinforced by a sense of professional inadequacy as patients faced struggles to perform at their previous level.

Before, there was a project in another city, and we were supposed to stay there for a few days; I did not go. Because, for example, I had to take a lot of food items with me and cook food separately for myself. I completely felt that I could not. I felt that I could not handle it. I mean, it was something difficult for me. (Participant 12, mother of one, employed outside the home)

Several participants emphasized the heightened feelings of being different from others, resulting in experiences of inferiority and shame. Many individuals also reported concerns about a decline in cognition, which they explicitly attributed to the illness. This belief deepened their overall perception of inadequacy.

When you sit in a gathering, you are different from everyone. That also has a psychological burden. I am different from all my colleagues. I cannot freely eat anything like them. I am different from all the relatives. Well, all of this makes you feel pressure and psychological burden. You feel that you are not comfortable at all and that you have a very bad difference from others. Not that you are different from others in a good way. (Participant 10, married, nurse)

Altogether, before when I went to my relatives’ homes, in my opinion, before this illness, I was much better. Now when I go to their home, I am somehow different. For example, I am uncomfortable; I don’t know why. I was not like this. I feel bad. I see myself lower. I don’t know why this feeling has come to me. (Participant 2, married, university student)

Participants viewed their condition as futile and meaningless suffering, which made them feel like a burden on their families. They often experienced self-blame, feelings of inadequacy, and a sense of restriction that were attributed to difficulties in following dietary restrictions.

My feeling about this illness is that it is a pointless suffering. It is a suffering anyway. It is a trouble, a problem. (Participant 14, mother of two, teacher)

From a financial point of view, for example, I tell myself that I am a burden on my family. (Participant 10, married, nurse)

In my opinion, its change is that wherever I go, I am limited. I feel limited. For example, the fact that I cannot be like others makes me feel limited. I cannot eat like others; it limits me. (Participant 3, married, homemaker)

Fear and anxiety

Several participants expressed a general feeling of fear and uncertainty. They experienced an intense anxiety about the illness being perceived as a dangerous condition. In particular, there was a specific concern about the perceived similarity to cancer, which exacerbated their constant anxiety.

When I heard the diagnosis, I had a terrible feeling. As if I had cancer. I looked at it in a different way. I thought that I was going to die. (Participant 11, unmarried, financially dependent on brother)

Participants often described a constant anxiety about disease progression and the possibility of comorbidities or secondary complications. Many of them expressed their distress about the chronic and lifelong nature of the disease and fear of its perceived incurability and uncertain long-term outcomes. Fear of the uncertain future, along with a lack of awareness about the disease, added to their anxiety and sense of insecurity.

You know, you constantly think there is a problem inside you that might become very severe. It might lead to cancer. So you always have this stress no matter what. (Participant 14, mother of two, teacher)

I am afraid that one day its medicine won’t come. Or that no definite treatment will come for it. I am only continuing with this hope. If its medicine doesn’t come, I really don’t know what to do. (Participant 13, unemployed, living with parents)

Reproductive and parenting-related concerns

Participants expressed significant anxiety about the possibility of transmitting the disease to their children, which was often associated with strong feelings of guilt and self-blame concerning their role and responsibilities as mothers. Some participants specifically mentioned possible infertility resulting from the disease, while others spoke about its effect on the cognitive development or the future marriage prospects of their children.

I think that with this illness I am a more useless person. Sometimes my husband tells me, ‘Come on, let’s have a child; let’s have a daughter.’ I’ve heard people say that their children with celiac disease have many difficulties. I say, ‘God, if I have a child, maybe my child will have this same problem.’ From this point of view, I consider myself a more incomplete person, or even if maybe I want to have a child, I have to endure the guilt and the illness of the child too; I have to bear their sadness too. (Participant 1, homemaker with no independent income)

When I go somewhere and see the relatives’ children, I say, ‘God, why am I not having a child? I also want to have a child like my sisters. Why did I get this illness?’ I get angry very quickly; I get upset very quickly. (Participant 3, married, homemaker)

If someone finds out I am sick, it might become bad for my children’s future. For example, when they want to get married, no one may marry them because they say these children also have an incurable disease like their mother. (Participant 7, married, homemaker)

Social challenges

This category consists of social stigma, scrutiny, and misunderstanding, social withdrawal and isolation, and interpersonal and family challenges. These subcategories highlight the social challenges that participants faced and also detail how misunderstanding, judgment, and stigma lead to emotional distress and feelings of alienation.

Social stigma, scrutiny, and misunderstanding

Participants frequently complained about challenges caused by a lack of understanding of the disease among their social circle. Many mentioned that their relatives’ limited understanding or oversimplification of the illness led to its seriousness being downplayed. Others pointed to the surprise of others and the lack of public awareness, which made it difficult to discuss the illness or receive empathetic responses. This increased the sense of isolation in these patients, resulting in a noticeable decrease in social support.

If relatives, for example, in gatherings, if I tell them that I have such an illness and I cannot eat anything, they say it is some trivial thing, it is an allergy, it is nothing, it is not important. No matter how much I say that it is a severe sensitivity. It is not an allergy that you can say, after all that, lasts for one day, for two days, for one year. No, it is forever. It is a lie if I say I cope with it. In my opinion, others do not have the ability to understand us the way we want. They do not know at all what it is. (Participant 6, married, homemaker)

Participants frequently faced ridicule and sarcasm from their relatives and in-laws. They were also exposed to family rumors and gossip that contributed to increasing their social isolation and emotional burden.

My husband’s relatives make sarcastic remarks and say, ‘She is sick.’ Behind my back they say, ‘She has an allergy, and she is sick.’ I am forced to hide it. This is one of my challenges. I have not shown them the bread either. Now in a short time, I want to see them, and I am worried if one of our acquaintances comes. What should I tell them? What should I take? (Participant 3, married, homemaker)

Patients described the psychological impact of food restrictions being misinterpreted as attention-seeking or pretentious. These misunderstandings made following dietary habits a source of stress and anxiety. Moreover, some patients felt their illness was the result of their own sins or mistakes. This perspective intensifies self-blame and shame.

My challenge with this illness is that, when you go somewhere, you have to swear a thousand times on the Quran that, for example, you do not mean anything by not eating. You are forced not to eat. Yesterday, it was my uncle’s funeral anniversary; I did not eat food. Then you constantly have to explain to everyone that, look, I have a problem. From this point of view, it is a challenge. Also, some people at first do not believe it or think that you only do not eat in their home, that surely there is something going on, that you do not eat there and you eat in the homes of closer relatives, but when they see that I do not eat any food anywhere, then they believe that I do not have a problem with them. The problem is from me, not them. (Participant 14, mother of two, teacher)

If others find out that I am sick, they say, ‘It was God’s will that you become sick because you deserve it. You are paying for your sins.’ (Participant 13, unemployed, living with parents).

Participants considered others’ excessive attention to their eating habits as invasive behavior. They found continual questioning bothersome and felt forced to respond, even if the interactions were unnecessary or impolite. The repetitive nature of the questioning was deeply distressing for them and left participants feeling forced and drained.

For example, you go somewhere, they offer snacks. They always think there is something wrong with you. They make up stories for you if you don’t take it. I don’t know why you constantly have to explain. Sometimes a person does not want to constantly explain. These are our problems that we constantly struggle with. We have problems with people. You have to explain again. Then they say, ‘Is it even possible?’ (Participant 9, married, retired teacher).

Social withdrawal and isolation

Participants stated that food limitations had a significant influence on their social lives. They indicated that dietary restrictions reduced their social interactions, especially with friends and at events involving food. Sometimes, this challenge made them hide their illness and decline all invitations just to avoid undesirable attention or questions. These restrictions exacerbated feelings of loneliness and social exclusion and influenced participants’ mental health. Some patients preferred to isolate themselves and experience loneliness as a coping strategy to manage stress and social stigma.

In the beginning, because I could not go anywhere, it was hard for me, because if I did not eat something, they constantly asked me, ‘Why don’t you eat bread? Why don’t you eat that thing?’ And I do not like to constantly answer. But well, now I have come to terms with it, and I go out very little. (Participant 5, university student, living with parents)

Interpersonal and family challenges

Participants frequently reported avoiding disclosure of their illness to relatives and their spouse’s family, believing that they would be unable to understand their condition.

My husband’s relatives, in a mocking way, say that bread is not poison. Then nervous pressure comes to you, and your nerves get worn out. When you want to explain to them, it takes energy and patience. This creates a nervous tension. Even if you explain to them, they do not understand. They do not want to understand. (Participant 15, married, homemaker)

The disease also altered family routines and diets, as the participants’ dietary restrictions necessitated meal adjustments for all family members. These changes sometimes caused tension and conflict in family relationships. Family members also experienced feelings of guilt and empathy toward the patient. Participants noted limits on family members buying restaurant meals and reported reduced family interactions due to disease-related restrictions. In addition, financial concerns resulting from dietary requirements and treatment costs have sometimes exacerbated family conflicts.

I swear that this illness has really frustrated me. We cannot go to a party; we cannot go anywhere. Because of this illness, we always have to stay at home. My husband constantly complains and says that because of you, we do not go anywhere. He says that I have deprived him of seeing his relatives. (Participant 7, married, homemaker)

At home, my poor family members are forced; if they want to make bread-based food, they are forced to accommodate you and not eat the food that you cannot. For example, they feel sorry for you that you cannot eat bread, then they say, ‘It is a sin. How can we eat? Let it not eat.’ After all, it affects them; they get upset. (Participant 17, married, living in an extended family)

Financial–economic challenges

This category consists of financial challenges in disease management and lack of institutional financial support. These subcategories indicate the illness’s significant economic impact, since individuals faced high dietary costs without adequate insurance or government support.

Financial challenges in disease management

Participants reported that one of the main challenges in managing their condition was the high cost of gluten-free products. Constant anxiety about the cost of the diet added to unrelenting stress, affecting mental health and treatment adherence. Participants with limited financial means reported that they had to exclude some nutritious and essential foods, thus causing deprivation and malnutrition. They attributed their difficulty adhering to the diet to economic problems that often created tension and pressure within the family. In addition, some participants described financial dependence on their spouses as a gendered issue that reduced their independence and self-esteem.

I swear to God, now, honestly, my means are tight (voice breaks). That is, I do not have any good source of income, you could say. My husband has his own addiction, his own misery. Our money is spent on his things. We do not have a house of our own either. I also have two children, and there are their expenses too. To tell the truth, for the diet, sometimes really hunger puts a lot of pressure on me because nothing is available for me to eat, so for that reason, I am involuntarily forced to eat two or three bites of plain bread so that the hunger does not bother me. (Participant 6, married, homemaker)

I’m financially dependent on my husband. For me, who am a woman, it is very hard to want to go to Khorramabad with these expenses to get a few packs of bread and bring them. The cost of transportation is high. Also, this illness has not been settled in the minds of the people of Lorestan, especially their men, like my husband. He does not know; well, he finds it very ridiculous and does not know what it is. It is not important to him at all. For example, he finds it ridiculous to come all the way to Khorramabad to get a few packs of bread for me and bring them. The main reason that I postpone it is because of this. Because it is not important to him, and he thinks all of this is nonsense. For example, he says now ‘Do you want to get well with this bread?’ (Participant 1, homemaker with no independent income)

Participants indicated constant anxiety about the future financial costs of managing the disease and dietary needs. Many expressed their concern about being unable to afford medical expenses and worried that their current financial problems might worsen.

I am always worried that my condition will gradually get worse. I constantly think about what I should do if I get worse. How I can pay for my treatment costs. I am always anxious that one day my health will become so ruined that I won’t even be able to pay for my medicines. (Participant 13, unemployed, living with parents)

Lack of institutional financial support

Participants mentioned the absence of insurance and government financial support as one of the main sources of economic pressure. They noted that limited coverage costs for gluten-free products made them feel abandoned by the healthcare system. As a result, they experienced psychological distress and reduced diet adherence.

Now I spent one million tomans with borrowing and promises and misery in this store right before the New Year. Now I do not have even a single rial. I was just waiting for them to give me that damned one million from the insurance, and they did not give me the insurance either. (Participant 8, mother of one, primary financial supporter of family)

My father is retired. How much money can he have? And now, in addition to everything, he must also pay these extra expenses, which are very high. Every three months they give us a little money, about 450 thousand tomans, which is not even enough to buy the bread. So what should we do? (Participant 13, unemployed, living with parents)

Diagnostic and treatment challenges

This category contains challenges and harm in healthcare access, limited awareness and misinformation about the disease, and lack of supportive treatment protocol. These findings point to the gaps in the healthcare system, particularly delayed diagnoses and limited knowledge among healthcare providers. As a result, participants experienced confusion, distress, and reduced trust in medical care.

Challenges and harm in healthcare access

Several participants reported long diagnostic delays, which caused confusion, distress, and worsening of symptoms. They experienced feelings of fear, anger, and distrust toward healthcare professionals, believing that the specialists’ negligence had led to unintended harm.

I am truly one of the harmed individuals of the medical community who could not solve my problem on time, and because of this issue, I was very harmed. I was harmed socially, harmed in terms of family, and harmed in terms of personal growth. I always have such feelings. I have been very hurt. If they had diagnosed it, it would not have been an obstacle for me; I would have followed it. Now I truly understand that people can live healthy and have an easy life. (Participant 9, married, retired teacher)

Limited awareness and misinformation about the disease

Many participants mentioned that, at the time of diagnosis, they had never heard about the disease and had no knowledge of its nature. Even among those with higher education, knowledge about its causes, characteristics, and treatment was limited.

The doctor himself told me I have celiac, and I said, ‘What is celiac? What kind of illness is it? What is celiac at all?’ It was the first time I had ever heard this word. Even though I have higher education. I have a master’s degree. (Participant 9, married, retired teacher)

Some health professionals could not clearly explain the disease, further confusing patients and leaving them uncertain. Moreover, exposure to wrong or conflicting information increased their psychological stress and anxiety.

I did not even know the name of the illness. Later I understood that I cannot eat barley or wheat. The doctor spoke very little about it with me, but the few things he said really made me feel worse. He said there are many things I must not eat, and I am forced to buy gluten-free foods from Khorramabad because in our city such products do not exist at all. Gradually, I thought that there was nothing to eat at all, and this really made me upset. (Participant 15, married, homemaker)

Lack of supportive treatment protocol

Participants often reported that the lack of clear, standardized post-diagnosis treatment protocols added to confusion about how the disease should be properly managed. Many participants further reported heightened anxiety as a result of the lack of adequate and structured services, including counseling or nutritional support. Some participants believed their psychological and emotional needs had been ignored by health professionals and that the emphasis was placed wholly on the physical aspects of the disease.

When you go to the doctor, he only looks at your test results and may ask whether your body condition is good or not. No one cares about the problems I have, and no one even bothers to ask, ‘Do you have a problem? Is everything okay?’ (Participant 18, married, unemployed)

Dietary and nutritional challenges

This category consists of the following subcategories: challenges in dietary adherence, food-related anxiety and vigilance, and challenges with access and supply. The described subcategories highlight several issues connected with adhering to a rigid GFD. These would include psychological distress from the need to constantly monitor what is eaten, the relative unavailability of foods that are suitable for the diet, and concerns about continued adherence in social settings.

Challenges in dietary adherence

Participants reported that adhering to the strict diet remained challenging and it was difficult to tolerate and maintain. Many emphasized that fully adhering to this diet is more challenging compared to managing other diseases and becomes especially evident during events and gatherings that interfere with adherence.

The diet of this illness is constantly a challenge. We cannot eat everything. For example, in the hospital we cannot use the hospital food at all. I have to take an organic food container from home wherever we go. If we want to go out or to a wedding, we cannot use the restaurant food. Wherever we go, we must have our own food, our own spices, and even our own tomato paste with us. (Participant 10, married, nurse)

Participants also reported that the unpleasant taste of gluten-free foods made them difficult to tolerate. They were concerned that the poor quality and limited options of gluten-free products decreased their motivation and ability to follow the diet.

I loved cake, sweets, chocolate, and pastries. Think that I suddenly became deprived of all of them. Now I am forced to eat bread or cake made with very bad-tasting flour. Nothing is tasty anymore. (Participant 17, married, living in an extended family)

Food-related anxiety and vigilance

Participants experienced significant anxiety and obsession when checking food ingredients. They were consistently careful about hand hygiene and food separation to avoid accidental gluten contamination. They also reported an increase in psychological stress and obsession as a result of uncertainty about product labels and fear of hidden gluten.

Being a mother is very hard. For example, when I take a bite for my child, I constantly have to wash my hands. I always have to be careful about whether their food has come into contact with my food. There is no problem if they eat my food. But I always have to be careful not to eat their food. My efforts have increased. (Participant 14, mother of two, teacher)

I no longer follow the diet, and it is no longer important to me, because when I was following it, I was constantly worried about whether the food I was eating was safe or not. What if gluten entered my food? It was really hard for me. (Participant 1, homemaker with no independent income)

Challenges with access and supply

Participants complained about the lack of accessibility to gluten-free products and stores. They had to spend a lot of time, money, and energy to obtain essential items. The limited access to proper nutrition and the low quality of the products resulted in disappointment, psychological fatigue, and a decrease in their motivation to adhere to the diet.

This diet is very difficult and expensive. In addition to this, our city does not have any store that has gluten-free products at all, and that’s why I also don’t follow it. I, as a woman, find it very hard to go to Khorramabad with these costs just to get a few packs of bread. The transportation cost is high. (Participant 1, homemaker with no independent income)

Everyday life challenges

This category includes the following subcategories: functional limitations and academic setbacks and travel-related dietary limitations. These subcategories show how the illness affects not only health but also daily functioning, education or work, mobility, travel, and family interactions.

Functional limitations and academic setbacks

Participants frequently mentioned restrictions in engaging in personal activities and hobbies. They described experiencing feelings of inadequacy in performing tasks. They also believed that their illness interfered with their personal and professional progress.

When I used to go to the gym, I would drink coffee every morning or, for example, use something sweet. But I could not use that anymore because I was not sure at all whether it was healthy or not. Therefore, for a while when I was on the diet, I did not go to the gym either. Many things became more limited for me when I was on the diet. You always have a feeling of being special, not in a good way, but a negative kind of special among others. For example, some things that others can do, you cannot do. It’s not just about food. (Participant 15, married, homemaker)

Participants were additionally concerned about academic and professional setbacks. They experienced physical limitations, reduced perceived competence, and a lower quality of life. This highlights how the illness disrupts both daily functioning and long-term goals.

Now I truly understand that people can live healthy lives and have a comfortable life. I used to think, God, why do all people laugh? Why are they happy? Why do they sit comfortably in a group? Why can’t I be like them? What is wrong with me? I always said, ‘Lucky them. How good is their world? They sit comfortably; for example, they are smart, they continue their studies easily, they have high ranks. But why am I always behind?’ Later, I saw that all the blows I had taken were because of celiac disease. Now that I follow the diet carefully, I understand what normal people’s lives can be like. How a person can have a comfortable life without pain and without worry. Something I was not able to experience all these years. (Participant 9, married, retired teacher)

Travel-related dietary limitations

Participants stated that traveling caused anxiety and made it challenging to follow the diet. They indicated that difficulties in finding gluten-free foods reduced their travel enjoyment and restricted the places they could visit. They often prioritized dietary safety over enjoyment, which resulted in increased psychological burdens.

For example, you go to a city, somewhere, on a trip; everything is not available. You cannot use a sandwich. For example, when going on a trip, it is troublesome. If you want to go to a relative’s house, you have to worry about everything: the spices, the tomato paste, the rice, the oil. For these, it is very troublesome. Either you have to take your own things or not go anywhere at all. (Participant 15, married, homemaker)

Discussion

This research shows that CeD among women is not only an experience of chronic gastrointestinal illness. Instead, it should be understood as a highly gendered and socially embedded condition. As opposed to being limited to dietary restrictions or biomedical treatment, the disease reshapes women’s emotional lives, social identities, family roles, and everyday activities. Women living with CeD reported being continuously entangled with cultural expectations of being a “proper” woman, social interactions around food sharing, and forms of economic and social dependency. The analysis of women’s narratives indicates that managing CeD was not confined to biomedical self-management. It also involved a continuous negotiation of its social meanings. A more complex interpretative reading of the findings points to the phenomenon of “socially amplified chronicity” (see Fig. 1), in which dietary restrictions are translated into emotional suffering, social isolation, and insecurity. The onset of the disease disrupted personal identity by producing feelings of inferiority, guilt, and imperfection while also exposing women to fears and uncertainties regarding fertility and motherhood, shaped by culturally rooted expectations of maternal roles and responsibility. At the same time, coping with the disease took place under material and organizational constraints, including lack of economic independence, inadequate healthcare guidance, and limited access to gluten-free products, which further restricted women’s agency.

Fig. 1.

Conceptual representation of socially amplified chronicity in women with celiac disease

The socio-cultural context of food and belonging in Lorestan

The lived experience of CeD for women in Lorestan involves an ethical economy of food, hospitality, and belonging that is rooted in culture. Consequently, food should not be viewed simply from the nutritional aspect since it is the central factor for assessing femininity and moral worth. Women exist within a social environment in which food preparation, sharing, and eating take on significant moral meaning. Dietary restrictions cannot be readily seen in clinical terms but more as social obligations that include compliance, appreciation, and participation in social activities. Within this context, any inability to eat food shared by others, takes on symbolic significance and illness becomes a question of physical needs versus morality. This cultural ideology is particularly noticeable in how food refusal is perceived. According to the participants’ narratives, it appears that when a woman refused food, she was questioned incessantly, laughed at, and her claims were always taken with skepticism and considered exaggerated. This indicates an unspoken notion that food presented during social and familial interactions should be eaten, as eating it implies recognition and acceptance. Thus, food refusal is not perceived as a neutral act. It is interpreted as a sign of nonconformity to the norms of femininity expected from women. Another important contextual aspect is that the disease is perceived from a perspective of morality, by relating it to concepts such as “sin,” causing more suffering and self-blame. The disease is placed within the context of the larger moral world in which misfortune is associated with individual or family moral character, thus causing more feelings of guilt, flaw, and inadequacy. Additionally, mockery, gossip, and repeated questioning act as informal mechanisms of social control, promoting conformity to socially accepted norms of participation in meals. These processes contribute to social withdrawal, concealment of illness, and progressive isolation.

Conceptual contribution to the literature

CeD has been described in prior qualitative research as a long-term disorder that involves dietary management along with significant psychosocial implications [5, 21]. The chronic nature of CeD implies the need for a lifelong commitment to follow a GFD. This itself introduces continuous practical and emotional demands into everyday life [22]. Research has shown that individuals with CeD maintain a heightened sense of awareness regarding their diets, as even slight doubts about the contents of food items, how the food is prepared, or possible cross-contamination with gluten may cause ongoing worry [23]. Apart from dietary challenges, patients with CeD often feel stressed psychologically after being diagnosed with the condition, especially in the early stages of adaptation [5, 8]. Another challenge caused by CeD lies in its impact on social life, since food-related activities constitute an integral part of socializing [24, 25]. Evidence synthesis points to CeD being not just experienced as an illness but as a lifelong process, which requires constant adjustments in terms of identity, social interaction, and emotions [5]. Specifically, existing literature has focused on anxiety about being exposed to gluten, difficulties in adhering to the diet, and feelings of loss from restrictions on food consumption [25, 26]. Moreover, people with CeD report that their day-to-day life gets restructured on grounds of food safety concerns [27, 28]. Ordinary activities such as buying groceries or eating out may become mentally exhausting due to the need to plan and consider potential risks beforehand [21, 29].

Though the above research offers a good base for understanding CeD impact on individuals, it mostly frames experiences from the perspective of personal adjustment, dietary compliance, emotional distress, and problems with social functioning. Stigma has been viewed through the prism of misunderstanding [5], while the economic strain caused by the illness has been framed as a structural impediment involving food access and affordability [21, 30]. In the same way, disruption of identity is usually considered a psychological challenge arising from diagnosis and subsequently stabilizing with time [5].

The study demonstrates that being on a CeD diet involves more than just food exclusion and individual coping. It is grounded in culturally defined interpretations of food practices, where food consumption takes place within social settings. In such situations, the eating practices of individuals with CeD often become subject to scrutiny and appraisal. This suggests that stigma is not merely based on ignorance but rather is a process in which the legitimacy of disease undergoes constant testing through daily interactions. Medical explanations do not always suffice in removing uncertainties, as social norms concerning communal eating also affect perceptions. This pattern of needing to explain oneself leads to a sense of social pressure and otherness, whereby individuals anticipate being questioned or misunderstood even before engaging in social situations. Such feelings could lead people to avoid social gatherings or participate less in food-related events.

Moreover, while earlier research focused primarily on financial burden in terms of affordability and access to gluten-free products, we highlight the interconnectedness between financial hardship and gender dynamics. The ability of women to comply with the necessary dietary restrictions is determined by both their financial situation and the gender dynamics that influence gluten-free food purchasing. Indeed, the necessity to postpone and even forego dietary purchases was mentioned by several of our study participants despite recognizing their importance. This was not solely because of cost, but also because their needs were not always prioritized within household decision-making. Such results indicate that the financial problems associated with CeD involve more than the cost of and access to gluten-free foods. They are also experienced in social contexts that affect one’s access to resources and capacity to take actions recommended for dietary treatment.

The research also contributes to the knowledge on identity disruption in CeD. Contrary to the notion that the individual experiences an internal adjustment process after diagnosis, the findings show that feelings of difference, inferiority, and embarrassment arise continually because of the interactional nature of such experiences. Everyday situations involving food become sites where difference is publicly produced and made visible. This suggests that identity is not just altered by diagnosis but is continuously shaped through social encounters. Our results also challenge the underlying premise of the existing research that increased awareness and adaptation alone will be able to relieve the psychological and social burden associated with CeD. Even in the case of individuals who had sufficient knowledge about their dietary needs, distressing experiences continued due to structural constraints in food availability, economic pressure, and culturally embedded expectations around food sharing and hospitality.

Lived contradictions in celiac disease experience

There is a set of ongoing tensions that shape how CeD is lived in everyday life. These tensions reflect not simple adaptation but continuous negotiation between competing demands. Women’s accounts suggest that dietary control, while being essential for coping with the condition, can cause sustained psychological exhaustion due to the constant need for vigilance across many social and practical contexts. The choice to disclose one’s health problem versus keeping it confidential can also have mixed consequences. Disclosure reduces the risk of harm but exposes individuals to judgment and stigmatization, while concealment may protect social dignity but limits support and increases vulnerability. Likewise, maintaining belonging and positive social relations involves walking a tightrope between protecting one’s health by rejecting offered food and preserving harmony in social interactions. In a similar manner, adhering to dietary requirements leads to a contradictory situation of feeling responsible and capable of self-regulation on one hand and being less spontaneous, active, and socially engaged on the other.

Strengths and limitations

This study has several strengths. We used a semi-structured interview guide and it allowed us to explore participants’ experiences and maintain consistency in interviews at the same time. Our participants were from various socio-economic backgrounds; hence, this contributed to the study by representing a wider variety of experiences. Investigator triangulation among several researchers enhanced credibility and reduced possible bias. The analysis was also reviewed by four independent qualitative experts to further enhance credibility. Another strength of this study is that it represents an understudied population in Iran, adding worthwhile insights that may help healthcare providers and policymakers better support Iranian women with CeD. However, our study has several limitations that must be acknowledged. Selection bias may have occurred, as most of our participants were recruited from one gastroenterology clinic, and this approach may have excluded women who do not access formal healthcare. Furthermore, all participants were from Lorestan Province. This limits geographic and cultural diversity within Iran, and the results may not be generalizable beyond this specific regional and cultural context. A number of participants were reluctant to take part due to concerns about secrecy surrounding the illness. This was resolved by explaining the study intentions, ensuring the confidentiality of interview data, and allowing participants to choose a convenient time and place for the interview. It is also possible that participants’ responses were influenced by recall bias or social desirability bias.

Significance for research, policy, and practice

This study’s findings provide an invaluable perspective with important implications. Our results indicate that future research needs to examine gender-specific experiences of living with CeD. This is particularly important because of the additional psychological burden, social stigma, and economic reliance of women living with CeD. More research is also necessary to explore specific challenges across different contexts and to develop programs that address the multidimensional needs facing women with CeD. We underscore the need for systemic change, including expanded insurance coverage for gluten-free products, subsidized gluten-free food programs, and training for healthcare providers to improve diagnosis of CeD and address psychosocial needs. In the Iranian healthcare system, however, gluten-free basic food products are currently not covered by insurance plans. Given the severe financial burden and food insecurity reported by participants, a national-level policy change is needed to recognize gluten-free staple foods as medically necessary items under basic health insurance packages. In this context, the introduction of a monthly electronic voucher program for patients with CeD may represent a feasible and practical policy option. There also need to be policy efforts addressing the variance in the geographic distribution of gluten-free products. The availability of gluten-free products in Iran is heavily skewed towards urban centers, while people in smaller cities and rural areas experience severe scarcity, as well as higher transportation costs. Hence, there is a clear need for decentralization policies to ensure that regional pharmacies, as well as government-supported food outlets, operate within provincial health networks. Evidence from this study shows that we need a patient-centered approach to care that goes beyond just managing diet. Health care providers should screen for psychological distress and provide comprehensive education at diagnosis. They should also establish and offer ongoing support. With regard to the Iranian clinical setting, our results have revealed an important knowledge deficit among healthcare providers at the time of diagnosis, which led to misunderstanding and increased patient anxiety. To address this issue, structured continuing medical education programs concerning CeD need to be designed for general practitioners, internists, and gastroenterologists within the Iranian Ministry of Health framework. These programs must focus on identifying atypical presentations, post-diagnostic counseling, and communication approaches that reduce patient anxiety. There is an opportunity for dietitians, psychologists, and social workers to form multidisciplinary care teams. We also need to create peer support networks and community resources to help lessen feelings of isolation and improve quality of life. This is vital to foster awareness of successful individuals living with CeD and helps challenge the stereotype that the condition limits one’s personal, educational, or professional achievement. Addressing these complex challenges requires coordinated efforts in research, policy, and practice. This coordination is key to improving outcomes and well-being for women living with CeD.

Conclusion

For women, CeD went much further than mere dietary management and affected several aspects of their lives. It had implications for their psychological well-being, leaving them feeling sad, anxious, and inadequate. This is often accompanied by feelings of guilt and fear related to fertility and motherhood. CeD also influenced their social relationships, as stigma and the need for secrecy led many to withdraw rather than seek support. There was also a financial dimension to these experiences. This arose both from the cost of gluten-free foods and from the marginalization of women’s dietary needs within the household. Delayed diagnosis and limited provider knowledge further contributed to these challenges. These difficulties reinforced each other, consistent with what we describe as socially amplified chronicity.

Supporting women with CeD requires significant changes. The healthcare system needs to shift away from the biomedical model and it must address the psychological and social dimensions of the disease. Policy actions should prioritize increasing gluten-free food access through increased insurance coverage and subsidized food programs. Geographic access equity should also be considered when planning gluten-free food options. To improve quality of care, provider education and systematic screening for psychological comorbidities should be incorporated into standards of care. Implementation of peer support groups and public education campaigns may help to decrease stigma and social isolation.

Author contributions

Conceptualization: Narges Naderi, Bardia Amidi, Javad Yoosefi Lebni Data Curation: Narges Naderi, Bardia Amidi Formal Analysis: Narges Naderi, Bardia Amidi, Javad Yoosefi Lebni Investigation: Narges Naderi, Bardia Amidi Methodology: Narges Naderi, Javad Yoosefi Lebni. Visualization: Bardia Amidi Project Administration: Narges Naderi Supervision: Javad Yoosefi Lebni, Saleh Azadbakht Validation: All authors Writing – Original Draft: All authors Writing – Review & Editing: All authors.

Funding

None.

Data availability

The data that support the findings of this study are available from the corresponding author upon reasonable request.

Declarations

Ethics approval and consent to participate

This research was approved by the Lorestan University of Medical Sciences Ethics Committee (IR.LUMS.REC.1404.263). All ethical guidelines were strictly followed. In face-to-face interviews, written informed consent was obtained from the patients, while in telephone interviews, verbal consent was obtained. Participants were informed about the study’s goal and procedures. They were told that their information would be kept confidential. They were also given the option to withdraw at any point. Audio recordings were deleted after data analysis.

Consent for publication

Not applicable.

Declaration of AI use

AI-assisted writing tools were used exclusively for linguistic refinement, including grammar correction and readability enhancement. The authors carefully reviewed and edited all AI-assisted outputs and take full responsibility for the content of the manuscript. All analyses and interpretations were performed exclusively by the authors.

Competing interests

The authors declare no competing interests.