“Celiac disease currently has no developed medication. The only treatment is a gluten-free diet. To turn this disease into a lifestyle, it’s crucial to offer gluten-free meals in all areas of life—universities, dormitories, groceries, markets, restaurants, schools, workplaces—in short, in every area we interact with society, to ensure that individuals with celiac disease can stay healthy and maintain their diets.”

Celiac disease is an immune system disorder that causes damage to the intestines when gluten is consumed. Gluten is a protein found in wheat, barley, and rye. Products containing gluten are quite common in Turkish cuisine and are found in many traditional dishes. For example, bread, bulgur, pasta, pastries, and various desserts all contain gluten.

When people with celiac disease are exposed to gluten, inflammation and damage occur in their intestines, leading to digestive problems and impaired nutrient absorption. There is currently no medication to treat celiac disease. The only treatment is a lifelong gluten-free diet.

The symptoms of celiac disease vary from person to person, making diagnosis difficult. While some people show symptoms with growth retardation, others have anemia, or recurrent diarrhea or constipation.

Undiagnosed celiac disease causes numerous complaints and individuals who are unaware they have celiac disease often visit multiple doctors and hospitals for their symptoms. If not diagnosed, the disease can progress to intestinal cancer. However, when celiac disease is diagnosed and a gluten-free lifestyle begins, almost all negative symptoms disappear. As awareness of celiac disease increases among healthcare workers, teachers, parents, and the general public, early recognition and diagnosis of the disease will improve. Diagnosing celiac disease not only improves individuals’ health but also helps reduce the demand on healthcare services and the burden on the state.

Globally and in Turkey, the prevalence of celiac disease is estimated to be around 1%. There has been an increase in the diagnosis of celiac disease in recent years. It is estimated that there are approximately 1 million people with celiac disease in Turkey.

Unfortunately, despite making up a significant portion of the population, celiac patients are not widely recognized in society, and the importance of gluten-free diets is often overlooked in many areas.

Nutrition is a basic human need, and access to nutrition is one of the most fundamental rights. Nutrition is not a luxury but a necessity. Today, people with celiac disease face significant difficulties in accessing gluten-free foods. From school canteens and cafeterias to restaurants and cafes, universities, dormitories, workplaces’ cafeterias, and markets, ensuring gluten-free food is crucial for people with celiac disease and other conditions requiring a gluten-free diet to maintain their health.

My journey with celiac disease began with my daughter. After her diagnosis, I noticed two critical issues. Firstly, gluten-free food and products were scarce and not widely available. Despite living in a major metropolis like Istanbul, we struggled to find gluten-free food. We were afraid of going hungry whenever we stepped out of our home, and we couldn’t even attend hospital appointments without preparation. In a vast city, I could only find two or three gluten-free bakeries and cafes after extensive research. While we faced such challenges in a city like Istanbul, I couldn’t even imagine how difficult it must be for those living in other parts of Turkey, especially in small rural areas, to live with celiac disease and find gluten-free products.

Secondly, these gluten-free products were significantly more expensive than those for people without celiac disease, making it particularly challenging for families with limited purchasing power to live with celiac disease.

This journey with my child led me to create a foundation aimed at raising awareness about celiac disease and promoting gluten-free diets in Turkey. In April 2023, the Celiac Foundation (Çölyak Vakfı) was established. Based on the deficiencies we experienced and the experiences we gained, our foundation conducts work across Turkey for individuals with celiac disease and other conditions requiring a gluten-free diet. The primary goal of our foundation is to spread gluten-free diets and raise awareness of celiac disease in Turkey. Additionally, our foundation aims to provide scholarships, financial and in-kind assistance, housing, nutrition, and other needs for individuals with celiac disease.

Since our foundation’s establishment, we have fought in various areas to find solutions to the challenges faced by people with celiac disease. Even within a year, we have carried out valuable work, including important meetings addressing the issues of individuals with celiac disease. The efforts we have made are starting to make a difference for those with celiac disease.

Our foundation is working with various ministries, the Higher Education Council (YÖK), and municipalities to promote gluten-free diets.

As a result of our meetings with the Higher Education Council, YÖK sent an official letter to all universities to serve gluten-free meals in their cafeterias and offer gluten-free snacks in their canteens. Following this letter, many universities began to serve gluten-free meals. We announce universities offering gluten-free menu services through our foundation’s accounts. We eagerly await the completion of the process of serving gluten-free meals at all universities. We extend our gratitude to the Higher Education Council’s valuable administrators for their efforts following our requests.

Following our meetings with the Ministry of Youth and Sports, significant steps were taken for celiac students in dormitories across Turkey. The ministry allowed the use of heaters for celiac students and began working on providing gluten-free meals and menus. Last week, we conducted an unprecedented awareness campaign in all dormitories across Turkey as part of World Celiac Day, in collaboration with the Ministry of Youth and Sports. Informational posters featuring our foundation’s logo and contact details were placed in all dormitories. Dietitians explained celiac disease to students, and gluten-free meals and snacks were served in all dormitories on the same day. We organized an informative conference with the participation of the Celiac Foundation at the Istanbul Youth and Sports Ministry Provincial Conference. Youth is the future of Turkey, and raising awareness about celiac disease with the support of the ministry is crucial for increasing societal awareness. We thank the General Directorate of Youth and Sports, the Istanbul Provincial Directorate, and all dormitory administrators for their efforts.

KEEPING GLUTEN-FREE PRODUCTS IN MARKETS BECOMES MANDATORY

As a result of our work with the Ministry of Trade, a mandate was introduced requiring chain markets and stores to stock gluten-free products. Starting in June and September 2024, gluten-free foods will be gradually available in markets. During our meetings with the Ministry of Trade, we expressed our needs, mentioning that we couldn’t even find a basic loaf of bread, one of our most essential nutritional needs, in the markets. We highlighted that only a few chain markets had limited gluten-free sections, and other markets didn’t have any gluten-free products. The ministry officials listened to our requests with great empathy, noting that such needs had never been communicated to them before. Following our efforts, the Ministry of Trade rapidly implemented a solution by making gluten-free products mandatory in markets. We, as the Celiac Foundation and families with celiac disease, are delighted with this initiative that will make our lives easier and more comfortable. We thank the Director General of Domestic Trade and his entire team for their work.

We had important engagements with the Ministry of National Education. We are working together to make life easier for celiac students in schools. We collaborated with the Ministry of National Education on the first Celiac Directive to be implemented. The work, now in the approval process, will be shared with positive news soon. We conduct informative seminars and webinars for teachers about celiac disease. Last week, the Ministry of National Education conducted celiac awareness activities in schools nationwide following a letter sent to all schools. We extend our gratitude to the ministry’s administrators for their dedicated efforts to support celiac students.

We are working with the Ministry of Health, including the General Directorate of Public Hospitals, the General Directorate of Public Health, and the General Directorate of Health Promotion, on celiac disease and gluten-free diet initiatives. We requested gluten-free meals be served to patients and their companions in hospital cafeterias. Following our engagements, the Ministry of Health has been regularly sharing posts on its social media accounts to promote celiac disease awareness. We collaborated with the Public Health Department to support celiac earthquake victims after last year’s earthquake disaster, and we applied for a European Union project. We continue to work together on these initiatives.

We held discussions with the Ministry of Labor and Social Security, conveying our requests to increase the celiac allowance. We communicated our concerns to both the General Director of Labor and Social Security and the Minister’s Advisor for consideration by the Minister. We will continue to monitor the process for improving the celiac allowance.

GLUTEN-FREE PRODUCTS NOT SUITABLE FOR CELIAC PATIENTS POSE A RISK

In our meetings with the Ministry of Agriculture and Forestry, we emphasized the importance of clearly labeling gluten-free products for consumers. In recent years, the popularity of gluten-free diets, even among individuals without any health issues, has led cafes and bakeries to diversify their gluten-free options. This development is very positive for us. However, the improper preparation of gluten-free products, such as being made in gluten-containing environments, and not meeting the state’s gluten-free standards, poses a significant problem for us. Such issues threaten the health of individuals who need to follow a gluten-free diet for medical reasons. The use of gluten-free flour does not make a product gluten-free. For a product to be genuinely gluten-free, it must contain less than 20 ppm of gluten and be safe for celiac patients to consume. Our foundation is working on addressing these incorrect practices with the Ministry of Agriculture and Forestry. We oppose the spread of improperly produced gluten-free foods solely for commercial purposes, and we will continue our efforts to ensure the correct provision of gluten-free foods needed by consumers.

We are also working with municipalities to promote gluten-free diets. In collaboration with the Celiac Foundation, we have gluten-free food trucks in Caddebostan and Bakırköy Beltur locations, operated by Istanbul Metropolitan Municipality (IBB). We foresee that these food trucks will become more widespread in the near future. I am delighted to announce that another gluten-free Beltur location will be opening soon. We will soon announce the location of the third gluten-free Beltur in Istanbul.

Celiac disease currently has no developed medication. The only treatment is a gluten-free diet. To turn this disease into a lifestyle, it’s crucial to offer gluten-free meals in all areas of life—universities, dormitories, groceries, markets, restaurants, schools, workplaces—in short, in every area we interact with society, to ensure that individuals with celiac disease can stay healthy and maintain their diets.

Our journey is long, and our struggle is to ensure access to the most basic human need: food. We need unity, support, and to make our voices heard. As the Celiac Foundation, we will continue our efforts in this regard. The support of every institution and individual is invaluable to us. 

In this regard, as a result of the collaboration between the Celiac Foundation and the Sinangil Gluten Yok brand during the World Celiac Day, we organized the second Celiac and Gluten-Free Living Summit, where we emphasized the importance of gluten-free living and increased societal awareness by exchanging information about Celiac disease and gluten-free living. I would like to thank Sinangil Gluten Yok company for sponsoring this important event to emphasize the importance of gluten-free living in society and to support Celiac patients. 

Together, shoulder to shoulder, to promote gluten-free eating and increase awareness of Celiac disease in Turkey.

Freedom in every bite, solidarity in every step!