Celiac disease - an underestimated and often wrongly downplayed mistress of hide-and-seek, with about 380,000 people in Poland suffering from it

According to estimates, based on European epidemiological data, about 380,000 people in Poland may suffer from celiac disease. The majority, as many as 90-95%, unfortunately do not know about it. Those who do know face discrimination in many aspects of social life. On May 16, Poland will celebrate International Celiac Disease Day. This is an ideal opportunity to raise awareness and show support for those struggling with the condition. - Contrary to popular belief, a gluten-free diet is not a weight-loss diet, a fad or a fashionable lifestyle. A strict gluten-free diet for life is currently the only possible treatment for celiac disease. Lack of public knowledge about the symptoms and consequences of celiac disease results in patients who are on a gluten-free diet being treated as people who have decided on their diet by choice. Meanwhile, for celiacs, it is not a choice but a necessity, and for life. It is time for public awareness of celiac disease to increase," points out Malgorzata Źródlak, president of the Polish Association of People with Celiac Disease and on a Gluten-Free Diet.

Celiac disease is a chronic autoimmune systemic disease with a genetic basis, in which, due to the consumption of gluten, there is an abnormal reaction of the immune system and, as a result, damage to the villi of the small intestine. - In celiac disease, as a result of the body's reaction to gluten, there is an immunological destruction of the intestinal villi responsible for absorption, explains Piotr Dziechciarz, MD, WUM professor, chairman of the Celiac Section of the Polish Society of Gastroenterology, Hepatology and Child Nutrition. - This results in nutrient malabsorption and a variety of clinical symptoms, he adds. Celiac disease can occur at any age and does not always manifest with gastrointestinal symptoms (such as abdominal pain, chronic diarrhea, bloating or constipation), making it very difficult to diagnose.

- The symptoms of celiac disease can vary widely. Often, the main symptoms of celiac disease are extraintestinal and uncharacteristic, such as.among others: anemia, osteoporosis, short stature, delayed puberty and fertility problems, joint pain, chronic fatigue, vitamin and mineral deficiencies, oral ulcers, neurological symptoms (migraine, balance problems, tingling numbness or pain in the hands or feet), depression and unexplained chronic hyper-transaminasemia (elevated liver test levels), Dühring's disease (a cutaneous variant of celiac disease) and many others, explains Dr. Piotr Dziechciarz. - Celiac disease can also produce no symptoms and only become apparent when complications of the disease develop, he adds.

The consequences of untreated celiac disease (i.e., failure to adhere to a strict gluten-free diet) can include: an increased risk of developing cancers of the digestive system, including the most common small intestinal lymphoma and cancer of the esophagus and throat, osteoporosis, anemia or fertility problems.

- According to estimates based on European epidemiological data, about 1 population in Poland may suffer from celiac disease. Only about 5-10% of celiac patients are diagnosed, the rest do not know they have the disease. Thus, several hundred thousand Poles of different ages and genders may be exposed to complications of undiagnosed celiac disease or treated for diseases that may be a consequence of undetected celiac disease by doctors of many specialties, thus generating significant costs for the state budget. These costs could be avoided if celiac disease was diagnosed at an early stage," stresses Malgorzata Źródlak.

Unfortunately, it takes as long as 8 years, on average, for patients' diagnostic odyssey (from the onset of symptoms until a correct diagnosis is obtained). - This is due, among other things, to a lack of knowledge about the extraintestinal symptoms of celiac disease and not identifying them with celiac disease," points out Paulina Sabak Huzior, vice president of the Polish Association of People with Celiac Disease and on a Gluten-Free Diet. - A barrier to early diagnosis of celiac disease is also the lack of a basic diagnostic test for the disease in the basket of services of the primary care physician. As an Association, together with experts, we are leading efforts to change this. We hope this will happen," he adds.

- To diagnose celiac disease in adults, it is necessary to determine anti-tissue transglutaminase (anti-tTG) antibodies to IgA, total IgA levels and a small intestinal biopsy. This is performed endoscopically during gastroscopy. For a correct diagnosis, the doctor should take at least 5 sections from different parts of the intestine, including 1 from the duodenal pad. In children, a gastroscopic biopsy can be waived in some cases, while diagnosis with blood tests is more complex, Dr. Piotr Dziechciarz stresses.

Diagnosis of celiac disease is, on the one hand, a relief - the patient already knows what causes his ailment, but also the beginning of a life revolution. This disease affects not only the lives of affected patients, but entire families.

It is especially difficult when a child falls ill. - Despite the fact that we have learned to live with this disease, practically our entire life is subordinated to it. If we plan to go on vacation, then only to places where we can cook our own meals and have access to gluten-free products. If we go out to a family celebration, then only with our own provisions," points out Karolina, mother of 7-year-old Julia, who was diagnosed with celiac disease at the age of 3. - This disease excludes from social and school life. Children with celiac disease are not provided with safe meals in school cafeterias, they cannot safely go on school trips, camps or other outings. For peers' birthdays, they go out with their own cake and snacks or don't go at all. There is always a risk of meal contamination. And knowledge about celiac disease is scarce. We constantly have to explain to everyone around us that our daughter is harmed by even the smallest amount of gluten, that you can't cut a gluten-free product on a board on which gluten bread was just cut, that you don't grow out of this disease, and that living without gluten is a necessity for us and not a fad or following fashion," she adds with exasperation.

A gluten-free diet is so far the only form of treatment for celiac disease. It is also a very heavy burden on household budgets. - Gluten-free products are up to several times more expensive than conventional ones and there is no state support for celiacs. The entire burden of treating celiac disease falls on patients and their families. As patients, we are discriminated against. And not only when it comes to financial support, but also medical care. There is not a single outpatient clinic for celiac patients in Poland, despite the fact that more people have celiac disease than breast cancer or lung cancer. There are no standards of care for patients after diagnosis, and diagnostic tests are missing from the basket of guaranteed benefits. Patients also lack the support of qualified nutritionists. Downplaying the gluten-free diet and lack of knowledge mean that basic safety rules are not observed in the preparation of gluten-free meals in hospitals or sanatoriums, meanwhile the patient is harmed by even the smallest amount of gluten," points out Malgorzata Źródlak. - A patient with celiac disease is a patient who is not taken care of by the health care system in Poland. It is time to finally change this," she appeals.

In order to make life better for patients with celiac disease and on a gluten-free diet in Poland, the Polish Association of People with Celiac Disease and on a Gluten-Free Diet has prepared a list of demands to those in power, calling for:

• appointment by the Ministry of Health of a team of experts to prepare a program of comprehensive care for patients with celiac disease
• Expanding the basket of guaranteed services (within the entrusted budget) to include a diagnostic test for celiac disease, which could be ordered by a PCP
• Broader education of the medical community on the diagnosis and monitoring of the disease
• System support for patients and their families (e.g., tax credits) in the cost of diet treatment
• Defining the profession of clinical nutritionist, which should be employed in health care facilities
• Development and implementation of nutrition programs tailored to the needs of patients with celiac disease and on other elimination diets in hospitals and sanatoriums, as well as education on the role of a specialized diet in the treatment process
• Introduce the topic of celiac disease and diet-related diseases as part of health lessons in schools
• Introducing into the Education Law (Article 106 a) the right of a child with celiac disease or on another elimination diet to a hot meal at school, linked to training activities in this direction
• Establishing an inter-ministerial team to comprehensively support celiac patients and their families.

Celiac disease may be a hide-and-seek champion, but through education and awareness-building it has a chance to be "caught" at an early stage, before its consequences are irreversible and tragic. It is important that both patients, doctors and decision-makers, including the Ministry of Health, know this.

About the Association

The Polish Association of People with Celiac Disease and on a Gluten-Free Diet is the largest non-profit organization helping people on a gluten-free diet. We operate all over Poland and have active volunteers in more than a dozen cities. For nearly 20 years we have been spreading knowledge about celiac disease and successfully changing Poland into a country friendly to people on gluten-free diet.

Source: PSOzCinDB