Experts: It takes an average of 8 years to diagnose celiac disease in Poland

Celiac disease, which is the result of the body's abnormal reaction to gluten, can cause a wide variety of symptoms, which is why its diagnosis in Poland takes an average of 8 years - experts warn on International Celiac Disease Day, which is celebrated on May 16.

Celiac disease is a chronic autoimmune disease with a genetic basis, characterized by an abnormal response of the immune system to dietary gluten, a protein found in wheat, rye, and barley. As a result, the villi of the small intestine are damaged.

"In celiac disease, as a result of the body's reaction to gluten, the intestinal villi responsible for absorption are immunologically destroyed," explained Dr. Piotr Dziechciarz, chairman of the Celiac Section of the Polish Society of Pediatric Gastroenterology, Hepatology and Nutrition, quoted in a press release sent to PAP.

As a result, the absorption of nutrients is impaired and various clinical symptoms appear. These are not always gastrointestinal symptoms, such as abdominal pain, chronic diarrhea, flatulence or constipation.

"The symptoms of celiac disease can be very diverse, extraintestinal and often non-specific, such as: anemia, osteoporosis, short stature, delayed puberty and fertility problems, joint pain, chronic fatigue, vitamin and mineral deficiencies, mouth ulcers, neurological symptoms (migraine, balance problems, tingling, numbness or pain in the hands or feet), depression and unexplained chronic hypertransaminasemia (elevated levels of liver function tests), Dühring's disease (cutaneous form of celiac disease) and many others," listed Dr. Dziechciarz.

He added that the disease may also not cause any symptoms and only become apparent when complications occur.

The only treatment for celiac disease is a strict, lifelong gluten-free diet.

The consequences of not following a strict gluten-free diet may include an increased risk of developing cancers of the digestive system, including the most common lymphoma of the small intestine and cancer of the esophagus and throat, osteoporosis, anemia or fertility problems.

Celiac disease can occur at any age. More than 7 million Europeans suffer from it.

"According to estimates based on European epidemiological data, about 1% of the population in Poland may suffer from celiac disease," said Małgorzata Źródlak, president of the Polish Association of People with Celiac Disease and on a Gluten-Free Diet. In total, this is 380,000 Poles, including 77,000 children.

"Only about 5-10% of patients are diagnosed, the rest do not know they are ill. Therefore, several hundred thousand Poles of different ages and genders may be exposed to complications of undiagnosed celiac disease or are 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," emphasized Źródlak. According to her, these costs could have been avoided if celiac disease had been diagnosed at an early stage.

Meanwhile, an average of 8 years elapses from the moment symptoms of celiac disease appear until the patient receives a correct diagnosis. "This results, among other things, from a lack of knowledge about extraintestinal symptoms of celiac disease and not identifying them with celiac disease," assessed Paulina Sabak-Huzior, vice president of the Polish Association of People with Celiac Disease and on a Gluten-Free Diet.

Dr. Dziechciarz explained that in order to diagnose celiac disease in adults, it is necessary to determine the IgA class of antibodies against tissue transglutaminase (anti-tTG), the total IgA level and a biopsy of the small intestine. The biopsy is performed endoscopically during gastroscopy.

"For a correct diagnosis, the doctor should take at least five biopsies from different parts of the intestine, including one from the duodenal bulb. In children, in some cases, it is possible to skip the gastroscopic biopsy, but diagnostics using blood tests is more complex," the expert explained.

Źródlak pointed out that the association has been fighting for 20 years for better access for celiac patients to diagnostics, education and safe gluten-free food. "Although a lot has changed, we still have a long way to go. (...) Contrary to popular opinion, a gluten-free diet is not a weight-loss diet, a whim or a fashionable lifestyle. A strict gluten-free diet for the rest of your life is currently the only possible form of treatment for celiac disease," she said. In her opinion, celiac patients need greater social understanding and systemic support.

During the Polish presidency of the EU Council, which is coming to an end, a petition from celiac patients was submitted to the European Parliament, calling for the elimination of inequalities affecting people on a gluten-free diet and for the improvement of the living conditions of all Europeans affected by this disease. It was submitted by the Spanish Celiac Association – one of the patient organisations associated with the AOECS (Association of European Celiac Associations).

The petition's authors appealed, among other things, to guarantee clear diagnostic criteria in all member states and to guarantee coverage of the costs of treating celiac disease as an element of the publicly financed healthcare system. In their opinion, it is also necessary to: create tax and financial incentives for producers and distributors of gluten-free food to reduce the prices of gluten-free products and to guarantee access to a gluten-free diet in all forms of collective catering, catering services and accommodation. For example, in Poland, over 51,000 school-age children with celiac disease do not have access to a warm, safe meal in schools.

The petition also calls for the establishment of a European celiac disease centre that would support research into celiac disease and monitor the situation of patients in individual countries.

Źródlak noted that the Polish Association of People with Celiac Disease and on a Gluten-Free Diet has been approaching the government with similar demands for years, but none of them have been implemented so far. "Now, when, thanks to the recently submitted petition of patients, the topic of celiac disease has found its way onto the agenda of the European Parliament, and prevention is being talked about more and more throughout Europe, Polish decision-makers should also see the importance of this problem. This is the perfect time to take specific actions. I hope that the Polish Ministry of Health will finally understand this," she concluded. (PAP)

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