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Espacio para Profesionales de la Salud

Italy and its commitment to the search for undiagnosed celiacs

Aglutenados interviewed Carlo Catassi, a renowned Italian pediatric gastroenterologist dedicated to the study of celiac disease. The main topic of this interview has to do with a law that was recently approved in the Italian parliament to identify undiagnosed celiacs, who are almost 60%, together with type 1 pre-diabetes. Italy is the first country to have a law for this purpose. 

 

Aglutenados: I was very struck by this news about nationwide screening of children to detect undiagnosed cases of celiac disease. I imagine this is the corollary of years of research…  

C.C.: That's right. For more than thirty years we have been researching the topic with epidemiological studies and screening [1]studies.  We have done several screening studies. The last one, published in 2023, was performed in different regions of Italy on children 5 to 10 years of age. A sample of more than 9000 children was investigated by taking a few drops of whole blood during school time. We were able to detect that the overall prevalence of CD in Italy is very high, approximately 1.65% of celiac children in the general population.  And today  less than 40% are diagnosed on clinical ground.

 

A.: this result is striking that since Italy is a country where there is considerable awareness among the general population about CD; number of gluten-free products, restaurants; doctors who recognize the disease, an active Celiac Association, a state that helps celiacs with money, this happens, right? Why could it be?

C.C.: It happens that there is a high proportion, almost 50%, who have asymptomatic celiac disease; and if they don't perform the blood test, they will not be detected. It also happens that there are many non-specific symptoms of CD, such as chronic fatigue, for example, which often do not make it to the consultation. That is why we think it is so important to carry out action at the national level to identify them. 

 

 

TO,; Of course, an early diagnosis significantly improves the future prognosis, is that right? 

C.C.: Clearly;  in CD it is key to avoid future complications. And in the case of type 1 diabetes it can even prevent deaths, since diabetes in children usually appears suddenly and with symptoms so dangerous that it is sometimes difficult to reverse them. Being able to identify these cases allows them to be treated before the disease develops.

A.: How important Carlo! There is a certain relationship between CD and type 1 diabetes, is that correct?

C.C.: Yes, both are autoimmune diseases and approximately 5 or 6% of diabetics are also celiac.

A.: I'm curious how you managed to turn this into law...

 

C.C.: Previous research demonstrated the high prevalence, and on the other hand, politicians were able to understand the importance of the issue, perhaps because some of them have children with celiac disease and also because it is recognized that investing now in early diagnosis is a health saving in the future.

 

A.: Sure. That is an excellent public policy thinking about the future of a nation and not only in the period of government of the party in power. Is the study expensive?

 

C.C.: Yes, it is having strategic thinking, thinking long term. The study is quite expensive, it is estimated  it will cost around 50 euros per screened child.

 

A: How much money do celiacs receive from the State today to buy gluten-free foods?

 

C.C.: in Italy Celiacs Receive around 100 euros per month for the purpose of the gluten-free diet.

 

A.: How envious!  Returning to the national Screening that will be done starting next year, 2025, how will it be implemented?

 

C.C.: Only children of 2 or 3 years old will be evaluated. It is the pediatricians of each region who have the information on the population to be able to contact families with children at these ages. These children have blood drawn from their finger, a few drops, to identify the genetic predisposition to CD (DQ2 and DQ8), type 1 diabetes and the antibodies for both pathologies.

 

A.: Can it happen that a child does not have high CD antibodies but does have damage to the intestine?

 

C.C.: In children, when there is CD, antibodies are present in almost 100% of cases. The majority of cases of CD occur in the first years of life, hence the importance of early detection and the certainty that evaluating young children is the correct thing to do.

 

A.: If you detect children who have a genetic predisposition to CD (any of the DQ2/DQ8 genes present) without antibodies at the moment, how do you continue with them?

 

C.C.: These children are contacted and asked to be evaluated again after 5 years to see if they have developed antibodies or not. They are monitored.

 

A.: Perfect, and what is the general procedure like?

 

C.C.: Samples are collected in each region from children whose parents agree to participate.

 

A.: Participation is not mandatory, I understand

 

C,C.: It is voluntary, parents decide. From the pilot experiences we saw that participation is high.

 

A: Where are these samples analyzed?

 

C.C.: In the current pilot-study all samples are analyzed in a laboratory in Milan. If the test is positive, the child's family is called to contact the reference center in their region.

 

A.: In cases of CD, is the biopsy performed in all cases identified with antibodies above the reference value?

 

C.C.: The suggestion to perform the biopsy depends on the level of antibodies.  

 

A.: How interesting Carlo! This is going to cause big changes in the country in various aspects related to CD and the gluten-free products industry, I imagine.

 

C.C.: Surely. The most important thing is that we will be able to increase diagnoses and ensure that many children grow up healthy and avoid future complications if they follow a gluten-free diet. And we will avoid deaths and complications in the cases of children with type 1 diabetes.

 

A.: I congratulate you, Carlo, and all those who participated in previous studies, and those who managed to turn this into law. It still sounds like something from “another planet” to me. Thank you!

 

Carlo Catassi

Pediatric gastroenterologist

Epidemiologist, EC Researcher.

Director of the Department of Pediatrics at the Polytechnic University Delle Marche in Ancona, Italy.

Consultant of the Italian Celiac Association