La Celiachia nell'età pediatrica e nell'adulto

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La Celiachia nell'età pediatrica e nell'adulto

Il Booklet "LA CELIACHIA NELL'ETÀ PEDIATRICA E NELL'ADULTO", a cura del Board Scientifico di AIC, è un'iniziativa di informazione e sensibilizzazione rivolta ai medici di medicina generale e ai pediatri di libera scelta, generalmente la prima linea di individuazione di quelle persone, adulti e bambini, che ancora non hanno ricevuto una diagnosi di celiachia.

La pubblicazione si pone i seguenti obbiettivi:

  • Identificare tempestivamente i sintomi della celiachia (spesso non classici ed extra-intestinali)
  • Indirizzare il paziente verso il corretto percorso di diagnosi (spesso confrontandosi con gli specialisti)
  • Gestire il paziente diagnosticato monitorandone la terapia (la dieta senza glutine) e lo stato di salute mediante esami specifici da eseguirsi periodicamente

In Italia circa 400.000 persone non sanno di essere celiache: AIC si impegna per far emergere le diagnosi nascoste.

La celiachia non diagnosticata può portare a problematiche quali fratture spontanee ripetute in uomini e donne, aborti spontanei ripetuti, infertilità, disturbi della gravidanza, carenza di ferro o anemia, fino a complicanze drammatiche tra cui il linfoma intestinale.

In media sono richiesti ancora 6 anni per giungere a una diagnosi dall’inizio dei sintomi.

Per questo motivo AIC è costantemente impegnata al fine di contribuire a ridurre il tempo di diagnosi e il numero dei celiaci non diagnosticati: i pazienti e i medici hanno un ruolo fondamentale nel riconoscere la celiachia nelle sue forme più svariate.

Celiac disease in children and adults

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AIC Onlus (Italian Association for Celiac Disease) is a non-profit patient association that has been committed for over 35 years to positively changing the lives of people with celiac disease and their families. It was funded in 1979 by a few parents of children with celiac disease at a time when little was known about it, and it was considered to be a disease linked to youth. AIC is a federation composed of 20 associations across all of the Italian regions, as well as in the autonomous provinces of Trento and Bolzano. In addition to AIC, they are part of the AIC: the Foundation for Celiac Disease (FC), which provides grants for scientific research on the disease, and the social enterprise Spiga Barrata Service (SBS), which issues the trademark featuring the image of barred grain on the packaging of products suitable for those with celiac disease, and serves as the editor of publications that AIC creates for those with the disease and their families, such as Celiachia Notizie, Prontuario degli Alimenti, and Guida Alimentazione Fuori Casa.

AIC currently has more than 40,000 members and over 1,000 volunteers, who assist in pursuing AIC's mission on a daily basis. The aim of the AIC is to allow celiacs or those with dermatitis herpetiformis to live in a comfortably through the improvement of their lifestyle, supporting the acquisition of full awareness of their condition, and the widespread diffusion of proper knowledge as regards celiac disease and dermatitis herpetiformis in society.

Why create a booklet on celiac disease and dermatitis herpetiformis for physicians of general medicine and primary care paediatricians?

The booklet "CELIAC DISEASE IN CHILDREN AND ADULTS" is an informational and awareness initiative aimed at general practitioners and primary care paediatricians, who are generally the first line of identification for adults and children who have yet to receive the diagnosis of celiac disease. The main training and informational  objectives of the booklet for physicians of general medicine and primary care paediatricians are to promptly identify the symptoms of celiac disease (often non-classic and extra-intestinal), guide patients towards correct diagnosis (often dealing with specialists), manage diagnosed patients by monitoring their treatment (gluten-free diet) and health status through specific examinations to be performed on a periodic basis.
In Italy, approximately 400,000 people are not aware that they have celiac disease. AIC is committed to assisting currently undiagnosed cases of the disease.

The celiac iceberg: It is estimated that there are 600,000 Italians with celiac disease, which is 1% of the population of Italy. Undiagnosed celiac disease can lead to problems such as repeated spontaneous fractures in adults, repeated miscarriage, infertility, pregnancy disorders, iron deficiency or anaemia, in addition to more dramatic complications such as intestinal lymphoma. On average, it takes six years from the onset of symptoms to arrive at a diagnosis.

AIC's commitment to diagnosis: Reducing the diagnosis time and the number of undiagnosed patients with celiac disease: patients and physicians play a fundamental role in recognising celiac disease in its various forms.

What AIC does in practice:

  • creates awareness for physicians and informs patients with guidelines and informative material: Diagnosis protocol, Guide for Women & Celiac Disease, Celiac Disease Week www.settimanadellaceliachia.it
  • spreads medical and scientific knowledge with the National AIC Congress, the biggest event on celiac disease in Italy for physicians and researchers, held every year in November
  • it supports the high-level scientific research on celiac disease in Italy: Over five years, the Foundation for Celiac Disease has financed 20 research projects for a total amount of 2,267,500 euros with annual research calls for tender.

Diagnosis protocol and follow-up of celiac disease

An essential reference to the Booklet is the PROTOCOL FOR DIAGNOSIS AND THE FOLLOW-UP OF CELIAC DISEASE (published in the Italian Official Journal no. 191/2015), prepared by a panel of experts, which was requested by the Ministry of Health and directly involved several specialists of the AIC-FC Scientific Committee. The publication of the protocol in the Official Journal is an important step that was desired by the AIC in order to standardise the steps towards the diagnosis of disease throughout Italy. The protocol defines celiac disease in its various currently known forms, and contains flow charts for the proper diagnosis and monitoring of patients with celiac disease. It is a useful and indispensable tool not only for specialists, but also for physicians of general medicine and primary care paediatricians who initially see patients with potential celiac disease and monitor their health status. The current position of the Ministry of Health on gluten sensitivity (recently also called sensitivity to wheat) is also provided, which is shared by the majority of those in the international scientific community.