‘National Pictures of Celiac Disease ‘ GREECE Roma Eleftheria Professor of Paediatric Gastroenterology University of Athens Naples, September 2010

GREECE, DEMOGRAPHIC DATA Population Total : Children under 14 years: Possible incidence of coeliac disease 1:100 paediatric population (pilot sudy Helspghan) Centers for diagnosis by paediatric gastroenterologists : 12 (2 private) Number of patients diagnosed in childhood with C D since 1978: About 860 ( only 20 diagnosed in private hospitals) Estimated children with CD → Number of adults with diagnosed CD : unknown (about 1500?) Estimated adults with CD →

DIAGNOSIS Patients: Asymptomatic children Symptomatic children Doctors (Paed. GI, paediatricians, endocrinologists, haematologists) Diagnostic methods T-TG, EMA, (AGA occasionally) Biopsy HLA typing (especially in atypical cases ) Cost T-TG 12, EMA 6, AGA12, IgA 12 euros Nat. Hosp (36 euros each in private clinics) Biopsy +endoscopy: 88 euros Nat. Hosp. (about 1200 private clinics) HLA typing (about 200 euros) Total cost for diagnosis of CD 88 euros in national hospitals (included HLA and serology)!!!! 1300 euros in private clinics without HLA

GLUTEN FREE PRODUCTS The whole cost is covered by the Government or insurances, obligatory prescribed by the specialist in National Hospitals ( list with all products completed by patients) There are 5 companies with GF products: Glutafin Schar Molino Difero Harisin Kaplanides ( only flour) Cost per Kg flour _9-14 EUROS, pasta 9-13 EUROS, bread EUROS, biscuits per packet 4 EUROS

GREEK COELIAC SOCIETY Established in 1985 (council: patients, parents of CD, paed. GI, adult GI ) Members (children and adults): about 1200 Activities Annual meeting ( participants) Annual participation of council members to AOECDS meeting Annually updated pamphlet with local and manufactured GF products Site for information Forum (chat between members) Support information by members Youth meetings (2-3/year, participants years old) Summer camp

PROBLEMS No available dietician for information on e-site or telephone Inadequate number of dieticians in hospitals No available GF products in schools No available GF in restaurants Absence of knowledge about CD in food producers (restaurants etc) Local food producers do not analyze products for possible presence of gluten, but for legal reasons they declare “it may contain gluten”

INCIDENCE OF CD IN GREECE Unknown No national registry No collaborative studies Possible for paediatric GI Difficult for adults ( some diagnosed from GI of private practice)

Greek data (284 children) First Dept. Paediatr. Athens University Roma et al. Digestion 2009;80:185–191

AGE DISTRIBUTION OVER THE 30 YEAR STUDY Roma et al. Digestion 2009;80:185–191

CHANGE OF CLINICAL PRESENTATION OVER THE STUDY PERIOD Roma et al. Digestion 2009;80:185–191

Characteristics of patients with coeliac disease Total (N=284) n (%) (N=72) n (%) (N=71) n (%) (N=141) n (%)P value Age at diagnosis (mo, mean  SD) 25.5    49.8 < Delay to diagnosis (mo, mean  SD)13.3    Introduction of gluten in diet (mo, mean  SD)5.1    1.1 < Introduction of solid food in diet(mo, mean  SD) 4.7    1.8 < 0.001

COELIAC DISEASE IN GREEK CHILDREN Changing pattern in the presentation of paediatric CD Is diagnosed more frequently in older children Often presents with atypical symptoms Increasingly detected through serological screening

Dietary compliance and life style of children with coeliac disease in Greece Compliance to GFD was reported by 58% The acceptance of the GFD was reported as good in 65%, Avoidance of travelling and restaurants was stated by 17% and 46% of families, respectively. Reasons for noncompliance were: poor palatability (32%), dining outside home (17%) poor availability of products (11%) asymptomatic disease diagnosed by screening (11%) Most families experienced difficulties detecting gluten from the food label Roma et al. J Hum Nutr Diet, : 176–182

Dietary compliance and life style of children with coeliac disease in Greece Children with CD have low compliance with the GFD Proposed factors for improvement of quality of life were: Better education about the disease Better labelling of gluten-containing ingredients (76%) More GF foods in supermarkets (58%) and restaurants (42%). Roma et al. J Hum Nutr Diet, : 176–182

COELIAC DISEASE IN GREECE: CONCLUSION Incidence: unknown Under-diagnosed National cover of the cost of GF products Need for: collaboration of health professionals registry of patients more dieticians Need for education about the disease of: Patients Food producers and restaurants Schools and other services Health care professionals with regard to the detection and management of CD

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