HEALTH EDUCATION FOR
YOUNG PEOPLE WITH COELIAC DISEASE
PRELIMINARY
RESULTS OF A TUNESIAN-DUTCH NON-GOVERNMENTAL COLLABORATION PROGRAM
Asseldonk, G.A.E.G. van
RD (1)
Straaten, P.J.C. van der MD, Phd (2);
Aissaoui, L. MD (3)
Department of Dietetics and Nutrition,
Leiden University Medical Centre, the
Netherlands
Department of Pediatrics, Reinier de Graaf
Hospital, Delft, the Netherlands
Department of Gastroenterology Hôpital
Régional du Kef, Tunisia
Introduction:
Coelac
disease (CD) affects the health and social functioning of young people in
developing countries (such as Tunesia) more than in West-European countries
(as the Netherlands). In october 1996 an inventarisational study in 25
children in the regional hospital of El Kef (Tunesia) showed relative older
patients at diagnosis (mean 7.5 years; range 1.7-16.9), a high frequency of
elevated anti-gliadine- (AGA) and anti-endomysium-antibodies (EMA) and
severe growth retardation dispite therapy. Compliance to the glutenfree
diet (GFD) about 60% and still 60% elevated EMA and 40% elevated AGA in the
diet-compliant group.
Objective: To improve the
health-situation of young people with CD in a 5-year program.
Method: Starting in 1997 a
“coeliac disease week” has been organised each year in autumn. The coeliac
patients are invited by the Department of Gastroenterology of the Hôpital
Régional du Kef and the Direction Régional du Santé Publique. During their
1-day visit to the hospital nutritional and anthropometric examinations are
carried out and blood samples ar taken for serological measurements.
Groupsessions ar held with an educational program consisting of theoretical
and practical information about coeliac disease and the importace and
possibilities of a GFD, supported with practical examples and written
information.
Results: In October 1999 55
patients (37♀and 18♂) visited the the “coeliac disease week”in El Kef. 29
patients were between 0-12 years of age, 19 patients were between 12-21
years, 7 patients were between 21-50 years. In 45 patients the diagnosis
was confirmed by small bowel biopsy earlier. In 19/45 patients (42%) we
found high titers of AGA as well as EMA; 9/45 (20%) had high titers of AGA
and 2/45 (4%) had high titers of EMA. In 14/45 patients (35%) we found no
coeliac antibodies. 16/45 Patients (14♀and 2♂) with high titers of AGA and
EMA were younger than 21 years of age. 10/14 ♀ presented a severe
growth-retardation (greater than –2.5 SDS). In 34 patients the biopsy took
place more than 1 year ago. 25/34 Patients (74%) told they followed a
strict glutenfree diet (=R: responder); 9/34 (26%) did not -consistently-
follow the diet (=NR:non-responder). In the R-group 7 patients (27%) had
high titers of AGA and EMA; 7 patients (27%) had high titers of AGA and 1
patient (5%) had high titers of EMA. In 10 patients (40%) we found no
coeliac antibodies. In the NR-group 4 patients (45%) had high titers of AGA
and EMA; 5 patients (55%) had no such antibodies.
Conclusions
and discussion: In the past 3 years the diagnosis CD has been posed more
frequently in the Gouvernorat of El Kef. There is better knowledge of the
glutenfree diet (74% in ’99; 60% in ’96), but compliance to the diet is
still a big problem (high % of non-compliance, % elevated titers of
antibodies dispite therapy) as well as the precarious social-economic
circumstances of several families and the limited availability of
glutenfree alimentation. The moderate diet-compliance leads to
growth-retardation in young people, and on the long run complications like
gastrointestinal problems, anaemia, infertility, osteoporoses and
malignities cannot be excluded.
Acknowledgments: Raouani, A.,
researchnurse Direction Régional De Santé Publique, EL Kef, Tunesia
Herbrink, P. PhD, medical immunologist; Pekelharing, J.M. PhD, clinical
biochemist, Reinier de GraafGasthuis, Delft, the Netherlands
Boersma, B. MD, PhD; Csizmadia, C. MD;
Mearin, M.L. MD PhD
Department of pediatrics, Leiden
University Medical Centre, the Netherlands