PILOT PROJECT NEWS
Mentoring service for newly diagnosed patients (LP MOM)
Our pilot project aimed to develop a new innovative social service, that will be carried on by CD
societies. The main goal was to implement mentoring service for newly diagnosed CD patients, with
all the support needed, to ensure patients a comprehensive new service in a first year after being
diagnosed with lifelong CD. Experienced CD patients – mentors will help the new diagnosed patients
to better organize the very demanding gluten-free life and to meet everyday challenges of CD.
Simulator testing to improve edoscopist practice in field of CD (PP2 UKC MB)
Individual and group courses for trainees of different levels of expertise were organised using
endoscopy simulators. Participants performed initial upper endoscopies under supervision, and
finally completed the course with autonomous performance. All participants were provided a short,
animated patient friendly video with basic principles of the procedure, which will help in decreasing
the anxiety of patients undergoing the procedure and will improve the quality of the healthcare
service.
Improvement of early diagnostics, testing method 'IgA t-Tg deposits in tissue sample' (PP2 UKC MB)
Real patient samples were stored in liquid nitrogen containers. Thereafter they were consecutively
analysed for the presence of coeliac disease specific IgA t-TG deposits with the help of partner PP7 -
IRCCS Burlo Garofolo, where one of the members of PP2 UKC Maribor learned the method.
Introduction of novel technology improved the quality of coeliac disease diagnosis, by enabling the
capability to detect early changes in patients where classical diagnostic methods were insufficient.
Improvement of diagnostics, with testing 3 methods to improve CD practice (PP4 KBC Rijeka)
To conclude, since in modern pediatric approach noninvasiveness is the goal, we tried to find
whether certain biomarkers in the stool can be useful in detection and follow up of CD patients.
Nowadays we have only biomarkers in the blood for that purpose. Our pilot project hasn't found two
of three stool biomarkers to be effective; only one, stool gluten fragments could be useful in follow
up of CD patients, but further studies are needed.
Detecting and managing CD patient within a 'cohort of super allergic population' (PP5 Units)
This pilot aimed to confirm that a specific clinical condition - super allergic patient represent a risk
group for developing CD, which at the end calls for screening in order to prevent possible
complications of untreated CD. Pilot activities confirmed that “super allergics” have a higher risk of
presenting CD. Furthermore, we have established a stakeholder groups on this specific field that will
allow the diffusion of the knowledge and at the end better quality of life of allergic/CD patients.
Testing for celiac disease antibodies in school children (PP6-UOCPGŽ Rijeka).
Association for celiac patients from Rijeka (Primorje Gorski Kotar County) performed testing of 1500
school children (both genders, 6-7 years old) on CD. Testing was performed in partnership with
University Hospital Center of Rijeka by a relatively non-invasive method of taking blood drops from a
finger. The three main objectives of our study were: to detect CD, to prevent disease complications,
to record the prevalence of CD in our country as well as to suggest CD management changes.
Improvement of diagnostic of atypical CD patients (PP7 ICCC).
Our project aimed at the diagnostic improvement of celiac disease (CD) in the wide clinical spectrum
of CD and in particular in those forms in which the current diagnostic criteria were not satisfied. We
demonstrated that the detection of intestinal anti-transglutaminase antibodies is essential for the
CD-diagnosis even in absence of intestinal lesions. These mucosal auto-antibodies represents an
innovative diagnostic marker. This immunological procedure is now a routine diagnostic in NEItaly.
Implementation and testing of new service to improve transition from paediatric to adult health
care
To overcome this challenge of CD in adolescents and transition into adult medicine, we conducted a
structured transition programme, with a workshop tailored to the needs of adolescents but also in
parallel a workshop (WS) for their parents in order to support them as well in this difficult phase of
puberty. The WS comprised interactive sessions related to gluten-free diet, medical facts and
psychological issues. In addition, we developed an updated Celiac Passport together with our CD
Society.
'Evaluation and follow up of family members' (PP10 HP).
Pilot action included 8 INFO workshops for risk persons in the families of CD patients. We screened
1486 relatives by transglutaminase and endomysial antibody tests of whom 235 were found affected.
A fluorescent method was developed, but this positivity alone was not sufficient to predict CD, as risk
alleles were overrepresented also among healthy relatives. Follow-up study of young children
indicated that screening should be repeated at 9 years of age as new cases may still develop until
then.
Testing of real-life environment use of gluten free-offer in restaurants (PP9 HCS).
The only and effective treatment of CD is a lifelong strict gluten-free diet. Patients are worried about
the consequences of the unintended diet faults, so they are afraid to go eating out of their home. We
trained restaurants staff (and 22 volunteers) to prepare a safe gluten-free meal, organized 2
conferences, prepared a Booklet for restaurants in Hungarian and English. For CD patients the safe
‘gluten-free restaurant network’ will increase the quality of life and decrease their social burden.
