Actions to promote Actions to promote sustainable gluten free sustainable gluten free

dietdiet

““History and dreams”History and dreams”

MedicelMedicel

M Ben HarizM Ben Hariz

Istambul 2012Istambul 2012

• I am here with you not to make a Classical presentation but to tell you a story.

• The story of leila • she'll tell you by herself

• My name is Leila. • I am Tunisian • I am 12 years old

I live in Tozeur, a beautiful village near the desert

I have 2 brothers and 2 sisters. I am the third born of the family

• My father works as a gardener at a hotel in the cityHis salary is 400 DT (200 Euro) / month. He also

worked occasionally in the Picking dates • My mother doesn’t work• We live in an old house that my father inherited from

his family

• Between the ages of 2 and 5 years my mother took me several times to the basic clinic in the city because I had diarrhea treated by anti-diarrheal or antibiotics

• At the age of 6 years I went to school for my first yearThe school doctor thought I was "small" and pale.He diagnosed anemia and gave me iron for 3 months

• At the age of 8 my parents found that I was growing up not like my classmates.My uncle advised to consult a pediatrician in Sfax

• The pediatrician recommended my parents to consulte the University Pediatric Hospital of Tunis

• At the hospital of Tunis I was hospitalized for 3 weeks

• Hospitalization was not necessary but we did not have the means to return several times in consultation as proposed by the physician.

• At the hospital the nurse took a blood sample from my arm. It was painful

• Its result was achieved after one week

• After two days, I underwent an endoscopy without anesthesia. It was very unpleasant. I would never do it again!

• Intestinal biopsy result achieved after 10 days confirming my celiac disease

• A young doctor explained “very seriously” to me and my parents that it was an “allergy to flour of wheat and barley” and I no longer eat foods containing flour

• Before leaving the hospital, the dietician gave me a list of foods allowed and bannedI must say that I did not understand all, my parents either.

• The dietician advised my parents to buy "special meals" to make bread at home.

• Before returning to Tozeur, we went to a “special store” to buy the "special meal" of rice because the dietician told us that it exists only in large cities

• In the store, my father consulted the price. It was too expensive and he did not have enough money and he did not buy anything.

• At home for 2 months I have not eaten bread. And I ate often meals with rice morning and evening!!!

• Then my mother tried to make bread and cakes with rice milled at homeThe bread was bad and I ate constraint

• while my brothers ate what they wanted!!!It was very difficult!!!

• At school, when my mother was preparing my lunch with my "bad bread", I do not show it to my friends because they find it odd and mock me

• Sometimes I do not resist and eat some of their "good bread".

• Even the school teacher did not understand why my mother does not make me bread similar to that of other children.

• During recess I sometimes felt alone and I feel that the other girls do not want to play with me.

• During the month of Ramadan, I was not allowed to eat all the good things that my mother prepared for the whole family.The hardest thing is not to eat "bricks"I sometimes eat them secretly.

• My mother once surprised eating the bread of my brother, she growled and she cried during one day.

• She was feel guilty

• Now I am a little betterMy doctor says I have grown a little but I have to make more effort to better respect my gluten free diet

• More effort!!! I hate celiac disease!!

• At the beginning of my illness I sometimes dreamed of being able to eat like my brothers

• Now I know it is not possible and I have other dreams for me and other patients

Dream 1Dream 1I dream that the doctor in my village is more

attentive to the signs of celiac disease and not make diagnosis as late as in my case

Solution 1Solution 1

Wider information of primary care physicians and medical school data on possible several clinical forms of celiac disease.

Dream 2Dream 2I dream that for other patients in my village

diagnosis is made quickly and not far from my village

Solution 2Solution 2Better “decentralization” of biological diagnosisUse of rapid tests!!Better availability of endoscopy (at least one in

each governorate)

Dream 3Dream 3I dream of more available well-trained doctor and a

dietician working in my village. I dream that they take enough time to explain gluten free diet and find solutions that diversify my food choices rather than speak me only of prohibitions.

Solution 3Solution 3Training of a large number of dieticians about gluten free diet

Association's role in this training+++

Dream 4Dream 4I dream that my parents have an opportunity to buy not very expensive GFD

Especially for at least one good flour to prepare acceptable food at home.

Solution 4Solution 4• Encourage local producers (Felder (tunisia)=1/2 CHAAR Price)• Implemente in several cities millers structures with professional machinery to

make only gluten-free flours for CD patientsAssociation's role in this development

• Cost of one structure (machinery + local location):6000 euro• Self-management for the cost of local rent, electricity and wages

Dream 5Dream 5I dream that my parents are trained to

prepare my favorite meals

Solution 5Solution 5• Practical Workshops that the association

organize in several cities These workshops are organized by association members with exceptional experience in preparing the most difficult tunisian meals

• cookbook of local cuisine ...

Dream 6Dream 6I dream that the state and insurance companies accept

reimbursement at least a part of the cost of my diet

Solution 6aSolution 6aThe association is currently discussing with the authoritiesNeed to change the laws because the national insurance company does not currently

recognize CD as long-term illness and there are no current laws in the possibility for reimbursement of food.

Solution 6bSolution 6bCurrently the association is trying to help the neediest families

In 2011 we helped 400 families on a monthly basisBut we need to regularly renew our budgetUsing the local product and giving families basic products (flour / pasta) we can help about 500 families with a budget of 120000 euro / yr

Dream 7Dream 7I dream of counseling to better accept my illness

I dream that in my school my friends and my school teacher does not find me different from others and they accept me as I am

Solution 7Solution 7Information campaign in media (show newspapers,

television ...)Information campaign for the general public during the celebration of World Day of celiac diseaseThe association must make more effort to contact school officials ...

I thank you for listening to my story and thank you for trying to help me to accomplish my dreams

See you in Tozeur