Exchange inSpain

MedicalCuriosity-news

SummerCampNorway 2012

Where to Eat

I tell my story

Advantages ofbeing coeliac

News, news,news..!

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E d i t o r i a lHi everyone!

Welcome to the early pages of the first CYE bulletin of the year 201 3. In this one, among else you wil l be toldmany different news, unforgettable experiences about gluten-free l ife, and hilarious facts about why it is so great tobe coeliac. The editors of this fourth issue are: Manuel Engelsthal (Editor in Chief, Austria), El ina Rouru (layout,

Finland) andChristia Simil l idou (Co-editor, Cyprus).

The 3rd issue was told to be probably the last one, but luckily, we´re back to the business and continuing the goodwork that started. The editorial board wants to thank everyone who have been part of this bul letin: with photos,

texts, and proofreading. Because you indeed make this bul letin be what it is.

This bul letin has a new editorial board, and probably speaking out the thoughts of the rest of the board as well ,we´re simply, greatly devoted to passing on info and anything corresponding the issue that is after al l quite a bigdeal in our l ife, and also without which I couldn´t have had those magnificent experiences there´ve been; campsand other events. . I t´s you people, and the attitude for this whole “problem”(as some people call it). Actual ly, as acontroversy for that word, I think that in many situations, coeliac people have a certain part of humour available

that other people just don´t get.

Comic part:"I ´d l ike to have some French fries. . and if need to mention, preferably gluten-free"

-Ok. . hmm do your fries need to be Total ly gluten-free or is it okay if they´re just partly?"Wha. . look, miss, they either are or are Not. And yes, Total ly gluten-free please"

Wil l ing to join beat the wheat? Go send your magnificent articles and other material to

editors.beat. the.wheat@googlemail .com

Elina Rouru

N e w s P i l l sYouthCommittee

Meetings, Maps, and Muffins

We are walking through London, to Covent Garden, to meet a bunch of young British Coeliacs, wondering what exactly to presentabout CYE and how to do it. That’s part of our Youth Committee meeting in London – “Finding Missing Countries”. Then it goes allnatural ly: in a small group we present the CYE activities, our meetings, the conference, the annual project, the summer camp,and the wonderful network CYE offers. Our engagement is fruitful ; the youngsters are extremely interested both in CYE and informing a national youth group in the UK. Volunteers Manager Miranda Brooks wil l coordinate the new activities and in themonths to come a city break is to be planned. We are already looking forward to welcoming a UK delegate at our next conferencein Amsterdam.

Apart from the three-hour lunch-meeting we already started the preparation of this year’s CYE conference in Amsterdam(September 5th to 8th) for which the delegates can register from Mid-March onwards. Our main objectives: offer you aninteresting program and keep the costs as low as possible.

(Continues on the next page. . )

Our annual project “Gluten-free Maps Europe” is progressing and growing. We are planning on re-launching ourwebsite so as to be able to integrate a forum system and the maps in to it, while already collecting data. Incol laboration with AOECS we wil l be able to use the data from their project “Eating out” once they are available.

Mirjam Eiswirth, Germany

Your CYE Youth Committee

Mirjam Eiswirth, Lana Pavkov, and Giacomo Fil ippo Porzio

Also, we prepared anupdate fi le for theCountry Overview – adocument summarizingthe situation for youngcoeliacs and youthgroups in the differentEuropean countries.Right now thedelegates are fi l l ing inthe information abouttheir countries and bythe next issue we canmake it available for al lof you.

I f you fol low us onfacebook, you wil l haveseen that we have CYEvideos online,presenting the annualproject and us as theYouth Committee. Takea look at the YouthCommittee presentationherehttp: //www.youtube.com/watch?v=YO6TzQc-NWI and at thepresentation of theannual project here:http: //www.youtube.com/watch?v=8gkvMf2DxcY.

Since the 1st of January the German youth board has itsown fanpage at facebook. We share interesting news,funny pictures, delicious recipes and much more. If youwant to have a look, this is our link:www.facebook.com/JugendausschussDZG

There’s a big event taking place in Germany this year: TheWorld Coeliac Day is on 11th May in Hannover and isorganized by the DZG, the German coeliac organization.At first, everyone meets at grand plaza near the centralstation and walks together as a procession to the place,where all the companies have their booths to present oldand new products. Of course, the German youth board isthere, too. We have our own booth with some activitiessuch as our wheel of Fortune. This year, we came up withsomething special: We asked people to send in a video oraudio clip of two to three minutes, the topic must dealwith coeliac. The winning clip is going to be presented atthe great stage at some time of the day.For further information you can contact me:Hannah.dressen@dzg­online.de

Hannah Dressen, Germany

News from Spanish youth society (FACE Joven)

On November 17, 2012 was held the first coeliac youth dayin the Spanish Capital city, Madrid.

That day guests attended as well as numerous specialistsbecause the goal of the organization was that youngpeople learn more about coeliac disease.So they talked with physicians, dietitians, nutritionists,psychologists and others telling their personal experiencewith coeliac disease. There was a presentation aboutyoung coeliacs going abroad, another about food security,representatives from gluten free food companies spokeabout the ease of on­line shopping. Our nutritionist told usabout the delicate gluten free coexistence with others. Themedical paper explained the importance of making thecorrect diet choices. And a great speech was delivered bya psychologist who taught us how to deal with coeliacdisease in adolescence and youth.

We enjoyed a lot of gluten free food at lunch that wasoffered by various sponsors, and we also got to taste lots ofgluten free pies and cakes which were great!

The day ended with a dinner for all attendees at a pizzeria.There we could enjoy delicious pizzas and at the end theyraffled a dinner at the restaurant for two people.Everyone agreed that this day was a success for theSpanish youth society and we hope to repeat next year.

Juan Carlos Garcia, Spain

CCYYEE SSUUMM MMEERR CCAAMM PP 22001122NNOORR WWAAYYSummer Camp 201 2 in Norway - Sweet without wheat!I signed up for the summer camp in Norway as I wanted to experience the gluten-free paradise myself. The camp was located in Elverum,which is nearly 1 00 km from Oslo. The first few days we met every morning in the old school of the town to start the day with singing "Whata wonderful world," accompanied by a piano played by our lovely but tough Norwegian camp instructors.On our first day the whole group rode to Galdhøpiggen in order to cl imb the highest mountain of Norway. This meant a long exhaustingwalk of 3 hours including passing a glacier. The effort was total ly worth it as we were rewarded with a splendid view of Norway's highestmountain ranges. At the end of this long day all the participants were so exhausted that they all fel l asleep in the bus.On the second day, there was the cooking activity in a public school building in Oslo. Camil la and Synne, the organisers, gave instructionson how to cook a traditional Norwegian dish – I don’t need to tel l you the meal was very delicious. In the afternoon Geir, another organisersuggested we go swimming into the lake at Elverum. As Norwegian summers are not that hot, the water was a bit cold and not everybodywent into the water. I however made it, which was total ly worth it.One of the many highl ights of a CYE summer camp is always the "International Day" during which every country presents itself. There havebeen some really good presentations l ike the ones from Spain, Czech Republic, Netherlands and of course Luxemburg.The next morning, we left for the river Sjoa for a rafting trip. After being instructed what to do, the participants were divided into groups of 5.Our boat instructor was Lenke who had to have quite a lot of patience, as for most of us it was the first experience of this kind. The ride wasful l of pleasure and I was so happy that I have not been too cowardly and gave it up beforehand.The last remaining days of the camp we spend in Oslo – a marvelous city with a lot of attractions and many gluten free burgers. We visitedthe famous ski-jump in Oslo- the Holmenkollen, the palace of the royal Norwegian family and had also a lot of time to discover Oslo by ourown in which I went to the Museum to see the famous Cry by Edvard Munch.In the end I want to once again thank all the organisers of this joyful week – I , and I guess all the other participants enjoyed every minute ofthe camp.

Pascal Ewert, Luxembourg

Summer (& Winter ;) )

in Norway: Elverum, Oslo, Galhöpiggen,Holmenkollen. . 2012

A semester in Spain.

In the summer of 201 2, I decided I would l ike to spend a semester

abroad. As I had always wanted to learn spanish my choice fel l on

the awesome 200.000-habitant city of Almería, which is located in

Andalusia on the southern coast of Spain.

When I final ly set off in September, having organised all the

paperwork and had a spanish course, for once the food wasn't the

thing I feared the most heading towards a journey.

T r a v e l T a l eExchange in Spain

I l ive, together with two spanish roommates, right next to the beach

promenade in a shared flat on the 7th floor which provides me a terrific

view over the sea and the city. As there sti l l wasn't anyone there, nor

university had begun yet I spent my first week discovering the city on my

own, doing some sightseeing, enjoying the beach and looking for a city

map as well as a supermarket where I could buy bread and pasta. In the

end I found all of those things, and when university began I also found

something much more important: friends.

View from the university

Actually, knowing I had a flat with

kitchen and everyone on the internet

tel l ing me that finding gluten free

food in Spain is even easier than in

Germany made me feel pretty calm

about that topic, so that I could

concentrate on everything else.

Obviously, I didn't concentrate

enough, which made me lose my

passport at Madrid airport and so

supplied me with an adventure-fi l led

night at the police office during my

first hours in the new country. But

with a l ittle luck, I final ly arrived the

next day in the hot and sunny

Almería.

Already in the first or second week of

the lecture period a group of

classmates, who were really open and

nice, invited me in their circle of friends

in an outstandingly adorable way that I

consider typical for that country. Those

people had opened the window of l iving

a real spanish l ife for half a year

instead of l iving the typical exchange-

student-l ife to me, and furthermore

became pretty quickly a really

important part of my life.

To the gluten free topic they also got used rather quickly. Tel l ing anyone in Spain that you can't eat gluten

normally leads to one pre-assigned response: "Oh. . so you're celiac?", an experience I have never had in any

other country, especial ly not at home, before. This awareness of celiac disease existing doesn't necessari ly

mean people know what gluten is, but together with the really advanced food labell ing policy (nearly

everything that's gluten-free is labelled,) it makes it much easier to communicate with people, and to do the

shopping without spending hours reading complicated ingredient l ists. You tel l people once that you're celiac,

and at every party there wil l be stuff you can eat. They'l l just examine every snack-bag searching for the

gluten-free label to find out if you can have it or not. Besides, at parties there is almost always "spanish torti l la"

which is gluten free.

Another really useful thing in this country is the possibi l ity to order a gluten free burger in McDonalds and

finding a list label led "products suitable for celiacs" in every chain store. Especial ly while travell ing, this turns

out to be extremely beneficial and also just real ly cool (and delicious.) I f not eating at home, which is the

normal thing here (simply in order to save money), spanish people go out to eat tapas. Especial ly in this

region, eating tapas completely replaces going to one single restaurant and ordering one single dish. In every

bar in Almería with every beer or Tinto de verano (delicious red wine with lemonade) a "tapa" is automatical ly

included. Tapas can be basical ly everything, they're just small dishes. Normally, there are always a few gluten

free tapas on the menu, as for example cheese with almonds, ham, baked potato, salad, or (if you ask the

cook) gri l led fish, meat or seafood.

Tinto de verano con queso con

almendras

(„summer wine“ with cheese and

almonds)

To try new and more "exotic" stuff

we formed a little "cooking-team"

with two friends from Germany

and Italy with whom I regularly

met to buy funny fishes and

seafood at the central market and

prepare it at home, or cook typical

spanish (and sometimes ital ian)

meals.

Birthday party Cooking

And one time, I met someone who I had found in the facebook celiac group of Almería, to learn

the perfect recipe for Paella - also a good way to try new stuff while meeting new people at the

same time.

As you can see, the celiac disease doesn't real ly cause me many problems here, I even

consider it easier than at home.

All in al l , this half year was ful l of experiences and a really good time. I f I hadn't done this I

probably would never have scuba-dived, walked through the only european dry desert, got to

know the spanish carnival, assisted in an aid program for victims of a natural catastrophe, hiked

through several andalusian natural parks, done a cave expedition, and whatever else awaits me

in the fol lowing months. I travelled to many places all over the country, met a lot of nice people,

tried quite a few new things, missed out on 5 rainy months in Germany and, last but not least,

learned a new language! I actual ly l ike it so much that I 'm sti l l here and wil l stay a semester

longer than original ly planned. I recommend everyone - whether they're coeliac or not - to do

something l ike that at least once in their l ives.

Anna Schimpf, Germany

Often when you have something wrong with you that makes you different to everyone else, it is difficult to see the upside of yourdiagnosis. I ’m sure many of us have felt miserable and upset about being a coeliac, and wondered why on earth they have to dealwith having to l ive with such an annoying problem!Whenever I start to feel l ike this, I look at what a big difference my diagnosis has made to my life.

Looking back I think I first started showing symptoms at 1 7. I ’d just finished a years of studying for the biggest exams of my life sofar, I was ice skating in both national and international competitions and I ’d started looking round universities ready to move awayfrom home. Suddenly I started sleeping more and more, unti l I got to the stage where I was barely able to make it through a schoolday. My life l iteral ly became eating, sleeping and school. From easter of my final school year, I didn’t complete a ful l week of school,and because of that, my final grades weren’t nearly what I had expected.However, I managed to achieve high enough grades to make it to university, and I set off ready to make a fresh start, blaming thelast year’s problems on stress. However, after 6 months of my nursing degree I was forced to drop out. I had been horribly i l l afterevery injection I had, and working 40 hours per week on placement had been too much for my body, and I was too exhausted tomake it to placement. After phoning my Mum in the morning before placement, sobbing because I was so tired I couldn’t get out ofbed, I had to come home. Sti l l , we blamed it on stress, and the plan was to drop out of university, then start again the next year.

I moved back home and got a job working a couple of evenings a week. However, when my symptoms sti l l persisted when all I didwas work 1 5 hours per week, we went to the doctors, begging them to find out what was wrong with me. When he suggested I had ablood test for coeliac disease, so many factors began to add up- my iron deficiency, my rubbish immune system, and why I felt sobloated all the time.

For me, being diagnosed has given me a whole new chance at l ife. Had it just been stress that had made me so il l , i t would havebeen so much of a struggle to have made life better. Being diagnosed has completely turned my life around, and in September Istarted back at university, studying Law. When I hear stories of people ‘cheating’ on their gluten free diet, or when I remember howterrible I felt before, I feel horrible- my diagnosis has improved my quality of l ife so much, and while it sometimes is a struggle, it’scompletely worth it.

Rebecca Vucak, UK

E a t i n g o u t- H e l s i n k i

Usually a gluten free meal is marked in the menu with a capital letter G

below the description. I f, however, the Gs are missing from a menu, it

doesn't necessari ly mean they don't have anything for you to eat. In that

case, you just have to go and ask the waitress!

Do you feel l ike having gluten free pizza or pasta? In that case, I would

recommend Rosso or Dennis. In Rosso they also serve gluten free

bread with any meal. Gluten free pizza is also available in Kotipizza.

Gluten free hamburgers can also be found in Amaril lo, Chico's and

McDonalds.

Huvilan kahvila is cafe that prepares everything gluten free. Bulevardin

Kahvilasalonki and Fazer cafe are also nice cafes with plenty of gluten

free

dishes to choose from.

There is a great website to find reviews of any restaurant in Helsinki.

I t's cal led www.eat.fi

Enjoy gluten free Helsinki!

Ninni Salo, Finland

Where to eat in Helsinki?

_

Are you looking for delicious gluten free food or pastries in Helsinki? Here are a couple of tips.

_

In Helsinki it's quite easy to find gluten free food. I was born in Helsinki and I have_spent al l of my life here. I always love to try new

restaurants and the gluten free diet has never been a big_problem for me. People know here quite well what is coeliac disease so

eating out isn’t frustrating.

W h e r e t o e a t i n.. V i e n n a

Where to eat in Vienna

Are you currently planning a city trip to Vienna, but being afraid of starving to death after having googled the typicalAustrian cuisine? It is true we love to stuff our dishes with a lot of gluten, but here comes the good news – over theyears Vienna has developed a wide choice of gluten free restaurants. In order to give you a good start on your trip herecomes a suggestion for a gluten free day in Vienna.

You best start your day in Vienna with some power sightseeing – go and check out the Schönbrunn Palaces fol lowedby a walk through the parks of the Prater, which are especial ly recommended during spring time. When you final ly startto feel l ike you’re starving, you are ready to hit the Gasthof Nestroy which wil l serve you a traditional Austrian lunch –just ask for the gluten free menu. Among coeliacs the restaurant is well known for their Viennese Schnitzels, but do notleave that place before you’ve had a Palatschinke as desert.

The next best thing to do is chil l out at one of the various street cafes on the riverside of the blue Danube. I f you feel fitagain you can start your tour around the old town of Vienna – visiting the Stephans Dom, discovering the manybuildings designed by Hundertwasser, and do not forget to drop by the Hofburg in order to see one of the manyLipizzaner shows.

I f you sti l l fol low that plan you should be by now sick of sightseeing and either ready to go to bed or eager for a partyevening. In any case you should eat dinner at the ¡mas! – a Mexican restaurant which offers a wide choice of glutenfree Enchiladas and Tacos. The favorite pick of the local coeliac youth group are by the way the Tacos de Pollo. But the¡mas! is not only a restaurant but also includes a rich cocktai l bar. So if you are there at the right time you can benefitfrom the happy hour – and the rest of the night is yours.

Hope you enjoy your trip ; )

Manuel Engelsthal, Austria

Advantages of being coeliac

Extra! Extra! Wheat al l about it!

The plus-side of being a celiac

Well , in my honest opinion, being a celiac isn’t at al l that bad. In fact, there are multiple advantages, at least I see them asadvantages as a twenty-something single girl . In case you don’t see them, let me point some of them out for you:

• On first dates, if you go to a restaurant, you immediatly have something to talk about, because the menu is one bigboobytrap and you’l l need a spykit to make a glutenfree order, so you’l l instantly have something to talk about! No moreawkward silence! Of course, those silent moments wil l be fi l led up with your medical history and an awkward conversationabout bowel movements and the firmity of your Q But do you really want that si lence? I don’t think so!

• A second upside to the first one is that one might feel l ike (s)he has to tel l something strange/weird/embarissing aboutthemself. This way, you’l l be able to decide if you want a second date (because: who in hell would want to date a diabetic,or, God forbid, a lactose-intolerant one). Better to save time and ingore the sh*t out of them after the date.

QIf you’re sti l l reading, you are either agreeing with me, or you see the humour in al l of it. Or both. Good for you!

• An advantage that is probably more for the female readers: You’re already on a diet! Al l the time! 24/7! Reasonenough for me to never, EVER, go on another diet. No one does 2 diets at the same time, that’d be like putting on twocondoms at the same time: unnecessary and everyone would think you’re even more weird. So no.

• You always have an excuse for not eating things you don’t real ly l ike, which for me, a very picky person when it’scomes to eating, is a very big advantage. The “Sorry, I can’t eat that, I ’m a celiac” wil l not only grant you the pleasure ofskipping that thing they call ‘food’, but also might drive them to guilt and they’l l l make you something you do like(chocolate! French Fries! More chocolate!).

• You’re special. Like Everyone else. Ok, I admit that might not sound like something you’d l ike, but actual ly: You do!

Think about it: we all refer to people (and hopeful ly you’l l recognize this, or I ’ l l look l ike a total b*tch) with somethingspecific about them: physical, characteristic, Q anything. When you’re talking to people about someone you or the otherperson don’t real ly know, you say things l ike: ‘you know, that short chick’ or ‘the one with the greasy hair that day’ or ‘thatguy we thought was a girl ’ or Q I ’m sure you’l l have more of those. Would you rather not be known as ‘that cel iac’ than QI ’m sure you, as a very self-aware person, can find some other names for yourself. In my case, the thing that comes tomind is: ‘that four-eyed girl ’ (because of my glasses), ‘that giant/bigfoot/longlegged freak/giraffe’ (I ’m 1 m82 and a girl). Andthose are the friendly ones.

To sum up: no, I don’t mind being a celiac. And you shouldn’t be either.We are freaking faboulous!

Lieze Steensels, Belgium

Medical curiosityDID YOU KNOW THATQ WE ARE MORE BACTERIAL THAN HUMAN?

Whether lounging on the skin, on mucous membranes or localized hidden in the crevice of the intestinal tract, bacteria are certainly the most numerous

tenants of our bodies.

An example?

The adult human gut microbiome is a highly dense microbial ecosystem, largely outnumbering our own eukaryotic human body cells. Indeed, it consists of

around 1 01 4 bacterial cel ls- at least ten times more than our human cells, and up to an estimated 1 000 different bacterial species! In addition, these

bacterial cel ls have a considerable amount of genetic information, a hundred times higher than to the human genome! Who would ever have thought it!

But let’s go to know them betterQ

Firmicutes and Bacteroidetes are the two most predominant bacterial phyla inhabitants in the intestinal tract. Now you may be wondering (or not?) when

these microbial communities colonize the intestinal tractQ You should know that the human gut is steri le at birth, but colonization with numerous bacterial

species starts immediately after birth, thus generating a resident microbiota characterised by unique bacterial profi les and high interindividual and

environmental variation. Indeed, the gut microbiota is immensely diverse, varies between individuals and can fluctuate over time, especial ly during disease

and early development. In this regard, it has been shown that the gut microbiota composition of spouses, who were living in the same environment and had

similar eating habits, showed the least degree of species similarity, while sibl ings showed increased similarity in species make-up. Moreover, interestingly,

the gut microbiota profi les of identical twins show a high degree of similarity, but are yet distinct. These findings highl ight that genetic factors play an

important role in gut microbiota development, although environment also drives species acquisition.

But why so much attention to these species from the research community? This complex human-bacterial interplay provides important metabolic functions

to the host. Moreover, discovering the factors that underl ie changes in the composition and function of the gut microbiota wil l help in better understanding

why coeliac disease (and many other diseases) occur, and in developing alternative therapies. This goal is real ly formidable, isn’t it?

Donatel la Iorfida (MD), Francesco Valitutti (MD).

Pediatric Gastroenterology and Liver Unit

Umberto I University Hospital, Rome

Sapienza University of Rome

Director: Prof. Salvatore Cucchiara

www.querfood.de

Board BoxMirjam Eiswirth

General CoordinatorGermany

Editors Box

Thanks to: Christine Cotter and Rebecca Vucak for proofreadingAsbjørn Oddane Gundersen, pictures page 2Michaela Edmunds, drawings pages 4, 6, 1 5 and 1 6Michaela´s bloghttp: //l iteral ly-is-aswel.blogspot.co.uk/

Lana PavkovFinancial Manager

SerbiaGiacomo Filippo Porzio

Project ManagerItaly

Manuel EngelsthalEditor in Chief

AustriaChristia Simillidou

Co-EditorCyprus

Elina RouruLayoutFinland