Beat the Wheat Bulletin 4

Exchange in Spain

I tell my story

Medical Curiosity-news

Advantages of being coeliac

SummerCamp Norway 2012 Where to Eat

News, news, news..!

Y

E C

Editorial Hi everyone!

Welcome to the early pages of the first CYE bulletin of the year 201 3. In this one, among else you will be told many different news, unforgettable experiences about gluten-free life, and hilarious facts about why it is so great to be coeliac. The editors of this fourth issue are: Manuel Engelsthal (Editor in Chief, Austria), Elina Rouru (layout, Finland) and Christia Simillidou (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 good work that started. The editorial board wants to thank everyone who have been part of this bulletin: with photos, texts, and proofreading. Because you indeed make this bulletin be what it is.

This bulletin 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 all quite a big deal in our life, and also without which I couldn´t have had those magnificent experiences there´ve been; camps and other events.. It´s you people, and the attitude for this whole “problem”(as some people call it). Actually, as a controversy 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 like to have some French fries.. and if need to mention, preferably gluten-free" -Ok.. hmm do your fries need to be Totally gluten-free or is it okay if they´re just partly?

"Wha.. look, miss, they either are or are Not. And yes, Totally gluten-free please" Willing to join beat the wheat? Go send your magnificent articles and other material to editors.beat.the.wheat@googlemail.com Elina Rouru

News Pills Youth Committee Meetings, Maps, and Muffins We are walking through London, to Covent Garden, to meet a bunch of young British Coeliacs, wondering what exactly to present about CYE and how to do it. That’s part of our Youth Committee meeting in London – “Finding Missing Countries”. Then it goes all naturally: 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 in forming a national youth group in the UK. Volunteers Manager Miranda Brooks will coordinate the new activities and in the months to come a city break is to be planned. We are already looking forward to welcoming a UK delegate at our next conference in 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 an interesting 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 our website so as to be able to integrate a forum system and the maps in to it, while already collecting data. In collaboration with AOECS we will be able to use the data from their project “Eating out” once they are available.

If you follow us on facebook, you will have seen that we have CYE videos online, presenting the annual project and us as the Youth Committee. Take a look at the Youth Committee presentation here http://www.youtube.com /watch?v=YO6TzQcNWI and at the presentation of the annual project here: http://www.youtube.com /watch?v=8gkvMf2DxcY .

Also, we prepared an update file for the Country Overview – a document summarizing the situation for young coeliacs and youth groups in the different European countries.

Right now the delegates are filling in the information about their countries and by the next issue we can make it available for all of you.

Your CYE Youth Committee Mirjam Eiswirth, Lana Pavkov, and Giacomo Filippo Porzio

Mirjam Eiswirth, Germany

Since the 1st of January the German youth board has its own fanpage at facebook. We share interesting news, funny pictures, delicious recipes and much more. If you want to have a look, this is our link: www.facebook.com/JugendausschussDZG There’s a big event taking place in Germany this year: The World Coeliac Day is on 11th May in Hannover and is organized by the DZG, the German coeliac organization.

At first, everyone meets at grand plaza near the central station and walks together as a procession to the place, where all the companies have their booths to present old and new products. Of course, the German youth board is there, too. We have our own booth with some activities such as our wheel of Fortune. This year, we came up with something special: We asked people to send in a video or audio clip of two to three minutes, the topic must deal with coeliac. The winning clip is going to be presented at the 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 day in the Spanish Capital city, Madrid.

That day guests attended as well as numerous specialists because the goal of the organization was that young people learn more about coeliac disease.

So they talked with physicians, dietitians, nutritionists, psychologists and others telling their personal experience with coeliac disease. There was a presentation about young coeliacs going abroad, another about food security, representatives from gluten free food companies spoke about the ease of on­line shopping. Our nutritionist told us about the delicate gluten free coexistence with others. The medical paper explained the importance of making the correct diet choices. And a great speech was delivered by a psychologist who taught us how to deal with coeliac disease in adolescence and youth.

We enjoyed a lot of gluten free food at lunch that was offered by various sponsors, and we also got to taste lots of gluten 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 they raffled a dinner at the restaurant for two people.

Everyone agreed that this day was a success for the Spanish youth society and we hope to repeat next year.

Juan Carlos Garcia, Spain

CYE SUM MER CA M P

2 0 1 2 N OR

WA Y

Summer 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 "What a 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 climb the highest mountain of Norway. This meant a long exhausting walk of 3 hours including passing a glacier. The effort was totally worth it as we were rewarded with a splendid view of Norway's highest mountain ranges. At the end of this long day all the participants were so exhausted that they all fell asleep in the bus.

On the second day, there was the cooking activity in a public school building in Oslo. Camilla and Synne, the organisers, gave instructions on how to cook a traditional Norwegian dish – I don’t need to tell you the meal was very delicious. In the afternoon Geir, another organiser suggested we go swimming into the lake at Elverum. As Norwegian summers are not that hot, the water was a bit cold and not everybody went into the water. I however made it, which was totally worth it.

One of the many highlights of a CYE summer camp is always the "International Day" during which every country presents itself. There have been some really good presentations like 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 was full 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 visited the 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 our own 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 of the camp.

Pascal Ewert, Luxembourg

Summer (& Winter ;) )

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

T r a v e l T a l e Exchange in Spain A semester in Spain.

In the summer of 201 2, I decided I would like to spend a semester abroad. As I had always wanted to learn spanish my choice fell on the awesome 200.000-habitant city of AlmerĂ­a, which is located in Andalusia on the southern coast of Spain.

When I finally 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.

Actually, knowing I had a flat with kitchen and everyone on the internet telling 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-filled night at the police office during my first hours in the new country. But with a little luck, I finally arrived the next day in the hot and sunny AlmerĂ­a.

I live, 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 still 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.

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 living a real spanish life for half a year instead of living the typical exchangestudent-life to me, and furthermore became pretty quickly a really important part of my life.

View from the university

To the gluten free topic they also got used rather quickly. Telling 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, especially not at home, before. This awareness of celiac disease existing doesn't necessarily mean people know what gluten is, but together with the really advanced food labelling 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 lists. You tell people once that you're celiac, and at every party there will be stuff you can eat. They'll 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 tortilla" which is gluten free.

Tinto de verano con queso con almendras („summer wine“ with cheese and almonds)

Another really useful thing in this country is the possibility to order a gluten free burger in McDonalds and finding a list labelled "products suitable for celiacs" in every chain store. Especially while travelling, this turns out to be extremely beneficial and also just really cool (and delicious.) If not eating at home, which is the normal thing here (simply in order to save money), spanish people go out to eat tapas. Especially in this region, eating tapas completely replaces going to one single restaurant and ordering one single dish. In every bar in AlmerĂ­a with every beer or Tinto de verano (delicious red wine with lemonade) a "tapa" is automatically included. Tapas can be basically 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) grilled fish, meat or seafood.

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 italian) meals.

Birthday party

Cooking

And one time, I met someone who I had found in the facebook celiac group of AlmerĂ­a, 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 really cause me many problems here, I even consider it easier than at home.

All in all, this half year was full of experiences and a really good time. If 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 following 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 actually like it so much that I'm still here and will stay a semester longer than originally planned. I recommend everyone - whether they're coeliac or not - to do something like that at least once in their lives.

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 your diagnosis. I’m sure many of us have felt miserable and upset about being a coeliac, and wondered why on earth they have to deal with having to live with such an annoying problem!

Whenever I start to feel like 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 so far, I was ice skating in both national and international competitions and I’d started looking round universities ready to move away from home. Suddenly I started sleeping more and more, until I got to the stage where I was barely able to make it through a school day. My life literally became eating, sleeping and school. From easter of my final school year, I didn’t complete a full 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 the last year’s problems on stress. However, after 6 months of my nursing degree I was forced to drop out. I had been horribly ill after every injection I had, and working 40 hours per week on placement had been too much for my body, and I was too exhausted to make it to placement. After phoning my Mum in the morning before placement, sobbing because I was so tired I couldn’t get out of bed, I had to come home. Still, 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 still persisted when all I did was 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 a blood test for coeliac disease, so many factors began to add up- my iron deficiency, my rubbish immune system, and why I felt so bloated all the time.

For me, being diagnosed has given me a whole new chance at life. Had it just been stress that had made me so ill, it would have been so much of a struggle to have made life better. Being diagnosed has completely turned my life around, and in September I started back at university, studying Law. When I hear stories of people ‘cheating’ on their gluten free diet, or when I remember how terrible I felt before, I feel horrible- my diagnosis has improved my quality of life so much, and while it sometimes is a struggle, it’s completely worth it.

Rebecca Vucak, UK

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

Usually a gluten free meal is marked in the menu with a capital letter G below the description. If, however, the Gs are missing from a menu, it doesn't necessarily 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 like 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 Amarillo, 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.

It's called www.eat.fi Enjoy gluten free Helsinki!

Ninni Salo, Finland

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 typical Austrian cuisine? It is true we love to stuff our dishes with a lot of gluten, but here comes the good news – over the years Vienna has developed a wide choice of gluten free restaurants. In order to give you a good start on your trip here comes 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 followed by a walk through the parks of the Prater, which are especially recommended during spring time. When you finally start to feel like you’re starving, you are ready to hit the Gasthof Nestroy which will 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 not leave that place before you’ve had a Palatschinke as desert.

The next best thing to do is chill out at one of the various street cafes on the riverside of the blue Danube. If you feel fit again you can start your tour around the old town of Vienna – visiting the Stephans Dom, discovering the many buildings designed by Hundertwasser, and do not forget to drop by the Hofburg in order to see one of the many Lipizzaner shows.

If you still follow that plan you should be by now sick of sightseeing and either ready to go to bed or eager for a party evening. In any case you should eat dinner at the ¡mas! – a Mexican restaurant which offers a wide choice of gluten free 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 cocktail bar. So if you are there at the right time you can benefit from 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 all about it!

The plus-side of being a celiac Well, in my honest opinion, being a celiac isn’t at all that bad. In fact, there are multiple advantages, at least I see them as advantages 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 big boobytrap and you’ll need a spykit to make a glutenfree order, so you’ll instantly have something to talk about! No more awkward silence! Of course, those silent moments will be filled up with your medical history and an awkward conversation about bowel movements and the firmity of your Q But do you really want that silence? I don’t think so!

• A second upside to the first one is that one might feel like (s)he has to tell something strange/weird/embarissing about themself. This way, you’ll 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 still reading, you are either agreeing with me, or you see the humour in all of it. Or both. Good for you!

• An advantage that is probably more for the female readers: You’re already on a diet! All the time! 24/7! Reason enough for me to never, EVER, go on another diet. No one does 2 diets at the same time, that’d be like putting on two condoms 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 really like, which for me, a very picky person when it’s comes to eating, is a very big advantage. The “Sorry, I can’t eat that, I’m a celiac” will not only grant you the pleasure of skipping that thing they call ‘food’, but also might drive them to guilt and they’lll 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 like, but actually: You do!

Think about it: we all refer to people (and hopefully you’ll recognize this, or I’ll look like a total b*tch) with something specific about them: physical, characteristic, Q anything. When you’re talking to people about someone you or the other person don’t really know, you say things like: ‘you know, that short chick’ or ‘the one with the greasy hair that day’ or ‘that guy we thought was a girl’ or Q I’m sure you’ll have more of those. Would you rather not be known as ‘that celiac’ than Q I’m sure you, as a very self-aware person, can find some other names for yourself. In my case, the thing that comes to mind is: ‘that four-eyed girl’ (because of my glasses), ‘that giant/bigfoot/longlegged freak/giraffe’ (I’m 1 m82 and a girl). And those 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 curiosity DID 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 cells- at least ten times more than our human cells, and up to an estimated 1 000 different bacterial species! In addition, these bacterial cells 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 sterile at birth, but colonization with numerous bacterial species starts immediately after birth, thus generating a resident microbiota characterised by unique bacterial profiles and high interindividual and environmental variation. Indeed, the gut microbiota is immensely diverse, varies between individuals and can fluctuate over time, especially 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 siblings showed increased similarity in species make-up. Moreover, interestingly, the gut microbiota profiles of identical twins show a high degree of similarity, but are yet distinct. These findings highlight 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 underlie changes in the composition and function of the gut microbiota will help in better understanding why coeliac disease (and many other diseases) occur, and in developing alternative therapies. This goal is really formidable, isn’t it?

Donatella Iorfida (MD), Francesco Valitutti (MD).

Pediatric Gastroenterology and Liver Unit Umberto I University Hospital, Rome Sapienza University of Rome Director: Prof. Salvatore Cucchiara

Board Box Mirjam Eiswirth General Coordinator Germany

Lana Pavkov Financial Manager Serbia

Giacomo Filippo Porzio Project Manager Italy

Editors Box Manuel Engelsthal Editor in Chief Austria

Thanks to:

Christia Simillidou Co-Editor Cyprus

Elina Rouru Layout Finland

Christine Cotter and Rebecca Vucak for proofreading Asbjørn Oddane Gundersen, pictures page 2 Michaela Edmunds, drawings pages 4, 6, 1 5 and 1 6 Michaela´s blog http://literally-is-aswel.blogspot.co.uk/