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Editorial Dear readers!
F O R M O R E I N F O A B O U T C Y E V I S I T: W W W. C Y E W E B . E U
2 Editorial 3 New Blood In The Dutch Youth Board 4 CDGEMM Italia 5 Glutenfree In The Alps 6 New Youth Board in Germany 7 Hermann / Friendship Bread 9 My glutenfree Saudi Arabia 10 Kabsa recipe 10 Life Of Coaliac Pastry Chef 11 From Patient To Researcher
M asthead On the cover: “Ruhr am Morgen” by Marvin Müller Production Coordinator: Mirjam Eiswirth, Luca Pocher Designer: Marvin Müller, Daniel Grima, James Grima Beat the Wheat published quarterly by the coeliac youth of Europe Check www.cyeweb.eu for updates.
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We are in the middle of spring and we hope you are enjoying the warmer weather. We surely do! As always, this is a season of change and loads of things are going on in the coeliac youth groups all over Europe. We have collected many of these news and put them together in this 13th edition of Beat the Wheat. Read more about what is going on in Cyprus, Germany, Italy, Czech Republic, and the Netherlands. We also have an exciting piece about new scientific developments from Francesco Valitutti, who was part of the Youth Committee in 2010-2012. Enjoy reading – and if you would like to contribute, do get in touch via editors.beat.the.wheat@gmail. com! Your editorial team, Mirjam, Luca, Marvin, Daniel and James
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want to focus on our main objective: actually talk to and with young coeliacs. We want to know what they need and think about, apart from the amount of safe and gluten free food in their local supermarket. Therefore, we head to our outlets: events, our quarterly magazine, our newsletter, but most importantly social media. Using Facebook, Twitter and soon Instagram, we’re reaching young In Dutch, drinking beer is a typical people, while sharing recipes, student thing to do. Too bad for great places to eat, new gluten For us, the best way to learn coeliacs, because they can’t get free products and cool events they and grow is through communiany. We stepped into that hiatus can attend. cating with others: sharing our and are organising a gluten free experiences and asking their beer tasting event the 6th of May: But, who are we? Fabienne, a 19feedback in return. For the gluten typical Dutch snacks included! year old Philosophy student, is our free youngsters, the CYE is just Also we have our annual Gluten new chair. Lydia spent her last year the place to get internationally Free Gala and Summercamp – this modelling across the globe, but is involved. Therefore, we’re looking year, there’s even a gluten free now filling our secretary position. forward to working together more food festival in the making. Every She’s the one you’ll be in touch closely with the CYE and in trying event is an opportunity to meet with when you try to reach us. Mu- to make more people enthusiastic cool people, have a great time, riël, who already has a real grown- for your tiny country, we’re pursuand, of course, eat everything you up job, is our treasurer. A smart ing to hold the CYE Summercamp want. Typical perks when meeting choice: she is the oldest and wisest of 2018 within our borders. We’re a bunch of coeliacs: if it ever gets and makes sure we don’t ruin our looking forward to hearing what awkward, just start talking about budget. Marissa, who is currently the rest of gluten free Europe is that delicious new gluten free travelling across Australia, does up to and share our experiences, bread, or the disadvantages of liv- our PR, and Roel, who lives far so we can improve each other and ing in an era of gluten free hypes. away in the southern part of the come up with the coolest ideas Netherlands, is in control of organ- we’ve ever had! Lately, we have completely reorising all your activities. We are all ganised our board. A fresh group free spirited, motivated people, // Fabienne Meijer of enthusiasts has been wanting to who sometimes have slightly unretake things to a whole new level. alistic ideas about what to do next. Because we’re the youth board, we
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The Netherlands, traditionally not a place where you would go for your gluten free fix. But don’t underestimate us: we’re small, but we’re there, and we have a gluten free youth board to prove it. Our main goal: entertaining young people who happen to be gluten free. And this is how we do it: we organise events for people between the ages of 16-25 filled with good, gluten free food, music and talks. We encourage our coeliacs to meet and greet, become friends and hang out together.
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New Blood In The Dutch Youth Board
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CDGEMM Italia LOOKING FOR CLUES TO CELIAC DISEASE IN INFANT STUDY
F O R M O R E I N F O A B O U T C Y E V I S I T: W W W. C Y E W E B . E U
and possibly other autoimSalerno, Italy – To unlock the mystery of how celiac mune disdisease and other autoimmune disorders develop, orders.” enrollment is now under way both in the USA and The fivein Italy for an international, observational study of year proapproximately 500 participants. This research study is called “CDGEMM,” which stands for Celiac Disease, spective study follows a pilot study of 47 infants investigating Genomic, Environmental, Microbiome and Metabolomic Study. The Center for Celiac Research at Mass- the timing of gluten introduction into the diet and General Hospital for Children (MGHfC), Boston (MA), the characteristic changes in the microbiota – the is coordinating the study which is currently active in 100 trillion microorganisms in the gut – during the introduction of solid food. Fasano’s team looked at Rome (Italian coordinator site), Milan, Bari and Cava the role of the microbiota in the switch from tolerde’ Tirreni-Salerno. ance to autoimmune response leading to the onInfants with a first-degree relative (mother, father or set of celiac disease. Findings from the 2011 study suggested that understanding how the microbiota sibling) with celiac disease are currently being reof infants with a genetic predisposition to celiac discruited through these clinical centers. Researchers ease differ from those of infants without the prediswill study different factors involved in the developposition might allow prediction of celiac disease or ment of celiac disease, an autoimmune disorder in another autoimmunity disorder. “When we realized which eating gluten – a protein found in products that contain wheat, rye or barley – sets off a reaction that we might be able to pinpoint a biomarker that predicts which one of these infants might develop that damages the small intestine. celiac disease or type 1 diabetes, it was not such a far leap to see that this could possibly play a role in the Environmental factors such as method of birth deprevention of autoimmune disorders,” says Fasano. livery, use of antibiotics, breast or formula feeding, “By expanding the study, we’ll be able to take a realand timing of food introduction early in the infant’s life will be examined. Another factor in the long-term ly in-depth look – both in terms of the magnitude of study is the genetic makeup of the infants, specifical- the microbiota and the length of our study – to exly whether the infants have inherited genes involved amine the genomic, environmental and metabolomic in the expression of celiac disease. Faecal microbiota factors that precede the onset of celiac disease. What makes this study so exciting is not only the potential will be prospectively characterized, from birth to 5 treatment for celiac disease, but also the possibility of years of age. learning how we might prevent its onset.” “Celiac disease is a very complex disorder that can affect many different systems in the body,” says Alessio For more information about CDGEMM, please visit: Fasano, MD, director of the Center for Celiac Research www.massgeneral.org/children/research/studio-genomico-ambientale-microbiomico-e-metabolico-neland principal investigator of the study. “Along with environmental and genetic factors, we think that the la-malattia-celiaca/default.aspx microbial colonies these babies have in their gut are www.facebook.com/cdgemmitalia very significant in the pathogenesis of celiac disease // Francesco Valitutti, Italy
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Glutenfree In The Alps GLUTEN FREE M OUNTAIN SHELTER
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We began the New Year with a winter excursion on the Southern Alps. There were 13 of us and two mountain experts guided us. We left our cars on January 9th and ventured into the snow-clad mountains of eastern Trentino. Our destination was the mountain shelter “Vincenzo Lancia�, which is a member of the gluten free network of the Italian Coeliac Society and offers gluten free food. The bad weather never stopped and the climb was sometimes unpleasant, but when we reached the shelter we were repaid of our efforts. We spent a cheerful evening and we had a tasty Italian dinner. Warming up near the wood stove is the best thing ever! The next day we left the shelter and reached the top of the nearest mountain. When we arrived there, it was all cloudy, but as soon as a small opening appeared, we were able to see a wonderful landscape. If it had not been for the icy wind, we could have stayed there for the whole day.
It was time to go back home, so we descended gradually in the direction of the valley floor. When we arrived at the cars we were tired, but also very happy for the experience. If you are planning a holiday in Northern Italy do not miss the opportunity to eat gluten free on the top of our mountains!
participants with coeliac disease. It was not an easy work, as there were more than 2000 participants, of which almost 100 needed a gluten free meal! We never had so many coeliac participants, but luckily we had prepared plenty of food and nobody was left hungry. After dinner we joined the others and set up a dance floor in the BONDONAIL middle of the snow track. In February we climbed the Alps We went home tired and happy again, but this time for a very difnot only for the beautiful evening, ferent reason. Every year the Italian but also for having helped LeuLeukaemia Society organizes a kaemia Society, whose work is renocturnal snowshoes ally inestimable. Next year we will hike to raise awarecertainly do it again, so you are all ness for Leukaemia invited to join us! and money to help people with the dis- // Luca Pocher, Italy ease. For the third year the Italian Coeliac Society worked together with them and provided gluten free food for
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Almost half a year has passed since the elections of our boards. Up until now, we have focused on our ongoing projects, while growing as a team. Our ZOELI project (youth groups all over Germany) is slowly but steadily growing. We have a few groups that meet quite regularly now. The next issue of our youth magazine “Zottel” will also cover the activities in those groups to make the project itself more known. We also changed the design of our magazine slightly, because we realized it was sometimes hard to read. We had a meeting with all board members and office staff in January. The goal was to talk about the future of the German Coeliac Society. We split into mixed groups to talk about various topics.
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New Youth Board in Germany We also got some input for our projects, e.g. to consider the target group of our magazine more and discussed how to recruit more volunteers to organize and lead our youth camps. It was a really interesting event. Our last meeting took place during the weekend of the open house day at the Coeliac Society’s office. We tried to revive our mascot “Knöllchen” that is meant to address the smaller kids. The name comes from the word “Knolle”, which is used to describe a potato, hence the design. We got a costume to wear during events so that “Knöllchen” can actually be physically present and play with the kids and answer their questions. A few months ago we used a small donation to print postcards and magnets with different really cool designs. Those were a big hit at the open house day and last November at the elections. We’ll definitely bring them to future events, too! If you would like to see them, you can find the postcards designs on our
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facebook page (www.facebook. com/JugendausschussDZG). We are looking forward to the rest of 2016 and all our ongoing and future projects. If you want to know more about us, send me an email: Hannah. dressen@dzg-online.de // Hannah Dreßen, Germany
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Sourdough Starter: (for bread) 60g 40g 130ml 20ml
gluten free flour sugar whole milk butter milk
Yeast Starter: (for cake and sweet bread) ½ pck. 1 cup 1 cup 1 tbsp.
dry yeast gluten free flour water sugar
Mix to a smooth batter. This might require some more liquid. Set aside in a closed container for 2-3 days, (for the yeast starter, that’s 2 days + 1 in the refrigerator). Stir occasionally, until bubbles form and the mass rises noticeably. If you got this far or have received a (gluten free, of course!) Hermann “child” as a starter from a friend, proceed as follows:
Day 1: let him rest and get used to his new home* Day 2-4: stir once a day (Supposedly it helps if you always go in the same direction. Can’t tell you why, though. Just imagine we’re in Potions with Professor Snape.) Day 5: feed with flour, sugar and milk; for cake dough use 1 cup each, that’s approx. 100g flour, 100g sugar and 180ml milk for bread dough reduce sugar to 1½ tbsps. Day 6-9: stir once a day Day 10: feed same as on Day 5, divide and bake!
Don’t worry if you can’t bake on the tenth day: You can also freeze some portions for later use, or string Hermann along for a couple more days as long as you keep stirring diligently – he likes the attention.
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Hermann is the chain letter of pastries. This German version of (Amish) Friendship Bread is a bit more savoury, but still as sweet on the heart and has brought friends closer together ever since the ‘70s. So how about it? Want to join me in the fun and figure out how it may work – the gluten free way? For now, I’ll give you all the instructions and some basic recipes. Then in the following issue(s) of BTW we’ll compare notes and share stories as to how our respective “Hermanns” have turned out.
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Hermann / Friendship Bread
* This may vary. Some people don’t feed Hermann before divvying him up and baking/giving to a friend. Find out which it is, so as not to starve him out until Day 5.
Basic Cake Recipe
1 cup Hermann 2 cups gluten free flour Some general tips: 1 pck. baking powder Hermann is quite a sensitive little 2 large eggs guy, so don’t worry if things don’t ½ cup oil / butter work out the first few times. Just ½ cup sugar make sure not to use any metal, 1 pck. vanilla sugar but only wooden or plastic spoons, 1 pinch salt and to keep him in glass or plastic (½ tsp. cinnamon) containers, which you can cover or (1 cup raisins or chocolate close. Like most people, Hermann chips) is most comfortable at room tem- (1 cup almonds or other nuts) perature and will show you this by growing and ‘bubbling’ along. In Mix Hermann with dry ingredients, accordance to this, you must also then gradually stir in the remainadd lukewarm ingredients, espeing ones. Grease cake pan and fill cially the fluids. It makes all the with dough. Bake at 180°C for 50difference. Now, if you take good 70 minutes. You may also mix in or care of him, he will reward you top it off with some cherries, sliced with triplets every ten days: Divide apples, plums or whatever you him up into four parts and, keeplike. Another delicious option is to ing one part for yourself, give the coat the cake with a mix of ½ cup others to a friend along with the brown sugar, ½ cup melted butter instructions. and 1 tbsp. cinnamon.
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Hermann Basic Bread Recipe ( = Siegfried)
F O R M O R E I N F O A B O U T C Y E V I S I T: W W W. C Y E W E B . E U
1 cup 700g
400g 2 pcks. 3 tsps 3 tbsps 700
Hermann rye flour ->switch (!!) for buckwheat, tapioca, millet, chestnut, plantain, quinoa, amaranth, sorghum, teff, almond, soy…. wheat flour -> switch (!!) for corn, potato, rice, ... dry yeast salt vinegar luke warm water
M y glutenfree Saudi I’ve lived in Riyadh, Saudi Arabia for two years. I worked as a nurse in a royal hospital. Before my journey I had to ask a lot about glutenfree (and dairy free) life there. I also met few coeliacs during my stay. It was a great experience that has greatly expanded my culinary world.
A brief history
Saudi Arabia is the largest country on the Arabian Peninsula. Its modern history has been dated since 1932, when the first king Abdul Aziz Al Saud United several small states. In 1938 oil was found. The king commenced cooperation with USA and together they Mix Hermann with the flour and the yeast and let started to extract the oil. He also promoted building them rise for at least 20 minutes. Knead in remaining infrastructure and fast development of the whole ingredients, divide dough and form into two loafs country. The new capital Riyadh has grown since of bread. Let rise on baking sheet for another 20-30 then from a small town with couple clay houses to minutes. Cut across diagonally, around 2cm deep. huge multicultural city. The country still needs a lot of Preheat oven to 250°C. Bake for approx. 20 minutes workers from abroad. Around 100 thousand Western(top/bottom heat). Reduce temperature to 200°C and ers, over one million Indians, one million Pakistanis bake for another 50 minutes. and half a million Phillipinos live there. There are also people from Africa, other asian countries and arabic countries. The estimated number of foreigners is 21% Bonus competition: of the whole population. Since the name for a Hermann bread is SiegGorgeous and diverse nature fried, I believe we have Sauda Arabia’s nature is gorthe right to start a new geous, and there is a lot to see tradition and name our all over the country. There are very own gluten free mountains in the north and the Hermann. My family southwest. This promises colder thinks it should be weather, water, greenlands, and Gerhard – being a sometimes even snow. The oil similarly “oldschool” fields are at the east coast, in the German name and gulf of Persia. Jeddah, one of the having the irony of big cities, is on the west coast. Rub containing “gh” (the Al Khali, the largest sand desert, is abbreviation for the in the south. The central belt of SauGerman “glutenhaltig” = “contains gluten”). di Arabia is covered by a rocky What do you think? Any suggestions? desert with areas of red sand. // Maike Michel, Germany
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Arabia
Historical sights
The country offers some exquisite historical sights – the old town in Jeddah, Diriyah in Riyadh or Madein Saleh. The latter is an ancient city, carved in the rock. It resembles Petra in Jordan, after all it was built by the same people, Nabateans. Once a year in Riyadh there is a festival called Janadriyah. Discover various arabic architectural styles and traditions and get togehter with local people, taste typical arabic food, and buy souvenirs.
Food: Dates and Kabsa
Saudi Arabia is a big producer of dates and the people eat them every day. There are several sorts of dates, each one has slightly different taste. Saudi people serve them with tiny cup of gahwa. Gahwa is mildly roasted coffee boiled with cardamom and sometimes even other spices. Every family use their own recipe.
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In this amazing landscape you can meet camels, geckos, baboons, and even desert foxes. There even used to be a population of White Onyx. This antelope was nearly extinct and is now bred in conservation areas only.
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The national dish is called Kabsa. Kabsa is chicken, boiled and mixed with rice with typical arabic seasoning. It is prepared in many different ways from region to region.
Food on the go
On barbeques or in the city you can get Kofta or Kebab. In Saudi it was always minced meat with eggs only, but back home I noticed it can contain flour or breadcrumbs, too. Eating out is a little complicated, because people don´t usually know what gluten is. But there are a lot of Asian and Indian restaurants, which cook meals without wheat flour. I also became more and more adventorous over time and tried exciting new dishes like camel milk, cardamom tea, dates with goat grease (this was a very special one), stuffed vine leaves and glutenfree falafel. GF shopping in Riyadh is much more easier. There are several hypermarkets which have full shelves of various glutenfree goods from every part of the world. // Katerina Zelenkova, Czech Republic
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Kabsa recipe
F O R M O R E I N F O A B O U T C Y E V I S I T: W W W. C Y E W E B . E U
Ingredients:
Half a chicken Half a teaspoon of grated ginger Hald a tablespoon of orange zest Half a tablespoon of black pepper Half a tablespoon of ground cardamom Half a teaspoon of cinnamon Quarter of a teaspoon of ground cloves 1 dried lemon 1 tablespoon of tomato paste 300g of rice 2 roughly chopped carrots
Preparation:
Stir-fry chopped onion, add ½ teaspoon (tsp) of grated ginger. As soon as it turns golden add 2 quarters of chicken and fry it from all sides. Add salt, ½ tablespoon (tbsp) of orange zest, ½ tbsp of black pepper, ½ tbsp of ground cardamom, ½ tsp of cinnamon, ¼ tsp of ground cloves, 1 dried lemon, and 1 tbsp of tomato paste. Stir-fry for a while, then add finely chopped tomatoes and water. The chicken needs to be submerged. After 25 minutes of boiling remove the chicken, put it on a tin into the oven for 5 – 10 minutes at 200°C. It needs to turn brown and a little crispy. Add 300g of rice and 1 or 2 roughly chopped carrots to the sauce and boil for 20 minutes. When it is done, put the rice on a big plate and place the chicken on top. You can garnish your dish with mildly fried chopped almonds and raisins on the meal – that’s the traditional way.
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Life Of Coaliac Pas I was diagnosed coeliac two and a half year ago, and the diagnosis has not been easy. I knew about the gluten free diet, since my younger sister had been diagnosed when she was a little baby. My mum always tried to cook everything gluten-free so that my little sister did not feel like an outsider. Neither of us ate at school cafeterias and mum cooked for us at home. But I still used to eat bread and dumplings that contained gluten. This changed as soon as I got diagnosed as well. My symptoms were strong heartburns and I generally felt unwell. I am a pastry-cook and work in a sweetshop. This can lead to difficult situations, for example when customers ask for advice when they are choosing between all our delicious pastries. I obviously cannot help them, and it always makes me quite sad to think of all the delicious bakes I won’t be able to eat any more. It does not help that my colleagues like to tease me about my allergy and don’t understand how hurtful that is to me. But then there are also people who understand and I really appreciate every time my friends bring gluten free cake and treats for my birthday. It just feels amazing. I can also see that the quality of life for coeliacs is constantly improving – there is more and more on offer in terms of products, and many special products that replace, for example, croissants. However, I still find the diet very limiting. Even a small carelessness can lead to massive problems and you need quite a while to recover and go back to a normal life. I also sometimes get frustrated at always
From Patient To Researcher the current methods to not reliably diagnose all cases of coeliac disease. The other alternative is an intestinal biopsy, which can be quite scary, especially for young people. My research group is working on finding a new method which is based on the detection of activated lymphocytes (the immune system cells) in blood. If this technique is proven to work, it will be a tool to give a clear diagnosis to those people whose results with the current methods remain inconclusive. We are now analysing the results from our study. Beyond the scientific aspects, working on this project is a great experience for me. I have the opportunity to work on something that will help many people to a clear diagnosis. Moreover, it is a great way to learn more about the causes of coeliac disease and the current diagnosis tools, which will help me on in my goal of finding out as much about coeliac disease as possible. // Miguel Garcîa, Spain
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This September it’s been two years since I have been diagnosed with coeliac disease. At that point I was about to start my second year in biochemistry. I immediately decided that my goal in my career would be to find out as much about coeliac disease as possible, having to read the labels of evincluding its causes, diagnoses, erything I want to buy – and the surprise of finding gluten in some- treatments, and potential cures. thing that really should not contain Now I am in the third year of my degree and have joined to a reany. search group for my final project. I It would be great if coeliacs got will work on new some sort of support methods of diagfrom the governnosis for coeliac ment to pay for the disease. The main expensive diet – if goal is find new we do not stick to methods of dia gluten free diet, agnosis. To date, this has serious conthere are two sequences on our main options: first health, but we are of all, the serologileft alone to cover cal analysis for the all the costs. I hope detection of imthis is going to munoglobulin IgG change in the fuanti-transglutamture. inase and second, In the pictures you the genetic analycan see my bakery sis. products. I try different recipes. I will not give up, although some- In both cases, if the results are postimes I can only give my products itive, the diagnosis is very clear, but to my hens. In return, they happily unfortunately for a considerable number of people who do have lay eggs for me to bake more. // Marcella Buchtelova, Czech Republic coeliac disease, the results of these tests are inconclusive. This means
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