Beat the Wheat 15 by Beat the Wheat

t a Be

t a e h w e th

W 2 Editorial 3 News from CYE Board 4 Coeliac Day or Coeliac Month? 5 Coeliac Societies USA 6 Greetings from GUTs 6 Italy Newspills 7 Winter Camp in Sweden 8 FACE Joven’s 10th Birthday 9 Gluten-Free Cosmetics 10 Drug Treatment for Coeliac Disease? 12 Coeliac Disease: Strain on Daily Life 15 Interview: Sin Gluten Por Favor 17 Recipe: Alicante Style-Rice 17 Recipe: Coca Amb Tonyina

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

Content

M asthead On the cover: “Alicante” by María Van Der Hofstadt Rovira Production Coordinators: Luca Pocher, María Van Der Hofstadt Rovira, Mary Ioannidi Designers: Marvin Müller, Daniel Grima, James Grima Beat the Wheat published quarterly by the coeliac youth of Europe Check www.cyeweb.eu for updates.

Editorial Hello World! We are in the middle of springtime, so we hope that you enjoy the warmer weather, the longer days and count down the days for the Summer to come! We surely do! This is our 15th issue of Beat the Wheat, the 2nd edited by our current team! It is an important goal for the bulletin. The first edition was published in 2012, six yeas ago, and it is wonderful that the CYE does still believe in it! In this issue you will find articles from Scandinavia, the United Kingdom, Spain, Italy, Greece and even the United States! For us having articles from many different countries is very important because it means that the bulletin is alive, growing up and going further. We are also very happy to let you know that the Beat the Wheat’s section of the CYE official website has been updated. You will find not only the last published edition, but also a presentation of the bulletin and an archive with all the 15 issue of the last years. Do not forget to check it! Many thanks to our readers and to all the people that helped us to make this possible! Your Editorial Team

News From CYE Board We are also working on the next CYE conference: First was brainstorming for possible activities. We will inform you about the program when we decide, but we are going to follow Mirjam and Tereza and start with games to get to know each other (most of us meet just that time in the whole year!). We are going to change some parts of last conference agenda, also taking some time for working in groups and we hope we will be able to exchange ideas and news with AOECS. Stay tuned for more info – and your suggestions are always Dear readers, welcome! We are now writing from Lon- The Coeliac Youth of Europe is going social! Moreover, we are always in don, where we are having our touch with this year’s Sumthird meeting as Youth Com- Go check the CYE new official Facebook page: mer Camp organisers – it mittee. The last meeting was facebook.com/coeliacyouth looks like they are doing a in Zurich, where we also met great job, and we are sure ofile: Sandrine, one of the French participants will enjoy their And don’t miss the CYE Instagram pr delegate. Thank you Sandrine @coeliacyouth time in Alicante! for spending time with us and for the macarons! We have been working on the In the past Annual Project. After discussing it month we have with AOECS, we decided to split been working it into two phases. The first one is on the list of aimed at raising awareness of co- organisations eliac disease within exchange orthat should ganisations. We are soon sending receive the an official CYE letter explaining the official letter. project to these organisations. This Should you will raise awareness about coeliac have any sugdisease and hopefully they will be gestions or interested to be part of this project would like to be involved in this and contact national associations. project do not hesitate to contact us. Your Youth Committee, The second phase will focus on Alessia, James and Beatriz coeliacs asking CYE for any in-

FOR MORE INFO ABOUT CYE VISIT: WWW:CYEWEB.EU

formation, including hosting. This will happen through a contact form on our website. Most data will be managed internally by each delegate.

With diagnosis rates still low, many Coeliac societies organise a range of activities with the aim to raise awareness about different aspects related to Coeliac Disease. All of these activities happen during the month of May, but not on the same day. AOECS celebrates on the 16th; in South America, on the 5th; Spain’s National Day is on 27th; in the USA, they celebrate it in September and the OMS never chooses an official date. But, the thing is, we have the chance to talk about Coeliac Disease in the media and on social networks. With the aim to spread information about Coeliac Disease and the gluten free diet, many of our member societies and international Coeliac organisations worldwide organise a range of events by working with both their respective country’s government and the media.

W 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

Coeliac Day or Coeliac Month ? provide important information to government institutions on how to gain support for those affected. Many societies are also organising activities for their members in the hopes of bringing them the opportunity to share company with others, learn about their condition, and taste new gluten free products.

In the year 2000, there was an International Symposium on Celiac As we said, AOECS celebrate this Disease in Baltimore (USA) with day on the 16th of May, but some Coeliac Associations worldwide in years, the date changes. Through- attendance - most of them from out the month of May, AOECS South America. Here, they decidmember societies hold seminars, ed to commemorate Celiac Disinformation sessions and workease Day on May 5th. After that, shops all over Europe. These are some of them changed the day aimed at raising awareness of Co- but most of them still celebrate it eliac Disease and its symptoms on that date. For example, the Coamongst medical professionals eliac Association from Argentina and the general public in their organises activities, choosing a difcountries. These events intend to ferent message each year, to try to help doctors identify the symppromulgate information about the toms early on, as well as helping disease to everyone; for example, those who may be experiencing this past year they managed to symptoms that could be related have postal stamps with their own to Coeliac Disease. The events cross grain sign.

The USA celebrates National Celiac Awareness day on September 13. In general, it is celebrated only on social media – users post information about Celiac Disease to raise awareness. But May is also celebrated as Celiac Awareness Month, and during this month, the larger organizations – like the National Foundation for Celiac Awareness – may put on an event in one particular city. For example, in 2015, the NFCA planned a Celiac Awareness Day with a baseball team in Philadelphia. By and large, though, the majority of celebration happens online, with people sharing tips, tricks, and resources.

In Spain, since the year 2003, they celebrate their national day with the aim to transmit information; however, there is still a lot to do about Coeliac Disease and the gluten free diet. We have presence on social media, and the daily life and actions of people with Celiac Disease are hung up on flags, with the logo of this celebration and the Coeliac Associations in the

In the end, the aim of all these actions, activities and celebrations, no matter when we do it, is the same: to talk about what happens, talk about the illness, and try to make it more known in the society to try to make our life a bit better. So… who cares if it’s one day or another? Just one day or a month? If we had to choose, we would take the whole month and let the world know about Coeliac Disease. #CoeliacMay #MayoCeliaco María van der Hofstadt Rovira (Spain) & Allie Scheiber (USA)

Here in the United States, we have 3 principle Celiac associations: the Celiac Disease Foundation, the Celiac Support Association, and the National Foundation for Celiac Awareness.

Some of these associations coordinate local chapters in some states, but not every state has a chapter. In many cities, Celiacs on their own set up “meet ups” that are not necessarily affiliated with a society.

There are a few camps that are organized by the Celiac associations, but they are not like the CYE camps, as they are mostly directed at younger children and teenagers.

FOR MORE INFO ABOUT CYE VISIT: WWW:CYEWEB.EU

different councils of the cities of Spain. In addition, we have the logo in the national lottery or make blue balloons with the logo and send them to the members. During that month, FACE and their associations organise many different activities for their members and establish contact with the media to be on the news.

Coeliac Societies USA Some of the associations host yearly events to benefit Celiac Disease, by raising money and awareness. For example, the Celiac Disease Foundation has a “Team Gluten-Free” that participates in marathons throughout the country. They also host a Research Conference & Gluten-free Expo every year, where doctors can come talk about the disease and present research progress, and where companies can display their products.

The Gluten Free Allergy Free Expo is another fun exposition that travels all around the USA, visiting many different cities each year to present new products and lectures. Unfortunately, there is not much For example, a blogger or someconsistency in the presence of one else may choose a gluten-free Celiac societies in every state of restaurant and a certain day and the USA, but the meetups, confertime, and he or she can make an ences, and expos are great ways announcement on social media for to meet other Celiacs, and there Celiacs in the local area to see. This are many forums on social media is so far the best way I have found where Celiacs can find support! to meet other Celiacs. The majority of other support groups commuAllie Scheiber, USA nicate through email, rather than in-person meetings. This is nice, too, for sharing new products or announcements and research.

Greetings from GUTs

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

A big hello, hola, bonjour and ciao from the newly as- We’ll be offering more fresh content, helpful advice sembled committee for the Coeliac UK youth group, and recommendations and more occasions to meet GUTs. one another than ever before! Standing for Gluten-free Under Thirties, GUTs has been going from strength to strength in the past few years, with past committees organising a weekend away to Birmingham and providing key online support for younger people with the condition.

We have come up with some exciting new roles within the committee, with Nicole Dente and Emma Rushworth taking on Administrator roles, Jessica Marples and Fiona Stewart as Social Media Officers, Josie Ray as Communications Officer, Sarah Wheldon as Content Editor and Sarah Lucas as a Writer.

With seven new committee members now onboard, watch this space as we look to build bridges even fur- We are really looking forward to the exciting year ther within the gluten free community - both in the ahead, as well as some great experiences with our UK and overseas. Our aim is to make sure that those friends at CYE – roll on the Alicante Summer Camp! with coeliac disease are more involved than they’ve ever been and have plenty of ways to get stuck in.

Italy Newspills

This May will be a great month for young coeliac people in Italy! We’re organizing a huge event dedicated to our activities and volunteering. There will be more than 40 participants, mostly people who already do volunteering work for our society. It will last two days and it will take place in the central Italian region of Tuscany, near the town of Montecatini Terme. Thanks to a good collaboration between our working team and the volunteers we’ve organized a very exciting program, which includes moments of sharing as we all know that a good European cooperation is a experience, brain storming, conversation with med- crucial need of our generation! ical experts and a chance to meet our sponsors and the founders of the Italian Society, who knew what it Luca Pocher meant to have coeliac disease in the 70s! And let’s not forget that this event is not only meant to inform young coeliacs and let them bond, but also to raise new and original ideas. Europe and the activities of the CYE will also be at the centre of the event,

The Winter Camp took place in Sälen (Sweden) and we were around 60 participants between the age of 15 to 29 from both countries. The camp started on Thursday the 26th of January and ended on Sunday the 29th. Four leaders from Sweden and seven from Norway met the day before the camp started to plan the finishing details. During the camp we went to Kläppen Ski Resort to ski and have fun. When we got back to our accommodation we ate great gluten free food and each night we had competitions. Everything from human curling to building the tallest tower made of spaghetti (gluten free of course!) and marshmallows. We had a Swedish day were the Swedish association hosted the games and a Norwegian day when Norway was the host of the evening activities.

During one day we also discussed our different experiences with coeliac disease and gluten free food. The discussed Questions included many topics, for example: “What do you think about the gluten free trend?” “What are the differences between living with celiac disease in Sweden and Norway?” “How can SCUF and NCFU collaborate in the future. The discussions that followed were great with many thoughtful answers.

FOR MORE INFO ABOUT CYE VISIT: WWW:CYEWEB.EU

For the first time in a long time the Swedish Celiac Youth Society (SCUF) had a winter camp. It was a collaboration with the Norwegian Celiac Youth Society (NCFU). SCUF has collaborated with other swedish associations before but this was the first time we had a collaboration with a coeliac youth society from another country.

Winter Camp in Sweden

We thought it was a very fun and rewarding experience to do a winter camp with an association from another country and we would definitely like to encourage other associations to do that as well.

FACE Joven Celebrates 10th Birthday

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

FACE Joven, the Spanish youth group, was founded in 2007 due to the enormous need to establish a connection between the young coeliac people in Spain, and to be able to share knowledge, experiences and meet other Coeliacs around the country.

mer camps, formative talks, trips, lunches, lots of new projects we are able to develop soon, and - of course - hosting this year’s CYE Summer Camp here. Now you know a bit more about FACE Joven, so there is no excuse not to come enjoy and collaborate with us! See you in Spain enjoying delicious gluten free food! Juan Carlos García Sánchez President of FACE Joven.

This project seemed very ambitious because, although there was an adult association who could help us with the start up, it was necessary to create a new organization from scratch, find a team to work with, create projects, getsponsors, etc. The founders organized the first camp in Madrid ten years ago to break the ice and to get in touch with the first coeliac people, and I am sure they didn’t know they would be creating a big team that would continue to make it possible to grow the youth association. During the next few years, the organization improved the management, thought up new projects, and reached out to the whole country. Nowdays, we are proud to have achieved putting thousands of Coeliac youth in contact, in an effort to make their lives easier. Our team is formed by our delegates, who develop the activities in their regions for Coeliacs to attend, and to help all of the young Coeliacs nationwide. Today, we celebrate the 10th anniversary of FACE Joven by organising different activities with all its members and the many experiences behind us, like sum-

Gluten Free Cosmetics It is a relief to find such longed-for labels and be able to bite each piece of food with total peace of mind. The problem comes when we find gluten free labels on unsuspected products which do not contain any gluten at all, such as “gluten free milk.” This labelling can make one confused and doubt whether we are choosing the right products in the first place. In the case of “gluten free milk,” this is merely a publicity strategy into tricking consumers to doubt other brands and win coeliac customers in buying their milk with this unnecessary label. By doing this it gives coeliacs a sense of security that they are buying milk that will not harm them when in fact companies use this marketing strategy to gain customers. As mentioned before, milk of whatever kind, does not contain any gluten. It makes us hesitant and it is more confusing than not when you find “Gluten-free” written on products like milk, salad or jam. Does this mean that other products without a Gluten-Free label do have gluten in them? Don’t panic, the answer is NO. Any products that are gluten free by nature will never have a gluten free label on it. In fact, it is illegal to put a Gluten Free distinction in these foods, of whichever brand, given that there is no change in or altercation in their quality.

FOR MORE INFO ABOUT CYE VISIT: WWW:CYEWEB.EU

Coeliacs are becoming more and more used to finding gluten-free labels on food products - so much so that we have developed a sixth sense in spotting them swiftly when going through the grocery store.

eat body lotion or lipstick do we now? You would need to consume ten full lipsticks, more than one litre of toothpaste or body lotion in one day to arrive to that amount of gluten to make us feel sick (and most probably not from the gluten..). So, relax my friends, you can still brush your teeth, use mouth wash, wear make-up and slap on the moisturiser as they won’t cause damage to the intestine until further notice. Who knows when it might change? María Caballero. Nutritionist Spanish Youth Group

To make matters worse and more confusing you may find inedible products like make up, body lotion, tooth paste, even play dough as branded as gluten free. Again, don’t panic. You do not need to change your shampoo, soap, or other toiletries. It is just an advertising claim which informs you that they may contain traces of, or products of gluten but we do not

W 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

Drug Treatment for Coeliac Disease? try to understand the alternative pharmacological treatments aside from the gluten-free diet that are currently being developed in different laboratories across the world.

The immune system is frequently It is known that Celiac Disease is facing unknown proteins in the an autoimmune disease that pro- intestine, since the nutrients and vokes a hypersensitivity reaction the bacteria of our body that live when an affected person faces in our intestine are mainly extergluten. nal proteins. That is why the intestineâ&#x20AC;&#x2122;s immune system maintains Our body has an immune system (by default) tolerance mechanisms that works as an army to proagainst these external proteins, tect us, but at the same time, it which are harmless but still able maintains tolerance mechanisms to provoke an active immune reagainst our own antigens: our pro- sponse against invasive opportuteins. When the immune system nistic pathogens. Moreover, the faces strange antigens (external or digestive immune system is very strange proteins for our system), it accurate when it comes to balancinduces an active response against ing the tolerance mechanisms and those substances. Most likely, they the immunity mechanisms. The are proteins from a bacterium or immune system rarely makes misfrom an invasive virus - or even takes, but sometimes it wrongly from tumor cells. Usually, our imidentifies the proteins that it has mune system is quite effective to attack. This is what happens to when it comes to distinguishing people affected by Celiac Disease. our own proteins and those that The immune system attacks the are strangers. However, it is not gluten proteins of the foods they perfect, and on some occasions, eat everyday. it attacks our own proteins. And thatâ&#x20AC;&#x2122;s when we develop autoimNow that we have reviewed what mune diseases. Celiac Disease is, we are going to

Nowadays, there are different lines of investigation from all around the world that are trying to find a drug treatment for celiac people, which could substitute or complement the gluten-free diet. It is important to highlight that these research efforts are still experimental and, even though they are becoming more and more popular, they still raise many questions. Nowadays, none of them are effective enough to substitute a gluten-free diet for life. Those research efforts are mainly focused on avoiding gliadin absorption, (selectively blocking the waste of glutamine, etc.), and building immunity thanks to vaccinations, etc. There are two main lines of investigation: a clinical one and another one based off of the popular pills that everyone talks about. Regarding the clinical line of investigation, the immunotherapy treatment has good critics. However, there is still a lot left to investigate. On the flipside, the pills (which everyone now talks about) work by provoking a hydrolysis reaction (breaking protein links using water molecules) by external exogenous

enzymes.

On the one hand, the clinical trials described by Hon H Sunwoo (Gujral et al. BMC Immunolgy, 2015) use an egg’s immunoglobulins (antibodies, the immune system’s specific proteins) to provoke an antigen-antibody reaction that neutralizes the gliadin in vitro; however, we have to highlight that the main objective is to obtain it in vivo. Nevertheless, we can only be assured by this research that the in vitro actions were able to block the damage that the gluten produces in the intestine using the antibodies of egg yolks. Besides, when these antibodies are found in the pill that we take, the tolerance to it is good. However, this was only tested in healthy volunteers and not in celiac people. In medicine, this is known as a study in “phase 0” – meaning it was only tested as a treatment that is safe for human Moreover, another important consumption. problem arises according to the research that is being carried out in On the other hand, the pill follows Moscow: the protein mesh known a different mechanism, but there as gluten changes depending on are still many things that need to the cereal it comes from. So, the be clarified. These pills are sold effects will be different in different as the solution to cross-contamcereals and the result will be difination or to involuntary transferent in every Celiac (Anastasia V. gression. These pills provoke an Balakireva and Andrey A. Zamyatenzymatic reaction that breaks the nin Jr, Nutrients MDPI, 2016). This protein mesh known as gluten. could provoke a cross-reactivity, At first, these seemed like a good which is not related to a gluten cell idea since many of these enzymes identification but rather to a wrong are naturally produced even in identification of other substances cereals with gluten (for example, (as peptides or protein sequences in the barley that produces amyin gluten-free food, whose struc-

tures are similar gliadin such that the immune system gets it wrong, etc). All of this hinders these types of food supplements from being helpful to Celiacs. So, after all that we have seen, we can still say that, for the moment, the only safe treatment for celiac people is to follow a lifetime gluten-free diet. Let’s let the scientists continue with their work to find a solution and maybe, sooner than we expect, they will find a solution. But let’s be critical and not let ourselves be drawn by the hope of a possible solution. María van der Hofstadt Rovira Pharmacist Spanish Youth Group (FACE Joven)

FOR MORE INFO ABOUT CYE VISIT: WWW:CYEWEB.EU

lases during its fermentation). The problem lays in that this has only been tested under very specific conditions (Janssen et al. Journal PLOS ONE, 2015). As it is shown in that article, we do not know how it will react in another pH or in another environment. Besides, it is important to point out that even though we can find different food supplements in our markets, many of them use the same enzymes with proteolytic activity: amylase. It was specified in that study that these food supplements are contraindicated in celiac people, since the effect of these enzymes on the food with gluten has been tested with the ELISA R5 analysis, which is a technique used to identify gluten by the Codex Alimentarius. The final result was that even when the amount was reduced, gliadin sequences could still be found.

W 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

Coeliac Disease: Strain on Daily Life

A strict diet as the course of treatment of a chronic disease poses challenges in social situations. The requirement of constant vigilance may be wearying. A person with coeliac disease is always a special case. They need to ask, check and explain. Their well-being is supported if the people around them understand.

is simple in terms of medical science but challenging in the daily life of the people suffering from it. The dietary treatment of the disease means that people with coeliac disease must remain vigilant and cautious every time they put something in their mouth. In practice, the challenges of day-toEveryone has his or her own way of day life arise in the grocery shop The disease is the same for every- reacting and adjusting to a big life- when reading ingredients lists, one: coeliac disease. The treatment style change. That, after all, is what for example, or at the coffee table is also always the same: a strict chronic disease diagnosis means. when one must check how the gluten-free diet. However, people purportedly gluten-free pastry was have very different experiences of Strain of constant vigilance and prepared. Even the little things the disease. caution may become hard due to constant recurrence. Some people treat a coeliac disThe treatment of coeliac disease

ease diagnosis as a matter of mere practical arrangements. They find out what they can eat and reorganise their flour cabinet. For others, the diagnosis seems to shake the very foundations of their whole life. Their thoughts are filled with shock and despair.

W Does difference bother others?

Many people with coeliac disease say that sometimes they would like Difference may be the topmost to be able to focus on other things feeling in discussions around a cofat meals than their case history. fee table. The feeling of being different may be hard for some peoForced to break social codes ple to bear, and it may feel better to try to hide it. Young people with There are unwritten rules connect- coeliac disease, for example, menSocial situations vital for ed to offering and accepting food tioned going for pizza with friends well-being at shared meals. It is customary to and only eating salad. Many pizalways serve the guest something za places do not offer gluten-free The treatment of coeliac disease to eat, typically something freshpizza, and young people do not is distinctively social and public. ly prepared instead of yesterday’s always feel like making a big issue When diet is the treatment, meals leftovers. Guests are expected to of their diet in a group of friends. are always a treatment situation. taste everything offered and comHowever, meals are not just for sat- pliment the flavours. Sometimes people with coeliac ing hunger. Often they are social disease feel like they are bothersituations where people share not People with coeliac disease are ing others. Some find it hard to just food but also closeness and a forced to break these unwritten visit people because the hostess sense of togetherness. rules. They ask about the ingrewould need to reserve something dients of the food offered and its gluten-free especially for them. It is Many other chronic diseases can exact preparation method. Often so expensive, too! Others feel embe kept private if desired. People they must decline to eat the food, barrassed when they go for coffee with coeliac disease must inform and sometimes they eat things with a friend and need to find anothers of their disease in order to they brought with them. other café when the first has nothget safe food. Many people with ing gluten-free on offer. coeliac disease find it hard havIn this, people with coeliac disease ing to put themselves on display are forced to question the hospiThe coeliac disease touches more due to the disease. They are rarely tality of the people they are visitthan just the people with coeliac allowed to quietly be one of the ing. However, they have no choice. disease – it also impacts the peocrowd; instead, they must stand They must act heedless of social ple with whom they spend time. At out, ask and check. codes in order to treat their disworst, difficult experiences in soease. It does not always feel easy, cial situations may cause them to They are also exposed to constant and the people around them do withdraw from others and restrict disbelief and questions. It is really not always make it easier. Somesocial life. that nit-picky? What will happen times they are asked ignorant to you if you eat gluten? Even if questions. Can’t you have just a How does it feel to go without? the questions are innocent, being little taste? forced to constantly explain things Although awareness of the glumay start feeling stressful for peoten-free diet is constantly increasple with coeliac disease. ing, people with coeliac disease

FOR MORE INFO ABOUT CYE VISIT: WWW:CYEWEB.EU

At everyday meals, for example, people with coeliac disease are in a different position to people without a special diet. A well-being survey of people with coeliac disease conducted in Finland highlighted that many find meals a source of uncertainly, annoyance or sadness.

W 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

Coeliac Disease: Strain on Daily Life inevitably end up in situations where there is nothing suitable for them to eat. Attitudes to situations like this vary. Some people always bring something with them, just in case. Others say that they see the humour in such situations – unless they are hungry. If they are hungry, it is not funny if all they can have is coffee.

often a team effort at home, and family members take the dietary needs of people with coeliac disease into consideration. The person who understands may also be a friend or another person with coeliac disease whom they met through the local coeliac society. The most important thing is to have someone who understands.

When people with coeliac disease are forgotten or ignored, they easily experience difficult emotions. Am I important enough for others to take my diet into consideration? Why are others considered and not me? People with coeliac disease speak of annoyance and sadness. On the other hand, they also describe feelings of overwhelming joy when people have taken their diet into account in some situation, exceeding expectations.

Background investigation The facts presented in the article are based on the work of the Hehkuva projects of the Finnish Coeliac Society in 2012–2016. The project was aimed at finding out what contributes to the mental and physical well-being of people with coeliac disease and what impacts it.

written by people with coeliac disease, psychologists’ perspectives, thought exercises and insightful comic strips and videos. Quotes from people with coeliac disease “As a child, at friends’ birthday parties, I would rather not eat anything than dig out my own food.” “It still feels hard to visit people because I feel like a bother.” “Why do they make fancy cakes for the others and ignore one guest?” “I can’t go to the first coffee shop with a group of friends. I always need to check and investigate.” “My family sees the coeliac disease as a positive challenge. We come up with new delicious things to eat together.”

Experiences were collected, for example, through an extensive Importance of people who unwell-being survey of people with derstand coeliac disease. They and their family members were asked to Eeva Laine, Finnish Coeliac Because of the challenging situawrite about their experiences. The Society tions of daily life and the emotions project also included meetings Comic Strip: Tiitu Takalo they spark, it is important for peo- with hundreds of people with cople with coeliac disease to have eliac disease in group discussions people around them who underand other encounters. stand. If one receives occasional inappropriate comments, it is good The project developed methto also have situations where oth- ods and tools for supporting the ers are supportive of dietary treat- well-being of people with coements. liac disease. The most central of them is the website for gluten-free Typically, home is the haven of well-being, Suunta (www.glupeople with coeliac disease. The teenitonsuunta.fi). The Suunta realisation of a gluten-free diet is website contains stories and blogs

When were you diagnosed with coeliac disease?

It was then when we came up with the idea of telling our

hobby and it is still like that. How many visits does your site have? It depends. We don’t get the same results in a normal day than when we publish a new post. And it also depends on the kind of publication. When we posted about Maiia Thai, a Thai restaurant in Madrid, we had almost 600 visits in one day. How often do you eat out? Do you usually go alone or with company? Who chooses the restaurant? On average, twice a month. We love eating out but we do less than we would like. I rarely go alone, I usually go accompanied; and normally, Lucia is my companion. Obviously, as a coeliac, I usually choose where to eat, hehehe. What do you value the most when you go to eat out? For me, it is imperative that waiters, cooks and the rest of people who attend to us have, at least, the minimum knowledge about what coeliac disease is and how to avoid cross contamination. Taking this into consideration, I really appreciate a wide menu instead of only one or two dishes where you don’t have many choices to

FOR MORE INFO ABOUT CYE VISIT: WWW:CYEWEB.EU

experience through a blog so that others could discover places that we had already visited. In this way, I was diagnosed with coeliac disour intention was to help other ease in January 2013. At that time, coeliacs lose their fear. Our expeI suffered from some symptoms, riences are always outlined from a so my doctor did the test and I got coeliac point of view. the diagnosis 4 years ago. Are you the only one behind “Sin How was the beginning of your Gluten Por favor”? journey in the “gluten free world”? No, I’m not. Lucía has been with me on this adventure since the It was tough. I was almost 24 years beginning. She not only asks for old and I have never had any food gluten free dishes to share with restriction. One morning my doc- me, but we created Sin Gluten Por tor told me that I was coeliac and Favor (SGPF) together. I’m the comy life changed in a matter of min- eliac and ‘the face’ of SGPF, but I utes. From the moment I left doc- wouldn’t be able to maintain the tor’s office until now, I have never website without her. eaten gluten consciously. But I had to learn all about gluten, cross con- Is having the blog the same as tamination and how to live with a you imagined when you started? specific diet. It is a good question, but I’m not How did you get the idea to cre- sure what to say. When we startate your own blog? ed the project we only thought of sharing experiences to help othThe idea was born one night I ers, but we never imagined where went out to have dinner with Lucía this would lead us. We started as a in Alicante. On those days, we were always talking about coeliac disease and the difficulty and fear of going out just after having the diagnosis. I was still learning about the disease and my fear was if waiters or cooks… would know it either.

Interview: Sin Gluten Por Favor

...Interview: Sin Gluten Por Favor

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

pick from. Do you have a funny memory eating out as a coeliac? I remember one night in Alicante, we went to a new place. The first thing that we said to the waiter was that I was coeliac. He explained to us that some coeliacs had dinner there and there wasn’t any problem. The first dish he brought us was ensaladilla rusa, and what did we find on it? Gluten-bread sticks inside of the ensaladilla. With a huge smile, he told me: Don’t eat the bread eh! At this time, we realised that they didn’t know anything about coeliacs. We tried to explain what cross contamination was. It was late for us, but maybe not for the next coeliacs.

What would you recommend to the restaurants who want serve gf menus? I think the most important thing is that they have to know what coeliac disease entails. Offering a gluten free menu it is not only about a product that is gluten free by itself. The most crucial issue is the food handling process and cross contamination. Eating out as a coeliac, which was your best experience? Where and why?

We had a lot of good experiences around Spain and Europe. We have tasted a lot of delicious dishes and we have found a lot of wonderful places to eat. But, if we have to choose one, without any doubt it would be Tribeca. It is restaurant in Alicante that offers hamburgers, When was the last time you had hot dogs, sandwiches and a lot of a bad experience eating out as a starters. Almost the whole menu is coeliac? What was your reaction? gluten free, I had some substantial experiences, but I can’t consider them bad experiences. The most recent was in the city where I live now. They had gluten free bread, gluten free beer and they had some consciousness about cross contamination. But I thing they offered me a chorizo that contained gluten. I had a bad night.

and the food is amazing. What do you think about coeliac societies and what they do? A week after the diagnosis I signed up for the association in my city, and four years later I do not regret of that decision. From my point of view, they do significant and necessary work for the coeliac people. Thanks to them, everyday there are more safe restaurants where we can eat gluten free, and the list of gluten free food is broader and broader. To end, do you have some advice you would give to people who are afraid to eat out? At the beginning, I was also afraid of having dinner out and I had to get used to a new lifestyle. However, I decided that I could not stay at home just because of that. We have to continue enjoying life. They have to be brave. My motto is: “Celiac disease should not stop you”.

• • • • • • • • • • • •

• • • • •

400g ‘bomba’ rice Approx. 200g fine clams 8 Mussels 8 King prawns 250g chicken 150g peas 100g red pepper 200ml olive oil 100g crushed tomato 4 cloves of garlic 200g very finely cut squid Fish stock

Preparation Pour the oil in the paella pan and sauté the chicken and the cloves of garlic together with the tomato. When it is brown, add the squid and fry it all lightly for a few minutes. Then add the rice, the clams and the peas, and pour in the fish stock continuing to cook until it boils. Leave it for 10 minutes and subsequently add the mussels and the pepper strips. After a few more minutes on the heat, we put it in the oven so that the dish can cook through and the rice can absorb all the flavours.

¼ of a glass of sunflower oil ¼ of a glass of olive oil 180g of flower (Farina from Schär) Half of a teaspoon of salt 1 glass of the liquid of the sofrito

Mix all the ingredients and bake until it is homogeneus then extend in two pieces. For the padding

• • • • •

3 onions 1 slice of fresh tuna olive oil pinions parsley

Put the fresh tuna in water because it would be very salty. In a pan fry the onions and when them seem cooked add the tuna and the rest of the ingredients. Strain the result and sabe the liquid to use it for give flavour to the dough. Extend the dough making two squares, fill one with the padding and cover that side with the other square of dough. After that close the edges with one fork and paint it with an egg. Cook in the oven at 170º - 180º during 15 minutes.

FOR MORE INFO ABOUT CYE VISIT: WWW:CYEWEB.EU

For the dough

Ingredients for 4 people

Alicante-Style Rice C oca A mb T onyina