BY RAQUEL FERREÑO AND ANNABEL SAAVEDRA.–Are you a little coeliac or coeliac at all? Questions such as this one are often faced by people like Olga Cuesta, president of the Associació Celíacs de Catalunya and also coeliac herself, when she is going to eat at a restaurant. To which she responds: “Hey, are you a lot or a little pregnant? You are or you are not, right?”.
Every day are more people suffering from coeliac disease –it is estimated that almost 75,000 of people have it just in Catalonia–, and this has helped to make society aware of it, especially with children. However, there are still many myths and misinformation, which have become a fashion. Although the trivialisation of consumption of gluten free products has helped to normalize prices a little, incidents in restaurants, factories or schools, where the product is manufactured, have increased by 600 percent in the last three years, creating consumer doubts. Olga Cuesta answers to QHE questions about living a normal life without ingesting gluten.
QHE- What is a coeliac disease?
It is an inherited autoimmune disease that manifests itself with the intake of gluten.
QHE- What is gluten?
It is a vegetable protein found in different foods such as rye, barley, spelled, kamut®, triticale and in some varieties of oats.
QHE- What is the diagnostic process of the disease?
The tests are not overly complicated. An analysis confirmed with a biopsy and a doctor. The disease can show itself in different ways, which makes it confused with others issues such as migraines, for example.
QHE- In which ways does it manifest itself?
The most common symptoms are headaches, recurrent diarrhoea, weight loss, abdominal pain, bloated belly, depression, etc.
QHE- There are many products that have got the term "gluten free" in their labels. Are they 'safe' for a coeliac?
This terminology comes as a result of a European regulation that, of course, what it has done is to confuse the coeliac costumer. There is a difference between "low in gluten" and "suitable for coeliac". In the diet of a coeliac the food should contain at most 20 parts per million –20 mg/kg– of gluten; which is what the medical community considers an acceptable intake of the protein for coeliac. From the Association we reiterate that only products with a clear "gluten free" tag and "suitable for coeliac" has to be consumed.
QHE- But in addition to this difficulty in labelling, being coeliac is expensive.
Exactly. The cost of the staple food differs from a coeliac to a non-coeliac in about 1,300 euros per year. The cost of the products is, therefore, 300 percent higher. We must clarify that the coeliac does not make a "gluten free" diet for pleasure. Eat products with gluten free ingredients are their medicine. In addition, from the Association we try to get all the possible agreements with food stores and also with the International Red Cross, to help and protect the coeliac families who, because of the economic crisis, have been punished.
QHE- Do you also have personal advice?
Yes, it is one of the most complete works done by the Associació Celíacs de Catalunya throughout the Catalan territory. We have specialists who listen and help our associates at different stages of the process, especially when the person has just been diagnosed and feels alone. We also offer training courses through agreements. In this way, food stores, for example, know how to identify a gluten free product, how to manage it, how to offer it, how to cook it and can give that information to all families that need it.
QHE- Tell us about your experience with coeliac disease.
My experience starts with my daughter, not with me. She was diagnosed with coeliac disease at the age of two. She was a very irritable baby and everything came from her temper. She is currently a 14 years old teenager and does not have any problem with the disease. In fact, her taste and knowledge of food has always been "gluten free" because she has not tried anything else.
As a result of her diagnosis, I knew that I also had the disease. However, since I have been following the diet I am great. My life has changed. I do not feel pain at all and I stopped going from doctor to doctor. Also, I think my surroundings perceive it because I am more cheerful than before.
QHE- What advice would you give to people who have just been diagnosed with the disease?
They should look for a psychological support. When there is a coeliac in the family and this person is the first, people tend to feel alone. The child accepts it as something natural, but in adults the change of diet, habits, shopping and cooking can be lived with anxiety.
QHE- It seems that eating "gluten free" has become fashionable. Do you think that this diet has been trivialized?
Absolutely and it has lost importance, as if following a "gluten-free" diet was healthier. There is no scientific or medical study to support this. Only coeliac and non-coeliac gluten sensitive individuals are indicated to remove the protein from their diet.
QHE- Currently, many establishments offer "gluten-free" food because of this fashion, are they 100% reliable?
Here is our war. Offering "gluten-free" food does not indicate it is suitable for coeliac. You have to be careful with the ingredients and also with the elaboration of every dish. If you have cooked a fry with wheat flour in the same pan that you are going to cook gluten free food, the product is already contaminated and the coeliac cannot consume it. We have found cases of coeliac people, who are asked "are you a lot or a little coeliac?" to which I answer: “Hey, are you a lot or a little pregnant? You are or you are not, right?”.
QHE- Maybe restaurants are not interested in offering coeliac menus for the cost of producing them...
I will give you an example. If I am going to eat out on a Sunday, the first thing my family, co-workers and friends ask is "where do we go, that you feel comfortable?". This means that not only I am going to eat at that restaurant, but I also drag the whole group with me. If the coeliac knows a place that gives them security, they will return, for sure.
QHE- The coeliac consumer is faithful, then.
QHE- Is there an official certification indicating if an establishment is suitable for coeliac?
No. We are the only agency that does the job of certifying restaurants as "suitable for coeliac". We get the places through social networks, our website, etc. The work is huge, but we try our best to ensure the safety of coeliac.
QHE- What can you tell us about coeliac disease in schools?
It is a territory that neither is controlled by any administration. Schools are given the option to choose a catering with a gluten free menu. But they use us as an agency to ensure that food is safe and suitable for coeliac children. In addition, we pick up many incidents from families complaining that their children has been bulled by using different cutlery or have sat separately. Controlling coeliac disease is usually simple. What is not easy is to make society aware that food is our medicine.
GETTING PERSONAL, BY ANNABEL SAAVEDRA
El Mussol, in Barcelona.
Many years ago, “Lost”.
Menorca or La Vall d’Aran (Catalonia).
Menorca or the mountains.
My grandma’s stories.