Celiac disease – the way of living

“Celiac is not a film shown in theatres only this May,
celiac disease is a way of living- every single day.”

 

May is the month dedicated to Celiac disease. Month in which we talk about Celiac in public, a month when people who suffer from Celiac disease gets more media attention. Or at least it should be this way. On the other hand, from my perspective Celiac is constantly present in my life. From the moment I wake up until I go to sleep, it permeates through all my daily activities. Starting from what I will eat in the morning, if I am too tired to make bread the night before, to what I will have for lunch, snack, dinner or something sweet. I don’t complain. I feel good, and I eat healthy and tasty, but imagine how easy it would be to go in the morning to a bakery and buy a hot, crispy loaf of bread and have breakfast! Or go to lunch with friends and pick whatever you want from the menu! Eat a cake outside. Go to a trip without 1kg of gluten free flour (just in case) and 1 packaging of GF bread (also just in case that you won’t find anything gluten-free on your journey). Eat a piece of cake at the Birthday party. Eat a sandwich with friends after a night out. Order a pizza on your home address. There are a lot of situations like these where you feel uncomfortable. Different.

 

“It is hard when you grow up
and overcome these problems
and then get a child who has
your celiac 
 gene.”

 

When you grow up, you stop paying attention to these things. You simply live your life like it is and in one moment these problems are not problems anymore. But it is hard to explain to a child that he can’t eat cake at a Birthday party. That he can’t take a cracker or a cookie from other kid in a park. That he can’t eat ice cream in a cone, and most of the other ice creams. It is hard for a teenager who is going to the school excursion and has to bring bread with him. Or who can’t go to a bakery in a school and buy a sandwich like other kids. Who will pretend that he is not hungry when other people on a party order pizza. Who will be afraid that a girl he likes won’t accept him because he is different. It is hard when you grow up and overcome these problems and then get a child who has your Celiac gene. When you get stressed because of every unusual poop. When you think about how he will go through all those hard situations you went through.

 

“The fundamental task for parents
of children suffering from celiac disease
is to get informed. All the time.”

 

The biggest problem of Celiac disease is not a gluten-free diet, but a society’s lack of knowledge when talking about problems of the disease. I am not afraid that my child may not be able to eat wheat flour, but what scares me is the whole process of diagnosing the disease, ignorance of pediatrician, nursery governess, teachers, chefs at restaurants who offer a gluten-free menu, producers who put a crossed wheat mark on products which contain more than 20 ppm of gluten, and parents who don’t understand the seriousness of the gluten-free diet and how much they will harm their kids if the diet is not strict. You can’t give your kid gluten contaminated cookie and close your eyes until he is eating it. You can’t let him try a piece of cake at a Birthday party because you are sorry when he is looking at other kids eating. Make him a gluten-free cake and bring it to the party! You can’t stay silent if he eats a burger with his friends because he did not want to stand out. The fundamental task for parents of children suffering from celiac disease is to get informed. All the time. When you think that you know everything- be sure that you don’t know. Even when a podiatrist of your child tells you something, ask for another opinion from a doctor who is a specialist in Celiac disease. The second task, but not less important is to transfer this knowledge to your child and to remind him every day of the importance of what he brings into his body. Don’t be embarrassed to ask a waiter a million questions, even in a gluten-free restaurant. Do not be embarrassed when someone offers you a cake that contains gluten each time. It is his or her shame that he didn’t even try to remember what you can or can’t  eat. Don’t feel sorry about your children, and crush their self-esteem. Teach them to love themselves and to have nothing to be ashamed of. Celiac is not a film shown in theatres only this May, celiac disease is a way of living- every single day.

 

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