Chanukah has become a celebration of miracles and beautiful donuts. In Israel bakeries are transformed into edible art galleries, the humble donut being displayed in the most colorful and enticing form. At this time of year many visit the local bakery or mall with a mission to find the most tasty and delicious looking donut. That all important question on everyone’s lips – which donut should we try? But for my family, this is an activity we cannot enjoy together, as eating one of these donuts has catastrophic consequences for one of my children. My eldest daughter Eden has celiac disease, which means that the smallest amount of gluten is poison for her.
Gluten is a protein found in wheat, rye, barley and triticale – a cross between wheat and rye. Donuts along with other wheat based goods, such as cakes, breads and biscuits are an absolute no no for someone with celiac disease. Gluten is also found in many types of food, that you might not expect. Checking the ingredients of cooking sauces, seasonings and other products is essential to ensure a gluten free diet. The goods news for anyone with celiac disease is that all these products are available in a gluten free form.
I am grateful that today I can buy gluten free donuts and a whole variety of other baked goods and food items, which have been created for the gluten free market. Unfortunately they tend to be significantly more expensive than their regular counterparts; however they enable me to provide a gluten free alternative for Eden during celebrations, festivals and activities. When you are a parent of a child of celiac you have to work hard in order to ensure your child is not left feeling excluded and hungry!
Ten years ago I was shocked to discover Eden has celiac disease. Even more disturbing was realizing that if left untreated, it could cause dangerous illnesses such as depression, cancer, multiple sclerosis, infertility and more. The cure for celiac disease is an abstention from gluten. Initially I was really flummoxed, trying to navigate what having a gluten free diet involved in terms of food preparation and everything else associated with eating inside and outside of the home.
Eating differently from most people presents many challenges. I am still learning how best to ensure my daughter has a gluten free diet and able to eat happily alongside everyone else. I have decided to share what I have learnt so far, in the hope that it will help others facing similar issues to me and raise awareness amongst those who may not consider what it means to have celiac disease.
C- Community. Community is the biggest resource and asset to help a parent and child feel comfortable with celiac disease. Before any Chanukah party I buy gluten free donuts. They never used to look particularly appetising, but today there are some fantastic looking gluten free donuts to be enjoyed!
A children’s birthday party has the potential to become a disaster if a child with celiac has nothing suitable to eat. I’m not just talking about the cake, I’m talking about making sure that when everyone else is tucking into pizza, there is gluten free pizza too or at least an equivalent available. When my daughter was younger I always sent a message or called the parent in advance of the celebration to make sure they knew about her dietary requirements. I provided Eden with a piece of gluten free birthday cake (I would bake and freeze the cake in portions).
Beyond festivals and birthdays there are regular play dates, outings and meals. It’s really important that families continue to enjoy events and regular activities together. Once family and friends understand and know to ask, gluten free can become second nature for them too, avoiding any uncomfortable situations.
A child’s teacher and classmates need to be informed that a gluten free option must be provided when other children are enjoying a treat. Thankfully, most food is clearly labeled and there is plenty of variety. Eating gluten free does not have to be a burden on anyone. As the parent of a child requiring gluten free, it is my responsibility to give friends and family the tools to enable them to accommodate our gluten free needs.
E – Engagement. There is no need to be shy about celiac disease and its implications. Once a child is fully aware of his/her dietary needs he/she can engage with his/her community. It is important to make sure people know what’s going on with a child with celiac in terms of diagnosis and treatment. At three years old, my daughter was a little young to stand in front of the class to explain what having celiac meant. However, my son Aharon, at the age of 7, was old enough to do just that.
Aharon suffered from psoriasis. He also needed to change his diet and even though he doesn’t have celiac, he had to eat a low gluten and dairy free diet (nothing like making things a little more complicated). He stood up in class and explained his medical condition and how he was changing the way he ate. To this day the children are sensitive and accommodating to his needs. The parent class representatives always consult with me and provide a gluten free, dairy free alternative when needed. As long as people know, they can help parents and children be unphased by gluten free eating.
L – Love. No parent is going to love the fact that they have a child with celiac, but the truth is that any parent is much better off knowing their child has this medical condition. Fortunately the treatment is manageable. Every day our daughter Eden keeps to a gluten free diet, it’s another day that she is totally healthy.
I didn’t know what changes we would see once we changed her diet to be totally gluten free. Apart from low iron levels she really didn’t stand out as having anything particularly wrong with her. The doctor told me to wait and watch! I really saw my little girl transform before my eyes. It seemed like all of a sudden her hair and eyelashes grew. Her complexion changed and she simply blossomed. So, yes I do love knowing that she has celiac, it is indeed a miracle because, as a result, we are blessed with her continual good health.
I – Integration. Integrating a child’s dietary needs into a family’s eating habits is complicated. When I first found out that Eden has celiac disease I went into a crazy, militant “get rid of the gluten” mode. I even threw away a perfectly good bread knife! As time went on and we added more children to our family, I realized keeping a gluten free home was not possible. In addition to the cost, our other children became aware of foods containing gluten that they wanted to eat in the house. I now have to make gluten and gluten free pasta to accommodate everyone’s tastes. I try whenever possible to provide a gluten free alternative for Eden or everyone eats gluten free. It’s not always easy, but now my daughter is 13 it’s easier to communicate with her. I try my best to find a way that is good for her and good for everyone else. Flexibility is an approach you have to take when having a gluten free child. Of course there are times when it doesn’t work out and I think that’s why attitude is so important.
A- Attitude. I have a child who needs a gluten free diet. That means I have to be organized and make sure that wherever we go, she will be able to eat something. It means planning. I have to know where she can eat and sometimes I have to take something with me. I have to be one step ahead of the game all the time. Even with all my years of experience, it can still go wrong. Recently we went to a celebration and for whatever reason I didn’t contact the person making the event to ask about gluten free food. I should have checked in and reminded them, but I didn’t. My daughter, seeing there was hardly anything that she could eat, wanted to go home. I felt terrible for letting her down. As a parent, I need to be sure that I am clear and assertive to ensure her dietary needs are always taken into consideration.
C- CELIAC. Community. Engage. Love. Integrate. Attitude. Chanukah!
Being a parent of a child with celiac can be challenging, but it’s not insurmountable. We have an informed community and we engage them to help us to keep Eden feeling comfortable and safe. We love our daughter and integrate her needs into ours. With a positive attitude celiac disease is something that she has, but not something that she or we suffer from. With careful planning, we can eat and enjoy everything together, even donuts at Chanukah!