Living with coeliac disease
The gluten-free life
Starting to live with celiac disease can feel difficult at first. You often focus on the foods you now have to avoid. But once you learn what you can safely eat, you often realize that living with celiac disease doesn’t have to be such a dramatic change. With knowledge about ingredients and careful attention, it works very well. There is still a lot you can eat, and today there are many gluten-free options. Eating and cooking without gluten is now much easier than it sounds.
Gluten-free at home
Try modifying your recipes by replacing ingredients that contain gluten with gluten-free alternatives. Often, this works perfectly well. Instead of wheat flour, for example, you can thicken a sauce with cornstarch. And with staples like gluten-free bread, pasta, and flour mixes, you can easily adapt most meals. There are plenty of gluten-free recipes online and in cookbooks. Organize things practically so that you can easily handle gluten-free foods separately. No extra pots, plates, or cutlery are needed for someone with celiac disease, but they must be properly washed before use. Having a separate cutting board for gluten-free bread is helpful, or cut the gluten-free bread on a clean cutting board before cutting regular bread on it. Serve it in its own bread basket, and use separate serving utensils for gluten-free and gluten-containing dishes.
Gluten-free away from home.
Eating at friends’ homes or at a restaurant may feel troublesome at first. But if you say that you have celiac disease and cannot tolerate gluten, people are generally very understanding today. Many people eat gluten-free, and there are many gluten-free options. However, knowledge about gluten and a gluten-free diet can vary in society. Always say that you cannot tolerate gluten when you are at a café or restaurant. They should be able to tell you which dishes are gluten-free. When you are going to friends’ homes, it is important to inform them and ask them to check with you for advice. Maybe you can offer to bring gluten-free bread? Wherever you eat, you need to feel confident that the food is gluten-free. That is why it is necessary to ask and explain about gluten content and how the food is prepared.
Gluten-free when traveling, translation card for celiac disease
Celiac disease shouldn’t stop you from traveling. But no matter where or how you’re traveling, it can be helpful to check in advance what options there are for getting gluten-free food along the way and when you arrive. It’s a good idea to inform the travel organizer, as well as the hotels and restaurants you know you will visit. Bringing some kind of “emergency provisions” is also wise. The presence of gluten in other food cultures can differ quite a lot from what we’re used to in Sweden, so read up on the food in the country you’re going to. Awareness of celiac disease also varies greatly. If you are a member of the Swedish Celiac Society, we recommend downloading their celiac disease translation card with words and phrases that communicate what you can and cannot eat. They are available in over 40 different languages.
The dietitian as support
The dietitian is invaluable support for someone who has been diagnosed with celiac disease. A dietitian can ensure that the diet is strictly gluten-free, but without unnecessary restrictions. This is important because gluten-free dietary treatment is lifelong. Regular support from a dietitian is therefore necessary, and a first appointment should take place within 2–3 weeks after diagnosis. A dietitian can also provide individualized dietary advice, which may be especially important for some people. Since 2020, there have been national guidelines for nutritional treatment in celiac disease:
Dietary prescription and additional cost compensation
Children up to the age of 16 can receive a dietary prescription for certain gluten-free products at a subsidized price. The prescription is issued by a doctor—similar to a regular prescription. Today, the system works differently in different regions. In some regions, it has been replaced by additional cost compensation. Your child’s dietitian should be familiar with how this works and be able to guide you.
After the age of 16, there is no dietary prescription. In some regions, it is replaced by additional cost compensation in the form of a financial contribution or subsidies, but in many regions no additional cost compensation is offered at all. Your dietitian should know how it works where you live.
Notify your insurance company
If you have been diagnosed with celiac disease, you should notify your insurance company. Some insurance companies provide compensation upon a celiac disease diagnosis in the form of a one-time payment. This is because celiac disease is classified as 2% disability.