Living with celiac disease

Being diagnosed with celiac disease often changes people’s relationship with food. Some may not have paid much attention to what they ate before their diagnosis. Others might have already taken more care to eat well. For some people, changing to a gluten-free diet takes the joy out of eating at first because the choice of "allowed" foods seems so limited. But others are keen to experiment and discover new foods and dishes.

Following a gluten-free diet means having to make sure that any foods you buy really don't contain any gluten at all. You can find more information about which foods do and don't contain gluten here.

Gluten-free foods can become contaminated by foods containing gluten (cross-contact). Even breadcrumbs or flour dust can be enough if these foods are stored or prepared together. To avoid contamination, it can be helpful to use separate cupboards, drawers, bread bins and chopping boards. Kitchen appliances such as toasters and hand mixers increase the risk of contamination and are difficult to clean properly. There are re-usable “toaster bags” that make sure the bread doesn't touch the toaster. Another option is to buy a second appliance that you only use for gluten-free food. It is also important to check corners and crevices for crumbs when cleaning. Using separate spoons can help to prevent contamination of things like gluten-free spreads with flour or crumbs.

Switching to gluten-free foods can take a financial toll because they are often much more expensive. But a tax compensation rule for that was introduced in Germany in 2021. You can claim it on your tax return as a disability allowance. In Germany, people with celiac disease are generally considered to have a degree of disability of 20. In the year 2022, that meant they were able to claim a standard amount of 384 euros for the year.

There are still only very few cafés and restaurants with a completely gluten-free menu. But some do offer gluten-free dishes. You may sometimes have to check with staff that the dishes listed as gluten-free on the menu really are gluten-free: A lot of people don’t know that even the smallest amounts of gluten can lead to inflammation in people with celiac disease.

It can be daunting and overwhelming to have to think of all these things. Some people with celiac disease avoid eating out as a result. In Germany, people who are diagnosed with celiac disease are given a “celiac disease passport” (Zöliakie-Pass) by their doctor or support group. You can show it to the restaurant staff when you eat out, so they know you have the disease.

Occasions like birthdays and weddings can be especially challenging for people who are following a gluten-free diet. But there's no need to miss out on the celebrations if you plan ahead and make arrangements. And big events like weddings are planned far in advance anyway. That gives you the opportunity to let the hosts know and tell them what you need. If you would like to hire caterers yourself, it can be a good idea to check how much they know about celiac disease and if they can provide gluten-free alternatives. At barbecues, you can put gluten-free meat and vegetables (without a marinade or with your own) on a clean barbecue first, or use barbecue trays. You could take your own gluten-free cakes or salads along, too. Cooking together in smaller groups of friends can motivate them to find out more about gluten-free food and cooking.

People with celiac disease are sometimes anxious about traveling. But it's entirely possible to travel if you plan well. For example, you should make sure the hotel offers gluten-free food before booking. Self-catering holiday apartments are a good alternative.

When traveling abroad, it's a good idea to find out how to check food labels for gluten in the local language and how easy it is to get gluten-free products there. The product range in some other countries may be similar or even bigger than in your country. It might be a good idea to take a few gluten-free foods with you just in case.

Children with celiac disease can go to birthday parties or sleepovers, too. If your child eats at childcare or school, for example, it's important to talk to the kitchen staff about your child's dietary needs. Your child could also bring their own gluten-free ready meals or homemade meals along for the kitchen staff to heat up.

It is easier for your child to take part in group events if you speak openly with other parents, carers and teachers. Planning the food together and later addressing any problems that might have occurred can help you to improve your strategy for the future.

Last but not least, it’s important to explain what a gluten-free diet is in a simple way, so that other children understand what it means. After all, children often like to share food, candy and snacks with each other. Good information can also help pre-school children to know which foods have gluten in them, and which don't. For instance, the German society for celiac disease (Deutsche Zöliakie Gesellschaft) offers leaflets for children and teenagers in German.