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Celiac Around the World: Jessie from Germany


Jessie was 35 when she was diagnosed with celiac disease. She discovered there was a problem when she met a friend for dinner and had a sandwich. "I was sick for two days and couldn’t go to work." She began eating gluten-free and says it worked immediately. No longer did she have pain or "inner stress." She was a bit sad that she did not know what had been wrong for the past 35 years but she said "Finally I was able to understand so many things in my life."  


What do you find to be the hardest part of living with Celiac?

Jessie has many of the same struggles we all share with celiac disease. One of which is "being invited to dinner parties or BBQs and having to bring everything." She feels her friends and family are overwhelmed with making gluten-free food or "don’t care." Traveling is also difficult. She shares that "being on the road via car or train without being able to get a quick snack somewhere" is hard. It's also complicated when she meets her friends in the city. Jessie says she "always carries food around because you simply cannot buy anything quickly in my hometown (Hamburg, ca. 2 Million inhabitants)." 


As many of us can relate she is "always checking all the labels for secret ingredients because there are very few groceries labeled gluten-free. There is no standardized gluten-free label" on products. Similarly to many places in the United States when she goes out to eat "most of the time the waiters don’t know what gluten-free is and the meals are not labeled." Because of this she often only goes to gluten-free restaurants because she is afraid she'll get sick. However, there are very few gluten-free restaurants in Hamburg. "Because there are so few gluten-free meals to buy, I always have to cook for myself," and she always has to bring her food for work. "You can not join your colleagues for a lunch break in a restaurant."


Are there any positives that you feel came from your diagnosis?

As is the case for many of us, being gluten-free is not easy. However, Jessie points out a few positive parts of her diagnosis.

  • "I am much more mindful when it comes to food."

  • "I eat more consciously."

  • "I have started to love cooking and baking."

  • "I eat much healthier."


Do you know anyone else with celiac?

Jessie knows a few other people with celiac disease. She has a niece, who is 14 years old with celiac disease as well as a friend and some former colleagues.


Eating out in Germany 


Gluten-free hamburger Photo: by Jessie

How knowledgeable is the food industry regarding Celiac disease?

The food industry in Germany is not very knowledgeable, Jessie explains. "We have one big brand (Schär) and some smaller ones" that make gluten-free products. However, "it is difficult to buy other food, that should be gluten-free; you always have to check the labels for secret ingredients because no food is labeled gluten-free (like tomato sauce, ketchup, yogurt). You always have to check, because sometimes it contains gluten. Restaurants are annoyed if you ask about gluten-free meals and there is clearly a lack of education when it comes to celiac disease; most of the time people think it is a trend or a choice like vegan." This is a struggle for us in the United States as well.


Are the menus marked for allergens and gluten-free food?

Eating out in a restaurant is something Jessie does not often feel safe doing. She will often check with the restaurant beforehand to ensure they offer something "gluten-free or are a designated restaurant." Unfortunately, there are only a handful of dedicated gluten-free restaurants in Hamburg.

What is the easiest/hardest about eating out?

She finds it easiest to eat out if she is at a dedicated gluten-free restaurant. It's difficult at other restaurants because there is very little she can eat on the menu, and the staff are often uneducated about celiac disease.



Gluten-free fish dinner Photo: by Jessie

How common are Celiac/gluten-free dietary restrictions in Germany?

"Unfortunately the diagnosis is not very well-known; it took me 10 years and a lot of doctor visits with different doctors to get the diagnosis." Celiac disease "is not something the doctor checks at your first visit (or 10th). If you have to go to a clinic for surgery, most of the time they are unable to provide you with gf food."


Buying Gluten-Free food



Homemade Sushi Photo: by Jessie

Is it easy for you to find gluten-free options at the grocery store?  

"There are some options, but for me, I have to visit multiple different stores (5 or 6) to get all the gf groceries I need. Some stores just have a very limited range of products because German stores are much smaller than U.S. stores. There are some online shops, where you can buy gf bread or gf food." 


Are foods marked gluten-free?

"If they are gluten-free foods like bread or cookies, they are marked gluten-free. Other foods are not marked clearly, "you always have to check the ingredients."


What would you say is your biggest struggle eating gluten-free in Germany?

Jessie explained her biggest struggle is the lack of education about celiac disease. They don't truly understand what it means to have to eat gluten-free.


 Is eating gluten-free more expensive in Germany?

"Yes, definitely. Bread and every gf item is much more expensive and eating in a restaurant is also much more expensive."


Does the government help with the expense of gluten-free food?

"If you are diagnosed with Celiac, you can file for a disability."


 

Medication

 

Do you have to worry about gluten in your over-the-counter or prescribed medication?

"Yes." This is similar to the United States. Where you must speak to the pharmacist or call to find out what is in your medication.


Travel in Germany


If someone was coming to Germany for the first time, what would you say are the “must-see” spots?


"If you are into sightseeing you should definitely visit Berlin with the Wall, the Brandenburger Tor and Siegessäule, and all the sights."


Brandenburger Tor (Gate) Berlin, Germany

"Hamburg (where I live) is also nice when it comes to sightseeing; a big harbour, a Portuguese Quarter, Reeperbahn for Dancing and a lot of parks and walking paths near the two rivers (Alster and Elbe)."



Image of Hamburg Photo: by Jessie

"If you like nature, you should visit the beaches (both Eastern and Western), because they are so different. The North Sea has high and low tides and the Baltic Sea is simply beautiful. The weather can be rough in the winter or sunny in the Summer. I grew up at the beach, so there is nothing more beautiful for me."



Beach in Northern Germany Photo: by Jessie

"Munich is well known for the Oktoberfest - but I don’t drink beer and so I just don’t like it, but the mountains are amazing in Southern Germany. If you love to hike, you should go there.  Apart from that, some towns in Eastern Germany have a lot of history and old buildings like Weimar or Leipzig and Dresden."


Jessie and her dog Photo by: Jessie

Thank you Jessie for sharing more about Germany. It sounds like many of your struggles are similar to those in the United States. Depending on where you live in the United States it can be difficult to eat out. I hope that someday we will have greater education for the restaurant industry when it comes to having to eat gluten-free for medical reasons. I also hope that regulations will be put in place to require pharmaceutical companies to label their medication to state if there are allergens or gluten in their products. Thank you for sharing your experience as a celiac in Germany.

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