Has someone died of celiac disease

Celiac Disease - Dangerous Crumbs

He forgot the one central sentence. Constantin Orrer * knows it by now. He always has to say it when he goes to the ice cream parlor with his 13-year-old daughter Elise *: "No waffle, please." Otherwise he did everything right. He has taken a close look at how the seller distributes the ice cream scoops on his customers' cups and croissants. Then he asked him which varieties are gluten-free and how they are made. It is very important that there is really no gluten in the ice cream. But he didn't say one sentence explicitly about it. Of course, the waffle ends up on the ball of chocolate ice cream in the plastic cup. Orrer's * daughter can no longer eat them. She has the autoimmune disease celiac disease. For them, the ice is now contaminated.

Celiac disease plays a minor role

For the unsuspecting ice cream seller just an annoying incident with a particularly difficult customer, such situations are commonplace for people with celiac disease. Due to the nutritional trend towards gluten-free living, more and more restaurants are adapting to it and offering appropriate dishes. The market leader for gluten-free products in Europe has also increased its worldwide annual turnover in the last few years to 347 million euros. But celiac disease often only plays a minor role, as Bianca Maurer, the former press spokeswoman for the German Celiac Society (DZG), knows.

It is often difficult for people with celiac disease to eat out. Because if you follow a gluten-free fashion diet for no medical reason, you usually don't stick to it consistently and don't care about the risk of contamination. As a result, those affected are taken less seriously when they explain that even the smallest crumbs can be dangerous for them. "Less acceptance and support in society leads to psychological stress. You feel excluded and restricted. This increases the level of suffering," explains Maurer.

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Chameleon of medicine

This level of suffering can become very high. Because celiac disease is a serious inflammatory bowel disease. The small intestine of those affected reacts to the smallest traces of the binding protein gluten in the food with pronounced inflammation. This can go so far that the intestine can no longer absorb enough nutrients. The inflammation is not only noticeable through diarrhea, gas and abdominal pain. Only around ten percent of those affected have these typical symptoms. Often they are children. So-called unspecific symptoms are far more common. That is why experts call celiac disease a "chameleon of medicine". The spectrum ranges from anemia to tooth enamel defects and also includes psychological problems and infertility.

This is also the reason why celiac disease is often not recognized in adults or is recognized only very late. In Germany it is assumed that every hundredth person is ill. But probably only about 10 to 20 percent of those affected know about their disease. Many initially show no symptoms of the disease. So the number of unreported cases is very high. About a quarter of those affected do not get the diagnosis until they are over 60 years of age. The problem is that it significantly increases the risk of chronic health problems and certain types of cancer, especially so-called intestinal lymphomas.

Many doctors simply don't know enough about celiac disease, explains press spokeswoman Maurer. Together with the Competence Network for Bowel Diseases, the German Celiac Society trains doctors and provides them with the latest scientific findings on this disease.

Even flour dust is too much

The only therapy: to strictly avoid anything that contains gluten. These include the grains wheat, barley, rye and spelled as well as emmer, einkorn and green spelled. It gets complicated because even the smallest amounts of 20 milligrams per kilo of food - i.e. a few crumbs or a little flour dust - cause inflammation. So it's not just about bread and pasta. Virtually all conventionally processed foods are therefore taboo for people with celiac disease.

The corresponding substitute products are now available in many supermarkets, drugstores and discounters thanks to the gluten-free trend. But they often cost three times as much. The DZG has calculated that people with celiac disease have to spend around 97 euros more per month on food. Ulrike Oelhoff knows that only too well. She was diagnosed as a toddler in 1968. In the meantime, she can look back on five decades of experience in dealing with gluten-free foods. In her childhood the offer was very manageable. Gluten-free foods were only available in pharmacies and health food stores and were not comparable in quality to today's products. At that time she could only have dreamed of today's offer. The price has also fallen massively. When she was a student, the price for gluten-free pasta was between DM 2.50 and DM 2.90. At that time, the gluten-containing pasta of her fellow students would have cost between 19 and 49 pfennigs. With a daily budget of ten marks, noodles were a real luxury for Oelhoff. "I only did that once a semester."

The trend as a double-edged sword

The increased selection, the lower price and the better quality of gluten-free substitute products make everyday shopping a lot easier for people with celiac disease. Nevertheless, the DZG is very critical of the gluten-free trend. Ulrike Oelhoff also sees it this way: "These self-proclaimed incompatible people ruin our reputation and acceptance in society. But they also ensure diversity in the supermarkets."

Constantin Orrer * tries to remain calm, even if there is always a risk of contamination: "Diet mistakes can happen. It is important that you come back to this consistency." He's going to have an ice cream with his daughter again this summer. The illness should not become their purpose in life. "I don't want my daughter to be defined by her celiac disease."

Advice and further information

- Advice and information on celiac disease and a gluten-free diet can be obtained from the Deutsche Zöliakie Gesellschaft e. V. (DZG) at: www.dzg-online.de **

- Comprehensive online courses on all aspects of celiac disease, for patients and relatives as well as for doctors and nutritionists, can be found at: www.zoeliakie-verhaben.de **

* Name changed by the editor

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