Jan Jonathan is ten years old and has been consistently following a diet every day for more than half his life, without eating many tasty things. As a celiac disease sufferer, the fifth-grader often has to suppress what is normal for his friends.
Sometimes the boy dreams quite desperately of kebabs or ice cream parlors – everything is taboo for him. As soon as he eats something that contains gluten, he is threatened with severe stomach pain, diarrhea and vomiting.
Celiac disease – what is it?
Celiac disease is not an allergy, but a chronic and lifelong autoimmune disease. If left untreated, it can cause severe symptoms and have serious consequences in children and young people, such as delayed growth and failure to thrive and development, as experts emphasize on World Celiac Disease Day on May 16th.
Pediatric gastroenterologist Jens Berrang from the Dortmund Clinic checks Jan Jonathan thoroughly. The child has his blood drawn without batting an eyelid. It’s far from the first time. “Sometimes it’s bad when the others have something better to eat,” the boy tells the doctor.
He can’t go to the school cafeteria. This is because the gluten protein is found in grains such as wheat, oats, barley, spelt and rye – and is also hidden in many foods and dishes. And even the smallest amounts are indigestible. It’s tricky. When their son visits friends, goes on a school trip or is invited to a birthday party, they give him gluten-free food, say his parents Valentina and Robert. They have been trained by a nutritionist and have changed everything at home.
About one person in a hundred people is affected
According to recent studies, the Celiac Society (DZG) assumes that around one percent of the population is affected. In addition, there is a high number of unreported cases. Many sufferers with atypical or only minor symptoms are unaware of their autoimmune disease.
The onset of the disease is possible at any age. According to the DZG, it remains undetected in childhood for years or even decades due to sometimes mild symptoms. According to the Professional Association of Pediatricians and Adolescents (BVKJ), people often become ill between the ages of one and eight years or later between the ages of 20 and 50. The Dortmund doctor Berrang says: “For some it breaks out at the age of five, for some at 35 – we don’t know why that is.” Many children of primary school age come to his gastroenterology outpatient clinic.
There are numerous symptoms and they can be non-specific
Signs of celiac disease can include diarrhea, abdominal pain, bloating, nausea and vomiting, but also weight loss and chronic fatigue. The DZG explains that there are patients with elevated liver values, circular hair loss, chronic headaches or migraines.
Even small amounts of gluten lead to inflammation in the intestinal mucosa. The body fights the gluten, creates antibodies against it – and these antibodies attack the structure of the small intestine, which can lead to a number of problems. Over time, the surface area of the small intestine can decrease so much that the body can no longer absorb enough food components and deficiency symptoms occur, explains the professional association of pediatricians.
At the age of four, Jan Jonathan was already rolling on the floor for days with extreme stomach pain, his mother describes. A bloated stomach, sticky stools and severe diarrhea are also typical. But the symptoms are not always so severe and obvious, they are much more often non-specific – and that can also lead to a late diagnosis, as Jens Berrang explains.
Irritable to aggressive behavior and depressive changes are also observed, adds his colleague Friederike Stemmann. “Celiac disease is a chameleon.” The pediatricians’ professional association also names rickets, muscle weakness, damage to tooth enamel or blood clotting disorders as possible consequences of untreated celiac disease.
It doesn’t happen without tears
First-grader Carlotta (7) from Düsseldorf has also been on a diet since she was four. “It’s very difficult for her that she’s the only one who’s never allowed to just grab something, that she always has to ask and very often has to go without. It doesn’t happen without tears,” says her mother Anna Maria.
“Carlotta lacks her carefree attitude because of her illness. She is very sensible for her age and seems almost grown up.” The girl’s greatest fear: “That she will accidentally eat something containing gluten and then have to throw up, at school or at her friends’ house.”
Since she was a baby, Carlotta slept a lot, ate noticeably little and was light. The family asked the pediatrician’s office again and again, and then the diagnosis came. The child is receiving good care at the university clinic. “You don’t notice anything about Carlotta anymore. She now has a normal weight, is a normal height and sleeps normally.”
She is shown a lot of understanding in the daycare center, school environment and circle of friends. And more and more products without gluten are coming onto the market. “We try to offer her alternatives as often as possible,” reports Carlotta’s mother.
There is only one therapy
Regular examinations are important for celiac disease, including blood tests, because it is not uncommon for a deficiency in vital substances to develop. Jens Berrang knows that a diagnosis can now be made quite easily with two blood tests. Knowledge about the genetically predisposed disease is also increasing among practicing physicians. There are no medications yet. “The only treatment is complete, lifelong avoidance of gluten,” emphasizes the gastroenterologist.
Not all of the complex relationships with celiac disease have been clarified. Research is being carried out – also with a view to medication. DZG spokesman Peter Wark describes that more than a dozen clinics and study centers are involved in the development of a remedy that is intended to mitigate the consequences if something containing gluten is accidentally consumed. When it could come onto the market is unclear.
Meanwhile, at home, Jan Jonathan reaches into a drawer that his mother keeps filling with one or two gluten-free treats. And one thing has long since become a habit for the student when it comes to food products: “I always read the list of ingredients first.”
