Six years ago, I have been diagnosed with celiac disease at the age of 19 years. 

My symptoms started when I was 14 years old. The most dominant symptom was the weight loss - from 55 to 48 kg within only half a year. My other symptoms included headaches, iron deficiency anaemia and several other deficiencies like folic acid, vitamin B12 and Vit D. There were also signs of low bone density in an x-ray scan and I had amenorrhea for 1,5 years. I also suffered from irritability, moodiness and even panic attacks. So I went to see a doctor with my mum as I was not happy with my situation and really wanted to get help. But finally, both the doctor and my mum concluded it’s most likely that I have anorexia nervosa and that I should see a psychiatrist. My mum threatened me that if I don’t gain weigh, she will definitively send me to a psychiatric clinic. As a consequence, I decided to consume huge amounts of unhealthy sweats and greasy foods. Indeed, I gained 3 to 4 kg and even my period recommenced. However, the nutrient deficiencies remained. Over 2 years, I moved on with this strategy and didn’t see a doctor.

Finally, when I started to study medicine and moved out, my food habits changed: I had more pasta and bread instead of the potatoes that my mum had frequently prepared. Probably as a consequence of my increased gluten intake, I frequently experienced abdominal pain after the meals and sometimes even a bit diarrhea when having beer at student parties. And my other symptoms were still present, of course.

In the 2nd semester, there was a lecture about celiac disease and when hearing about the symptoms, I thought that this might fit pretty well to my situation. So, I went to see a gastroenterologist. A blood sampling revealed really high autoantibodies against tissue transglutaminase and my iron levels were very low with a ferritin of only 2ng/ml. An upper endoscopy was performed, biopsies were taken and the histopathology report indicated Marsh-Oberhuber stage 3C and high numbers of immune cells (intraepithelial lymphocytes). My mucosa was completely „flat“.

Although it was shortly before Christmas, I immediately started on a gluten-free diet. Initially, I had some diarrhea, but this was likely caused by lactose intolerance that I had developed secondary due to the villous atrophy. Fortunately, after half a year on gluten-free diet, the lactose intolerance resolved and I can have milk products again without any problems.

Since then I have never ever consumed gluten-containing food again, at least not voluntarily. And indeed, within a few months, almost all my symptoms resolved! I gained weight more easily, although I’m still lean. But I’m not so much struggling to keep my weight. My nutrient deficiencies resolved. I only got one intravenous iron supplementation shortly after diagnosis but didn’t take any other supplements. I still experience vestibular migraine, but much less frequently: instead of one event per week before my diagnosis, it now only occurs 5 to 6 times per year.

At first, it was very difficult to adhere to the diet. There was only one short dietary counselling how to adhere to a gluten-free diet, otherwise, I felt left alone. Another challenge was that I‘ve been vegetarian since I was twelve and I really don’t like meat. But in order to have a larger choice of foods, I transiently included meat products again at the beginning of the gluten-free diet. Fortunately, after 1,5 years on gluten-free, I could return to a vegetarian diet, because I finally discovered a large variety of lentils, beans and other vegetarian iron sources to cover my demand.

The most difficult issue is eating out. Usually, I have to prepare my gluten-free meals at home and take them with me. Although there was sometimes a gluten-free dish announced on the menu of the university cafeteria, it was often not available when I arrived or replaced by another, gluten-containing dish. Such situations were really annoying, because the only available gluten-free food was salad then, which didn’t really help to get satisfied and gain weight. It’s the same situation in restaurants. Once I ordered a salad with toppings and asked for gluten-free preparation, but finally the mushrooms were obviously floured to get them crispy…

Holidays are also challenging, particularly the breakfast, although some hotels indeed offer gluten-free breads. But gluten-free is also often misinterpreted as „lifestyle choice” or mixed up with vegan foods and there is only little or no knowledge what gluten-free really means. 

What also annoys me is that you have to check almost every food before you can eat it. This really does something to you.

At home, it’s much easier. I like to cook for myself and manage the diet very well. My boyfriend and I have separate toasters or other equipment and he prepares his gluten-containing meals or snacks in a separate part of the kitchen.

My family and friends were initially very supportive, but they still don’t really understand what a gluten-free diet means. They keep on offering me gluten-containing foods or beer at parties by saying „Hey, come on, one can’t hurt! “. Although I often explained my diagnosis and dietary needs, it seems some people don’t take it serious or rather believe I’m just having an eating disorder… 

Even physicians with expertise in gastroenterology don’t really know a lot about celiac disease. Shortly after my diagnosis, I went for the first follow-up visit under gluten-free diet and as I was on private insurance, the head of the gastroenterology department awaited me to discuss my blood results. His first question was if I’m taking my medication as prescribed – I was totally confused and replied that I adhere to the gluten-free diet. In this moment, he seemed to realize that he has no idea about the therapy of celiac disease and he continued by only asking innocuous questions…

Nevertheless, I’m doing very well now and get along with my situation. I successfully passed my exams at university and have just started to work as a resident in a research project at the university hospital. My aim is to become a pediatrician. 

However, I do hope that one day, there might be another remedy than the gluten-free diet, or even a cure from celiac disease. Maybe I will join a celiac disease research project one day and contribute myself to make this dream come true!

Photo by SHVETS production: https://www.pexels.com/photo/woman-getting-on-scales-in-studio-6975473/