About 10 years ago, when I was 39, my celiac disease was finally diagnosed.

Retrospectively, I assume that I was already suffering from it as a toddler. My mother told me I was always very angry if she didn’t serve my meals in time. I also developed neurodermatitis that affected mainly my knees and elbows. During school age, I often had headache, vomiting and dizziness and my second teeth showed dental enamel defects. The headaches became even stronger during puberty. And I frequently experienced abdominal pain after the meals as well as a typical, strange taste.

At least the neurodermatitis improved during adolescence. But instead, I got blistering skin rashes that were either classified as contact dermatitis or hives. I severely suffered from it from 8th to 9th degree until graduation and used bandages to cover the affected parts. I also got different topic corticosteroids or other topic treatments.

My teacher told me that I’m a „slow personality“ as I was always rather moving slow and felt tired all the time. When my friends and schoolmates started to go out and party until midnight, I couldn’t really join them as my body forced me to go to bed early.  

When my symptoms, particularly the hives, were getting worse again around the age of 22 years, I decided to start on a strict, „healthy“ diet based on fresh foods and self-cooked meals. For example, my breakfast was mainly based on yoghurt with fruits and oats. I also consumed a lot of buckwheat or other less common and mostly gluten-free grains. Due to this food choice, my diet was not gluten-free but by chance rather low in gluten. After a while, I felt much better, the abdominal pain disappeared and headache attacks were less frequent. During this phase, I studied nutritional sciences.

Around 30 years of age, my nutritional habits changed again: I started to eat more „regular“ food and also more bread based on gluten-containing flour. I didn’t only cook myself but went eating out more often and I also consumed a beer sometimes. As a consequence, the hives and other symptoms returned.

I was often cold and felt hypoglycaemic; my body was sometimes shaking and trembling. So I thought I might have problems with my blood sugar levels, or maybe with my thyroid gland. Finally, my general physician checked my thyroid autoantibodies and diagnosed Hashimoto thyroiditis, but he didn’t refer me to a specialist to confirm his findings. I decided myself to visit the nuclear medicine unit for further diagnostic measures and follow up and was told that my thyroid levels were fluctuating, but there was no need for treatment yet.

As I had already read that Hashimoto is associated with celiac disease and as I still frequently suffered from stomach pain, I had the suspicion that this might apply to me as well. Thus, I went to a gastroenterology practice and I had two upper endoscopies there, but without getting any findings or diagnosis. I have no idea if they checked my blood for antibodies or took biopsies from the duodenum during the endoscopy.

But my stomach ache persisted. A friend of mine encouraged me to see another expert, so I made an appointment at the university hospital. They did a third endoscopy; biopsies were taken and the histopathology report revealed severe villous atrophy.  However, my blood was not analysed for celiac disease specific antibodies. When I had already started on a gluten-free diet for some weeks, I read that the celiac specific autoantibodies are an important diagnostic parameter and that my diagnosis is actually not confirmed yet. Consequently, I started to eat high amounts of gluten-containing foods again, which was not a pleasure ride at all. But I really wanted to assure the diagnosis. Three months after the endoscopy, a blood sample was taken, although the gastroenterologist was not considering it meaningful. But I insisted to do it and the high auto-antibodies against tissue transglutaminase confirmed the diagnosis.

When I started on the gluten-free diet, the new situation was initially stressful for me. I tried several gluten-free ready-to-eat meals. I just wanted to eat and prevent this feeling of hypoglycaemia and shaking in my body.

But within a short period, I got along very well on gluten-free and my symptoms improved substantially. I still suffer from dizziness and abdominal pain sometimes, but less frequently than before. I also have a pollen allergy which may cause cross sensitivity against certain foods occasionally and this may explain these symptoms as well. The hives disappeared, I don’t feel tired or „shaking“ anymore and the strong taste after meals has gone. My follow-up check-ups also confirmed that my diet works.  

Today, I get along very well with my situation and with the gluten-free diet. I usually prepare all my meals myself. Fortunately, there is a huge variety of gluten-free products available nowadays. But as many other patients with celiac disease, I avoid eating out as I’m not in favor of explaining and defending my gluten-free needs at the waiter. But if other people are fussing or making jokes about my gluten-free diet, I don’t care at all.

Photo by Karolina Grabowska (pexels.com)