diagnosis celiac disease

by Nele

How did my diagnosis of celiac disease come about?

Everyone has their own story and everyone has probably already gone through a bad time and stress to finally get the certainty through the diagnosis of celiac disease or sprue.

For me it was the case that after an operation I had digestive problems that did not want to get better even for months, but got worse and worse. It took a lot of persistence to convince my doctors to get to the bottom of the problem and not to dismiss it as an aftermath of the operation. A lactose intolerance test was only carried out when things weren’t getting better after a year. For this I had to take pure lactose and then the lactate value in the blood sugar was tested at regular intervals. It turns out that I have a partial lactose intolerance. Then I changed my diet for the first time.

It also got a little better for a while. But this only lasted for a short time.
I went back to the doctor and did another fructose test. It turned out negative and then I was diagnosed with irritable bowel syndrome. The only treatment is treating the symptoms and reducing stress. Well, then I didn’t want to accept that.

So I asked for more testing. The doctor then asked me whether I was sticking to the lactose-free diet at all. I felt the question as an insult because I was very strict about it.

Through my own research, I learned that some tests are also carried out for celiac disease or histamine intolerance if there are problems like mine. So I wanted to do these tests too. It took me a lot of energy and tenacity to get an antibody blood test for celiac disease because my doctors didn’t believe celiac disease was an option at the time.

At the time I had been living with complaints for almost two years. When the test result was there, the doctor said it was positive and that I would have to do a biopsy to see if the celiac disease could be confirmed by worn villi, but she still doesn’t think this is the case. Then I changed my doctor within the specialist practice and had the biopsy performed. Shortly afterwards I got the double positive diagnosis. It’s Celiac Disease!

What changed after the diagnosis of celiac disease?

My new doctor prescribed me at least three sessions with a nutritionist. They were great, I was told what celiac disease is, what it means and what to look out for. At that time I lived in a shared apartment and the nutritionist gave me help sheets for living in a shared apartment. Unfortunately, one of my roommates said I shouldn’t queue up like that and left traces of gluten all over the kitchen, so I bought new pots, plates, etc. and then stored them in my room. In the long run, however, that annoyed me, so I looked for my own apartment.

When I moved into the new apartment, I bought all appliances that often touch gluten (e.g. baking pan, hand mixer) and disinfected everything else that had already touched gluten, as I was told in the nutrition advice session that only gluten can be removed by alcohol.
When that was done, a gluten ban was then put in place for my own apartment. Maybe a bit strict, but when friends came to visit and they had something containing gluten in their bag, the bag had to stay at the entrance and it was not allowed to be eaten in my apartment. Or when we partied, I would provide gluten-free beer or wine, as I didn’t want any liquid gluten in the apartment either.

This turned my apartment into a gluten-free oasis.

At the very beginning I used the books from the DZG to go shopping. But that always took forever and was very inconvenient that my nutritionist wrote me a list of what to look for with the ingredients and what not to buy. That was then better, but of course I became a bit loyal to brands, because I knew certain brands are gluten-free and therefore shopping was faster.

During my family visit, new jam jars etc. were opened for me or everything was just taken out of the jar with a spoon and shaken down at a distance from the gluten. At the very beginning we needed almost all of the spoons from the cutlery box, as the distance was forgotten again and again and the spoon was thus contaminated.

At that time, the EU Food Information Regulation did not yet exist, according to which allergens must be labeled. Unfortunately, the chefs in restaurants often couldn’t say whether they had thickened something with gluten-containing starch or whether it was cut on the bread board, etc. supposed friends no longer asked when they went out to eat. I got misunderstood because I didn’t always want to share the overpriced gluten free products. But hey, I was a student and back then (not even today) you could find something to eat on every corner. If I then found a gluten-free muffin, paid an overpriced price and then every time all the curious friends wanted to try what a gluten-free muffin tastes like, sometimes to poke into my muffin with their contaminated fork, I would say “Stop” out loud or hold the hand with the contaminated fork or just said no and that they could try another time. I tried to explain why I act like this, but often I was branded as being too exaggerated or that I just want to be the center of attention because I was first lactose intolerant and then suddenly gluten intolerant, which was next. When I explained that I have both and that the diagnosis is difficult and sometimes takes longer, that something is added or that other intolerances can be improved through a gluten-free diet, some did not want to understand.

What is positive about the diagnosis?

On the one hand, I rate positively that I now know who my friends really are. Anyone who bakes a gluten-free cake for me for my birthday and then adds “I even disinfected the bowl and baking pan beforehand” or who made sure that there was something gluten-free at a party or that gluten-free was placed far away from the gluten-containing food. Anyone who still invited me to eat together in restaurants and asked in advance where I can eat or called the restaurant themselves and asked. Who understood that I don’t want to be the centre of attention at all, that I feel rather uncomfortable.

I also learned to appreciate the little things in life. When I discover something that I have never been able to eat or have not been able to eat for a long time, I am absolutely happy. The feelings of happiness then usually last for several hours, sometimes even days.

I learned to enjoy the little things. If I get an ice cream in a gluten-free ice cream cone, for example, everything around me doesn’t matter. I enjoy licking my ice cream, the time, the day or I dare to say “everything please” in a gluten-free bakery.

I’ve learned to invest in myself, listen to my body, and place more emphasis on good quality food.

I also got much better at cooking and baking. I also dare to try more difficult recipes.

In short, the road to diagnosis and the initial period afterwards can be difficult, but there’s not all that bad about a forced gluten-free diet because of a celiac disease diagnosis.