{Mini-Series Gluten} About diagnostic odysseys, gouty coincidences and life with gluten intolerance: an interview with a person affected - cooperation

T # 2: Dagmar Gaebler is a tremendously vital and energetic person - I notice that as soon as we greet each other. We have arranged to talk about gluten intolerance. From her I would now like to know first-hand how sufferers deal with the disease. With her sympathetic Berlin accent, she tells me about her situation, the lengthy diagnosis, the challenges of everyday life, how radically her life has changed through gluten-free nutrition and what she expects from politics with regard to gluten.

Dear Ms. Gaebler, how long has your gluten intolerance gone?

I have had gluten tolerance for at least 5 years. But she was diagnosed only about 1.5 years ago. It took forever.

What did you notice then that something was wrong?

You know - me At that time, there was no life at all. I had severe diarrhea 7 to 10 times a day, which surprised me in the most inopportune situation. At some point, I panicked about leaving the house because I was always worried that it would start again. And then you'll find a toilet within minutes. At that time I knew almost every public toilet in Berlin and even got a key for the disabled toilets for all cases.

That really sounds very unpleasant! The limitations you had to face were certainly enormous ...

Yes, sure. My husband and I could not eat or attend events. Cinema, theater - I could not do that anymore. Imagine, you are sitting in the theater and in the middle of the show you have to go to the bathroom in a hurry. First you fight in panic through the ranks outside and then they are at the door and can not go in. We have given that up gradually. I constantly looked like I was pregnant. My stomach was completely distended and very sensitive to pressure. At that time I did not fit into my wardrobe anymore and at some point only bought a lot of clothes - such as Walla Walla robes. It was awful!

What did your husband and family say about that?

That was a lot of stress, of course the whole family. Constantly I had these complaints. But I have to say that my husband did a great job. He was never mad, but took great care of it. Of course, my family was already very worried.

Did you go to the doctor immediately and what could he do for you?

Yes, I was because of the complaints to the doctor. That was a real odyssey. At first I was advised to do without fructose and lactose. I did that, but it did not get better in the long term. This was followed by several colonoscopies in which nothing was detected. At some point the diagnosis was irritable. It was assumed that the complaints had no organic but psychological causes. My husband was seriously ill at that time and therefore this assumption was probably close. In the whole time my complaints were there. At some point I ate only very irregularly, because I realized that somehow the whole thing had to be related to food. Of course I did not feel well. If you do not eat anything all day to avoid diarrhea, you are very weak in the long term. That led me to become a retiree.

You have been berated for complaints?

Yes. I had two visits to the medical officer.I liked my work so much - I was employed in a restaurant and loved the contact with the guests. My boss was very understanding, but in the long run that is not a condition. The medical officer has then agreed to the Frühberentung due to a diffuse intestinal disease. From then on, I was home.

And how was the gluten intolerance determined?

Do you know what - that was a pure coincidence. I wanted to get a prescription for painkillers from my GP. But he was on vacation and the young representative did not want to prescribe the pain medication because of the amount and dosage. She asked me into the consulting room, looked at my file, retold my story of suffering and said, "Have you ever heard of gluten intolerance?" I had never heard of it before. But since that moment everything has gotten better.

What did you do then?

First, I have to advise the doctor as much as possible gluten-containing foods were not used. The complaints were actually better. Then it was in the clinic and it was shown that I am gluten intolerant. With a nutritionist, I then learned in which foods gluten is included, what I can eat and what products I have to avoid. I am so glad that I had the help of the nutritionist at that time! Without them, I would have been incredibly hard to find out for myself. I can recommend anyone with incompatibilities only to take professional knowledge in any case. It makes things so much easier.

How did the gluten-free diet affect you?

The effect of Gluten-free diet was immediately there, the acute symptoms have immediately subsided. After a few weeks, I felt much better overall, was able to eat regularly and did not have to go to restrooms all the time. And after a while I was able to shelve the Walla Walla robes (smiles). My children and my husband were very happy that I felt so much better.

What has changed in your daily routine since then? Need to give up a lot?

I can lead a normal life again and do not have to do without so many things. When I am invited in the afternoon, I take my gluten-free cake with me. This is what my acquaintances know by now and that has become quite normal. In the restaurant I can order vegetables, meat and fish or salad. The important thing is that there are no pasta, bread or bound sauces here. That works quite well. My husband likes to cook and has become a real expert on gluten-free food. For hot dishes that we both eat, he uses special gluten-free products. When he bakes gluten-free, we both eat it. For breakfast, he continues to buy his normal bread and his normal sausage while I have my special bread. With the butcher of my confidence, I always have to ask if sausage products are made without gluten - that has always worked out well. In certain supermarkets, the sausage is even already featured in the fresh food counters. This is very convenient for me.

There are some food products in the supermarkets meanwhile characterized. Does this help you in everyday life?

To be honest, labeling is sometimes confusing. There are so many different labels on food - especially with the organic products. Often the gluten-free foods are included in the organic shelf.But for the employees in the shops, that seems logical. Therefore, it has happened to me from time to time that I have caught a wrong product. I always notice it immediately, that the abdominal pain and indigestion start again. Then I search directly in the kitchen and look with all products again very carefully until I found the culprit. I've also talked to the supermarket management about the unfavorable placement on the shelf - but that was not very enthusiastic about my presentation (smiles again).

What do you think should be improved or changed in the context of gluten-free diets?

Oh, there is so much! First and foremost, I want people to start thinking gluten intolerance not as a fad or as a whimsy, but as a serious condition. Because nothing is silly or monstrous - on the contrary. In addition, I have the feeling that just the older doctors would have to develop a little more there. You hear now and then that gluten intolerance is referred to as conceit or the doctors do not even consider this diagnosis.

In addition, I wish that the right information about gluten in society become more present. Also for the teenagers! They do not believe how often I see young girls in front of the gluten-free products in the supermarket. They stand there and say, "Look, it's gluten-free. Lady Gaga has just lost 15 kilos. We buy that. "I think that's terrible! Sometimes I get carried away, talk to the girls and explain the connection with gluten intolerance. They are always surprised that they did not know that before.

Shall I tell you something? That's why I even joined a party extra because I think you have to include the topic in your political work as well. But of course you do not have such a good chance of moving something directly from the base. Some of the members are also annoyed when I come back with my special topic around the corner. But I do not care - I put that on the table again and again.

What could politics achieve with gluten intolerance?

You know, there are so many people who rely on gluten-free products, but can not afford them. For example, think of resin 4 receivers. Or children with celiac disease in socially disadvantaged families. They can not even spend 200, - Euro more per person per month on gluten-free diets. In other countries there are health insurance subsidies for this diet. I would like to achieve that in Germany as well. Especially children with gluten intolerance do not have it easy. We have a family in our area with two children with celiac disease. It is incredibly difficult for the family to fund the children's diet. My husband and I wanted to support the family, and with much effort and dedication, we got the family to get a grant from the authorities for the food. That should be easier. My husband and I are still committed to it.

Ms Gaebler, thank you very much for taking the time to talk with me. I wish you continued strength and energy to achieve the goals you set for yourself.Schär, the gluten-free diet specialist.

Other gluten-related articles:

{Mini series part 1} Super diet or wellness from the inside? What is really behind this diet trend "gluten free" and what we can expect from it.

{Mini Series Part 3} The 5 most important tips for a gluten-free day and 10 points where you realize that you gluten maybe do not tolerate.