The good thing about celiac disease is that you can treat it just by changing your diet

I am grateful that our pediatrician didn’t give up and kept looking into things: “If something is wrong, we’ll find out what. We're not just going to say ‘her belly ache is probably psychosomatic.’ We’re going to keep digging.”

Along with other tests, they checked certain antibody levels in the blood that are higher in people who have celiac disease. And they saw that those levels were over ten times higher than normal! The diagnosis was then so clear that they didn't even need to take a tissue sample from the small intestine.

The doctors have now checked the blood levels again after six months of being on a gluten-free diet and the results are encouraging: The antibody levels have gone down a lot. They still aren’t where they should be, but we now know that we’re on the right path.

The next check-up is in three months. I hope Lena will be able to start eating gluten-free oats after that. If you have celiac disease, you’re allowed to include them in your diet once your blood levels are back to normal.

We first learned all the basics when we went for professional dietary advice, especially things like how to stick to a gluten-free diet and which cereals contain gluten. It’s not only wheat, it’s also things like spelt, barley and rye.

We were surprised by how many convenience foods contain gluten as a substitute or additive, like ready-made sauces and gummy bears. Even fries can contain gluten if they're dusted in flour.

So our first few gluten-free shopping trips took a very long time. I read all the ingredients very carefully.

I did find it very difficult when Lena was diagnosed with celiac disease. I felt like crying. I felt sorry for her, and I would have traded places with her if I could. It made me sad to think that she would never be able to just go to a restaurant and enjoy a meal with friends when she’s a teenager or adult.

But now I know that it can work out if you get used to it and always take something to eat with you. At first, I spent hours on my smartphone reading about what you can and can't eat.

One thing became clear to me: The biggest problem isn’t cutting out gluten, but avoiding contamination.

Especially in restaurants, at friends’ houses or at school, lots of people don't understand that they have to be incredibly careful not to spread gluten through crockery, cutlery and cooking utensils.

Of course, Lena can eat fruit – there’s no gluten in there. But if her friend’s mum cuts the fruit on the same wooden chopping board that she used to slice some bread, she can’t eat it. Bits of gluten still get stuck in the grooves on the board even after washing it. It’s the same with waffle irons, toasters and hand mixers.

Lena’s symptoms have definitely improved, within quite a short time. She does still have a belly ache now and then, but nowhere near as often as she used to. And she hasn’t had any headaches in the last six months. The pediatrician could see on the ultrasound scan that her belly was much less bloated.

It does take up a lot of my time. I only work half days, and I was actually about to start working more again just before the diagnosis. But then I made a conscious decision not to.

I want to make sure my daughter eats healthy and I want to cook and bake as much from scratch as possible.

We have made changes at home and cook completely gluten-free for everyone. That means we don't have to cook two different meals or store everything separately. And I want Lena to at least be able to relax at home and eat whatever she feels like.

Celiac disease does take a financial toll as well because it’s much more expensive to eat gluten-free. But in Germany you can apply for a degree of disability of 20. That way, you at least get tax rebates to balance out the additional costs.

Many people don't realize that even the smallest amounts of gluten trigger an immune system response in people with celiac disease. If I tell friends or people in restaurants, lots of them give me a funny look and think I’m exaggerating.

I then remind them that celiac disease isn’t just an intolerance. That's a common misconception. It is actually an immune system disease.

It is always a risk to eat in normal restaurants. Lots of people think it's enough to just use gluten-free pasta and the rest is fine. But it's a question of how everything is prepared, not just if the ingredients are gluten-free.

That’s why it’s important to discuss the details with those serving you, or ideally with the chef. Our best experiences have been when the owners have celiac disease themselves, then you needn’t worry.

Facebook groups for people with celiac disease have really helped. Sharing information with other people, especially in the local groups, is very valuable. We’ve picked up lots of practical tips and always know about the latest cafés and restaurants where you can go without having to worry.

Lena was pretty relaxed about it all at first. All of a sudden, she had to stick to a diet and be really careful about what she ate. But after a few weeks she did ask if she would have to do it forever. She didn’t really understand what the illness meant.

But there are upsides to that as well: I give her more candy than I used to – gluten-free, of course. And she doesn't have to eat school meals anymore either – she didn't like them before.

The diagnosis and restrictions have still had an effect on her, though. She is unsure of her own abilities, which really shows at school. She ended up rubbing holes in her books with her eraser because she was never happy with her work. Even though she’s a really good student. Celiac disease is challenging to live with, of course. All of a sudden she has to be cautious, be perfect and not eat anything wrong.

My husband and I have had arguments because we each have different approaches. I started to read a lot about the whole subject from the very beginning and was already about twenty steps ahead of him.

It’s also a question of speed. He couldn’t keep up. In our family, I’m the one who takes care of all the day-to-day kids' things.

Getting an early diagnosis was really good and can’t be taken for granted.

I can see the upside of it all: Lena will have to deal with restrictions, and it’s annoying to always have to be so careful. But she will still lead a happy life. And not many people with an immune system disorder can say that.