Knowledge about your illness and your mental state are closely linked. That is why I want to discuss these two topics together, as one influences the other.
In the long run, the best care can only be of limited success if you do not also feel psychologically well. The better you understand your celiac disease, the more positively it will impact your quality of life.
A celiac disease diagnosis often results in a drastic change in behavior for those affected. You may have observed this in yourself, too: you bring your own food when you are invited somewhere, you might eat out less often or not at all anymore, and your desire to travel has also significantly decreased.
Many develop major concerns about whether gluten has accidentally ended up in their meals. They often feel isolated because they have to set boundaries regarding their needs and may not always want to express them. This can escalate to the point where thoughts revolve around food all day long. After the meal is before the meal! Because as soon as you are full, the question arises again: What will I eat next? Where can I get it? And - is it safe for me?
When I talk to people with celiac disease about what is hardest for them, the answer is usually: The diet goes well at home. Everything has become routine. But as soon as I leave my home, it gets difficult.
And that is also what the studies on this topic say, regarding where the most problems are for you:
Reading the list of ingredients is often difficult because everything is written in a very small font and because correctly identifying potential traces of gluten is not entirely straightforward. Therefore, I will explain this to you in detail shortly.
You always have to explain yourself and potentially correct others when they have the wrong idea about a gluten-free diet.
There is always a certain uncertainty as to whether the cook is doing everything "right".
Getting gluten-free food in the cafeteria or participating in certain activities can pose a challenge.
Finding safe products in other locations or even in another language is a challenge.
How do those affected deal with this conflict between diligence and dietary errors?
Some patients choose to make mistakes deliberately when they find it too uncomfortable to keep having to explain themselves and their different diet. This is naturally not desirable for the gut or the entire body, as the disease cannot settle in this way and symptoms may persist. However, this is accepted in order to avoid having to explain themselves.
Admittedly, the line between being carefree and being overly cautious is very thin. After all, you do have to constantly be on the lookout for potential dietary mistakes and contamination. On the other hand, you should also be able to navigate social situations normally, which often involve food.
The downward spiral can look like this:
This all sounds rather grim, and you’re now wondering how you can prevent this or find a way out?
The (relatively) simple answer is: Knowledge!
The more you know about how to eat safely gluten-free, how to manage your food outside of your own four walls, and what consequences and effects dietary errors have on your body, the more confident you will become in dealing with the condition.
To avoid repeating myself too much, I would like to recommend the points from the first part on a gluten-free diet to you again – especially if you thought to yourself while reading it the first time, "Oh, I already know all that."
Regular, high-quality nutritional counseling is definitely worth it to ensure a good diet. This is especially true if, in addition to a gluten-free diet, there are other intolerances or allergies that require you to avoid even more foods. Or perhaps you feel like you no longer tolerate certain products and are restricting your diet more and more. A nutrition professional can help you ensure that your diet remains balanced and healthy (and tastes good, too). Because with guidance, it is easier to determine the right time to reintroduce foods like dairy products into your diet, so you don't have to deal with unnecessary long-term restrictions. Some of these are not even necessary, as you might discover with professional advice.
People who are members of a self-help organization often have a greater depth of knowledge and are therefore better able to maintain their diet. You should therefore consider becoming a member and find out if their offerings appeal to you.
But the internet can also be helpful, because there are good sites here too that provide you with a lot of knowledge. Like our blog here, which regularly gives you new information and tips for your gluten-free everyday life.
With this, you can break the negative cycle and find more security in your daily life.
When you talk to other affected individuals, you will always hear that it is best for you to be the expert on your own condition. This is because knowledge about celiac disease, especially among doctors treating adults, is not always sufficient to answer all your questions. Suggestions for further examinations or follow-up checks often have to be initiated by the patients themselves. In this, celiac disease differs greatly from other illnesses, where the doctor primarily holds the reins regarding therapy, further examinations, and so on.
If this cycle is broken, it can look like this:
Interestingly, this shows that many celiac patients can manage their condition well and perceive themselves as doing so. And that is the most important point – that you are convinced yourself that you can stand up for yourself and take action. This is also known as self-efficacy.
And this is where the circle closes between knowledge and your mental well-being: the stronger you feel, the more knowledge you are equipped with, the more confident you are in managing the illness and your diet, and the better you can make the right decisions for yourself! This has a massive impact on your life, especially in the difficult situations I mentioned earlier. Because when you are certain that you can master a situation, you see it through different eyes: it is a challenge, but not an insurmountable wall, not an overwhelming threat to your life. And this can start with very small things: feeling confident in the supermarket, choosing the right products. Going to a restaurant, ordering a meal, and feeling good afterward – both in your stomach and in your mind. The joy of mastering situations encourages you to continue on this path. Mistakes can happen, but with a positive attitude, you can use them as an opportunity to learn. And not view them as yet another setback suggesting that you could never manage the path ahead.
The better you understand celiac disease, its effects on your body, and a gluten-free diet, the easier your daily life will be.
It boosts your self-confidence when you have successfully mastered everyday situations and realize that you can take responsibility for yourself.
This gives you new freedom in your life and expands your range of movement.
Ärztin und Zöliakie-Expertin
