For a newly diagnosed celiac patient, the biggest problem is not understanding what their disease is. It’s almost impossible to get consultancy support from hospitals beyond diagnosis. And the misinformation given by your surroundings, such as “You won’t eat gluten, that’s it,” or “It’s healthier this way anyway,” is perfect for short-term relief and long-term disappointment.

For me, it took time to learn what I’m about to write. Therefore, I want to use my mansplaining card here for newly diagnosed celiacs.

<mansplaining> No. Celiac disease is not a trendy lifestyle we can solve by going on a gluten-free diet; it’s a genetic autoimmune disease that can have serious consequences. Not eating gluten is just the first step for a celiac to start healing. And unfortunately, avoiding gluten is harder than we think.

So, why is it difficult? Why can’t I just go to a restaurant, choose a gluten-free meal from the menu, and continue my social life like a vegetarian? The answer is two words: Cross-contamination.

If gluten-containing foods are cooked in a kitchen where gluten-free foods are also cooked things become risky for a celiac due to cross-contamination. Zero tolerance to gluten in celiac disease is real. We must not introduce even a crumb into our bodies. So much so that even a wooden spoon that has previously touched gluten can cause contamination even after being washed. </mansplaining>

An Ethan Hunt-like mission: Making the house gluten-free

Of course, not being able to eat out is not today’s issue. I’m postponing that sadness. (In this period of inflation, sorrows also need to be paid in installments.) The first struggle with gluten starts in one’s own home. I need to make the place I live in gluten-free. This is a harder task than I expected. Gluten is in everything; toothpaste, hand soap, shampoo, dish detergent, deodorant, perfume. And of course, medications.

Every object at home that I was previously blind to seems to like they want to harm me.

My digestive system is upset, am I unknowingly getting gluten from one of the enemy items at home?

Result: I threw everything away as if there were no tomorrow. I bought new versions of the products mentioned above and more. There are brands that produce these as gluten-free, and there are lists of these brands online. These lists, of course, contradict each other.

Everything is gluten until proven innocent

There are also foods that are naturally gluten-free. During my ignorant period, thinking these were safe, my health deteriorated. Let me tell the newly online celiacs, just because a product is naturally gluten-free doesn’t mean it doesn’t contain gluten. For example, lentils don’t contain gluten, but the risk of gluten contamination is generally high during production processes. Therefore, you will have difficulty finding gluten-free lentils on the market.

Summary: Anything that doesn’t say gluten-free on the package may contain gluten. (And sometimes, even those that say gluten-free may contain gluten.)

Of course, there are things I couldn’t throw away. For my 5-liter unopened very expensive olive oil that I bought a long time ago which was probably a better investment than Bitcoin, I picked up the phone.

– Hello, is this X Olive Oil?

– Yes, sir.

– I have a question, I was recently diagnosed with celiac disease. Does your olive oil contain gluten? I absolutely cannot consume gluten.

– Our oils undergo regular laboratory testing.

(I’m getting hopeful)

Our oil is top-notch, sir.

– (I send the hopes back to where they came from) I’m sure it is. What I’m wondering is whether it contains gluten.

– I’m hearing about gluten for the first time from you. I’ll call the lab and ask.

I recommend this method to you too. Pick up the phone and call the companies. Also, inquire about what they are doing against cross-contamination. You will probably get a quick answer because another celiac (or an influencer follower who found the secret of life in a gluten-free diet) asked the same question before you.

Small victories

As I wrote before, what bothered me the most was the feeling of loneliness and emptiness when I first received the diagnosis. Uncertainty, especially in times of crisis, presents an unbearable void. A period when Google is insufficient, and the disease-related association is ghosting.

But there are also wonderful surprises that break this silence. For example, the Celiac Foundation (Çölyak Vakfı), which works on celiac disease and achieves tremendous gains for patients. The fact that the Foundation’s President, Elif, tried to help “as if we’d known each other for 40 years,” answered my questions, and showed me the way was the first factor that made it easier for me to cope with that feeling of emptiness. Then I met another wonderful person, dietitian Merve. I feel safer now. A “normal” appears on the horizon.

I realize that everyone who crosses paths with celiac disease has an impressive story. We can stay standing by leaning on each other.

This disease can be seen as a defeat. The best way to deal with defeats is to be more aware of the small victories that pass by us.

Speaking of small victories;

I had a call. My olive oil is gluten-free.