Hello, my name is Mehmet Özen. I am a journalist. I was diagnosed with celiac disease at the age of 46, (a few weeks before I started writing this). After this diagnosis, I quickly observed two things:
- Except for experienced celiac patients and their relatives, no one knows much about the disease.
- Finding accurate/consistent Turkish information and resources is harder than finding someone who won’t love you for your retirement pension on a dating show.
Ignorance in the history of humanity comes in two forms:
- The state of ignorance that one is aware of. Example: “I am not proficient in this subject.”
- The state of not knowing that you are ignorant. Example: “Wasn’t this subject like this? That’s how I know it” (knows it wrong).
Regarding celiac disease (and many other matters), most people predominantly live in that second category.
I would have liked to condemn the general ignorance about celiac disease a bit more, but I can’t because after the diagnosis, I realized how much hearsay information I had about this disease myself.
From the moment I started to get a little familiar with the subject, I found myself in a great sense of loneliness, uncertainty, and not quite knowing what to do.
The effect of not knowing or nor knowing enough at those moments is as follows; while trying to adapt to a “new normal” in the confusion, you realize the “brand new normal” where the situation is constantly more difficult than you thought. This means that your morale, which you are trying to keep high, gets hit with left and right hooks. Therefore, I think the most logical thing is to find a solid base where you are proficient in the basic subjects and try to rise from there to experience the least amount of ups and downs.
In all this tornado of awareness, it is impossible not to think that: Every newly diagnosed celiac patient, children, and their parents experience similar emotional states and confusion.
You are not alone
The main reason I decided to keep this diary and start glutenout.net is to be the voice of them. This platform aims to prevent newly diagnosed people from feeling lonely, from struggling with incomplete/incorrect/fragmented information, and from getting lost in search engines.
Along with this diary series, the site will also include answers to some questions that celiac patients have in mind, as well as information and articles that can make their lives easier. Even if one person experiences less of the fear and confusion I experienced, that will be my reward.
Note: In the diary series, I will also write down my still ongoing search for information and learning moments without filtering them according to the conditions at that time.
My story
After this long introduction, let me return to my own story.
About one month ago (December 2023), I went to the gastroenterology department with very severe gastritis complaints. How do I know I have gastritis? I had similar complaints in 2020, and an endoscopy resulted in a diagnosis of gastritis. Over the months, the situation became bearable with diet, medication, etc.
The same symptoms returned in October 2023, but this time, those medications and diets were not helping to control the 24/7 stomach issues. I’m talking about a level of discomfort that even prevents me from working, thinking, and moving.
And as a result, I came to the doctor.
My doctor, Prof. Dr. Erdem Koçak, said that celiac disease was a possibility at the first examination, and that the number of diagnoses made at an advanced age had increased after Covid 19. I didn’t give much credence to this; a disease that no one in my family has, with symptom I’ve experienced before. Why would I have celiac disease? (Ignorance1)
Afterward, my doctor saw signs supporting celiac disease in the endoscopy, and it was confirmed that I had celiac disease with a biopsy and antibody test. Frankly, there were worse possibilities on the table, so I didn’t have a negative reaction to the celiac diagnosis, (thinking that the suffering I was experiencing by cutting out gluten would also end). (I must say that this optimism is a bit too optimistic for optimisim.)
After all; what’s so hard about removing wheat, barley, and rye products from my life? I won’t eat pastries, I’ll bake my own bread, I can easily find gluten-free pasta and products. When I go to a restaurant, I’ll ask for gluten-free options. I managed to maintain a vegetarian diet for some time, I can do this too. (Ignorance2)
I told my doctor that there was no one in my family, on my mother’s or father’s side, who had been diagnosed with celiac disease. After all, there must be a genetic transmission, how is this happening? (Ignorance3) He said that gastroenterology is a relatively new field, and diagnoses are now being made more frequently. So, most likely, there are celiacs in my family history, but they don’t know it.
I must take a moment to thank my doctor; diagnosing celiac disease can be difficult, there are countless stories of people whose lives have been turned upside down because of delayed diagnosis. Celiac disease has countless symptoms that can be confused with other ailments. Maybe I had celiac disease in 2020, the diagnosis was missed, and the problems I’m experiencing today have grown. I’ll never know.
Hey, non-celiac individual reading this blog; if you are also experiencing chronic problems with your digestive system, if you see seemingly unrelated symptoms such as diarrhea, bloating, joint pain, brain fog, and skin problems, it may be helpful to see a doctor specializing in celiac disease. It is estimated that only 10 percent of celiac patients are diagnosed. And early diagnosis is very important for your quality of life and general health.
Important note: If you are going to get tested, you need to not have cut out gluten. Don’t go on a diet first and then get tested.
Yes, I have come to the end of the first blog. In my second diary entry, I will tell you about my first challenge with “cross-contamination,” the most distinctive aspect of the disease. How did everything in my house start to feel like an enemy?
Also in #2, I will share the support of the wonderful people I met at the beginning of this journey.
You are not alone!
See you later.
