Exactly one year ago, I heard my diagnosis. It was a phone call from my internist, who searched for the reason of my iron-deficiency anemia and sent my blood to be tested for celiac disease (CD). The result was unexpected as I didn’t have the classical (as understood by many) symptoms of CD. Ten minutes after I enjoyed a baguette with garlic butter, I received the news. This was the last time in my life when I consciously ate a gluten containing meal.
I had to wait four weeks for a meeting with a MDL specialist (MDL- Stomach-Intestines-Liver). It took another four weeks for the results to arrive. A biopsy of my small intestine confirmed the result of the blood test; celiac disease, 3rd degree Marsh scale.
Since the blood test results arrived, I was following a gluten free diet. Nobody told me that I had to consume gluten prior to biopsy. Well, the damage to my intestine was high despite not eating gluten; kind of not eating gluten. Ironically, while I thought I was eating gluten free, I was doing it all wrong. Now I know how naïve I was. I haven’t heard of gluten contamination for about two months after the biopsy. I had no clue that a gluten free diet needed to be so strict. I was enjoying my gluten free sandwiches at the table just next to my partner who was spreading wheat crumbles from his bread all around us. Unaware, we were dipping our knives in the same butter and jam! Now, when I think of it, I get goose bumps.
When I finally realized that I had to be way more careful and protect my food from contamination, I started reading and researching about CD on my own. The more I was learning – the more trust in the medical world I was losing. I was scared that there are more things which weren’t communicated to me in the hospital. It hit me that nobody else but me needs to take care of my health. I felt like I was left on my own with this mysterious, new, apparently a bit ‘fashionable’ CD. Also, only then I noticed that many people without CD already eat gluten free and that the media is using the ‘fad’ word a lot!
Suddenly, living far away from my home country was more difficult than ever. Life was hard and scary. Having a career started feeling less important. Health became more valuable than ever.
The beginning was tough. Switching to a gluten free diet wasn’t easy but overwhelming. I needed to learn new cooking and baking skills. I was happy, however, to find the reason of my multiple body complaints. The following months only proved for how many symptoms, gluten was responsible.
Today, 12 months later, the diet pays back. I am not fully fit yet. I still lack energy to do everything I used to do and things I would like to do but it gets better. I remember how I felt even four months ago. I regained some more energy since then. In practice, that means I don’t look or feel like a zombie at 22:00 and I am able to cook my own evening meal. And that means A LOT to me. There were times when I couldn’t keep my eyes open at 14:00 and when I took a nap it would last all day and night and still wouldn’t feel enough.
After following a strict gluten free diet for about ten months now, I still react to some foods which are in principle gluten free like brown rice. The dairy intolerance seems to worsen rather than getting better so I am a bit worried about it because I know that a lot of Celiacs become lactose intolerant for life. I hope I will get over it one day and will be able to enjoy whipped cream or a delicious cup of kefir again. Till then the alternatives, based on e.g. almonds, need to be enough.
A big problem for me is coffee. It makes a huge difference in how I feel. It makes me feel anxious, it makes my heart racing and it causes weight gain. I tried all types of coffee, different brands, also organic brands, but they all mean only trouble for me.
Another change I needed to make was to stop eating ‘bad’ processed foods. Yes, there is a lot of ‘bad’ gluten free processed foods out there that make me feel really sick. I guess you just need to find out which of them aren’t good for you and avoid them.
Organic, pesticide-free vegetables and fruits are definitely tolerated a lot better by my body than their standard equivalents. I educated myself on which vegetables and fruits are usually sprayed less or at all and which ones are ‘dirty’ and needed to be purchased in shops with biological food. Since then, I get a bag full of organic fruits and vegies every week.
Long before my diagnosis with CD I was avoiding refined sugar whenever possible. For a long time now, I am aware that sugar just doesn’t do it for me. Limiting it now is not a burden. I consume it only in ready processed foods that I eat sometimes. Otherwise, I don’t miss it; my taste changed already. Sometimes, even a ripe banana or a date feels too sweet to me.
CD put me on a real emotional roller coaster. 12 months after hearing the diagnosis, I finally started feeling angry. Why me? Why does it have to be so difficult to go out or to travel? First time, I had a good cry because I have CD. First time, GF jokes seem not funny.
To prove me that life isn’t that bad, my partner took me last weekend to Manu, GF restaurant in Arnhem. Let me tell you, I am still angry but the GF brownie isn’t any worse than the non-GF brownies!
Thank you for reading my story,