And then you have Celiac disease

Celiac disease - ByMeryl

By the title you can probably already guess that this post is going to be on Celiac disease, which I was diagnosed with 3 months ago. I have been wanting to write about it for a while but I found it hard to find the right tone, not to down, not to upbeat (because then I would be pretending I am already okay with it), informative and still personal. I decided not to pressure myself into writing a proper post but just to focus on my story and advice, so be warned for a messy post.

Celiac disease is an autoimmune disorder that is trigged by the consumption of gluten. Forcing people with Celiac disease to have a gluten-free diet and lifestyle and to be extremely cautious of cross contamination.

You might wonder after reading this short introduction, how I only discovered that I had celiac disease at 25? Well over the past months I’ve wondered the same thing. Looking back I had many symptoms belonging to celiac disease, but my doctors never suspected it and neither did I.

So now what?

When I first got the phone call and heard my diagnosis, I was shocked. The first weekend, after my diagnosis, I decided to live in blissful ignorance; I stuffed myself with food that I love but wouldn’t be able to eat anymore as soon as I would start my gluten-free diet. I also enjoyed quite a few meals outside the house, because eating out would become much more difficult. Obviously this was a stupid idea because my stomach did not agree with me at all. But I saw it as a little goodbye party to all the delicious gluten containing food out there.

After that weekend I cleared out my cupboards, bought new kitchen supplies (cutting boards, knives etc.) and made the switch to gluten-free food.  To be honest it was extremely difficult, it took me hours of grocery shopping (reading labels) and meal prepping (not a big fan of cooking). It also resulted in countless breakdowns in the middle of the grocery store (I know very charming) when I figured out how many products, I wasn’t allowed to eat anymore. My bank account wasn’t happy either; gluten-free food is expensive.

The symptom that shocked me the most though was the feeling of constant starvation. Your body needs to adjust to the new food and gluten-free options are not always available, so I was hungry all the time. A positive improvement though was the immediate decline in pain. Instead of lying on my bed after every main mail, I felt normal again and could make plans for the evening, that I did not have to cancel last minute due to the pain. One small victory at a time.

How do I cope with Celiac disease now?

As I mentioned above, it’s been 3 months, so how do I cope with it now? Well, a lot better actually. I know what products I can get at the grocery store, I’ve discovered new recipes and I have accepted the fact that this is my new lifestyle, resulting in (almost) no more breakdowns in public spaces. I’ve also switched house and moved into my own brand new apartment, so keeping the kitchen clean and gluten-free has gotten a lot easier. My family and friends are very supportive and are always prepared to eat en cook gluten-free, which means so much. But if you asked me if I would want to live gluten-free by choice? Hell no! Although I am getting used to it, I still struggle with eating out, vacations and the whole lifestyle change.

Also health wise I am not where I want to be. Due to my late diagnosis my stomach and bowels are infected and it can easily be a year before the infection and all the symptoms are completely gone. The recovery process is draining my energy levels, but I hope that in a year from now I will feel much better and that it will all be worth it. I will talk more about my experience in the future and will also share some simple recipes or restaurant recommendations. If you want to share your experience or if you just need someone to talk to you can always send me a direct message on Instagram.

Love, Meryl

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