It happens to the best of us… the dreaded “glutening,” when you accidentally ingest gluten and then suffer tremendously. I am sharing this story for a lot of reasons. First of all, I want to be honest with my readers and let you know that a seasoned celiac such as myself gets sick sometimes. Also, I wanted to address “victim shaming.” Some details might be a little gross. You’ve been warned.
Unfortunately, I was “glutened” on my last day in Paris in November and it hit me as soon as I landed in Berlin. Welcome to Berlin, immediately barf in the airport bathroom. It wasn’t pretty but it happened and I suffered horrendously for 24+ hours.
Let’s back track a little bit.
My last day in Paris was a bit frustrating. It was a Monday which meant many of the gluten-free restaurants and stores I wanted to visit were closed. It seems to me that Sundays and Mondays aren’t very popular for restaurants to be open in Paris. It happened the last time I was in Paris and it happened again on this trip. I totally forgot and got annoyed that I couldn’t go to anymore delicious gluten-free shops or restaurants while in Paris.
My husband had a place he wanted to eat lunch and I knew I wouldn’t be able to eat anything there but I didn’t want him to miss out. It is VERY rare that he asks to eat at a place I can’t eat but we were in France so I said sure. Even though I got a rude response from the waiter, I sat there while my husband ate lunch. Such is life sometimes. (No judgments on my man eating without me. I agreed to this 100% and didn’t mind at all.)
After lunch, we took a quick detour to a supermarket near our hotel so I could grab lunch. I picked up a package of cheese, a quinoa salad marked “sans gluten” (gluten-free in French), and a package of crackers also marked gluten-free. I also grabbed a cup of tea at the hotel and had leftover bread from a dedicated gluten-free bakery. Simple, but enough to carry me over until I landed in Berlin.
I suspect this pseudo meal is where the glutening began.
If I eat gluten by mistake, I feel symptoms almost immediately. I am talking one hour or less. I was a bit nauseous in transit from Paris to Berlin but by the time we landed, I was running for a bathroom. One of my tell-tale symptoms of glutening is vomiting, a lot and violently. It is not fun but my body needs to get rid of the poison. I will spare you the details but let me just say it was a horrible night of me starting in the Berlin airport and moving to the attic of our host family’s house with my head in a bucket and a washcloth on my head. There were a few moments when I made it downstairs to lie on the bathroom floor and wash myself up but by 2am, I could barely walk anymore. It was awful and the worst glutening I had in almost 5 years.
The next day, I was worn out. My abs hurt, my head hurt, my body was fatigued from barfing all night long, I was dehydrated and shaky. Yep, this was for sure gluten. I hadn’t been this sick in so long but you never forget how you feel!
Our hosts didn’t really understand what was going on but they knew I felt like crap. They had put out a huge spread for breakfast, but I didn’t eat anything all day. Just water and eventually a cup of tea. That’s it. At dinner, I was still weak and feeling terrible but they wanted to take us out for Greek food. (Yes, Greek in Germany.) I forced down some bites but it was really too much too soon. If I had been at home, I wouldn’t have eaten for days.
I shared my glutening incident on both Instagram and Facebook. I wanted to be honest with my readers. I wanted them to know what I was dealing with overseas. I wanted them to know that even a glutening can happen to someone that has been living with celiac disease for more than 35 years and who has traveled the world extensively deals with this too.
The majority of my readers and followers on social media were VERY sympathetic. The direct messages came pouring in asking me if I was ok. People were kind and people totally had the “been there” attitude. But then something happened that I never expected, I got some REALLY nasty messages both left as comments (since deleted) and privately via direct message. For example:
“That’s what you get for eating outside of your home.”
“You should never travel overseas, this is what happens.”
“You shouldn’t be blogging, you are dangerous to other readers.”
“You are careless.”
WHAT?? Excuse me??
I had dined out at restaurants for 3 days in Paris without incident. I got sick from packaged goods labeled gluten-free from a supermarket. I have literally traveled the globe from North America to Central America to Europe to Asia over more than 30 years of living with celiac disease and this was only the second or third time getting “glutened” overseas. I get sick more in the United States than I EVER do abroad. Whether it be Paris, NYC, or home, this happens sometimes even to seasoned travelers such as myself. It is just part of life when living with celiac disease but how dare these people come and victim shame me on my own social media channels. To say this hurt would be an understatement. Nothing like trying to heal when getting hate mail!
I spent the rest of my short trip in Berlin trying to feel better and make the best of my visit. I saw the Berlin wall, went to the Memorial to the Murdered Jews of Europe (one of the most intense museums I’ve ever visited), took a bus tour of the city, and even did some gluten-free grocery shopping. I did not really get to go to any places on my gluten-free restaurant list, mainly because I just did not feel like eating after being so sick. If I had been home, I would have stayed in bed for days. I couldn’t do that on this trip, nor did I want to let my glutening ruin everything.
When I came home and started to feel better physically but I was really mad about the nasty comments I got while in Berlin. Here I was being completely honest and sharing what happened to me and I was victim shamed. This was NOT ok when it happened and it is NOT ok now. I then saw another blogger share her “glutening” on a recent work trip and she experienced the same thing with the victim shaming. I immediately jumped in to defend her online. It wasn’t pretty, but it was my way of dealing with what happened to me too. Bullying others about how they live their celiac lives is unacceptable.
I have NEVER let celiac disease stop me from seeing the world. I would never live my life in a bubble. I spend tireless hours researching places, calling restaurants, and learning everything I can about my destination city. But like I said before, it happens to the best of us.
Will I get sick from gluten again? Unfortunately, probably yes. But I will always do my best to not get glutened if I can avoid it.
Will I travel again? Most definitely YES!!
Will I defend myself for doing what is right for ME and my life with celiac disease?
FOREVER YES !
I’ve always had the mantra, “my celiac is not your celiac.” I will continue to do what is right for me and right now, that is continuing traveling the globe while living completely gluten-free with celiac disease. It may not be right for you and that is okay! Just listen to your body, listen to your doctor, and listen to your heart when living your life with celiac disease.
I thank all of you dear readers and friends who stuck with me during my time being sick in Berlin and following up to make sure I got better. I truly appreciate it. You helped with my healing in more ways than you realize.