Real Talk: Getting “Glutened” While Traveling

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.

Crackers with my lunch

Last-minute lunch

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.

About Erin Smith

Living with celiac disease since 1981 and eating gluten-free long before it was "trendy", Erin Smith has a unique perspective of growing up in the gluten-free community; Founded Gluten-Free Fun in 2007; Founded Gluten-Free Globetrotter® in 2011; Founded GlutenFreelancer® in 2014. Erin was the lead organizer of the NYC Celiac Disease Meetup group, a social community of more than 2,000 members for over a decade. She is the founder of the Santa Cruz Celiac support group. Erin currently resides in New York City and lives 100% gluten-free.
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42 Responses to Real Talk: Getting “Glutened” While Traveling

  1. Nelia says:

    So sorry this happened to you, Erin. I thought about your ordeal the other day when I ended up buying the EXACT same quinoa salad in a supermarket in Paris. I was there for work during the big ‘yellow vest’ protests with very few shops open, and I had to buy prepackaged food at 8am before attending an event that couldn’t cater to my needs. I’m quite sensitive and nothing bad happened, so I guess you got a box from a batch that had been cross-contaminated.
    I don’t see the point in some commenters being nasty/judgemental to you.

    • Erin Smith says:

      Thanks for reading! I am so glad you did not have the same experience I did. I am not sure if it was the salad or the crackers, but I wouldn’t wish the aftermath on my worst celiac enemy!

  2. Denise Sawchyn says:

    Hi Erin,

    So sorry this happened to you. Thanks for sharing. I had similar symptoms once, and assumed it was bad turkey in a Cobb salad. Maybe it was gluten through cross contamination.
    Thanks again for all you do for celiacs everywhere.

    Take good care,
    Denise Sawchyn
    Canada
    Sent from my iPhone

  3. Erin, I’m so sorry that happened – both the gluten and the bullies! Like you, I’ve had decades of dealing with celiac but can still get a restaurant/etc. who assures me that a dish is gluten free when it isn’t. But to never eat outside my home would be like letting the disease win and that’s never going to happen! 🙂

    • Erin Smith says:

      Hi Beth, thanks for reading! I like your attitude about not letting celiac win. We are bigger than our disease. Hope to see you soon. We need to make that coffee date.

  4. Suzanne says:

    Erin, thanks for sharing your feelings! What happens to you can happen to any of us at anytime no matter where we are! Keep up the good work and support for all of us! Nasty comments will always be present as well as nasty people ! Part of the journey. Blessings ! Suzanne

  5. Julie M Cade says:

    Sorry you got glutened and so very ill; also sorry you got attacked by readers. I’m with you—I travel worldwide, am meticulous about cafes, restaurants, and foods and 99% of the time, all is well. When I accidentally ingest gluten, I pay for it, too, but I, like you, am not going to further restrict my life. For those who are afraid to eat out, leave home, etc., that is certainly their choice, too, but let’s not judge each other.

  6. Claire Fisher says:

    I was diagnosed 20 years ago. I decided I would not become a recluse! We live in the real world, not a perfect one- mistakes are gonna happen! You followed guidelines I would have followed in your position. I do not understand the nasty comments you received! Keep on travelin!!

    • Erin Smith says:

      Thanks for reading, Claire! I think people like to project their own fears and insecurities about traveling with celiac disease on to others. I happen to take the brunt of it for being honest. You keep on traveling too!

  7. CC says:

    I react to gluten just like you and I am so sorry you had to go through both being glutened and the bullying. I too travel the world because it is important for me to expose my children to different cultures and enhance their education. The fear of eating gluten and getting sick should not stop one from experiencing new places and meeting new people. Actually I just vomited all over my car door while visiting Cape Cod!

  8. Rachel says:

    Thank you for this Erin! This is why I chose to start writing about traveling with Celiac Disease. Too many people are scared to travel. That fear turns to bitterness and I honestly am not going to waste my life holed up at home. Those trolls who attacked you…so sad that they chose to let their disease and dietary restrictions control them. Kudos for speaking up!!!

    • Erin Smith says:

      Thanks for your comment, Rachel. And thank you for sharing your travel experiences as well. The more people we can help navigate the world, the better off we all will be!

  9. Rachel ¦¦ A Nesting Nomad says:

    Ugh sorry about the glutening, that sounds absolutely miserable. Secondly, getting grief for eating labelled gluten free foods makes zero sense to me. Life is for living, what is the point if you resign yourself to never leaving your own house? I travel quite a lot and don’t plan to stop anytime soon.

    Luckily, my coeliac has silent symptoms so I don’t suffer as miserably as you if I get glutened. Having silent symptoms has its downsides too but no need to go into all that – the point being, I always try my hardest and aim for 100% compliance but the reality is, that’s virtually impossible and I value my mental health (as improved by travelling) just as much as my physical one.

  10. Thank you for sharing your experience Erin. Things can happen, even if we are very careful, but that shouldn’t be an impediment to keep traveling and just enjoying life. My reaction was exactly the same as yours to those negative comments. Why on earth would people attack you? I don’t understand how they can live with such a negative mindset. Are they locked in their house and never venture to go out?

    On a side note, and in the specific case of Europe, I tend to avoid products without an official gluten-free logo unless I know them. For example, products labelled as gluten-free in Mercadona supermarkets (Spain), Sainsbury’s, Tesco… etc, I’m ok with them. In Europe, the official logo is the Crossed Grain Trademark and it has to include two letters (to identify the county where it was tested) and a number. That letter + number combination is very important, as I have seen products where they only have the symbol, and that is unauthorized. –> https://www.aoecs.org/licensing-crossed-grain-symbol Some countries have their own official symbol, so sometimes you will see two official logos.

    And as a resource to anyone visiting Europe, this is the official licensed products by country Hope it helps 🙂

    https://www.aoecs.org/gluten-free-products-under-license

  11. Cindy says:

    Thank you for writing this. I am coming off a bad glutening from last week. I was blaming myself for a waiters mistake to inform me of a dish being gluten free. Then indeed I learned it was not!
    It’s comforting to hear other celiacs have the same issues no matter how hard we try mistakes happen. I am traveling this weekend out of the country and I’m scared now that my immune system is weak from the glutening. But I won’t let that stop me!
    Have you been to Lima, Peru? Any tips?

    • Erin Smith says:

      Hi Cindy, we can’t beat ourselves up over accidental glutenings. It happens and we have to move on and heal. I know it is hard but I think feeling guilty just prolongs our symptoms.

      I haven’t been to Peru (yet) but I hope you have a wonderful time.

  12. Renata Sandweg says:

    You are a warrior for Celiacs, plain and simple. You are am inspiration to me and hope for my 13 yo daughter: that one day she will brave the world and travel and socialize and LIVE LIFE. Thank you. Thank you. Thank you.

  13. Cheryl says:

    It is unbelievable to me that you or others would have been victim shamed. And especially when you were so sick. Please know that the majority appreciates your honesty and you sharing your experiences, good or bad.

  14. Therese says:

    I am so very sorry that some people wrote such terrible things to you. I read the one comment where the reader shamed you for eating outside your home. That person is so very wrong. I’ve been gluttened by eating packaged baby carrots and hummus, in my home. All I can think is that the chickpeas were cross-contaminated somewhere in the process of making the hummus. So now, I look for certified gluten-free hummus. I have also gotten sick from eating packaged food labelled gluten-free. I feel a little terrified when I venture to a new restaurant, even when they offer GF food.
    The extreme and painful vomiting happens to me, too, but I can’t stop and have to go the the ER. The last ER doctor told me to keep nausea pills with me, so that after vomiting up all the food, I can stop the spadmastic vomiting of stomach acid that happens every few minutes, making me dehydrated and low on potassium, unable to lift my head. Since then, I’ve been super careful, and have not had the need to “try out” the nausea pills.
    We have a Viking River cruise scheduled this year. I choose Viking because of good reviews on dietary requirements, including celiac disease.

  15. Pingback: The Celiac Project Podcast Episode 156: Gluten-Free Travel | Gluten-Free Globetrotter

  16. glutenfreejourneyca says:

    I wish I couldn’t believe people attacked you the way they did… but it has too happened to me by complete strangers, and sadly family too.

    I dream of the day the general public understands this is REAL and yes, our symptoms are absolutely terrible for goodness knows how long!! Sometimes a day, other times a month… really depends on our bodies health before that glutening.

    We now have a small blanket kept outside our bathroom for the bad nights, floor gets cold and so uncomfortable but climbing the stairs multiple times in an hour is way worse.

    I look forward to the day we can travel and experience the world of gluten free!!!

  17. Donna D says:

    I’m sorry you were treated so poorly. Glutening is awful. I usually vomit (insert worst imaginable) and then diarrhea (same instruction).

    I also travel and as much as my reaction is horrendous I wouldn’t stop. Celiac doesn’t define my life, it just makes me realistic and look for safe foods and restaurants.

    Travel on!

  18. Suzanne says:

    Erin; I’ve known you for years ( before your successful blog!) & Ive always admired your enthusiasm & sense of adventure. Please don’t ever loose that, or stop encouraging others to live their best life because of some astonishingly narrow minded & nasty comments. I’m sorry for those that feel they need to “order” people’s lives. As for me, I’m living my best life! See you in Paris, Erin!

  19. Leigh-Anne says:

    I am 100% with you! Thanks for writing & sharing on your blog. Its great to hear from someone else who goes through the ordeal of being accidently glutened whilst travelling. Love & respect x

  20. Nicole M. says:

    Wow! My husband has celiac disease and we have never stopped living life. The potential to be gluttonized will always be a fact of life for a person with celiac disease but it doesn’t mean you can stop living. I’ve prepared meals in our own home with ingredients I thought were safe and clearly weren’t. Does this mean my husband shouldn’t eat my home cooked meals? Absolutely not! I’ve now signed up for your reports and look forward to insing places where my family can travel through your adventures!

  21. Lynn B says:

    Thank you for sharing. I am sorry you experienced this nastiness. I really do not understand why anyone would make these comments. They must live miserable lives if this is how they think. I also have a good idea about their politics from what they said. Also why bother reading your blog if this is how they feel. Your blog is a lifeline for so many people. It is read by people who love to travel and explore the world and other cultures. A BIG THANK YOU FOR YOUR WONDERFUL BLOG!

  22. Regina Zielinski says:

    Hi Erin, I’m glad you have recovered from your gluten experience. It is true that we celiacs can differentiate between stomach issues, bad food and then the dreaded gluten ingestion. But this risk shouldn’t keep you in a safe bubble, since you can pick up a package of gluten-free food and still be glutened at home too! Shame on the trolls who derive enjoyment from shading someone else.

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