Eating Out with Celiac? It’s ok NOT TO EAT. Really.

not eating out as a celiac

First of all, a belated Happy Celiac Awareness month. I do believe we’ve made progress in the past years of 1) getting our disease out in the open more; and 2) reducing the number of idiotic gluten-free jokes. I had a friend come visit me a few weeks ago and he said he recently saw a New Yorker cartoon of two women eating. One woman says “I’ve only been gluten-free for two weeks and I’m already annoying.”

My immediate thought was not anger but surprise, as I really thought we were past this kind of “humor”, especially from major publications. I looked it up and yep…the cartoon was 6 years old. It was still lame but everybody was on the “let’s make fun of gluten-free people” bandwagon and they just jumped on. That ship has (mostly) sailed.

Anyway…I had my worst celiac stretch in a very, very long time last week. It started Monday and did not begin to subside until Friday. My symptoms? Anxiety, the shakes, and literally crawling out of my skin. I know this feeling and it is only caused by one thing: the Covid vaccination.

Yes I’m kidding. I got glutened somewhere along the line the previous weekend. For me, it’s usually a 2-day delay so it’s hard to pinpoint exactly what is was. But it was a brutal week. God bless Mrs. Dude for her patience when I’m like this. It is not fun to be around.

This past weekend, I had some family come into town to hang with us. Friday night, usually my sushi take out night, I instead ate a delicious dish that Mrs. Dude put together. Saturday night, we had reservations at a restaurant just up the block from us. I have been to this joint before and they always seemed to “get it”. Because of my long week, I was going to make it a game time decision if I was going to eat or not. If so, I was simply going to order a plain piece of grilled fish. That’s it.

Everyone put their order in and then it was my turn. I called our server Gabby down so I didn’t have to shout my condition for the restaurant to hear. Now…Gabby was an awesome waitress so this is not a complaint. But when I said I have celiac disease and I need to be ultra careful, she had that “what the ever living hell are you talking about” look on her face.

She basically made the decision for me. I said “nothing for me”. Then I grabbed my jacket, ran out of the restaurant and collapsed on the street in tears of anguish.

Oh wait a minute…no I didn’t. I enjoyed my hibiscus margarita (ok fine…I enjoyed my two hibiscus margaritas), the conversation and the comfort of being with family. I didn’t feel awkward, I didn’t starve, and I woke up Sunday hungover happy with my decision of the previous night. Now it’s Monday morning and I feel like a human being again.

I remember early in my diagnosis, I was out to eat with a few (ex) friends. For whatever reason, something just didn’t feel right so I did not order anything. One of the people I was with was incredulous and said “so you’re just going to sit there and NOT EAT?” Ummm…yep.

The lesson here? Listen to your gut and don’t worry about what other people think about you not eating. Believe it or not…you’ll survive.

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33 thoughts on “Eating Out with Celiac? It’s ok NOT TO EAT. Really.”

  1. You give me courage. Eating out is always interesting but you have shown all sides to this life that is ours. You gave me the courage to say yes to my daughter when she asked me if I could eat at Backfins Crabhouse in Wake Forest. Not on my apps but I went in and talked with the hostess who call over one of the owners to speak with me. Everyone who worked in that restaurant took me seriously and were so careful with my order. This was my first time going to a place not listed and seriously checked out before I even walked in the door. This gave me hope. I know it won’t be like this ever time but education is the key along with the courage learned from within Abd from others like yourself. Thank you for everything you do Gluten Dude. I’m two years in with Celiac and I’m pretty confident now. I know I will make mistakes but such is life.

  2. I would have done the exact same. It’s just not worth it. I think it’s a journey to get to that place. I know what would happen and I am getting too old for that shit. I’m done pushing through the pain, losing days, being brave or accommodating other people. Enjoy your drink and company of your loved ones and eat at home if you don’t feel safe.

      1. LIFE is a journey in and of itself.. add celiac – diabetes or other conditions, and that journey becomes fraught w pot holes, rocks and other impediments. We can’t seem to get through it without some falls and near-accidents. That’s just the way it is.

  3. I’d be afraid that the margarita mixer somehow wasn’t safe to be honest. I just don’t trust non dedicated places.

  4. Not eating out is my standard. Maybe I have some trust issues or maybe I seem to always get the “Gabby” face but unless a place is fully GF, I’m pretty good with drinking my meal. My husband has become comfortable with this too. I’m not saying I don’t get a bit of food envy and once in a blue moon, I just don’t feel strong enough to deal with this but my norm is, I don’t eat.
    We have come up with a lot of creative replies for wait staff… upcoming surgery fasting, I don’t want food to ruin my buzz, I’m a very sloppy eater…. etc. Most of the time they get it and when they quality check my husband’s meal, I offer them kudos for pouring me a fantastic meal.
    I think restaurants need to make it ok for their servers to not push food on people who say they are not ordering a meal. It’s frustrating to hear.. Nothing? I’m sure it will be fine? (yes as a question) Well what about a salad? (dressing, cross contamination, will you just pick off the bread crumbs).
    Trust me servers of my future, I was in the industry for 20 years, I promise to tip you more for pouring me a relaxing, hassle-free Merlot dinner than some will on a 5-course meal.

  5. It has taken years to convince my S.O. to not “feel guilty” when out to a restaurant. I enjoy my iced tea at the pizza place. I like a martini at the club. What I do not want to do is spend a “gazillion” dollars for a steak dinner wherein I cannot have the mashed potatoes or anything fried because of the cross contamination. Buffets make me sick just looking at the dessert table. Proclamation: “Just let us be free please!”

  6. YES!!! When I draw that card I usually plunk down in front of my margarita/wine/boozy-whatever and tell everyone that I’m juice fasting 😉

  7. After having raised three celiac daughters, who are, YES!, skinny, I would suggest for those who are female and young to come up with a snappier reply. Why? Because everyone assumes that if you are in your teens or twenties that you have an eating problem- just because you are female! And, yes, you do! We never found a great answer beyond, I ate with my family at home. If anyone has a better answer, pass it along! The rumors that start can really get out of control. The school counselor, who knew my daughter was celiac, called about her “eating disorder” because she had heard other girls discussing my daughter (and making assumptions).

    1. I’m sorry you’ve had that experience. Two of my boys were diagnosed at ages 14 and 7 (now 20 and 13) respectively. I’ve definitely seen them develop interesting relationships with food simply because situations occasionally warrant not eating or just drinking a Sprite while enjoying time with friends. Hopefully the people in your daughter’s situation are showing concern from a loving place rather than judgement? Celiac is a difficult needle to thread for teenagers. I feel your pain.

  8. I do this often. I will eat ahead of time and enjoy an iced tea or fancy sparkling water while everyone else is eating. I don’t feel awkward at all, but often those we are eating with feel awkward. One family member CAN NOT handle me not eating and constantly harangues me throughout the meal with, “Can’t you just have a little of …” or “Why don’t you just ask them to …”. It got so bad that I will no longer eat with them because she is so focused on what I’m not eating that she can’t focus on eating her own meal. And at my husband’s company Christmas dinner at a fancy Italian place, I wasn’t able to eat anything available, and the waiter refused to refill my tea or water throughout the whole meal. Sigh.

    1. Yep I often find it is those around us that make it awkward. I’ve has someone order me something on my behalf knowing i won’t touch it just so it didn’t look weird. What a waste. At least I didn’t have to pay for it.

      1. I opt for a salad or a shrimp cocktail – both are relatively safe (I am NCGS- non celiac gluten sensitive) and a crouton would make me sick – and if I don’t trust the cocktail sauce, lemon is fine, and nothing wrong with a naked salad either. (unless they have Ken’s dressings which are all GF, except the Asian.) That said, early in this “game” I learned the hard way it pays to call ahead and speak to owner/manager/chef and ask the right questions re prep of meals. This works for attending weddings and other major events, too. Sometimes a meal can be left plain (like a plain steak) or roast beef w no sauce or gravy, or a piece of chicken prepared without seasoning or sauce, or a piece of fish grilled simply- IF they are called in advance. The truth is- eat ahead of time or after- for those events. You won’t starve! It’s a meal not a lifetime. And, yes, even family or friends can really be annoying!

  9. My husband came up “swim with the sharks” to fill in for “gluten”.

    “Why can’t you go “swimming with the sharks”. Just a little swimming won’t hurt you.”

    “My cousin went swimming with the dolphins and she was fine. It is pretty much the same thing, they both had dorsal fins right?”

    “It is just one shark bite, I’m sure you’ll be fine.”

    “We only get to the beach a couple of times of years. Why don’t you forget about the sharks? You’re spoiling it for everyone.”

  10. I’m going to say it, Gluten Dude. I’ve always had issues with how fast and loose you are about eating in restaurants or kitchens that aren’t 100% gluten free. I know there are people who are willing to risk it. I’m just not one of them. And, I’m also going to say that each time you played fast and loose (and ultimately lost) I felt you weren’t setting a good example. I will also say that in my early days of celiacs, your website was a life saver. It was one of the few sites that was based on real life, hard-won, personal experience. So, thanks for taking the risks and sometimes losing because your experience helped me decide early on that it is NOT worth it to me. Life is too short to eat gluten, or to have friends who do not support me in how I manage my very real celiacs. So, while I’m sorry you’ve fallen on the sword so many times, I am grateful for your example because it ultimately saved me from making what I’d consider Bad Choices. You ROCK, Gluten Dude. Please, Just Say No more often.

    1. Are you talkin’ to me? Are YOU talkin’ to me?? 😉

      I appreciate your honesty Marie. And you’re right, I made a choice a long time ago that I would not limit myself to 100% GF restaurants. But I do not consider myself fast and loose. And I’d like to think my blog has portrayed that over the past 9 years. I limit the places I eat. I ask the questions that need to be asked. And I play it as safe as humanly possible.

      I support anyone’s personal choices…and always will…unless of course they differ from mine (just kidding).

  11. My friends are always surprised when I just don’t eat if I don’t feel safe.
    I know so many newly diagnosed who won’t go out to gatherings because they think it is weird. I feel like society needs to put more emphasis on being with people rather than eating with people.

    Although I’ve been diagnosed for so long it’s just second nature to keep snacks in my bag.

  12. I appreciate all the words on this page, only one year since I found out I am celiac, and it hard going out to restaurants, I am thankful for the restaurants that are safe for me but there are just too few places that understand cross contamination. I now carry a a lunch bag with me if I know I will be hungry and can’t wait.

  13. I would have made exactly the same choice. I agree with many comments in this thread…
    1. That face will always and forevermore be known as the “Gabby face”. Ya’ll know EXACTLY what face that is.
    2. Prepping for surgery. Juice fasting. I ate at home with my family. Don’t want food to interfere with my buzz. All good – I’ll remember that once the world reopens, and if anyone ever talks me into going to a Muggle restaurant.
    3. I always have some sort of snack bar available, but “I packed a lunch” is even better.

    Honestly, the last time I ate at a non-dedicated restaurant was, like, 2 years before COVID. I got take out for the first time in almost 2 years the other day, and yes – it was from one of the surviving dedicated GF restaurants in Portland, Ore.

    Thanks for all you do, Dude.

  14. It’s been over 10 years since I was diagnosed and even though I have tried a few times eating in restaurants, the cross contamination problem is so prevalent that it is just not worth it to me anymore. If there was a totally dedicated GF restaurant in my area, I would love to eat out. The last time I tried (explaining how I have celiac), I ordered a shrimp cocktail with no sauce..just a slice of lemon. Well, it got cross contaminated. I ended up in the ER the next day with tachycardia that lasted for days. I get dizzy, temporary eyesight problems, nausea, vomiting, rashes, headaches..you name it, I get it. No matter how anyone can spin it, to me, celiac is a CURSE. I bring my lunch to any family get togethers. When at a restaurant, I try to just order a drink, some people around me feel uncomfortable and try to get me to “try” their food. They tell me it makes them feel guilty remarking about how good everything is. Oh well. It would be poison to me, so I am staying away from restaurants.

  15. Jennifer Garden

    I live in an area that really only has one restaurant that does safety right for us celiac sufferers. One of my friends was recently diagnosed (although it’s possible it was gallbladder problems, maybe). One of her first questions was, what restaurants are options? I sadly had to tell her there aren’t many around here. An hour away, there are more options, but not here. I’m considering starting a support group in my area After this current pandemic clears up a bit more.

    1. Exactly why I started a support group in 2007 and became the founder and Branch Manager. Contact gluten.org (Gluten Intolerance Group, NA) for more information. At that time there were no restaurants serving gf meals or even close. Today, thanks to some training we developed, several are available and do a great job in providing safe meals. More and more places are getting into it and some do better than others, of course. Go for it and good luck.

    2. A support group is a terrific idea! Back in 2009 I started a (now gone) gf potluck group on meetup.com . It was the result of watching someone open a roll over my carefully prepared dish at a potluck, and seeing serving utensils move from something safe to something bad. This group wound up being better than I could have anticipated, and a bunch of us formed a small community! We did theme meals, and christmas cookie exchanges. Being able to lean on others nearby made a huge difference.

  16. Wendy Burgbacher

    Thank goodness for wine. I can almost be satisfied with that when I don´t trust the food…and with this timing in your case, I too would have been safe rather than sorry- when I get glutened, it often takes a month to recover. Good call, Gluten Dude! Hopefully the day will come when we won´t have this worry…

  17. “Then I grabbed my jacket, ran out of the restaurant and collapsed on the street in tears of anguish.”

    I really have done this. Going to a restaurant used to be such a treat. The magic is gone.

    If I have to have “the talk about gluten” with them, it’s over. Stress has entered the room. Socially, it doesn’t work to “discuss with your server” your gluten free needs. It doesn’t work for me. If I have to do that, then there’s no value in going to a restaurant for me.

    I know other people do, but I just don’t see the point. It’s a pleasant ritual and treat that I once had and now it’s just never going to be the same. I can’t even use your trick because alcohol makes me instantly ill.

    Researchers keep wanting to horse around with “gluten free wheat” instead of actually finding a way to reverse the activated genes, or even map out the changes the HLA-DQ8 and 2.5 make. Billions of dollars poured into something most people with Celiac wont’ touch anyway.

    For once and for all: I’m not criticizing wheat. You can’t fix the wheat. Research dollars need to go to fix the disease. I think they’re using Celiac as an excuse to pour billions into biotech wheat. I think we’re turning into an agribusiness scam. Every time I hear “gluten free wheat” again in the news I’m like… I will never want that. And neither will non-Celiac people. You’re wasting time, fix me.

    Look at all the cruelty of this. First they criticize us saying we’re narcissistic. Then they offer us expensive foods. Then they divert funding away from fixing the disease, and instead pour it into the already bulging coffers of agribusiness. Meanwhile we can’t get a meal in a restaurant without an interrogation, that wouldn’t look out of place in a police procedural TV show.

    So sick of this.

  18. I have been glutened by glassware washed in sinks behind the bar in the same water as beer glasses. I figured it out from my days bartending. When I asked if the wine glasses were in fact washed that way, they said yes. So beware, I have been sick a couple of places after only having a beverage.

  19. To be honest, the part that gives me the most anxiety isn’t the risk of getting glutened – it’s the reaction of my friends and family as I sit there, comfortable in my decision not to eat.

    When I was vegetarian (a freakin lifetime ago), if there wasn’t anything I could eat, my family would spend the. whole. time. telling me which menu items I could sub out meat, generally offering unsolicited advice, offering to go eat somewhere else. I was always fine with not eating, because, you know, I have a fridge stocked up at home and can wait 2 hours.

    I’m glad you wrote this, it was really helpful to read!

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Who I am. And who I'm not.

Who I am. And who I'm not.

I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

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