Getting Glutened Sucks! Living the gluten free lifestyle is not easy, especially when you absolutely have to eat strictly gluten free, I do my best to stay safe. I read every label, call companies, spread the word through social media, educate anyone that will listen, call ahead to restaurants, ask questions and more questions when eating anywhere outside my house. I patiently take the time to explain to servers, managers and chefs how serious celiac disease is, how even the smallest crumb of cross contamination will send my world spiraling out of control and throwing up on their table. After all that is said and done I still roll the dice, hoping that this time I will walk out happily nourished and not bloatingly pregnant.
Some choose to not go out to eat at all and to never take chances; I am not one of those people. When every waking moment I have to worry about my physical health, I refuse to put my mental health in detriment as well. That is, I will not give up spontaneously meeting friends out for drinks, enjoying social occasions or having a nice meal on a date; I always carry snacks as a ‘just in case’. Sometimes though, no matter how many questions I ask or how many times I explain my situation, the chance of being glutened is a truth I live with daily.
Gluten Free Options
There has been an upswing of restaurants around the country offering gluten free options, some are safe and some are not. I can usually tell by how the waiter answers my questions. For example, does the ‘deer in headlights look’ glaze across their eyes, do they seem annoyed or put out by the mere mention of ‘gluten free’ or are they at least somewhat educated and more than happy to check ingredients and do what they can to try to ensure an enjoyable meal? All I ask for is honesty. Again, sometimes that is not enough.
Getting Glutened
Recently I went out to drinks with a friend at a local hotspot in Sherman Oaks called, On the Thirty. I hadn’t planned to eat, but the fresh beet salad on their menu sounded so delicious I decided to try it. I explained to the waitress about being medically gluten free and how serious cross contamination is for me and that it only takes a few crumbs of gluten to trigger a reaction. She explained that it was not a problem at all to accommodate safely. The beet salad arrived and normally I would wait until the waitress came back to the table so I could verify the safety of the food before I started eating, this time I did not. I soon would regret this decision.
Along the edges of the plate were these tantalizing candied walnuts that I absolutely adore and could not help myself. Without thinking clearly I picked one up and popped it into my mouth. Right then I looked up and saw the waitress literally running to our table, I knew as I swallowed I had made a big mistake. Clearly concerned she said, “I tried to stop the salad before it came out, please tell me you didn’t eat the nuts.” My friend looked over at her and said, yes, she ate the nuts. The waitress looked horrified, as she was not sure what would happen next and asked what she could do. I shook my head and said, ‘it’s too late now, but I will have a shot of tequila please.’
Within minutes I went from happily chatting away nonstop to barely being able to put two words together. I excused myself, as a mild case of vertigo started to set in, and slowly walked to the bathroom. I sat there in the stall for what seemed like an eternity and fought hard against my desire to crawl into the corner and fall fast asleep right there on the floor. Finally I gathered myself up and walked slowly back, holding the walls and every chair I passed to make it back to the table standing upright.
As we left the restaurant to return to my place, my growing stomach gave me a glimpse into the rest of my evening. I could barely keep my eyes open, slurring every word like I was seriously intoxicated. A migraine had set in by the time we reached my apartment and once inside I immediately found solace on the cold hard floor, alleviating some of the nausea while he rubbed my back. Soon after that I had passed out. Did I mention this was a first date? Not embarrassing at all. My life is a reality show.
When I woke in the morning my body felt like I had been run over by a truck. Unfortunately I had to go to work and spent the first 5 hours running back and forth to the bathroom every ten minutes, much to the chagrin of my fellow employees. I suppose I am lucky that I had passed out before the worst part happened when my date was still there.
That evening, my body exhausted, there was absolutely no sleep in my future. I tossed and turned all night long with restless leg syndrome burning through my lower limbs, positioning my pillows in every way possible until I finally just gave up and got out of bed. As the sun started to rise I ran a bath to hopefully relieve my legs a bit, when I noticed the red rash running along the length of my back and smaller red spots between my breasts… pleasant! The rest of the day I stayed planted on my couch watching bad tv, eating red grapes and drinking peppermint tea.
It Doesn’t Pay to Assume
All of this from just one flour coated walnut, pretty unbelievable isn’t it?! It had been a long time since I was full on glutened by actually eating gluten and not just minor mishaps with cross contamination, it was painfully not pretty. I blame it partly on the restaurant, but I place most of the blame on myself for not following my own rules and for being impatient. After being gluten free for almost 5 years now it seems I have grown a little lax, this little mishap reminded me of how truly painful ignoring diligence is; a lesson I will not soon forget.
So remember, ALWAYS READ LABELS and ALWAYS ASK QUESTIONS and then ask some more after the food arrives. Always use your best judgment and learn from my experience. It has now been 3 full days since I ate the floured walnut and I am still not at a 100%, but at least my bathroom excursions have lessened, my migraine has subsided and hopefully I will sleep comfortably through the night tonight.
“Hi Kirsten, was out riding the motorcycle yesterday and stopped at a medium upscale restaurant to grab an appetizer. They had a gluten-free menu. I quizzed the waitress for two or three minutes before placing the order. The server brought the dish out and I quizzed her again to be sure that this was the gluten-free option. One bite into it I knew it was not gluten-free. Fortunately I did not get sick, but I have no faith in trying to eat out anymore, at any place, regardless of its reputation.”
I’m sorry you had such a horrible experience. The only local place I feel safe eating at is Pizza Hut. They worked with the GFCO to develop a safe gluten-free option. I’ve had the pepperoni gluten-free pizza three times and have not had a problem. My extreme gluten sensitivity keeps me afraid of trying most other places. When getting together with friends, I usually bring my own food. It’s hard, but I don’t want this life to keep me from enjoying time with them. My only run-ins with gluten have been from cross-contamination. I hate to think what actually consuming gluten would do!
I know what you mean about trying new places, its always a roll the dice. I always try to call ahead and see what their attitude is, tweet them, look at reviews and then decide. Living in Colorado for the last month has benefice because people see to really go above and beyond here for safety or are really honest and say yeh, no, if I had celiac I wouldn’t trust eating here. Thats all you can ask for.
So am I the only one wondering if there was or will be a second date?
Lol, you’re funny Carrie. Yes, actually and amazingly enough there was. He has a couple friends that have celiac & was very sympathetic 🙂
I commiserate with you. I get so bored eating g-f and paleo and being strict 100% with my diet, However, most every time I eat out I have been glutened to some degree. This affects my balance too, with something called “Gluten Neurology”, and all you same symptoms. The worst is the brain fog and irritable emotions.
My best cure is pastured chicken soup and lots of rest. I also use Young Living Essential Oils: Peppermint under the tongue and rubbed on the belly several times during the day. Licorice tea helps a lot too. I would never eat grapes or any fruit because of the sugar if I were trying to recuperate from glutening. If I eam feeling well, I will eat a small Granny Smith apple half however, apples and avocados as well as a few other things are on a list of toxic ingredients I read recently aimed at people with gluten sensitivity.
I have been a chef for 40 years and it’s a big challenge to reconcile my love of food with my g-f diet.
Wishing you a gluten-free life that includes no-risk restaurants.
Judith
Thank you Judith, I know what you mean. I mostly long for the eating freedom I once had. But, I eat much cleaner now than I ever have.
Kirsten,
I am really curious if you would consider a first date at the house of with a guy with celiac and ataxia for a guaranteed safe home cooked meal. Or is that just too boring for you?
I’m curious Michael if you have ever been on a date & something like this has happened and how the girl reacted if it has.
No, Kirsten. I made my attempts at gluten-free dining with a friend and with co-workers and got glutened both times, in the year of my celiac diagnosis, 2007, and got glutened both times. Granted, I did not know how daunting what I was attempting was, and it was for brunch and lunch. Don’t ever attempt it for those meals. By the lunch with co-workers, I had been “clean” for two months. I was ordering off a supposed GF menu at one of three known corporations at the time in the northwest Chicago suburbs that were “celiac friendly” and the only one that served lunch. It hit me exactly two hours after I ate that gluten-containing rice. My small intestines were in excruciating pain for more than a month and I got brain damage. I refused to eat in any gluten serving restaurant ever again. My boss was not happy about it.
As a result of having worked in restaurants, cooking, managing, bar tending, etc. in my gluten ignorant days, I know the range of education of the kitchen staff runs the gamut and how the protocols and setup are prone to disaster. Once you have ataxia, let alone 44% traumatic brain damage by the neurologist’s measurement, you have the same experience that Bob Woodruff did with brain damage in Iraq, having to relearn the English language like he did, it’s game over for restaurants, except dedicated GF establishments, especially since just breathing downwind of some restaurants bring on the ataxia, resulting in dropping and breaking stuff in the kitchen and not being able to talk the next day. Because of that little wrinkle, and my experience with women in the past like one girlfriend I tried to get off sugar, I really don’t attempt dating gluten-consuming women. I usually race through grocery stores. If I linger, some perfectly nice woman wil strike up a conversation, and I did exchange emails with one. She didn’t get it at first, but she’s pretty bright and figured out soon why I didn’t even want to meet for coffee. Another younger better looking one I did a good job of talking her out of it, ably demonstrating my neurological damage without really trying (not a good day) and commenting on it. Because she did not respond when she thought I was into juicing, judging by how much celery I had in my basket, and I briefly described my dietary dilemma, I guess I just subconsciously started pushing her away. She is a teacher and probably an awesome woman, but my imagination just told me that she was looking for a date to bring to family holiday dinners, and I can’t do that any more. I get ataxia just being in a house where any gluten is being heated. Heck, I even got glutened in a townhouse from someone baking holiday cookies next door, the aroma sneaking in through the electrical outlets.
Holy shite, that is insane. I have ataxia as well and have suffered some neurological issues because of it, but wow. I wouldn’t leave the house either. Though, I do find that Chicago (my hometown) does gluten free waaay better than LA (where I live now) does. I find that Chicago takes it more serious and there are more options compared to LA. On a the girl note, if the teacher is interested, give her a chance… You never know, maybe you guys could skype with family for holiday dinners 🙂
I let that one go…don’t know her name. I might not recognize her (was having a bad day)…probably never see her again. She said little. She smiled a lot. She was still smiling at me while she was waiting in line to check out as I was leaving.
Full disclosure, I had another glutening at home 2 months after the lunch with co-workers, with similar repercussions, but the one after that, being too sick and tired to remember to read a supplement label after no mistakes for 7 months, that’s the one that really did the worst brain damage.
Kirsten, I can’t believe you are writing and drawing so well. How long has it been since the glutening? Your comic strips are great. They tell the story so precisely. I think to be able to barf is an advantage…to get it out ASAP. I was doing that at the age of 19. I hated the burn. I think I willed myself not to do it anymore. The gastro doc didn’t have a clue – at the University of Illinois. He had me swallow a barium shake and witnessed pyloric spasms and diagnosed a “nervous stomach” and prescribed a bland diet, antacids and Valium.