You’re too weak and you wanna cheat on your gluten-free diet? Go for it. It’s your early funeral. I just have one simple request.
KEEP IT TO YOURSELF AND DON’T DO IT IN PUBLIC!
When you’ve got celiac disease, I’m a big believer that you represent the celiac community. And with that comes a responsibility to our community. And if you knowingly cheat, you are making it more difficult for the rest of us to be taken seriously.
I see it on Twitter time and again; celiacs who think they are being cute when they’re really being idiots. Stuff like this:
“Ooops…I shouldn’t have that bagel but it looked soooo good. I’m so bad. #celiac”
“I am so going to regret having that piece of pizza. #celiac”
After seeing these types of posts far too often, I finally spoke up. Here’s how a recent Twitter conversation went.
Her: I’m going to start following my gluten free diet. Celiac disease will never take me. Holy shit are those bagels?
Me: Please don’t make it seem like cheating is an option for celiacs. Makes it harder for the rest of us. Thanks.
Her: I’m a celiac and I cheat. I’m not saying everyone has to. It’s an option. Anything can give you cancer, it’s just a matter of what triggers it. In my case it’ll be something I love ((pizza)). Also celiacs is relatively new; people have lived entire lives having it untreated and die from unrelated causes.
Me: I don’t care what you do to yourself. All I’m asking is not to publicize it, cause it diminishes the disease. Thanks.
I was trying to keep it civil, while helping her and the community at the same time. Naturally, other boneheads had to jump in and go in attack mode, telling me I was berating this person and being totally condescending. I even got railed on by a fellow celiac, who isn’t shy about how much she detests me. Whatever. Social media at its worst.
Look…I personally don’t understand anyone who has celiac disease and cheats. It’s poison to your body. And a piece of pizza is worth it? I’m not saying the struggle isn’t real. I’m not saying the diagnosis isn’t absolutely overwhelming at first. And I’m not saying that temptation won’t rear it’s ugly head once in awhile.
But do you really want to deal with the following:
“If celiac disease is left untreated, complications ranging from iron deficiency to osteoporosis to cancer may develop. Some of these problems can occur because of the small intestine’s reduced ability to digest food and absorb nutrients properly. Other problems may develop from damage to the intestinal lining that may or may not cause noticeable symptoms.” – WebMD
As I said, your body…your life.
But celiac disease is the real deal. It sucks and it’s life-long. And by your cheating and being public about it, it tells the world that it’s ok for celiacs to cheat. It tells the restaurant workers that a little gluten may be ok. And it tells the community that “we” are the ones being too careful.
Be cool. Don’t cheat. The life you save may be your own.
And if you do…
Great article! I never ever cheat, and I am almost paranoid about gluten getting in my food. I had a second endoscopy a few months back (first was when I was diagnosed 2 years ago), and the doctor said that I had one of the best healed guts (or something to that affect) that he’s ever seen. This was at the Mayo clinic, so I feel pretty proud of how well I’ve done! I just don’t understand why people cheat. I know it’s hard, but it’s not *that* bad! I just started the FODMAP diet for other gut issues, and so far on my menu is toast, peanut butter, chicken, beef, and spices (salt, pepper, tiny bit of sugar, cinnamon, thyme). That’s it!! Really really really hard, but I’m doing it! It’s not even been a week, but I’m already noticing far less bloating/gas, so something is working 🙂 If the diet makes us (and our bodies) feel so much better, why would you want to make your body in agony just to make your taste buds happy for a few minutes? Anyway, I digress.
On another note, towards the bottom, your grammar is incorrect. It should be “As I said, your body…your life. ”
“You’re” is the contracted form of “You are”.
Sorry, GD, but I’m such a grammar nerd, and it really bugged me 🙂 Just trying to be helpful!
Thanks. I’m a grammar stickler too and those types of errors are simply a result of me rushing. I caught them before I even saw your comment but I appreciate the help.
I couldn’t agree more with all of us who DONT CHEAT!! Its degrading to those of us as a celiac race, really. Please, you people who do cheat, don’t brag that you have Celiac, then shove a disgusting fast food burger into your giant mouth! Sure its the hardest thing to give up our favorite foods, but hey, if you’re passionate about cooking(as I always have been) you can find and even invent terrific recipes! It takes time and self discipline. That says a lot about you as a person if you KNOW this causes cancer and laugh in the faces of people who should be supporting each other in this life long battle. Shame on you.
MUST READ!!My first gift after being misdiagnosed for my whole life, was Jennifer’s Way, a book that still brings me to tears. I read it over and over as I spent too numerous of hours in the hospital to count. The two weeks before my biopsy, I hadn’t been able to eat anything, not even broth or water was staying down. Anyway I hope I’ve made my point in the two comments I posted, it is NEVER OK to cheat, and I’ll gladly share the big cup of shut the hell up if you choose to share your stupidty.
Totally agree. As someone who starts vomiting violently if I eat gluten the last thing I need is people in the general public getting the impression that it is ok for me to get even a little bit.
I try not to judge others for what they do personally. But, by cheating and then stating it publicly they impact the health and well being of others. Not very thoughtful and I hate the thought of making life tougher for someone else (especially kids who have to deal with this disease!).
Exactly. It’s not just about you.
I’m really concerned for new celiacs, and those left in a no-man’s-land due to improper testing or misdiagnosis.
When cheating celiacs joke about it, not only do they misinform nonceliacs, but they muddy the conversation and cause confusion for those searching for diagnosis.
I had a false negative for 3 years, so I didn’t think I needed to worry about strict gf. Most of what I knew about celiac came from a celiac woman I knew who seriously neglected her condition and got glutened left and right.
I’m glad I found well informed celiacs and sound sources!
Wow! I just don’t even get people. How would that EVER make your life better or easier, and to publicly announce it?!?! If you really love pizza so much, can’t you buy a gluten free one? Can’t you make your own? With so many options these days, there is no excuse for not being strict. Twelve years ago when I was diagnosed, I may have thought about cheating a time or two because I wasn’t sure what to eat, but I still ALWAYS knew it wasn’t worth it.
It’s people like this that just add fuel to the fire that makes most people think our community is a joke! Does she really not get that she is contributing to the issue of dining out and people not taking it seriously? So the next time she goes to a restaurant and then gets sick afterward, is she going to call them up yelling and screaming because they ‘poisoned’ her? The old adage “ignorance is bliss” does NOT apply here.
I’d like to know what prompted her to seek medical attention and get her diagnosis then. She must have been (or still be having, for that matter) having symptoms, so what in the world would make you do that to yourself to begin with, but then announcing your stupidity to the world?!? She doesn’t see how that could possibly look? Everyone in her life would think it’s a joke. I can’t imagine that anyone would ever care or take the time to try to make her a gluten free meal when they know she does this. I cannot see any logical explanation here. It’s just dumb all the way around.
Someone on my FB page said perhaps it was a cry for help. I thought about that too. But their follow up response just screamed “denial” to me.
Again, I completely agree with you. I don’t believe that whatsoever. And what you said is so, so true; I too cannot do anything about what you’re doing to yourself, but what you’re doing to the rest of us with your behavior is just sucky!
P.S. I know someone else that does this very same thing. She has “cheat” days where she has pizza and beer. I want to scream at her. It’s not a diet. She has made other friends question me and ask A LOT of questions, to which I have no idea whether they actually believe me or just think I’m being overly dramatic…
I went to our new neighbor’s house for dinner this week. She wanted to know how to safely cook for me, and as I started explaining ALL the things (and why I brought my own food), she was shocked about how sensitive I am. Especially since she has a family member with celiac who often says, “Oh, screw it. I’ll just eat whatever you cook and deal with a stomach ache.”
A stomach ache is the least of my issues. I just don’t get people. I really try not to be judgmental, but…
You and me both, my friend!!
I don’t understand why anyone would cheat. I rather not deal with the the pain, stomach issues, fatigue, etc. They wouldn’t cheat if they had cancer or diabetics?
I rather bring my own food than “borrow” my neighbor’s bathroom for the next hour while I am sicker than a dog.
“a stomach ache” …… If that were all it is, we’d all be eating poison when we felt like it.
I personally know a Celiac who chooses to eat whatever. In a rather minor car accident, the sternum, ribs, and several vertebrae were broken do to malnutrition induced osteoporosis. That person is still very ill 5 months later.
I agree with the Dude! Each time a Celiac “cheats” it is more difficult for the rest of us to live.
Celiacs who cheat think they’re choosing to. But ultimately your body chooses for you and forces a reckoning.
I think for some people, when they haven’t yet had to face that reckoning, the temptation to cheat is stronger. If only they could see how lucky they are to have the information they need to take healthy steps.
Yes, so much this. I got so much flak from fellow celiacs for being very very strict about my gluten avoidance — in which case I was following the instructions of my doctor. We don’t have gluten in our house at ALL because I have a 15yo who makes his own food and isn’t going to be safe enough in cleaning up.
I’ve lost friends over it, even. Because they think it’s safe for them to eat food that was prepared with glutenated food, or handle heavily-glutenated items (how often do you touch your face? Yeah. That’s why my doctor said to not even risk it), or to actually CHEAT, I was the bad one.
Well, okay. That’s your cancer. But you could maybe just not make the rest of us deal with your lack of acceptance of your disease. In that case, those folks were loudly trumpeting on internet forums how their unsafe food handling practices were actually “right” and how gluten was not a “magical food poison that sticks to anything it touches.”
Ummmmm. >.>
Guys?
So now they are preaching to hundreds of people very wrong information about how to be safe in kitchens, and what and when and where is safe with a shared kitchen, and what is safe for a celiac to do…
… don’t do that! Don’t make it unsafe for the rest of us.
THANK YOU.
I hate when other celiacs do this. I work for a University and when we get catering from a certain company, the manager always tries to tell me “I have celiac disease, but I can have a bagel here and there! Our food is totally safe.” Uhm… no. I don’t trust you even a little bit and you make the rest of us look like whiners. People need to understand that just because you have a lessened outward/physical reaction doesn’t mean the same damage is happening to your insides.
YOU ARE KILLING YOURSELF. Good job. *sigh*
“People need to understand that just because you have a lessened outward/physical reaction doesn’t mean the same damage is happening to your insides.”
Yep.
Where is the LIKE button!
There are people in this world who are going to self-destruct no matter what. The celiacs who eat gluten, the cancer survivor who continues to smoke, the diabetic who eats cake. If these people are selfish enough to do it to their own bodies, chances are, they are not going to listen to the advice of anyone else, nor care about how their public displays of selfishness are going to affect anyone else. It’s just frustrating that they always end up with the loudest voice.
[nodding my head in agreement]
I wholeheartedly agree with you, BUT what really gets me is that people like this make ALL of us look like fools and like we’re over-reactors. No one would say to a diabetic, ‘oh come on, is it really that serious you need to inject yourself?’ We have SO far to go to get people to understand that the only “cure” is to not eat ANY gluten, so this is just such foolishness!!
I agree with the sentiment of your comment. But while we are on the topic of educating others and not spreading misinformation that makes it harder for others to handle their disease, please be very careful about comments that “diabetics” shouldn’t eat cake. I imagine that by “diabetics” you are referring to people with Type 2 diabetes. However, since many people don’t distinguish between type 1 and type 2 diabetes (2 very different conditions), people assume the comments and stereotypes apply to both groups (which they rarely do). My daughter has type 1 diabetes, an autoimmune disorder, just like Celiac is an autoimmune disorder. Her body attacks the insulin producing cells in her body, so she will never make enough insulin to stay alive. She relies 100% on injected insulin. My daughter did nothing to cause her condition and she isn’t restricted in her diet. She it TOTALLY allowed to eat cake (in moderation, just like the rest of us). She just has to count carbs and dose her insulin and follow a balanced diet like everyone else (which includes some dessert). We all hate misinformation about diseases near and dear to us. No offense intended in my comment as I know none was intended with yours. Hope you don’t feel I am overreacting. Just hoping to educate a little. 🙂 PS – People with type 1 diabetes are at much higher risk of developing Celiac than the rest of the population.
Considering that my most worrying symptoms of being glutened are suicidal thoughts, depression, rage, OCD behavior, extreme anxiety, and other mental health issues that last for weeks after even the tiniest gluten cross contamination, on top of the fibromyalgia pain, arthritis flare ups, and gut reactions, I can’t imagine purposely cheating on my GF diet. It’s bad enough when it happens accidentally, no bagel, piece of pizza, or piece of cake is worth alienating my family, or sitting in my bedroom crying while I try to come up with reasons why I shouldn’t take every pill in the medicine cabinet and end it all.
Me too, psychiatric and neurological symptoms first. Then thyroid and fatigue.
Made for a difficult childhood!!
This past weekend I was exhausted, insomniac, CRAVING food, and anxious. Today I was full of desperate rage. Then it passes and I feel so ashamed and out of control.
I feel like I must have been glutened, but how? Was it because I joined my friends at a restaurant and breathed it in (I had only a glass of water)? Was the glass glutened? Is it the few gf bread products I consume? Is the testing suspect?
I’m not cheating and my house is gf.
Sorry if I hijacked your comment I totally agree with you!
This is exactly why the more celiac disease is publicized the less I can eat out…I am truly sick of it! I used to be able to at least go to a few places but not anymore, it just isn’t worth it.
I don’t get it. When I accidently get gluten I have such a violent reaction and end up in bed for three days. No piece of pizza or bagel is worth that. I believe if they think cheating is an option that maybe they haven’t been educated enough. I know for sure their reaction isn’t like mine. Thank you for the article!!
Another side-effect it that when non-celiacs get the impression that it’s ok for the occasional cheat, they get the impression that it’s ok for them to cheat *for* celiacs. In other words, “I know it’s got gluten in it, but I’ll just tell them it’s gluten-free and they’ll never know the difference because a small amount of gluten is ok”.
Or :
“I DONT know if it’s got gluten in it, but since it is naturally gluten free I THINK it doesn’t, anyway à small amount is ok so they’ll never know the difference”.
Yeah, true gf is just so exacting it’s hard for nonceliacs to get their heads around it, and they’ll revert to their own comfort level.
On one hand I can understand that another person wouldn’t know my dietary restrictions. But on the other specific info is so important and I love the affirmation I get from sites like GD.
If I have a mishap, I get violently ill and am out of commission for days! There is no way I’d even consider cheating. She’s lucky she doesn’t have such bad symptoms for sure, but don’t let that ruin eating out for the rest of us!
I can’t imagine purposely eating gluten! These people have probably not healed their insides and are having psychological and physical symptoms they don’t even realize are related to gluten. I agree with you in that it belittles the severity of Celiac Disease. It is a daily chore to stay healthy but once you get there so with it.
I don’t get this at all. I don’t have celiac but I am NCGS and my symptoms of getting glutened are PAIN. Migraines and arthritis flareups so bad I can’t walk are not worth any amout of pizza, donuts, french bread, etc. These people are nuts. If they don’t care about themselves, how ’bout a little empathy for the rest of us?
Wrong, girl! People used to live their lives with celiac and die of RELATED causes. And BTW it’s not celiacs. I’ll let Abraham Lincoln speak to you: “Better to remain silent and be thought a fool than to speak out and remove all doubt. “
I can’t thank you enough for bringing attention to this issue. The amount of people who preach about “cheating” and then get defensive about their self sabotage is astounding. It makes me so mad to see posts in so called Celiac groups on FB that start with “Don’t hate, but I just cheated on my gf diet”. Why share that? It just encourages the newly diagnosed and not so informed to stray. When these people bark back with “It’s my life, not yours so keep scrolling if you don’t like it” I just want to lose my mind! It’s my life too! We all have to deal with the reprocussions from people like this. Weather it’s at a restaraunt, a friend who just doesn’t “get it” or a brand that fails us .
I think about cheating when I’ve been cross-contaminated because hey, in for a penny, in for a pound, right? And then I remember the brain fog, and the back pain, and the irritability, and sleep deprivation. That usually kills that impulse right there.
I can’t imagine purposefully eating gluten. No matter how many times I say I will, I still haven’t followed through.
I had a cashier tell me it was okay to cheat because her friend does. She got a lecture. I think her ears are still burning.
Stories like this make me crazy and want to shake some sense into that person! I am NCGS– a little cross-contamination is not harmful for me, but eat anything with gluten on purpose and be sick for 3 days? I don’t think so! Like the woman who goes into a restaurant, makes a big deal about ordering a gf meal, then eats all the bread plus a regular beer – true story told by a chef who got very angry when he saw her drinking the beer. In my classes. we talk about the dangers of cheating- I emphasize it, discuss the down side, and say – It is bad enough to have it happen accidentally, don’t do it on purpose and set yourself back months. It just isn’t worth it! Some people do it anyway. I invited a health official who should know better, tell me she did not want to join a support group because sticking to the diet was too hard and she doesn’t bother- she has every symptom under the sun and is out of work more than she is there- that’s the kind of mindlessness that’s out there!
Bizarro. I agree with PinkFortitude about people self destructing, but yes, if doesn’t make life easier when we try to eat out. I have had servers ask if it was (something else – a sensitivity? They’re too polite to ask if it’s a fad diet) or an allergy. I always go with allergy, because I’ve BEEN sick from rice noodles probably cooked in regular water, after previously having been fine there for a few years (never eating at Michigan chain Noodles & Company again!). Do you suppose that people who haven’t officially been diagnosed with celiac (like myself), but know how sick they get when they eat it are more serious about the whole thing? (not that I would be any less serious if I could ever manage a gluten challenge to get scoped. If it was negative I’d just have to settle for NCGS).
Great article!
I got really mad at a friend with gluten intolerance once. She went to a seminar and told the organizer she couldn’t have gluten. The organizer got special gluten-free meals for her, which is something that unfortunately doesn’t always happen.
My friend, instead of being grateful that she encountered an organizer that was attentive to food restrictions, noticed that the gluten croissants and pasta looked much better than the gluten-free version and ate gluten.
The result? The organizer got slightly upset that she order special gluten-free food that remained untouched.
That organizer, probably, will start taking celiac much less seriously, thinking that people can cheat if they want to. I don’t blame her: that’s the image my friend gave of gluten intolerance and celiac disease.
That’s why I don’t like fad dieters and I don’t like celiac publicly cheating. It was annoying spending my Christmas justifying why I wasn’t cheating (especially because I don’t have immediate symptoms, and I got diagnosed at 30, so people think that ‘if you don’t have to run to the restroom, then you can have gluten, you always had it!’)
This is why I always explain that I nearly died from it ONCE. And once is enough. If someone tells such a story about a fellow “celiac”, I politely explain that they are committing slow suicide.
Yes, once you get that sick, it changes your perspective. I’m sorry you got so sick, but I’m grateful to read your perspective.
I find gf freeing in a way. The choice is made for me. I don’t have to wrestle with temptation or willpower or cravings all the time. It’s just not an option so I don’t pine over it.
I will never, ever understand those who cheat. It’s maddening to me and angers me so because it makes those of us who take our gluten-free diet very seriously look like idiots and it makes others–often folks who are feeding us–not take our way of living seriously. When surveys have been done with those with celiac, the percentage of folks who cheat has been about 30% and the cheating reported was at least once a month. It’s clear to me that those folks are eating a large amount of gluten so often that they don’t have the same reactions when they consume gluten as those of us who don’t eat any gluten. They deceive themselves and they harm us.
Shirley
People like her are why most sufferers of Celiac Disease can not safely enjoy a meal with friends and family unless they cook it themselves. Stomach ache? Seriously? I am on disability now due to all the damage done to my body after 40 some odd years of misdiagnosis. Lucky to be alive, at one point I could not remember my phone number or add and subtract anymore. Trying to talk in a normal conversation was hell as my brain searched and searched for words forgotten. I just spent 2 months on the road, and used the app “find me gluten free” to try to find safe restaurant food. Comments were from people with Celiac. They said “great food”, “no problems”, but I go in and ask the needed questions and get told “we have gluten free but, no, the food is not safe for people with Celiac”. WHAT??? How can they put GF all over the menu when it is not safe for Celiacs? Thanks “OMG I had to cheat the pizza was so good”. Thanks for making a joke out of a deadly disease. Thanks for making it so restaurants can falsely claim they have gluten free food. My family thought they had done so good in finding a place for all of us to go out to dinner, only to find the restaurant did not take the words gluten FREE seriously. I feel badly for her that she doesn’t love herself enough to eat what she needs to eat in order to not become even more sick. She already is showing brain damage with her lack of good judgement. Sorry, I rambled. That happens a lot thanks to so many who do not take this disease seriously.
Just shared this on my Facebook page, it’s ridiculous when people do this.
I can’t even talk for two days after a tiny bit of gluten so why people with celiac’s/ncgs would choose to eat gluten is just beyond me. Of course it can be challenging to learn all those little intricate details you constantly need to think about when you can’t eat gluten but the results to me were so worth it, it doesn’t matter to me anymore. It’s just something I’ve got to do to function and at home, I’m the normal one 😉 .
That’s so me. My mind can not function when I accidentally get glutened. I can’t communicate properly it’seems like my brain is on stand-by. It’s by far my worse symptom. And the mood swings are the hardest on my family and friends. I can deal with the tummy issues but my brain fog is hard to function with. I would never cheat and I rarely eat out because of the fear of cross-contamination.
Same here! My thoughts exactly.
SAME. It’s not so much the tummy ache and nausea that bothers me as much as the total memory loss and mood swings. Good thing I have an awesome husband.
My ADHD, which is already hard enough to live with gets infinitely worse after being glutened. So does my anxiety. I end up barely able to function, and being unable to function for a week in high school is terrible.
Totally agree and thanks for taking the potentially unpopular stance to protect us all. The societal perception of our condition and how that effects us eating safely among others is a HUGE challenge facing the celiac community.
Why would any celiac want to cheat? The thought of cheating makes me feel sick. 1 slice of gluten filled pizza is not worth the week or more after effects I’d go though. I went 6 years sick and dropped down to 97lbs before I got a proper diagnosis I will never go back to that! I was so malnourished and weak it’s not funny. I’m scared to eat out anywhere because small amounts make me sick. The smell of bread turns my tummy. No way would I ever knowingly eat gluten and celiacs who do make it just that much harder for the world to take our disease serious! Oh that’s just a fad! No not for me it’s not it’s a matter of life and death thank you. My tip you love pizza learn to cook! My gf pizzas are so good you would never know it’s gf!
//My gf pizzas are so good you would never know it’s gf!//
Mine aren’t that good yet, but they’re getting better.
I can certainly understand the temptation to cheat; I experience it all the time. I still love the smell of bread when my wife bakes her whole wheat loaves, but I’d never eat a slice (buttered and drizzled with honey) when it’s still warm from the oven like I used to do. But I sure understand the temptation.
There are compensations. I buy the Bob’s Red Mill “Gluten Free Hearty Whole Grain Bread Mix” and follow the instructions. It’s a really good dark bread with a lot of sesame and sunflower seeds. Very tasty and not too sweet. One does not have to be a very experienced baker to get good results with a product like this. I didn’t know about this product before I had to go GF, and it’s one of the good things to come out of it. (That’s good, because there aren’t very many. [sigh])
On a recent trip to Hawaii I was browsing through a supermarket to see what GF stuff I could find and I found some “pork pasteles”, which are something like tamales. These were made with “green bananas, taro root, pork, tomato sauce, onion, green onion, parsley, water, annatto, oil, garlic, salt, chili pepper, [and] olive”, wrapped in some sort of green leaf, and then in foil. They were actually pretty good. Because they were something that didn’t have gluten ingredients, I tried them. I might not have before, when my choices were much broader.
I guess my point is that eating GF is not the end of the world. It may be a call to expand ones horizons a little. And/or as you suggest, to learn to cook. I think that it has to be accepted that the diagnosis demands that one change. But I’d tell the cheaters that if they’re too weak to accept that, that they at least shouldn’t make it harder on those of us who do.
I seriously have nightmares about eating gluten! I would NEVER cheat.
I have nightmares that are so real that I would never intentionally cheat. I sometimes wake up screaming after being glutened.
Here’s the way I see it. You have the right to swing your fist. But this right ends where the other person’s nose begins.
Celiac cheating is swinging your fist. Doing so in a highly visible way, e.g., telling the whole world about it on social media or even just asking for bread at the restaurant after you’ve made it clear to everyone within earshot you’re supposed to be GF, is where the other person’s nose begins.
I had some other thoughts about this situation but I warn you this is going to ramble quite a bit so I decided to put it in a separate comment and I hope you, the reader can indulge me.
I don’t condone celiac cheating at all. But it might be insightful to consider what triggers this behaviour.
I’ve read a book called Switch by Chip & Dan Heath. In it they talk about how the human capacity for being “on” is finite. By this I mean, it’s mentally tiring to be constantly engaged in any voluntary task that requires undivided attention, regardless of its physical element.
We’re “on” when we’re doing our jobs (even desk jobs where you just sit all day). We’re “on” when we’re driving our cars. We’re “on” when we’re looking after our kids, or engaged in any similar sort of caregiving role.
We as celiacs are also “on” with every morsel of food we eat (assuming we’re taking the disease seriously and doing all we can to avoid gluten).
The point is, you can only be “on” for so much of the day and then your brain just surrenders and your involuntary impulses take over. The more time you spend being “on” for any one activity, then the less capacity you have to remain “on” for the rest of whatever you need to do to get through your day.
The Heath brothers in their book discuss this phenomenon in detail and offer, as proof for this finiteness of the human capacity to be “on”, a psychological study where this very subject was studied. I’ll describe this study from memory so I might be off on some details but the big picture of the study is what’s key here.
A group of scientists recruited some subjects for a study on how different types of people react to certain smells. For each subject they gathered all sorts of demographic information (age, gender, etc) and placed the person alone in a small room for a while with a large plate of freshly baked, very delicious-looking chocolate chip cookies (presumably these were non-celiac subjects!). The room was filled with the pleasant scent of these cookies.
The subject was told in order to maintain the integrity of the study that under no circumstances were they to eat any of the cookies.
Another group of control subjects were similarly placed alone, one at a time, in a room with some unappetising vegetables and also told not to eat them (presumably not a very demanding request!).
After this period of time alone with the food, the subjects were asked various questions aimed at what was going through their minds as they sat there in front of these cookies/vegetables that they weren’t allowed to eat. With all the questions answered, the subject was thanked for their time.
Here’s the thing. Everything in the study up to this point was a total ruse and only now was the REAL experiment undertaken. They asked each subject, oh, by the way, since we already have all your demographic info, if you would be willing to undertake a second unrelated test to see how well you can perform on a brain teaser puzzle. This request to participate in the second study was framed almost as an afterthought to all subjects (they were not told about it in advance of their arrival but only at the last second), yet in such a way they they would take the challenge seriously and honestly give it their best shot.
The truth is that unbeknownst to all subjects, the puzzle presented to all of the subjects had no solution at all; it was literally impossible to solve. The only thing the researchers were interested in for this whole study was comparing how much TIME the subjects in the cookie group and the vegetable control group were willing to spend on the impossible puzzle before they gave up on it.
They found pretty consistently that the vegetable control group subjects were willing to spend a great deal more time on this impossible puzzle than the cookie group.
Why was this the case?
Because when you’re there alone in the room with those cookies that you’re not allowed to eat, you have to be “on”. You have to activate your finite amount of will power to not eat those cookies.
For the vegetable group, not so much. Most people don’t have to resist the “urge” to eat vegetables. So the vegetable control group was never so mentally taxed. Going into the impossible puzzle, the cookie group had “tired” brains and just weren’t up to the task in the same way that the more relaxed vegetable people were.
So this brings me back to the celiac cheaters. Like I said, you have to be “on” to avoid cheating. This is on top of all the other things you have be “on” for throughout the rest of the day. This amount of otherwise “on”-ness can vary from one celiac to the next depending on what’s going on in their lives.
For the cheaters, could it be that they have so much else going on in their lives that they have to be “on” for — compared to other celiacs who have less trouble adhering — that they just don’t have anything left when it comes to being “on” for their diets?
Don’t get me wrong; I don’t condone the cheating for a second. But maybe it’s worth asking if there’s something else behind it. Maybe what looks like laziness on the part of these cheaters, is actually *tiredness*.
I think you’ve hit on a really good point here. I personally as a celiac, really struggle with being “on” and on high alert all the time with the food I eat. I currently live in a household with gluten eaters (this will fortunately not be for too much longer). So not only am I “on” if I go out to eat with friends, but in my own home I am constantly on alert in regards to reading ingredients, wiping crumbs off of counters, and vigilantly making sure the cooking services and tools have been washed properly. It really is exhausting to every day all day long keep making the right decisions and I have definitely, repeatedly, been the celiac who just gets so tired of being “on” that I slip up and don’t interrogate a waiter or don’t google a gluten free menu or make sure a dish was washed properly and then gluten myself as a result. Its not because I am willfully cheating. I haven’t done that since my diagnosis. It’s because I just get so tired of always always always staying on top of this that I slip up. That being said it is definitely NOT something to brag about. Cheating on a medically prescribed diet is not an accomplishment its a poor choice and does a disservice to everyone involved.
That’s an excellent point and it’s one of the many reasons I prefer a gf house entirely- the celiac can turn “off” in their own kitchen. It makes a huge difference to me. Of course that can be difficult for families with non-celiac children, etc.
Going gf for me was different than it is for many people. By that point I was so low in b12 I had lost my appetite entirely. My taste and smell was dulled and I had an uncontrollable aversion to food. So my body had sort of shut “off”. I couldn’t care about food anymore. So I never mourned the gluten I could no longer eat. My appetite improved after several months, but I’m not as overwhelmed by cravings as I was for years prediagnosis. I can think a lot more clearly around food and it’s made adherence easier.
I think people who cheat, especially young people, need support so they don’t have to carry the burden all alone.
I know at least 3 other teenagers who are gluten intolerant and 2/3 of them eat gluten 24/7 and the other person, who I’m friends with, just started to take things more seriously. Even though I’ve had to deal with celiac for pretty much my whole life, I still hate the thought of accidentally eating gluten and find it abhorrent when people actively choose to do so when they know they shouldn’t.
I know at least 3 other teenagers who are gluten intolerant and 2 of them eat gluten 24/7 and the other person, who I’m friends with, just started to take things more seriously. Even though I’ve had to deal with celiac for pretty much my whole life, I still hate the thought of accidentally eating gluten and find it abhorrent when people actively choose to do so when they know they shouldn’t.
Not being part of this community, I found this article to be an eye-opener. I have a friend with celiac disease and it just made me feel like I understood her better after this. Thanks.
That’s awesome!
It’s tricky with celiac because on the one hand, you can’t expect everyone else to know your exacting health requirements, but on the other hand often your safety depends upon people taking those requirements seriously.
I don’t have a diagnosis, but i have been sick with GI issues for at least 6 years. I have lost 52 pounds . I’ve had two negative celiac panel blood tests. I’ve been to 16 doctors before finding a holistic doctor who is trying to treat me for my severe gastroparesis (delayed stomach emptying). She told me not more gluten ever again or dairy. I cheated last Sunday and had some crackers and two cookies. what followed is my usual gastroparesis flair intense nausea and vomiting. I’m sick all the time anyway, why i would do so stupid as to cheat is beyond me. I am just out of bed today after three days. I can’t eat enough food to gain any weight. Little fat, almost no fiber. I am screwed. I will never cheat again. I’m always sick due tot he gastroparesis but ingesting any gluten seems to make things so much worse.
Hi Lenore!
Do you know of Crystal Saltrelli’s work? She’s at livingwithgastroparesis.com, she’s great for all things gastroparesis. I’m a health coach myself (like Crystal) and I specialise in people with chronic conditions (I have gastroparesis myself) who need to eat gluten-free. I’ve got a free course about it at sarahfrison.com/spoonieguide. It’s a self-guided program that walks you through everything you need to eat gluten-free with chronic conditions. It’s going to be around until February 16th.
Hope it helps,
Sarah
Sometimes it’s harder to adjust your habits if don’t have absolute proof through testing. You might have “what if?” moments and “test” yourself. But now it sounds like you’ve got the proof you need!
Honestly I had started to cheat a bit with lactose in cooked foods. Then I had a lactose challenge blood test and was sick in bed for two days after. That convinced me!
Should i get the endoscopy? I’d have to eat gluten again right?
I was diagnosed after years and years of doctors telling me I had GERD and IBS. Now I have osteoporosis. I can’t imagine doing this to yourself on purpose.
I swear my brain feels like an old fashioned rolodex. It can’t seem to stay on any one thing for more than a second. I feel so stupid i am always in a brain fog. I had to quit my job two weeks ago due to the debilitating fatigue and total lack of concentration.I saw 16 doctors in 13 months trying to get someone to help me figure out why i have gastroparesis. I can’t drive can make decisions well at all. I have a very serious vitamin b12 deficiency, ataxia and balance issues, GERD due to the gastroparesis. I thought i was doing a good job of staying away from gluten but i see that i was not and to deliberately eat crackers was stupid beyond belief. I also was just diagnosed with the gene mutation that does not allow my body to break down folate mthfr. I am not supposed to eat anything fortified with b12 or folate things like gluten free cereals and oatmeal. I’m feeling really lost. If i could just get my stomach and intestines to work i think i would start to feel better. When i eat gluten my stomach seems to shut down and my bowels as well. I see now that the little stupid things i was doing by accident not checking all labels may have be the reason i have constant nausea. This is much harder than i thought. I am so very sick and weak. Today is a new day. I have to put one foot in front of the other. I really want to get better and i hope it is not too late. It is at the point now that my brain is really not working as it should. This is a wonderful blog and full of so many helpful people.
Never too late. I was misdiagnosed for about 40 years. Nearly dead when finally diagnosed. The thing is, it is not as easy as people think to be 100% gluten free while living a “normal” life. Everything has to checked for possible gluten. Cross contamination is a huge issue, especially in medications and if you are eating out. I was being super careful, but my antibodies kept coming back a bit above normal. I had to go into hypervigilant mode with anything that would go into my mouth. People thought I was being ridiculous. But it worked. Finally, after 15 years of being super careful to be gluten free, and 1 year of being hypervigilant, my antibodies went into the normal ranges. I have a lot of damage in my body. I am now 63, so my body won’t heal as well as someone younger, but I am better. WAY better. So have hope, keep the faith and never give up fighting for your health.
Lol. Using web MD as a reference. People can do whatever they wish. If they do not have the self control to follow their treatment for their disease, it’s their choice. Patients do this all the time in the hospital, smoking with lung cancer, eating carbs with blood sugars in the 300s… As a physician with a slew of autoimmune diseases, including Celiac, I find this post obnoxiously dramatic. Especially when you use the word “cheat” as if it’s just a diet and not a medical treatment for an actual disease. Just focus on yourself.
my neighbor informed me that she has celiacs and cancer too. she said she feels better eating gf, but doesn’t follow a gf diet. she saw how sick i was but still goes on eating and drinking her gluten. I really do not get it, but it is her journey, right? I just feel so sad about it.
a few points on this topic. one you shouldn’t brag about stuff like that on social media. period. BUT not all “celiacs” have the same problems…. I was diagnosed via bloodwork with CD, then had a biopsy/endoscopy done and had normal bowels, with no CD in the biopsy… so I went on the diet because of the bloodwork…. started losing weight BAD. went down to 102# from 112#. like hello, this diet was supposed to make me gain weight. it was supposed to clear up my skin conditions, it was supposed to relieve my female issues, it was supposed to help me think clearer, it was supposed to stop the arthritic symptoms in my joints, it was supposed to help me mentally. IT DID NONE OF THAT!!!!I started in November of 2012, by july of 2014 said forget it, went back to non gmo, organic flour, making my own bread, etc. cut out all preservatives, and artificial chemicals… gained 10# in six months. skin issues gone, less arthritis. then in January went to the new dr (insurance change) they did a different blood test, said I had it, but refused to give me the actual numbers to compare to what I had been in November 2012. so I went back on the diet. cause they said I needed to. well, nothing much changed. I lost a few pounds, but was able to get it back slowly. but I still have arthritic days, I still have bad female issues, I am still just as foggy and unable to focus as I was before. finally last week, I was at a restaurant with friends, after having a HORRID night before with cramps and pain and sore joints, I said forget it, I’m having a piece of fresh bread. yeah I had a little bloating, yeah I had sore joints, but it wasn’t any different than the day before when I had been GF for MONTHS and was still in pain.
so please remember that not all celiacs have the same reaction as you, and frankly if its not going to help me and I’m gonna be miserable anyway, why not enjoy myself on an occasional basis.