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  • Jefferson Adams
    Jefferson Adams

    Being Too Vigilant About Gluten-Free Diet Causes Stress in Teens and Adults with Celiac Disease

    Reviewed and edited by a celiac disease expert.

      Is being too vigilant about gluten-free diet causing stress in teens and adults with celiac disease?


    Caption: Photo: Mike George

    Celiac.com 02/19/2018 - It's very important that people with celiac disease maintain a gluten-free diet. Still, there has been some data to suggest that some people with celiac disease may be "hyper vigilant" in their approach to a gluten-free diet, and that such extreme vigilance can cause them stress and reduce their overall quality of life. Can a more relaxed approach improve quality of life for some people with the disease?

    A team of researchers recently set out to determine whether "extreme vigilance" to a strict gluten-free diet may increase symptoms such as anxiety and fatigue, and therefore, lower quality of life (QOL). The research team included Randi L. Wolf, Benjamin Lebwohl, Anne R. Lee, Patricia Zybert, Norelle R. Reilly, Jennifer Cadenhead, Chelsea Amengual, and Peter H. R. Green. They are variously affiliated with the Department of Health and Behavior Studies, Program in Nutrition, Teachers College Columbia University New York USA, the Department of Medicine, Celiac Disease Center Columbia University Medical Center, Harkness Pavilion New York, USA.

    The team assessed the influence of QOL with energy levels and adherence to, and knowledge about, a gluten-free diet. For their cross-sectional prospective study, the team looked at 80 teenagers and adults, all with biopsy-confirmed celiac disease, living in a major metropolitan area. They assessed QOL using celiac disease-specific metrics. The team based dietary vigilance on 24-hour recalls and an interview. They based knowledge on a food label quiz. They used open-ended questions to describe facilitators and barriers to following a gluten-free diet.

    Overall, extremely vigilant adults had greater knowledge, but significantly lower QOL scores than their more relaxed counterparts. Both teens and adults who reported lower energy levels had much lower overall QOL scores than those with higher energy levels.

    To maintain a strict gluten-free diet, hyper-vigilant celiacs were more likely to avoid eating out, to cook at home, and to use internet sites and apps. For hyper vigilant eaters, eating out was especially challenging. Being hyper-vigilant about maintaining a strict gluten-free diet can cause stress and adverse effects in both teens and adults with celiac disease.

    Doctors may want to look toward balancing advocacy of a gluten-free diet with promoting social and emotional well-being for celiac patients. In some cases, allowing a more relaxed approach may increase well-being and, thus, make dietary adherence easier. Obviously, people would need to tailor any relaxation in their gluten-free vigilance to make sure they weren't suffering preventable symptoms or doing themselves any harm.

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    I agree with all of the other comments. This article is insulting, and reporting it here accomplishes nothing - people who are “hyper vigilant†(i.e. any celiac who knows what it's like to be sick for weeks if they are anything less) should get encouragement, not admonishment. If the food industry was better educated about safe handling procedures, maybe we could have more peace of mind. Telling us to take a chill pill is not a solution. Sure, you're only "reporting" on this article, but if the article does nothing useful... why are you?

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    We are simply reporting on the study that was published.

    I understand you're just reporting on the published study, but please understand that this study is nonsense. Stressful? No kidding. If I let my guard down even once I'm sick for days.

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    I couldn't agree more everyone! I'm told all the time I'm taking it to far with this gluten free diet. You bet I'm hyper-vigilant, there is no other options for people with celiac disease.

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    I am totally disgusted with this article! It is quite obvious none actually have celiac! Got to relax about this? Relax, get poisoned with gluten, swell up with arthritis, sick as a dog for weeks, pain, brain fog ,can't function. Relax, eat the crap, die, who cares? Who in the hell allowed this to be published on this site? Who approved this? I would really like some kind of logical explanation before I unsubscribe to this!

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    I don't care how many letters these "researchers" have by their names. This is idiocy! As one with celiac disease who chooses to be vigilant to keep gluten out of my diet, I do suffer from stress about it. Who wouldn't? I do cook at home most of the time, because it's just easier on me to know what I'm eating and how and where it was cooked. I do rely on internet and apps when going out, in addition to talking to the staff at restaurants. What's the alternative? Less stress is a lie. Eat the gluten, even in small quantities, and I'm stressed with brain fog, sleepiness, and discomfort in my gut - not to mention the gastritis it triggers, which then adds a couple more weeks of stress. A friend (celiac disease, as well) isn't vigilant and suffers the stress of the symptoms and the stress of guilt for not being vigilant and disciplined. This study is a total waste of time and money.

    I totally agree. The stress of getting glutened when you relax your vigilance even a tiny bit is far worse than the stress of being careful. And it seems like every SINGLE time I decide to just relax and trust when they say "oh yes, this is gluten free..." without verifying with the chef, well...I'm damn sorry shortly afterward. "Oops, we MEANT to use the gluten-free bread/clean grill/etc/other spice mix. SO sorry, here's a coupon for your next visit." Like I would ever go there again!

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    The only treatment for celiac disease is following a "strict gluten free diet." If you are not hyper vigilant how can you be following a strict gluten free diet? I can't believe they even waste money on studies like this. If I am not hyper vigilant I have symptoms. If I am hyper vigilant, no symptoms. Therefore, my quality of life while being "hyper vigilant" is better than it is not being hyper vigilant.

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    Even though I appreciate the acknowledgment that eating gluten free and being vigilant is stressful, the above comments make sense. How about putting the money towards educating the public? It's debilitating to be sick all of the time.

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    What baloney! My last meal in a "celiac friendly restaurant" landed me in the ER where I shook like I was hypothermic and vomited for 3 hrs while I lapsed in and out of consciousness. My days of eating out are over. I've had 3 months of nonstop joint and skeletal issues since then and was in a deep depression for 6 weeks. Joint pain was the initial symptom that led to my diagnosis in my 50's and I've never been depressed a day in my 64 years! And every time is worse! What's next? Death? Hyper vigilant? Hogwash....this is survival. Please Spend time and research dollars looking for therapies to get us out of jail!

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    This is dumb you have to be hyper vigilant all the time, or you will get sick there is no if and or buts about it. Yes it causes stress. If I eat out even if I researched the place ahead of time I have to be super aware of my body for the next hour after I eat to the next few day. I'm sure the lax people get sick a lot. Hey celiac people just chill take it easy so what if your eggs are cooked on the same surface as pancakes don't worry about it!

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    I think a lot of us are hyper vigilant because we've been traumatized from being "glutened." I know that the risk of going to hospital if I am exposed is something that's always on my mind, or wondering if the meal I just ate will make me sick and in bed for 3 days. I think as a gluten-free diet becomes more and more popular (despite the downside of people assuming you´re just being "trendy") restaurant employees will become more and more educated about celiac. I know I am seeing a difference in the last couple years. However, I wonder if anyone commenting has some helpful coping skills when you´re stressed about being glutened, or if there is a specific way you explain to servers and restaurant staff that you're celiac. Any suggestions appreciated. Thank you.

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    I am totally disgusted with this article! It is quite obvious none actually have celiac! Got to relax about this? Relax, get poisoned with gluten, swell up with arthritis, sick as a dog for weeks, pain, brain fog ,can't function. Relax, eat the crap, die, who cares? Who in the hell allowed this to be published on this site? Who approved this? I would really like some kind of logical explanation before I unsubscribe to this!

    We are reporting this published study--we did not write the study, or have anything to do with it, other than to summarize it here.

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    I agree with all of the other comments. This article is insulting, and reporting it here accomplishes nothing - people who are “hyper vigilant†(i.e. any celiac who knows what it's like to be sick for weeks if they are anything less) should get encouragement, not admonishment. If the food industry was better educated about safe handling procedures, maybe we could have more peace of mind. Telling us to take a chill pill is not a solution. Sure, you're only "reporting" on this article, but if the article does nothing useful... why are you?

    The article is useful if it stimulates discussion, it has done that. Additionally there may be things to learn from this study which are positive for some readers.

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  • About Me

    Jefferson Adams is Celiac.com's senior writer and Digital Content Director. He earned his B.A. and M.F.A. at Arizona State University, and has authored more than 2,000 articles on celiac disease. His coursework includes studies in biology, anatomy, medicine, science, and advanced research, and scientific methods. He previously served as SF Health News Examiner for Examiner.com, and devised health and medical content for Sharecare.com. Jefferson has spoken about celiac disease to the media, including an appearance on the KQED radio show Forum, and is the editor of the book "Cereal Killers" by Scott Adams and Ron Hoggan, Ed.D.

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