Jump to content
  • Sign Up
  • Join Our Community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Jefferson Adams
    Jefferson Adams

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

      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.

    Source:


    User Feedback

    Recommended Comments



    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.

    Share this comment


    Link to comment
    Share on other sites

    Some anxious celiacs have no choice but to be hyper-vigilant for their disease, lest they wind up in the emergency room. Others may be prone to clinical anxiety already. Either way, there are ways to mitigate the anxiety - ask your doctor for help. Mindfulness has worked for me.

    Share this comment


    Link to comment
    Share on other sites

    Couldn't it also that those that are "hyper vigilant" are more sensitive? I started out really lax, but my health only marginally improved. The stricter I got, the more my health improved (still not even close to before I became symptomatic and diagnosed celiac). Yes, it is stressful eating out when I get sick from simple cross contamination. I'm jealous of those who can just check ingredients without worrying about cross contamination and I have no doubt they have a better QOL. However, whenever I try being more lax about cross contamination I get sick and I have an even worse QOL. I disagree with the conclusion reached by this article. A better conclusion would be "those that are more sensitive to gluten have a lower QOL."

    Share this comment


    Link to comment
    Share on other sites

    Of course being vigilant causes stress to everyone around. The alternative of being sick for months after getting glutened is far worse. Anyone who doesn't get that should not be writing an article to just be chill about it and deal with the consequences. Vigilance is not optional!

    Share this comment


    Link to comment
    Share on other sites

    This kind of study will not help people with celiac disease to be taken seriously. How can people NOT be hyper-vigilant when someone's carelessness can poison you with a crumb of gluten and render you deathly ill for a week or weeks? Even people who do not experience painful symptoms would endanger their health by being more "relaxed."

    Share this comment


    Link to comment
    Share on other sites

    I saw this research written about somewhere else recently, too. It bugged me then and it bugs me now. What's "hyper" vigilant? I'm going to be careful about my diet, and that means no gluten ever. I'll be stressed if I have gluten, too, because then I'll be sick for about a week, with that followed by another week of deep fatigue. I'm very careful about what I eat because it's THE ONLY CURE for my disease. I hope I don't see this research on yet another celiac blog site.

    Share this comment


    Link to comment
    Share on other sites
    Of course being vigilant causes stress to everyone around. The alternative of being sick for months after getting glutened is far worse. Anyone who doesn't get that should not be writing an article to just be chill about it and deal with the consequences. Vigilance is not optional!

    We are simply reporting on the study that was published.

    Share this comment


    Link to comment
    Share on other sites
    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 couldn't agree more. Options are be hyper vigilant or be seriously ill. I wold think that is a no brainer. Celiac is stressful, it just is. This study is absolutely useless.

    Share this comment


    Link to comment
    Share on other sites
    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 am with you, as a hypersensitive celiac, there are no days without worry or stress from cross-contamination...the illness far outweighs the stress. This is our life...we do what we must do to stay well and functioning. If those individuals walked a mile in our bowels...good luck coming up with criticism of vigilance! PS Be well, cheering for you!

    Share this comment


    Link to comment
    Share on other sites
    Couldn't it also that those that are "hyper vigilant" are more sensitive? I started out really lax, but my health only marginally improved. The stricter I got, the more my health improved (still not even close to before I became symptomatic and diagnosed celiac). Yes, it is stressful eating out when I get sick from simple cross contamination. I'm jealous of those who can just check ingredients without worrying about cross contamination and I have no doubt they have a better QOL. However, whenever I try being more lax about cross contamination I get sick and I have an even worse QOL. I disagree with the conclusion reached by this article. A better conclusion would be "those that are more sensitive to gluten have a lower QOL."

    Well said!

    Share this comment


    Link to comment
    Share on other sites

    I agree with everything the previous commenters have said. This article makes me almost as furious as the gluten hulk that comes out when I've been glutened. People with celiac have to avoid gluten. Period. To suggest that there is “hyper- vigilance†when discussing a disease that compromises our immune systems with a crumbs worth of gluten is dangerous and irresponsible. I saw that the author commented saying that they were just sharing the study's findings. But sharing these type of findings only furthers the ignorance that has celiacs treated like we're hypochondriacs and fabricators. This is the stuff that tells wait staff that their eye rolling is appropriate and they don't have to be careful with our food. This is the stuff that tells ignorant family members, friends, coworkers, etc., that we really should just take the croutons off or take the burger off the bun. Yes, of course, we have more stress than people who can eat whatever they want whenever they want. That doesn't mean we should compromise our health and be less careful. It means we need to take extra care to find ways of taking care of our bodies and our minds. Meditation is a great way. How about you suggest some ways to be more mindful and present in response to the acknowledgment of the increase in stress that being a celiac and actually following protocol for this disease means?

    Share this comment


    Link to comment
    Share on other sites

    If anyone has been in some of these Facebook groups for celiacs one would see that many many peoples quality of life is in fact very negatively impacted, in many cases by fear and frustration. Do we need to be "vigilant"? Yes. Am I going to lock myself up and never enjoy anything anywhere ever again? No. I joined the groups for support and for some additional education and left because it was all fear and panic and hyper vigilance to the point of misery. So when this article alludes to maybe not being as vigilant as we are it doesn't mean "Sure! Eat that bread! A little won't hurt!" .... what I take it to mean is if everyone else is having bread,cake, etc I need to enjoy myself with them anyway. If my family wants to meet in a bakery, I eat first and enjoy the COMPANY and not the fact that I "can't".... and believe me I KNOW the fatigue and the brain fog all too well. But is loneliness and longing and fear really any better?

    Share this comment


    Link to comment
    Share on other sites



    Join the conversation

    You are posting as a guest. If you have an account, sign in now to post with your account.
    Note: Your post will require moderator approval before it will be visible.

    Guest
    Add a comment...

    ×   Pasted as rich text.   Paste as plain text instead

      Only 75 emoji are allowed.

    ×   Your link has been automatically embedded.   Display as a link instead

    ×   Your previous content has been restored.   Clear editor

    ×   You cannot paste images directly. Upload or insert images from URL.


  • About Me

    Jefferson Adams 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 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.

×
×
  • Create New...