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 have been "gluten-free" for 14 years, but until I went totally GRAIN free I still had symptoms. I don't trust anyone but myself to prepare food, and I read every label. I react to chicken that has been fed grain, I react to mushrooms grown on wheat based substrates, I have switched over to entirely grass fed and pastured meats because my gut reacts to even the supposedly "safe" less than 20 ppm. I'm hypervigilant and socially isolated, but I am healthy and no longer spend weeks running to the restroom or taking entire boxes of Imodium just to be able to leave the house. This article, and the study itself, is not useful to the people who truly suffer from this malady.

    Share this comment


    Link to comment
    Share on other sites

    Saying that people with a bonafide health condition should just "relax & imbibe a little" is absolutely ridiculous. People who can't have gluten have real problems that can only be avoided by avoiding gluten. Would you tell someone with, for example, a nut allergy to just chill out now & then & eat some nuts?? Of course not!! Would you tell a diabetic to stop being so hyper-vigilant about taking their insulin?? Absolutely not!!!! Is our quality of life decreased by of our dietary restrictions? You bet!!! But our "medicine" is to not eat gluten. If this article was debunking the legitimacy of the studies it refers to then I would support it being in this publication. But treating these studies as legitimate studies in this forum is absolutely infuriating. This is the last place I expected to find an article encouraging me to ignore my health problems and just dig in to some gluten now and then. I usually find the articles here to be very informative. I am so very disappointed with this one.

    Share this comment


    Link to comment
    Share on other sites
    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!

    Hey Patty, I suffer the same exact reactions to ingestion of gluten as you do. And as time has marched on, the reactions are getting worse. I've grown used to not going out to eat because I cannot trust that the employees will be as vigilant as we have to be. The last time I had a bad reaction was at a public function (I was at my sister's home with friends and relatives). It was extremely embarrassing to be hugging the toilet making horrible sounds like I was dying while throwing my guts up. Despite vigilance, I still paid a horrible price. I had another episode last Christmas week. This was my fault as the crackers I was eating were not gluten free. So I finished last year with only one visit to the ER. I thought I was being vigilant, DAMN IT! I would love to go out to a descent gluten free restaurant. I would love to be able to afford the new gluten tester machine but I can't . So I will stay home and continue to be VIGILANT as best that I can like everyone else here.

    Share this comment


    Link to comment
    Share on other sites
    Saying that people with a bonafide health condition should just "relax & imbibe a little" is absolutely ridiculous. People who can't have gluten have real problems that can only be avoided by avoiding gluten. Would you tell someone with, for example, a nut allergy to just chill out now & then & eat some nuts?? Of course not!! Would you tell a diabetic to stop being so hyper-vigilant about taking their insulin?? Absolutely not!!!! Is our quality of life decreased by of our dietary restrictions? You bet!!! But our "medicine" is to not eat gluten. If this article was debunking the legitimacy of the studies it refers to then I would support it being in this publication. But treating these studies as legitimate studies in this forum is absolutely infuriating. This is the last place I expected to find an article encouraging me to ignore my health problems and just dig in to some gluten now and then. I usually find the articles here to be very informative. I am so very disappointed with this one.

    We are not encouraging anyone who avoids gluten to eat it. We are summarizing a published study.

    Share this comment


    Link to comment
    Share on other sites
    On 2/26/2018 at 11:46 AM, Guest Dina said:

    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?

    I do the same thing.  I go everywhere I am invited, I just make sure I eat before I go or bring something with me.  I want to be included even if I can't partake in eating.  You need to stay social and your QOL will stay positive.  Make the situation about the people you are spending time with instead of the food you can't have.

    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...