Jump to content
  • Sign Up
Celiac.com Sponsor:


Celiac.com Sponsor:


  • Join Our Community!

    Get help in our celiac / gluten-free forum.

  • A Celiac's Quality of Life: Passages

    Janet Blenner, Professor


    Reviewed and edited by a celiac disease expert.

      Journal of Gluten Sensitivity Autumn 2009 Issue. NOTE: This article is from a back issue of our popular subscription-only paper newsletter. Some content may be outdated.


    Caption: Image: CC BY 1.0--cogdogblog

    Celiac.com 01/04/2020 - My interest in quality of life and celiac disease originated 4 years ago, beginning with my own diagnosis of celiac disease. I was relieved to finally have an accurate diagnosis after almost 15 years of misdiagnosis by an internist. He was convinced that my lack of energy was due to depression, but another physician, who suspected celiac disease, ran some tests and found that my lack of energy was due to limited absorption of nutrients.

    My psychological and subsequent physical relief over the diagnosis soon turned to frustration. I realized that I needed to adhere to a strict gluten-free diet. To my dismay, I found that many products contained gluten since it is an inexpensive binding agent. I also found it was necessary to be cautious about a variety of food products, vitamins, medications, toothpaste, lipstick and even postage stamps.



    Celiac.com Sponsor:




    I initially thought "Why wasn't I taught any of this in my nursing program?" There was a lot of information on diabetic diets but virtually nothing on the gluten-free diet. Of course, I also remembered that the teachers taught us that celiac disease only occurs in children. Being a nursing professor, I was also alarmed at how little my colleagues knew about celiac disease and the gluten free diet.

    After a lot of reading about celiac disease I realized how common it is for physicians to misdiagnose it. Adult celiac disease is not emphasized in medical, nursing or other allied health educational programs. I guess I should forgive my internist!

    I decided to educate every doctor, nurse, student, and anyone else who would listen. I am sure that people whispered "Here comes the celiac advocate again." Educating health professionals was interesting. In fact, one nurse said to me that she could never be on a gluten-free diet.

    I said to her "Like one has a choice".

    In addition, my life as a social butterfly was undergoing a metamorphosis. My pre-celiac diagnosis life consisted of social interaction with friends and associates at restaurants, parties and other social events. My husband and I also enjoyed eating out at good restaurants. In addition, I love world travel and sampling various ethnic foods.

    Passage:

    "Is this GF diet a conspiracy to ruin my life?"

    Compulsive grocery shopping

    I began to see life as having dealt me a nasty card. I do not enjoy grocery stores and I previously spent as little time as necessary shopping for food. I used the get in–get out approach. I rarely looked at food ingredients. Grocery shopping was just a means to an end.

    Now I must compulsively check ingredients for any hint of gluten. It has become the enemy and it is secretly hiding everywhere. And it's not just in the grocery stores. In some restaurants waiters told me that there was no gluten in the food, then arrived with a dish crusted in bread crumbs. I especially enjoyed the time when a waitress said that we do not use wheat in this dish and came out with a flour tortilla.

    I once interviewed a Chef who told me that she was on a gluten-free diet for one year. She said that it was the most frustrating experience of her life. She said that gluten forms the cohesive basis for most foods. It was what made baked goods nice light and fluffy. She was glad that she no longer had to be on the diet.

    Oh yes! Did I tell you that I have a shelf filled with many gluten-free cookbooks? They are busy collecting dust. Good intentions but not one has been opened yet. This is, in part, due to my workaholic schedule but the rest you can attribute to my lack of motivation.

    Health Food Stores and Gluten-free products

    Thank goodness for the celiac support groups. The group in my area has been so active and has encouraged the local health food stores to carry a lot more gluten-free products. To my surprise they sell GF fresh baked goods and other groceries. I was thrilled! However, I also started realizing that these products were often more expensive and some of the baked goods were very dense with calories compared to those that contain gluten. I was consuming a lot more calories than I should eat.

    Weight gain

    The next problem was gaining weight. Being able to absorb nutrients now, and the high caloric content of much of the GF products, caused me to gain weight. I decided to search for weight loss programs that could accommodate a gluten-free diet. Programs such as Jennie Craig do not accommodate GF diets. I finally found an expensive weight loss program that provided a nutrionist to develop a customized program. As with other things in my life, the program closed seven months later.

    Passage: Perceiving the glass is half -full

    Being on a Gluten-free diet has had some positive outcomes.

    Eating healthy and friends

    Shopping in health food stores has made me eat healthier than I have ever eaten in my life. My social life is diminished but I have some really good friends who consciously try to provide gluten free food for me. Others view it as though it is a preference on my part saying: "You can have a little gluten." I now know who my real friends are.

    Making new friends

    I was on a movie set a couple of months ago and a well known actor was there. I found out that he has celiac disease. It was like meeting an old friend. We talked for over an hour about gluten free diets, and the impact it has had on both our lives. You see, being a celiac helps you make new friends!

    A New focus for my life's work

    Being a celiac has also provided a new focus for my research. I am trying to help better understand the quality of life issues for those of us with celiac disease. I feel like I have this "inside" perspective.

    In conclusion

    Someone asked me the other day "If you had a week to have whatever you want, what would you choose?" I surprised myself by saying "To eat regular food for one week. That would be my dream."

    She laughed. Then she realized that I was serious. Maybe I haven't come as far in my passages as I thought.


    User Feedback

    Recommended Comments

    CDC/regional health agencies need to take a more proactive/preventive care in testing everyone for Cediac/gluten allergies.  What a failed health organization.  How many people with Cediac/Gluten allergies committed violence, suicide, just plain homeless.  We must protect those just growing up without the knowledge we all suffered threw without knowing. 

    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

    Janet Blenner is a nursing professor at San Diego State University School of Nursing. She is currently developing a new celiac disease quality of life scale (CQOL). She educates all of the nursing students, physicians, practicing nurses, and patients with certain diseases such as Crohn’s to get tested for celiac disease. Although she already has tenure and a full professorship (she no longer needs to do research), living with celiac disease has made her want to study the quality of life issues that surround living a gluten-free life. She has developed a Celiac Disease Quality of Life Scale (CQOL), to enable health professionals, researchers and others to better study and document the quality of life issues in those with celiac disease. In addition, all the celiac research has had to rely on generic measures of quality of life, and these scales don’t begin to captivate our unique needs.

  • Related Articles

    Scott Adams
    Scand J Caring Sci. 2003 Sep;17(3):301-7
    Celiac.com 09/03/2003 - A recent study published in the Scandinavian Journal of Caring Sciences looked at the differences in how men and women cope with celiac disease. The study concludes that gender should be taken into account in the treatment of celiac disease to improve its outcome. The biggest flaw in this study is with the...

    Jefferson Adams
    Celiac.com 09/15/2010 - Until the present study, no clinical research had been published regarding the relative effects of clinical and psychosocial variables on outcome in celiac disease.
    A team of researchers examined psychosocial factors that may influence disease activity in celiac patients, such as relationships among demographics, psychosocial factors, and disease activity...

    Jefferson Adams
    Celiac.com 02/28/2017 - It's no secret that psychological symptoms can be associated with celiac disease, but until recently, no one had really done a solid prospective study on children.
    A research team has now done just that. In this case, they looked at a group of children with celiac disease autoimmunity (CDA), which is defined as persistently positive celiac disease–associated t...

    Kit Kellison
    Celiac.com 05/03/2019 (Originally published 10/08/2010) - Through some intriguing recent studies, we are learning that celiac patients share some worrisome emotional experiences that will impact their quality of life.  
    When I queried the ICOR Celiac listserv about how people there coped with celiac disease, I got reflections of many of my own experiences in navigating ...

    Katherine Daly, Ph.D.
    Celiac.com 06/13/2019 (originally published 07/12/2010) - Celiac disease, also known as celiac sprue or gluten-sensitive enteropathy, is a condition characterized by chronic malabsorption and damage to the small intestine mucosa when gluten is consumed.  Once diagnosed with this disease, a person must adhere to a life-long diet free of gluten.  Symptoms that may occur when a pe...

  • Celiac.com Sponsor:

  • Forum Discussions

    Personallyu Well, actually there are plenty of studies showing the ingredients in GliadinX in fact does break down gluten by 50-85% before it reaches the small intestine. I believe the reason Scott recommends using it when you are ...
    I’ve been gluten free going on 14 years and as you all know accidents happen along the way especially when you are eating at someone else’s house or restaurants. ive been getting these attacks throughout the years and after having another one ...
    Have your doctors check for Mast Cell Activation Syndrome, which is still pretty new and not well known (not an IgE response, but similar in terms of symptoms).    It can be extreme or mild.   My triggers are insect bites and medications lik...
×
×
  • Create New...