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  • Scott Adams

    Newly Diagnosed Celiacs Need More Information About Managing a Gluten-Free Diet

    Scott Adams
    2 2
    Reviewed and edited by a celiac disease expert.

      A new study says celiacs need more information about managing a gluten-free diet, especially at first diagnosis.


    Connection. Image: CC BY-ND 2.0--Vegan Gaymer
    Caption: Connection. Image: CC BY-ND 2.0--Vegan Gaymer

    Celiac.com 01/05/2021 - The only current medical treatment for celiac disease is a gluten-free diet. Still, researchers don't know much about how people with celiac disease experience and manage a gluten-free diet, especially upon diagnosis.

    How has the explosion of new and improved gluten-free products on the market shaped the experience and management of celiac disease?



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    To answer these questions, a team of researchers recently set out to examine how people with celiac disease experience and manage a gluten-free diet.

    The research team included Lisa Garnweidner-Holme, Karla Sende, Monica Hellmann, Christine Henriksen, Knut E. A. Lundin, Mari C. W. Myhrstad, and Vibeke H. Telle-Hansen. They are variously affiliated with the Department of Nursing and Health Promotion, Faculty of Health Sciences at Oslo Metropolitan University in Oslo, Norway; the K. G. Jebsen Coeliac Disease Research Centre at the University of Oslo in Oslo, Norway; the Department of Gastroenterology at Oslo University Hospital in Oslo, Norway; and the Det Glutenfrie Verkstedet in Oslo, Norway.

    For their investigation, the team conducted semi-structured, individual interviews in various areas of Norway. Their analysis was guided by Interpretative Phenomenological Analysis. The team interviewed twelve patients with celiac disease, who varied in gender, age, family composition and time from diagnosis.

    The team found that people following a strict gluten-free diet faced challenges on personal, interpersonal, community and policy levels. 

    On the personal level, patients said it took time to become familiar with the gluten-free diet, and many were unsure about the nutritional challenges of adopting a gluten-free diet. 

    At the interpersonal level, patients worried about standing out and being seen as different, and many reported that the fear of gluten contamination took the joy out of social meals. 

    At the community level, the patients requested more and better gluten-free products, together with more knowledge about celiac disease among those who make and sell gluten-free foods. 

    At the policy level, the patients wanted political action to reduce the cost of gluten-free products.

    This study suggests that people with celiac disease would welcome comprehensive information about how to manage a gluten-free diet upon being diagnosed with celiac disease. 

    The food industry should be encouraged to produce healthy and tasty gluten-free products.

    Read more in BMC Nutrition volume 6, Article number: 65 (2020)

    Edited by Scott Adams

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    I totally agree. I would be a little careful about how the dietary information is presented though. Right after diagnosis, I would sometimes struggle with information overload. So, I think that having a good support system is vital.

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    My daughter was diagnosed in1989 and she was 2 years old. It fell on me to read thousand of labels with mush confusion. nobody believed me. They thought I was making it up!  Modified food starch was said it came from wheat but we later found American modified food starch  was only made from corn. I could go on and on. No help from the doctor (he said it’s kind of funny) but he  knew nothing. Vinegar was a question,  I had to make everything from scratch. Bread, pizza crusts, desserts. I could go on and on. I helped started the a support group in Westchester NY. There is much more help. Every product tells you if there’s wheat or even if it’s gluten-free.  Take your time and eat as much natural foods as possible.  Don’t give up!

     

     

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    Diagnosed 2006 and was told to find a dietician to help me with my meals. We were on Military salary and I couldn't afford that. I was not comfortable with my knowledge of hidden gluten until I'd been on the diet for 10 yrs. Most of my doctors say I'm allergic to wheat and have THAT written in my chart. Doctors need more training. I know more than my GP does about Celiac and that's not right. I did more crying that first year after diagnosis than I care to admit. I still avoid eating at any social gathering and I rarely eat in restaurants. I use my Celiac to get out of most food related social gatherings. I hate 'good intentions food' because if I didn't watch you make it or if you're not Celiac, I feel bad refusing your food but I WILL NOT eat it.  

    I think we should have a "buddy system". People can sign up at the doctor's office to help newly diagnosed celiacs shop for food. I would love to help someone not feel so alone at the market. I'm the only Celiac in my family. How did I get so lucky?  Those are just my thoughts.

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    3 hours ago, Guest Liese N said:

    My daughter was diagnosed in1989 and she was 2 years old. It fell on me to read thousand of labels with mush confusion. nobody believed me. They thought I was making it up!  Modified food starch was said it came from wheat but we later found American modified food starch  was only made from corn. I could go on and on. No help from the doctor (he said it’s kind of funny) but he  knew nothing. Vinegar was a question,  I had to make everything from scratch. Bread, pizza crusts, desserts. I could go on and on. I helped started the a support group in Westchester NY. There is much more help. Every product tells you if there’s wheat or even if it’s gluten-free.  Take your time and eat as much natural foods as possible.  Don’t give up!

     

     

    I can't imagine how hard that was. Thanks for being a part of the group who blazed the trail for me!

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    31 minutes ago, Hellodee said:

    Diagnosed 2006 and was told to find a dietician to help me with my meals. We were on Military salary and I couldn't afford that. I was not comfortable with my knowledge of hidden gluten until I'd been on the diet for 10 yrs. Most of my doctors say I'm allergic to wheat and have THAT written in my chart. Doctors need more training. I know more than my GP does about Celiac and that's not right. I did more crying that first year after diagnosis than I care to admit. I still avoid eating at any social gathering and I rarely eat in restaurants. I use my Celiac to get out of most food related social gatherings. I hate 'good intentions food' because if I didn't watch you make it or if you're not Celiac, I feel bad refusing your food but I WILL NOT eat it.  

    I think we should have a "buddy system". People can sign up at the doctor's office to help newly diagnosed celiacs shop for food. I would love to help someone not feel so alone at the market. I'm the only Celiac in my family. How did I get so lucky?  Those are just my thoughts.

    I like the buddy system idea! 👍

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  • About Me

    Scott Adams was diagnosed with celiac disease in 1994, and, due to the nearly total lack of information available at that time, was forced to become an expert on the disease in order to recover. In 1995 he launched the site that later became Celiac.com to help as many people as possible with celiac disease get diagnosed so they can begin to live happy, healthy gluten-free lives.  He is co-author of the book Cereal Killers, and founder and publisher of the (formerly paper) newsletter Journal of Gluten Sensitivity. In 1998 he founded The Gluten-Free Mall which he sold in 2014. Celiac.com does not sell any products, and is 100% advertiser supported.


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