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Celiac.com Article:Do Dermatitis Herpetiformis Patients Have More Fractures Celiac Patients?

Jefferson Adams

By Jefferson Adams
in Publications & Publicity

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Jefferson Adams Grand Master
Jefferson Adams
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    • cristiana
      Family education

      By cristiana · Posted

      @sillyyak52 Welcome to the forum! I'm just about to go away for a couple of days but read this and just had to reply.  I am so sorry for what you are going through... it is really tough. Perhaps finding a short video online which explains the seriousness of celiac disease might help.  Just sit your family down and say, "Please just watch this one video with me."    There is one, here for example, on Coeliac UK, which I think is convincing - What is Coeliac Disease? https://www.coeliac.org.uk/healthcare-professionals/resources/videos-for-newly-diagnosed-patients/?&&type=r&set=true#cookie-widget I was watching a TV comedy programme we have in the UK over Christmas called Doc Martin.  If you get this programme where you live, there is a case on the final ever episode (Christmas 2022).  The seriousness of celiac disease is explained in that episode,. Perhaps watching something rather than reading would help?  But if you are after something short to read, I am not sure what country you live in but you might be able to find a coeliac charity that produces pamphlets, or perhaps your GP could let you have something?  Perhaps even better, would you be able to attend the GP surgery with your mother and get your GP to explain the seriousness of not complying with the diet? Cristiana
    • sillyyak52
      Family education

      By sillyyak52 · Posted

      I was diagnosed with celiac disease just over a year ago. I never had any gastrointestinal symptoms before I started eating gluten free, and the diagnosis did come somewhat as a shock. The symptoms that led to my diagnosis were fatigue, and an ongoing Iron and Vitamin D deficiency that worsened even when taking supplements. I visited my GP with these symptoms, which consequently led to a positive celiac blood test and eventually a positive biopsy. Since starting the gluten free diet, I no longer have any deficiencies or unexplained fatigue. When I am glutened now, I experience bloating, severe constipation (that often affects my sleep!) and an onset of fatigue.  My family does not believe that I actually have celiac disease, and thinks that all these symptoms are a 'placebo' effect of being told the 'wrong' diagnosis. Ever since my diagnosis, they have constantly been telling me that I should seek a second opinion. I really don't see the point of getting a second opinion. I trust that the blood test and biopsy were accurate, and the improvement in my blood tests, fatigue and the symptoms I experience now when I now accidentally consume gluten are enough for me. On top of that, if I were to seek a second opinion now, I believe I would need to do a gluten challenge to get an accurate diagnosis, which I am definitely not willing to do just to please my family.  Because they don't believe in my diagnosis, they think that I take the diet 'too seriously'. They are always comparing my celiac disease to my siblings' mild peanut allergy, and it is so exhausting trying to explain it when they just look at me like I am crazy. For example, since my siblings can eat products with 'may contain peanuts' with no issues, they tell me I am ridiculous for avoiding 'may contain gluten' products when possible.  I am also very careful about cross-contact in restaurants, which they will make similar comments about. I have been told are that "I need to stop being so fussy because I live in the real world". Recently, when I did not want to buy my birthday cake from a local bakery that confirmed their gluten free items are not coeliac-safe, my family told me "Well, who cares? They said it's gluten free. What more could you want? Do you need to take them to court to prove it's gluten free so you'll eat it?" It is truly so upsetting that after a year they have made no effort to understand celiac disease, and why I am so strict or 'fussy'. I have thought about giving them information to read, but my mom never ever reads anything. Not even her own emails, and will often make me read things and summarise them for her. She is honestly the one who is most difficult and very obviously still sees my celiac disease as something that I choose to believe.  How do you deal with people close to you who just refuse to understand? Are there any resources anyone could recommend for families that are short and easy to read?
    • Katya773
      Wholefoods 365 Organic Wheatgrass Powder

      By Katya773 · Posted

      Ohh gotcha , thank you! Makes sense why I got so sick 😕 Definitely avoiding this in the future 
    • pmarklesparkle
      Best apps for people with celiac

      By pmarklesparkle · Posted

      Thank you, Hopeful!  I've downloaded both of those apps and will try them out.  Much appreciated!
    • Thelma Cadieux
      Cycle of dermatitis herpetiformis

      By Thelma Cadieux · Posted

      Thanks but I will check it out with my doctor, usually stress will trigger it,
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