Jump to content
  • Sign Up
  • Join Our Community!

    Get help in our celiac / gluten-free forum.

  • Jefferson Adams
    Jefferson Adams

    5 Things People With Celiac Disease Need You to Understand

    Reviewed and edited by a celiac disease expert.

    Caption: Photo: Wikimedia Commons--enoch lau

    Celiac.com 06/12/2014 - Here are five things people with celiac disease need regular folks to know about celiac disease:

    1. Photo: Wikimedia Commons--enoch lauWe are NOT on a Fad Diet—Celiac disease is not some vague, make-believe condition. Celiac disease is a potentially serious immune disorder that, if left untreated, can lead to a very deadly types of stomach, intestinal, and other cancers. Just because a bunch of people seem to think that gluten is the new high fructose corn syrup, doesn’t mean that I’m one of them. Remember, for people with celiac disease, gluten is no joke, and avoiding gluten is the only way to stay healthy.
    2. We Won’t Be Getting Over It—Currently, there is no cure for celiac disease, and the only treatment is a gluten-free diet. That’s the only way to avoid the gut damage, lower risks for other types of auto-immune conditions, and minimize the risk of various types of cancer associated with celiac disease.
    3. Celiac Disease is a Serious Condition—Since the effects of untreated celiac disease unfold slowly over time, it’s tempting for some people to look at celiac disease as a minor inconvenience. However, it’s important to understand that celiac disease is a potentially serious autoimmune disorder that, if left untreated, can leave people susceptible to other autoimmune conditions, and to deadly types of stomach, intestinal, and other cancers. 
    4. A ‘Little Gluten’ Might Hurt Me—There’s no such thing as ‘a little gluten’ to people with celiac disease. Gut damage happens with as little as 20 parts of gluten per million. That is a microscopic amount. A 'gluten-free' diet means no gluten. Period.
    5. When in Doubt, Ask—If you’re not sure if I can safely eat a certain ingredient, or a certain food, just ask. Figuring out what is or is not gluten-free can be tricky, even for me. So, it's best to ask if you're not positive.

    Can you think of others?

     


    User Feedback

    Recommended Comments



    I would add that having "no symptoms" is not an indicator of "no damage". We tend to think that if one doesn't react in a measurable way, you are ok. However, in the case of Celiac disease 60% of patients are "latent" in that their immune system is reacting but the patient doesn't have recognizable symptoms. Hence, the feeling that this isn't a serious condition . . .

    Excellent point!

    Share this comment


    Link to comment
    Share on other sites
    Hilary, you are SO right about "people not understanding it" but what's worse, in my opinion is the disservice brought on by "trend setters" that think they will lose weight on a gluten-free "diet"..yes, they think it's just the newest diet craze!, and because of that, people do not take celiac DISEASE seriously. This affects how we are treated in restaurants (as the waiters/waitresses and chefs even,may not take as many precautions), how we are treated with friends and relatives who just can't get it through their head that this is an autoimmune DISEASE!! Not a diet! I like that the word is finally getting out about gluten-free items and the products they sell are much better than they were even 5 years ago, but...the above mentioned gripe I think just sets us back a bit. It's bad enough that people don't understand celiac, or the popular phrase "I've never heard of celiac..what is that?" but to now be lumped in with the "gluten-free is a fad diet" crowd is a step back.

    We share similar feelings about the "fad" gluten-free dieters, and how they influence perceptions of celiac disease.

    Share this comment


    Link to comment
    Share on other sites
    I was 71 when I got diagnosed--went gluten free too late. I already had Hashimoto's thyroiditis and Sjogren's syndrome--both autoimmune diseases which might not be there if I had gone gluten-free years ago. So if you have some gut symptoms and your doc just passes it off as IBS or something else, ask him/her to specifically test you for celiac with a specific serology and maybe even get a biopsy or two.

    An excellent point, Bonnie! The sooner people are diagnosed, the healthier they will be. I'm sorry to hear about your other conditions. I wish you well.

    Share this comment


    Link to comment
    Share on other sites
    remember it is not an allergy!!!! I finally know why soaps, lotions, makeup and all things that go on skin made my body react not like an allergy but very angrily. the laundry soap and dish soaps even have to be free of wheat barley and rye byproduct.

    This is something I get conflicting info about. I have read that celiac patients need to avoid gluten in soaps, lotions etc., but my doctor insists that the gluten has to be ingested to do damage so I only need to worry about lipsticks and that kind of thing.

    Share this comment


    Link to comment
    Share on other sites
    I was 71 when I got diagnosed--went gluten free too late. I already had Hashimoto's thyroiditis and Sjogren's syndrome--both autoimmune diseases which might not be there if I had gone gluten-free years ago. So if you have some gut symptoms and your doc just passes it off as IBS or something else, ask him/her to specifically test you for celiac with a specific serology and maybe even get a biopsy or two.

    Some doctors will brush off concerns about celiac disease if you don't have dramatic symptoms. I was just diagnosed 4 years ago at the age of 47 and realized that vague symptoms I attributed to menopause or aging -- migraines, digestive problems, what I thought was IBS, bloating and water retention -- were caused by the celiac disease. And it seemed my teenage daughter had similar symptoms. So because of the genetic factor I brought it up to her pediatrician for the last several years and she kept saying "if and when she shows symptoms we can test." Finally this year I told her my daughter is going to college next year and I need to know before she goes if there is a problem, so she did the test. My daughter's antibody count was well over 300 and there was no doubt she had the disease even without the endoscopy. So if it is suspected, in my mind there is no reason not to do a simple blood test and we should all be persistent with doctors who don't want to do it.

    Share this comment


    Link to comment
    Share on other sites
    This is something I get conflicting info about. I have read that celiac patients need to avoid gluten in soaps, lotions etc., but my doctor insists that the gluten has to be ingested to do damage so I only need to worry about lipsticks and that kind of thing.

    I just was recently diagnosed. I have not been able to wear make up for a long time now, my eye lids crack and bleed. I just recently purchased certified gluten free make up, I had a job interview (I'm not big on make up), and I have worn it 2 different days, all day long and have not had any cracking, bleeding or burning, so, I am thinking there has to be something to not using products on your skin with gluten. I thought it was worth the try to use the gluten free, and it sure did work.

    Share this comment


    Link to comment
    Share on other sites
    This is something I get conflicting info about. I have read that celiac patients need to avoid gluten in soaps, lotions etc., but my doctor insists that the gluten has to be ingested to do damage so I only need to worry about lipsticks and that kind of thing.

    Jo, your doctor is wrong about this. Your skin is your largest organ, and it absorbs what you but on it and it goes into your body's system. Being just as mindful about what goes on the skin as in the body will keep one from having a negative reaction.

    Share this comment


    Link to comment
    Share on other sites
    remember it is not an allergy!!!! I finally know why soaps, lotions, makeup and all things that go on skin made my body react not like an allergy but very angrily. the laundry soap and dish soaps even have to be free of wheat barley and rye byproduct.

    What laundry soaps have you found to be gluten free?

    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 is Celiac.com's senior writer and Digital Content Director. He 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 science, scientific methodology, biology, anatomy, medicine, logic, and advanced research. He previously served as SF 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...