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22 Comments

  1. 1

    Gloria

    Great rant!! After a few years I learned to tune it out. I just say NO and let my eyes glass over and my ears plug up. After 22 years of celiac I am tired of trying to educate people who think they know everything.

    Reply
    1. 1.1

      Gluten Dude

      That goes for a lot more than celiac ;)

      Reply
  2. 2

    Leah

    But there really are differences in severity. Anyone with celiac who eats a sandwich is insane, but I do not experience symptoms from CC and I *have also not suffered any ill health effects* (I am aware that “silent celiac” can be just as dangerous). I get my health checked regularly and despite exposing myself to possible CC almost every time I go out to eat, I am in great shape. Compare this to someone who is sick for weeks after sharing the wrong butter knife with someone, and it seems clear that there are indeed shades of celiac.

    Reply
    1. 2.1

      Gluten Dude

      In my humble opinion, all celiacs have a responsibility to protect the community. So no matter what symptoms you may or may not experience, by taking big risks, it says to the world that all celiacs can take that risk. Does that make sense?

      Reply
    2. 2.2

      Luna

      I heard the same story from a church member. Then I heard he had intestinal cancer. So, be careful. You might be harming yourself badly. In the meantime, you’re making the rest of us look like paranoid nutjobs.

      Reply
    3. 2.3

      Cali Celiac

      My father died from EATL cancer (Enteropathy-associated T-cell lymphoma) of the small intestine and though he was not diagnosed correctly it is clear to me he had CD which led to the cancer. I was not diagnosed until age 58 despite seeing a doctor for stomach issues for the first time at age 8, followed by years of doctors treating me for acid reflux and completely missing CD until I was anemic, having severe gut pain, occult blood and a host of other CD symptoms. You may think you are not being affected until symptoms crop up and you find out it’s too late for effective treatment, like my father did. If you are diagnosed CD and continue to eat gluten you are playing Russian roulette with your life. Not too smart.

      Reply
      1. 2.3.1

        corgimom

        My grandmother hates doctors, but about 10 years ago, she had intestinal cancer. She had “stomach issues” for as long as I can remember. She is now without a good portion of her intestines. She is VERY private and would never discuss any medical issues with anyone but my grandfather, so when I was diagnosed, I was nuts to think it could have come from her side of the family. One of her sitters (she’s 91 and lives alone) noticed that she seemed to have issues whenever she eats bread. But, why believe someone who sees you everyday and is your caretaker when you love a grilled cheese sandwich and canned french onion soup (eyeroll).

        I am thankful to know that I have Celiac. I will gladly take my gluten free treatment plan over the abundance of radiation that left my grandmother with a broken pelvis any day. I don’t feel one bit sorry about my situation.

        Reply
    4. 2.4

      Cali Celiac

      “I am in great shape”-Really? What kind of shape are the villi in your intestines? I fear that someday you will regret your cavalier attitude towards gluten and your health.

      Reply
    5. 2.5

      John

      Given human variability, and the complex genetics of Celiac disease, I would be very surprised if there were not differences in sensitivity. We accept that people have all sorts of differing symptoms. It is now known that Celiac may not manifest until late in life, in response to a trauma. So, I think it entirely possible that some Celiacs may be able to tolerate small amounts of contamination, amounts that would cause big trouble for others.

      That said, I hope they don’t let servers or other people know in a way that would reduce the sensitivity to trace amounts that affects so many of us.

      Reply
  3. 3

    Jen

    I just had to go off the rail on a very large appliance company who pushed my delivery date on my refrigerator two weeks. We just bought a new house, therefore no fridge. I had to try and explain to them about my Celiac disease and that I can’t just go out to eat for almost every meal for two weeks and they pretty much laughed at me. I HATE trying to explain to people the severity of this disease and being mocked or laughed at. I know some of it is ignorance but some of it is also because of those people who cheat or don’t even have an issue with gluten but say they are gluten free and cheat ALL the time. I was able to get a loaner fridge from the place we bought the fridge from. BUT I have to force them to give me a brand new one, due to our disease.

    Reply
    1. 3.1

      Gluten Dude

      Amazing…6 years after starting my blog and we’re still dealing with the same shit. Tell me why I do this again.

      Reply
      1. 3.1.1

        Jacqueline

        Because there is so much education that still needs to be done.
        Because you are a terrific person who cares about other people.
        It really doesn’t matter that there will always be people who “don’t get it”, what matters is you will give so many others hope and help.
        I wish you Happy Holidays and a renewal of your mission in peace.

        Thanks for your time and dedication to the cause😘

        Reply
      2. 3.1.2

        Molly Kate Russell

        Without you, some of us newbies would be lost. Regardless of how well others receive the information, those of us living GF need the education, maybe some day the others will catch up.

        Going GF is one of the hardest things I have had to do in life. Nursing school was a cake walk compared to this. Much like the person posted above, it sucks having to explain the severity of the situation. Its humiliating to be accidentally glutened when you are trying to survive “out there” only to find yourself doing a mad dash to the bathroom, praying you’re alone so that you can blow it out of both ends simultaneously without an audible audience.

        You do this because it is a situation you can’t live without… and neither can we. Thank you for your dedication to this forum and for being an advocate for our condition, it is truly appreciated.

        Reply
        1. 3.1.2.1

          Dee

          ditto to Molly and Jacqueline!

          Reply
      3. 3.1.3

        Dee

        Dude!!!!

        I spent 50 years feeling like crap! At about 50 years, I couldn’t take it anymore and attempted suicide, which landed me in ICU for 4 days on life support. As tears roll down my face I think of how much you have helped and encourages me and others; I thank you for your humor, your wisdom and your knowledge, while eating my breakfast of meatloaf filled with veggies, riced cauliflower, and kale. Every day that I feel well, I have you to thank. Because of you, I now eat unprocessed foods most of the time and the suicidal thoughts are now rare. In essence, you (and this support group) saved my life. I know I am just one person, but I hope you know how important you are to SO many of us!

        I will be forever grateful to you,
        Dee

        Reply
        1. 3.1.3.1

          Gluten Dude

          Wow. So so glad I helped you in any way on your journey. Blessings to you and wishes for a fantastic 2018.

          Reply
          1. 3.1.3.1.1

            Dee

            Blessings to you as well! You are very appreciated :)

            Reply
  4. 4

    Jessica

    Saying you have a little bit of celiac disease is as silly as saying you’re a little bit pregnant. And whether or not these folks who “cheat” have symptoms, they are damaging their bodies. I’m personally grateful that my daughter has severe symptoms from even a little cross contamination. It means she has no interest in taking any risks.

    Reply
  5. 5

    Adele

    Why can’t people just understand:
    Eating Gluten free to someone having Celiac is equal to Chemo to someone who has Cancer.
    It’s our Medicine !!!

    Reply
  6. 6

    Cali Celiac

    I can so relate to this rant. Just last week I was trying to explain to an engineer I work with how a bread crumb can make me sick and he physically rolled his eyes at me and gave an audible, sarcastic “really”. Some days I just want to snap their ignorant heads off . I try to educate whenever I can, but I get tired of telling people who are not listening, don’t care or forget everything I said in 2 minutes.

    On a positive note after 15 months GF I am beginning to come out of the fog and depression I’ve been in for years. I had forgotten what clear thinking and happiness are.

    Reply
  7. 7

    Sybil Nassau

    Hey there Dude, I am so glad to see you back from vacation and once again bringing some sanity to the world of this gluten free lifestyle. 1) I bought two of your books- gave one away as a raffle prize and am reading the other- way to go! Good job! You really bring a sense of clarity to this world but also a realistic view point! 2) would you come to CT in April to appear at gf EXPO- maybe tie it into a visit to NYC? Curious- let me know! 3) I came into this world more than ten years ago as NCSG- not celiac , but that is where my heart is- bringing comfort and information to this small group of people, lending my voice and big mouth to raising awareness of this dreaded autoimmune disease- sure there are worse illnesses from which to suffer- my goal is to help people realize at least they are finally diagnosed and can live a somewhat normal life- it’s “only” diet change not the end of the world!

    Reply
  8. 8

    Kate

    I went to a party where they had finger sandwiches. They were kind of enough to bring a gf bun (unfortunately, I could not consume because I have an egg issue, too) which was sooooo very sweet. But – then suggested I pull the meat off the finger sandwiches and put it on the bun instead.

    It’s frustrating when others don’t realize that the contamination alone will set off my intolerance, it doesn’t take much. I had pepperoni once that sat on a plate mixed in with soft pretzels and got sick; it’s wild.

    So, no thanks, I won’t just pull the bread off and swap the bread, or brush aside the “topping” on a dish that is gluten to eat what is underneath (Thanksgiving!). And no, just
    a few breadcrumbs in the meatloaf will make me not consume it. It’s not the quantity, but any amount which is difficult to get others to understand.

    I’ll pass and eat my protein bar if I get hungry…

    Reply

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