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10 Comments

  1. 1

    KateJ

    Nice list GD. One for the ladies: your “women’s problems” might well go away. (Mine did)

    Reply
  2. 2

    dee

    Congrats on the ebook, will it comes in paper book form at some point, for all us non-ebookers?

    Reply
  3. 3

    G

    Yes this disease is lifelong. Most days are Okay as you say, but many days are still terrible 4 years in. Usually I can pinpoint what is was that made me sick. I’m still figuring out new things, like some certified gf bread, store brand ibuprofen, etc. As you get better, you realize certain things that seemed not to bother before are now making you sick. I brew my own beer and even one or two beers usually makes me feel like crap the next day, so it appears my drinking career is over. Life with celiac is a major drag, that’s for sure. I just try to remember it’s not MS, ALS, etc. It does take away a lot of fun and freedom, for sure.

    Reply
    1. 3.1

      Pippy

      Would never want ALS, but sometimes I think I’d rather have MS than CD, at least they can eat with all their friends and family and no one teases them! My friends have potlucks often and it is hard. I nearly broke down in tears at the last one. I won’t, but sometimes I just want to drive off a bridge.

      Reply
      1. 3.1.1

        Elizabeth

        I’ve thought about this a lot, since in the past 18 months I was diagnosed with both CD and MS. MS sucks, but I am treating it aggressively. You’re right – CD is constantly on my mind, affects my day-to-day and social interactions, etc much more than MS does. Wouldn’t want to pick either, but celiac disease is definitely tougher than people who don’t have it might think.

        P.S. I find that I am much less emotional when I can’t eat out or at a potluck/family thing if I eat first and am not hungry!!

        Reply
        1. 3.1.1.1

          Pippy

          Dear Elizabeth,
          I am sorry you have both, that totally sucks times 1 gazillion. I have this nerve disease too, it is called erythromelagia. I also have a friend with MS. My symptoms seem sort of the same. I’d rather have the pain of EM than CD. But both make life extremely hard. Like you said, eating out, not being able to eat with others, the eye rolling . . . The patents it takes to live with this disease, is at times, way too hard. I am trying to find other joys in life, but it is hard when in pain all the time. Not pharmaceuticals have helped me. Just have to live with it. I don’t know about you, but the worst part for me is the depression I have to hide every day from every one I know.
          Hang in there! Hugz

          Reply
  4. 4

    Sam

    I always loved cooking but the challenge of cooking gluten-free turned out to be really fun! Been six months since my diagnosis. I would like to add on list that you can actually end up saving money because you’re doing home cooking. If you can’t go out to eat much then you’re going to want to stay at home and make your own food. And you don’t have to miss out on the foods you ate before. You can get replacement ingredients that are gluten-free and make your food from scratch. I’ve been able to duplicate several restaurant chain recipes at home. I have been able to make really great cookies and muffins and everything that I used to eat before. It’s even more of a challenge for me because I don’t just have celiac disease I am also allergic to dairy productsw, beef, and garlic. We can survive this!

    Reply
  5. 5

    Gord

    I’m three years into this learing curve and have discovered I am super sensitive, and after getting glutened several times by good-intentioned people and restaurants I have decided to only eat at home. My health has improved but my social life sucks. I did not go on two trips due to not being able to eat with the teammates, and have missed business engagements for the same reason. I don’t have great solutions figured out for “mobile meals” as GF bread make horrible sandwiches. It is a 24/7 thing so it is hhard to be “normal”.

    Reply
    1. 5.1

      dee

      I feel your pain Gord. GF breads, is the worst 😝😖 I too have not gone on trips, but I am going to start this summer.

      For short day trips, a Thermos with home made hot or cold stew/soup in it, is satisfying. GF crackers are pretty good much of the time. They are nice slathered with favorite topping (almond butter, cheese. . .). In a cooler, I bring frozen chicken, almonds, some veggies and a banana, every where I go so I will always have something.

      Hope it gets better for you 🌼

      Reply
  6. 6

    Laura

    Devastated by celiac disease and associated food toxicity. 2009 was the year when the public first heart about the gluten protein. Chronic explosive diarrhea following meals was too elusive for a certain diagnosis. A gastroenterologist publicized the relationship between celiac and its cross-mediators/cross-reactors: yeast, dairy, egg and coffee. Additionally, symptomology occurred with: preservatives and artificial flavoring. Through trial & error, I discovered other foodstuffs that create a toxic effect: flower and seed oils. Research of the oil extraction processed revealed that extreme heat and chemicals creates toxins. This too contributed to the GI effect. Long term & repeated exposures resulted in malnutrition and neurological disturbances to the point of Near Death by Gluten. Hybridization of wheat has occurred since the 1950’s. Chemical analysis revealed the gluten ratio has increased by 17 times since 1960. Six slices of today’s wheat bread have the gluten equivalent of 102 slices of the 1960’s version. There is no reversal of this disease. There is no hope.

    Reply

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