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    • #28972
      Colleen Steele
      Keymaster

      Celiac disease is an autoimmune disorder that’s triggered when you eat gluten.

      We have had members briefly mention celiac disease in random forums. I thought it would be helpful to start a topic just about this co-existing condition.

      I hope you will take a moment to share you experience and ask questions.


      @gemsy-elizabeth
      in particular would like more information about living with celiac disease and PH.

    • #28997
      Jen Cueva
      Keymaster

      I love this idea @colleensteele. I do recall we had a few who discussed having celiac disease with PH. I’m hoping those members can offer some information to @gemsy-elizabeth.

      It looks like Cleveland Clinic has a center focused on those with celiac disease.

    • #29027
      Gemma
      Participant

      Thanks – any info would be greatly received.

      • #29032
        Jen Cueva
        Keymaster

        It is our pleasure, @gemsy-elizabeth. We hope that others will see this and can share their experience with you. In the meantime, we are here to support you along your journey.

        If you have specific questions, feel free to ask.

    • #29357
      Stacy
      Participant

      I’ve never been diagnosed with Celiac Disease but I do have Gluten Intolerance. I’ve been gluten free since 2001. My doctor told me that anyone with an autoimmune disease should be gluten free because it causes inflammation for many. I also avoid dairy and nightshades. It’s just a lifestyle for me and there are many good GF options these days. Most importantly I follow a low sodium diet for my PAH. I find that more challenging especially going out to dinner at restaurants. Does anyone else follow a low sodium diet?

      • #29424
        Jen Cueva
        Keymaster

        Hi @stacypeace, thanks for sharing your experiences with your gluten-free and low-sodium diet. I would think that has to be a huge complication when eating out. Because my young adult daughter is sensitive to gluten, she eats a gluten-free diet. One thing I have noticed within the last few years, gluten-free options are available more at restaurants.

        As far as low sodium, that is more difficult for me. Especially that I love chips and salsa at a Mexican restaurant. I do not add additional salt and limit it to one small portion. This is usually a treat. Now I am craving chips and salsa.

        What are some of your favorite foods that you have learned to make substitutions or eat in moderation?

    • #29403
      Roger Bliss
      Participant

      I have Celliac disease along with PAH, got diagnosed with it 8 or 9 years ago through a blood test. As long as I eat gluten free, it isn’t a big deal. At first I was pretty upset and frustrated trying to eat out and having to give up some food/beverages I liked. Now days you can find pretty much anything gluten free, it.s just more expensive than regular food.

      • #29425
        Jen Cueva
        Keymaster

        So true @wheeldog, it wasn’t easy to find GF items a few years ago. Now, they offer the GF items at so many places. I know it does cost more since my daughter eats GF. I am familiar.

        What are some of your most missed foods and beverages? Keep working on that; you sound like you have it under control.

        • #29463
          Roger Bliss
          Participant

          Not realy any food I can think of that I can’t find gluten free…..but…..usually it doesn’t taste as good as the “real stuff”…..but I am used to it. I do miss a fine beer as the gluten free beer isn’t as good. I would love to go to Munich for Oktoberfest at least once before I die.

          I miss going to restaurants as I don’t know what I am going to get. Some actually understand the GF deal, others just think they do. I spent the night in the hospital…..they didn’t get it right. Supper was chicken with some mysterious coating and a dinner roll. Breakfast showed up with toast and some other mysterious stuff with GF clearly stamped on the menu.

          When we travel we use our RV. That way we can cook our own meals and can sleep in our own “cootie free” bed.

        • #29467
          Jen Cueva
          Keymaster

          Hi @wheeldog, I would hope that you can enjoy that “one” beer at Oktoberfest. In moderation, hopefully, your body will not be too rough on you after one. I think things in moderation are ok.

          My daughter is a dietician with gluten and dairy intolerance. She eats pretty strictly most of the time. But she has meals that she chooses to eat because she has a craving. She does, and sometimes, her body tolerates it well; other times, she pays for it, but she takes that risk. Her motto is in moderation; despite your diet, you should enjoy yourself.

          I am not a doctor and cannot tell you what to do. But unless it is an allergy, I would sip that beer at OKtorerbest. You may find that a few chugs are all you need. I do want to know if you do go.

          I love that you and your wife travel in your RV. My hubby and I say if we can afford a small one, one day we may get one so we will feel safer traveling. Plus, no cooties, LOL.

        • #29515
          Roger Bliss
          Participant

          After a couple years I got the bright idea of going off the GF diet to see what would happen. I was in so much pain the doctors thought I had Appendicitis. I was sent for a CT scan and it revealed one of my lymph-nodes in my back was swelled up and causing the pain. The next stop was an Oncologist. He found a couple swelled up in my neck and removed one for a biopsy. Turns out it was cancer, CLL/SLL which are forms of lymphoma.

          Now I know if I start getting a back ache, I accidentally got some gluten. Last time it was from a “gluten removed” beer. If I drink more than a couple or drink it 2 or 3 days in a row, my back starts to hurt.

    • #29421
      carol keilty
      Participant

      Yes I have a gluten problem and I don’t eat or cheese or drink milk. I use coconut milk for backing with. I make lots of things with oat meal and I have some other kinds of grains I can eat more that I can’t though. It is very hard to go out to a restaurant but I find lots to eat when I go to the grocery store at the salad bar. I guess it is a better way to eat when you have to keep an eye on your weight you can’t really cheat and eat things you shouldn’t because you pay dearly for that weakness faster then you gain weight. Good deterrent. I also haven’t been tested because I would have to go off the diet I am on for something like 6 weeks and eat high amounts of gluten and I know that would kill me so I just know what to stay away from. The low sodium sometimes I feel so sick if I don’t have salt so I don’t cut myself off of salt. I don’t eat an over abundance but I have chips sometimes and I salt my food. This is a great topic by the way.

    • #29426
      Jen Cueva
      Keymaster

      Hi, @carol. I bet that the coconut gives the baked goods a nice touch. Thanks for sharing your experiences with us here. I loved salad bards before the pandemic. I have yet to been to a grocery store except for one trip to Trader Joe’s because they had strict requirements to come in.

      I miss my grocery store trips. I also loved salad bars at restaurants, but I am more peculiar on salad bards, like buffets, so many hands are there. It is just my OCD, I guess. But I love a good salad bar if the place is pretty clean.

      I also eat lots of veggies, so I rarely eat beef. I eat chicken and seafood mostly and whole grains. I o love chips, pretzels, nuts, etc. I find some lower sodium options and limit when I have these.

      For you all @carol, @wheeldog, and @stacypeace, y’all may find this sub-forum on diet and nutrition helpful.

    • #29471
      carol keilty
      Participant

      I do go shopping every week my husband and I both go. I have a shield because I have a really hard time breathing in the mask. They say that the particles that spread the virus don’t float up just down so I am pretty sure I am ok. I have more then just gluten problems. There some kinds of nuts I can’t eat and tapioca which is suppose to be something that we can eat isn’t good. Corn oats coconut sometimes rice are all things that I do alright with. My daughter granddaughter and great grandson all have the same problem but we all have different things we can and can’t tolerate. Funny hey? Fruit vegetables and I eat meat I think it keeps my muscles strong and my heart is a muscle so if I keep it strong it will carry me through my life. I can’t eat bread pasta or drink milk or eat cheese all of which aren’t that great for us anyway but boy I love them. I have figured out how to make cookies for my little grandsons that doesn’t hurt their bellies so I like to do that. Eating is so darned important and it makes me sad when people don’t know that and get themselves in a bad way. Well that’s all I got for today.

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