Viewing 7 results - 1 through 7 (of 7 total)
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  • #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?

    #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.

    #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.

    #28968
    Colleen Steele
    Keymaster

    @gemsy-elizabeth you do have a lot going on and I can only imagine how much it complicates determining what is triggering symptoms and how to treat them. I do know autoimmune disease and sleep apnea is common among PHers.

    In regard to the vertigo. Co-moderator, @brittany-foster shared the following in the teen and young adults forum that might help you. https://pulmonaryhypertensionnews.com/forums/groups/teens-and-young-adults-with-ph/forum/topic/managing-dizziness-when-living-with-pulmonary-hypertension/

    If you meant to say celiac disease here is a link where it is mentioned within the forums.
    https://pulmonaryhypertensionnews.com/forums/forums/search/?bbp_search=celiac+

    Here is link where Raynaud Syndrome is mentions. https://pulmonaryhypertensionnews.com/forums/forums/search/?bbp_search=+Raynaud

    I will start a topic for both of these in the our co-existing forum to draw more attention to them.

    #26807
    Jerri Modrall
    Participant

    I have several autoimmune disorders; Type 1 diabetes, Celiac Disease, Ulcerative Colitis/Crohn’s, Rheumatoid Arthritis, Ankylosing Spondylitis…as well as as a connective tissue disease called Ehlers-Danlos Syndrome—all of which probably contributed to my PH and CTEPH. Especially the EDS.

    #18627
    Brittany Foster
    Keymaster

    Hey Stefan,
    Thank you for sharing all about your journey with this type of diet with us. it’s so interesting to hear from other people and get their perspective on how it has helped. Was this recommended to you by your doctor or was this something that you wanted to try? I find it so awesome that your memory and your energy levels even improved ! Personally, eating too many carbs in general just makes me feel so tired and worn down. I could see how cutting back on that would be beneficial, especially if the body has to work too hard to break it down like if people have things like a gluten intolerance. My friend was gluten free because of celiac and just that shift away from whole grains and certain carbs really made a huge difference. It’s harder to stick to when going out to eat. How do you accomodate for when you go out to eat?

    #14428
    Kathleen Sheffer
    Participant

    Last night I went out to dinner with friends. The friend who knows me best, who visited me in the hospital before and after my transplant, texted me to say he would order for the group and asked if I had any dietary restrictions. Sounds nice, but…

    My first impulse was anger. Now that I take medications to suppress my immune system and to protect my transplanted heart and lungs, I have to take extra care with food safety. I do not share food. I have to avoid certain fruits, cheeses, and cannot have cold or undercooked meats. I thought my friend knew all this as I’ve been living with this for two years and have eaten several meals with him. I thought back to the other night when we were at a party and he kept offering me chips out of a bag that multiple people had eaten out of. Yuck. He really doesn’t get it.

    My second impulse was despair. Do I have to accept that some people just won’t get it? Ever? Maybe I am too self-centered, thinking my friends should keep all this information in their head. But then I think about my friends who have Celiac’s or who are vegetarian. I’m able to keep track of that!

    On the other hand, I do have some friends who are very aware of my health concerns and go above and beyond to make sure there’s something for me to eat at parties. It doesn’t seem dependent on age as I first hypothesized — I have some friends who are more than twice my age who don’t get it (will pick things off my plate with their fingers), and some my age (25) who do get it (set aside pre-packaged food for me).

    Anyway, this is not entirely related to PH (though I was careful with sharing food when I had PH because common colds turned into pneumonia), but it’s an issue I’m dealing with. Do you have friends who don’t understand your condition no matter how many times you explain it to them? Do you keep trying, or have you simply given up on educating them?

Viewing 7 results - 1 through 7 (of 7 total)

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