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.
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?