That’s right… I want to hear from YOU! If you’ve been a reader since last year, then this may look familiar to you. May is Celiac Disease Awareness Month and I want to make sure we shed light on the illness, as well as help to empower those living with it!
Last year I compiled various answers from you and create different posts on a few topics relating to living with celiac disease. I was trying to decide if I would ask you different questions or stick with the same ones… I decided to ask the same ones.
Here’s my reasoning why I’m sticking to the questions… first of all, I don’t know about you but my feelings and knowledge regarding living with celiac are constantly changing. So, I figure even those that answered last year will have different feelings and responses this year. My second reason for asking the same questions this year, is that last year I received SO many insightful, heartfelt responses that I thought it would be incredible to add to the lists and help create this very personal resource for people living with celiac.
I don’t know about you… but there is only so much I learn from my doctor. Sometimes A lot of times, I feel like he just doesn’t “get it” (if you know what I mean)… what better than having a great resources guide about living with celiac, from people that actually have or are directly affected by it!?
I want YOU to share YOUR feelings about living with the disease… this way we can see we’re not alone!
The first question:
“The most challenging aspect of living with celiac disease is ___.”
Your answers will be published in a blog post in May and will be anonymous, so if you’re uncomfortable leaving a comment here, please feel free to email me (kristina@msmodify.com).
If you don’t have celiac, but are a parent of a child…a spouse… a friend… etc… please to share what’s challenging for you!
**This first question is a little ironic for me, because if you follow me on Instagram or Facebook, then you know I’ve been incredibly sick this week from getting “glutened”… worst part is I can’t figure out what I ate that caused it. Regardless, this is the sickest I’ve been in years from my celiac. Luckily, 9 days later I’m starting to finally feel like myself again!
I shared this info on my social media… and the comments, DMs and emails I received with words of encouragement, tips, letting me know they’re praying for me and just checking in to see how I am doing just warms my heart so much. Living with an autoimmune disease can often be isolating and hard for others to relate, but because of this amazing community we have, I no longer feel alone.
I LOVE hearing from you and building this incredible community with you! 🙂
xo, Kristina
Eating out
I agree that eating out is very challenging! Thanks for sharing! 🙂
that the more I learn, the more I realize how much others do not know and how huge of a risk it is to trust others with anything related to food.
I completely agree with this! Thanks for sharing! 🙂
explaining to well mean individuals that “No, I can’t have just a bite. Or – yes, “eating it even once will make me sick and is not good for me.” So many people confuse (or don’t understand) the long term effects of Celiac Disease with the effects on a person with gluten intolerance.
Like others eating out at friends or a restaurant and the increasing impact of even incidental cross-contamination. The longer I have Celiac the worse ANY exposure hits me and the longer it takes to recover. Day 5 after eating a so-called clean plain green salad with no dressing in a restaurant- still feeling so rotten with brain fog and all the usual other nasty gut stuff. Discouraging and challenging- thanks for the opportunity to share.
I completely agree with all of this. The smallest amount of cross-contamination gets me too! My doctor explained to me so well why I feel so much worse now when exposed to gluten than initially. She said our immune system is like a bunch of little soldiers and any time gluten enters our body they start attacking. When I was first diagnosed they were attacking all the time (which isn’t good for our body), but now that I’ve been gluten free longer- they get more time to rest… so when gluten does invade, they are guns loaded attacking harder than ever (hence why it takes me so much longer to recover)!
I’m sorry to hear you’re feeling sick right now! I hope you feel better soon! Thanks for sharing!
Honestly, I have friends who just don’t get it. They say things like,” Can’t you just eat around the crust ?”, or “Eating a little piece of pasta will not hurt you.” But they don’t have the migraines that I get from foods that are supposed to be GF, prepared by friends or a restaurant.
Ugh, yes I unfortunately too have people like this in my life. Thanks for sharing!
As a celiac the biggest challenge are invitations to friends homes for dinner. I have to take a compete meal, otherwise I will get glutened.
Even if they try to serve a GF meal, gluten is in their spices, salt, embedded in their cooking utensils.
I just got back from my Gastro visit. I now am having Eczema attacks…major burning and intense itching. My hand and wrist look like Pop-Pi’s I am taking prednisone because it is so bad. My Gastro says that Celiacs and Eczema go hand in hand. He told me I must have gotten a lot of Gluten someplace! Does anyone have this symptom to deal with? Help, i don’t want to take the meds for it.