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Fear and burden of disease

Kurlykaitlyn

By Kurlykaitlyn
in Coping with Celiac Disease

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Kurlykaitlyn Explorer
Kurlykaitlyn
Posted

Hi all, 

i need to share the overwhelming emotions I have for living with celiac disease. I got very sick in end of May. My life took a few turns as I needed to quit my job at the time and it took about 8 weeks for me to mostly recover.  I’m now back in community college as I’m not ready to work a full time job. I was doing better, finding some balance in my health again, and about two weeks ago, I had a picnic with my husband and in laws. 
I ate mostly all my own food, but had some of my sister in laws chickpea salad. She’s aware of my celiac and takes precaution but I got sick anyway. I kept denying I was glutened, and thought I just ate too much, but my husband called out my symptoms and I can admit now it was contamination. I didn’t want the salad but I wanted to be nice… one of the struggles of being celiac, and even my husband emphasized to me I can’t afford to be nice. Haha 

ive been having liquid stools everyday since. My stomach starts to rumble and ache, and I get very nauseous as a pre warning, but other than this, I haven’t noticed other symptoms. I’m not becoming dehydrated or fatigued really. 
im concerned my body isn’t absorbing nutrients. I’ve been eating wholesome foods, but I suppose I need to go super strict and just eat rice and bananas again until the diarrhea fully stops. Does anyone have suggestions of foods to eat that are gentle and easy on the stomach, and help bulk stools? 
I try to stay positive but this is really effecting me emotionally. Sometimes I just feel like a freak and like something is wrong with me, or I have fear about my health and my future. Also, my husband is going away on a six day trip across the country at the end of this month. I’m totally worrying about being alone those days in regards to my physical well being, and emotional a little given the past few months. He’s already put this trip off for me so I need to accept and would appreciate any advice for staying strong during that time? 
i was totally fine being on my own before I got so sick before summer… but now I’m feeble and definitely had become a bit too dependent.

sometimes I feel very isolated in having an autoimmune disease and like I can’t function as a normal person in society. 🫠 If anyone else has or does feel this way too, plz tell me it’s not just me. I feel like I’m starting over during my recovery and in need of any tips and advice. 
thank you!  🙏

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Rogol72 Collaborator
Rogol72
Posted

I think we can all identify with feeling isolated having an autoimmune disease, even more so with multiple autoimmune diseases.
You're not alone. I would suggest looking up some podcasts on Spotify for inspiration and motivation.
There's a bunch of them there from fellow Coeliacs. Some titles to look out for ... 

"Eat Gluten Free with Me" ... pretty inspirational considering the journey
"A Gluten Free Podcast"
"Celiac and Gluten Free Living with Deb"
"The Healthy Celiac Podcast"

You do need to get comfortable advocating for yourself in social situations. Being assertive is a skill that can be developed,
even if it doesn't come naturally. Some of the podcasts above talk about this. 

Hope this helps.

Scott Adams Grand Master
Scott Adams
Posted

Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease:

This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together:

 

 

knitty kitty Grand Master
knitty kitty
Posted

Hey, @Kurlykaitlyn! 

How are you doing?  Did the diarrhea resolve?  I find dates are great sources of water soluble fiber that is great for bulking up stools in a gentle way.  

How are you preparing for your husband's trip?  Having hobbies and projects to work on helps me get through trying times.  I highly recommend knitting and embroidery.  Keeping my hands busy and my mind focus on something else besides Celiac helps me deal with Life's difficult times.  Having something pretty and useful at the end of it all is rewarding.  I'm happy to help you get started.  

Hope you are feeling better.  You have friends here for support.  

 

Kurlykaitlyn Explorer
Kurlykaitlyn
Posted
  • Author
8 hours ago, knitty kitty said:

Hey, @Kurlykaitlyn! 

How are you doing?  Did the diarrhea resolve?  I find dates are great sources of water soluble fiber that is great for bulking up stools in a gentle way.  

How are you preparing for your husband's trip?  Having hobbies and projects to work on helps me get through trying times.  I highly recommend knitting and embroidery.  Keeping my hands busy and my mind focus on something else besides Celiac helps me deal with Life's difficult times.  Having something pretty and useful at the end of it all is rewarding.  I'm happy to help you get started.  

Hope you are feeling better.  You have friends here for support.  

 

Just the last two days my stool has finally started bulking somewhat. It wasn’t complete liquid today so I’m taking that as healing progress!

it’s been hard to go anywhere aside from my  home and the house of the family I work for. I take care of their baby a couple days a week. I’ve needed to stay near a bathroom almost constant but that has been improving the last few days. 

im not sure what I’ll do when my husband goes. Im still worrying, though I’m trying not to do that because I know it’s a waste of energy. I’ve made a list of movies to watch, and I read a lot of books but haven’t been as often lately because Im tired from illness. I haven’t ever knitted anything, though that does sound like a good consideration for me to make. 
You have suggestions for a starter kit I can find somewhere, or some basic tips? 

Kurlykaitlyn Explorer
Kurlykaitlyn
Posted
  • Author
On 9/22/2023 at 10:57 AM, Scott Adams said:

Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease:

This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together:

 

 

Thank you for sharing this! Haven’t read it all yet but ive already jumped in and read a few parts. I plan to read more. It’s so true how much the world, US culture anyway, is obsessed with gluten… too bad it can’t just be potatoes. They’re very versatile. 

knitty kitty Grand Master
knitty kitty
Posted

@Kurlykaitlyn,

I'm glad to hear you're improving!  

There's many good learn to knit books, websites, and even YouTube videos.  Knitpicks.com is a favorite online store with great customer service.

A simple knit dishcloth or washcloth of cotton yarn is a good way to start.  And you end up with something useful!  

My favorite things to knit are socks and lace doileys.  

Hope you enjoy it!  

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cristiana Veteran
cristiana
Posted
On 9/24/2023 at 2:21 AM, knitty kitty said:

@Kurlykaitlyn,

I'm glad to hear you're improving!  

There's many good learn to knit books, websites, and even YouTube videos.  Knitpicks.com is a favorite online store with great customer service.

A simple knit dishcloth or washcloth of cotton yarn is a good way to start.  And you end up with something useful!  

My favorite things to knit are socks and lace doileys.  

Hope you enjoy it!  

I couldn't agree more, hobbies and interests are so important.  I never really had one until my aunt suggested how important it was to have a hobby or interest so that when my then baby girl finally flew the nest it wouldn't be devastating.  She was so right!  A couple of years later I got involved in a particular interest I am so thankful - it has helped me so much.  Dr Steve Llardi includes this type of meaningful activity as one of his six weapons to combat depression, the others being, physical exercise, omega-3 fatty acids, natural sunlight exposure, restorative sleep and social connectedness. 

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