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All We Talk About?

mamabear272

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mamabear272 Explorer
mamabear272
Posted

Do you ever feel like all you ever talk about is celiac? I'm newly diagnosed (about 3 weeks ago) and it weighs on my mind a lot! I feel like I'm always talking about my disease. It is not what defines me but it is new and I'm learning. I feel like a ray of light has shone down on me and I finally have a reason for why I was feeling the way I did. It actually makes me happy that there really was something wrong with me. I had been feeling bad for so long without a diagnosis and I started to feel like people thought I was making it up. But now that I'm diagnosed and trying to tell people about celiac, I don't want my friends and family to think I'm looking for attention or talking about my illness too much. I have a great support system with my friends (who are like family to me) and my actual family. I just don't want them to think that all I can talk about is celiac. I know I'm rambling. Just putting things out there. How do you all deal with it or did you deal with it when you were newly diagnosed?

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cap6 Enthusiast
cap6
Posted

In the beginning I fell asleep thinking about celiac and woke up with celiac on my mind. I wondered if it would be that way the rest of my life! Took along time but finally it's not All I think about. It sure is nice to just celiac talk though with others that understand. :D

Skylark Collaborator
Skylark
Posted

Food is such an important part of social gatherings and so essential, it's really hard not to think about celiac. Even when you get past the initial shock of having to think about every meal and snack, it jumps in a lot. Friends want to go to dinner and you have to find a gluten-free restaurant. There is pizza or donuts at work and you have to cope with feeling left out. A good friend offers you a cookie and when you politely refuse they are embarrassed becasue they forgot you're celiac. Celiac is sort of an in-your-face disease and yeah, I have to remind myself not to talk about it sometimes.

It got a lot easier when Mom went gluten-free. We share recipes. I also have three friends who are gluten-free now so I have other friends with gluten on the brain. :lol: We have parties in my circle of friends and gluten-free foods are the norm.

Jenniferxgfx Contributor
Jenniferxgfx
Posted

Sigh. It's definitely all I think about but I don't feel I'm talking about it much at all, and that actually makes me sad. I'd like to hash this out in a conversation or several, but I'm not feeling particularly supported right now. I appreciate this board.

come dance with me Enthusiast
come dance with me
Posted

At first yes. There were so many people I had to talk to about it because it was about my child who attends school and after school care as well as vacation care sometimes when she isn't at work with me on school holidays. I had to have a complete overhaul of the pantry and reassess what meals we were having and what to pack in the school lunch box and also call the places we eat out at.

It takes a fair bit of research finding out what's safe and what isn't so in the beginning it's always going to be at the forefront of your mind. After a few months of it we now don't think about it too much. I make everything from scratch and pack a lunch wherever we go but no longer have to think about it or talk about it with others.

obaketenshi Rookie
obaketenshi
Posted

LOL I feel like I bore my husband with it, especially with my penchant for ranting about subjects! I have two friends with it, but one of them is asymptomatic, so it bothers him a lot less psychologically than the other friend. I rant to other friends, but I don't think they really "get" it.

I am glad for this board, because I can ask questions and get knowledgeable answers!

mamabear272 Explorer
mamabear272
Posted
  • Author

I agree obake. I feel like I bor my hubby too. He acts like he's listening but really? lol I started a blog and I rant and vent there but I feel like I need to explain it to people. But at the same time, I feel like they don't get it. Maybe it will fade in time and I won't feel the need to talk about it so much. I just feel like that's all I talk about these days.

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Mummyto3 Contributor
Mummyto3
Posted

It's all I read about, talk about and think about. Its driving me crazy lol Since my daugher was diagnose early last month, I wanted to find out as much info about it as I can and I'm still looking. I also want to be well informed if people ask questions, like today. My hubby and I are awaiting our results and we'll be testing boys too.

domesticactivist Collaborator
domesticactivist
Posted

Welcome to the wonderful world of living as a crazy diet person! Early on in our journey I wrote a loooooooong 3 piece blog on the subject. (site linked from my profile). I find whenever something is major and new in my life it becomes all consuming. Plus, with this you start to see how others may benefit from knowing about it and it's hard not to go all evangelical on the subject. We're 7 months in and that aspect is getting better. One thing we did was start a blog and related business so that the people who actually want to hear about it can come to us!

Mummyto3 Contributor
Mummyto3
Posted

is it free to create a blog? I was thinking about that myself.

sb2178 Enthusiast
sb2178
Posted

is it free to create a blog? I was thinking about that myself.

Yes, and it's pretty fun if you like to write. I did one on wordpress.com, and others use blogger, or tumblr, or any of several other services. (If you click on the profiles, many people on the board including me have links to our blogs, so you can wander around and see what host might suit you.)

You can pay more for upgrades, like being able to completely customize your design, or adding videos, if you want. I haven't bothered, as mine is just basic. It's a nice teaching resource for family and friends too.

mamabear272 Explorer
mamabear272
Posted
  • Author

I also have one a wordpress.com too. The link is in my profile. It does help a lot. I am also reading everything I can get my hands on. I am finding that I want to talk about it simply because I'm so excited to find out what is wrong with me that I just want to tell everyone! "No I'm not crazy and no it's not all in my head. There actually is a reason I was so sick!"

Mummyto3 Contributor
Mummyto3
Posted

I also have one a wordpress.com too. The link is in my profile. It does help a lot. I am also reading everything I can get my hands on. I am finding that I want to talk about it simply because I'm so excited to find out what is wrong with me that I just want to tell everyone! "No I'm not crazy and no it's not all in my head. There actually is a reason I was so sick!"

I want to be able to say that too. My results are taking ages!

mamabear272 Explorer
mamabear272
Posted
  • Author

Mummy, if you've already been tested and are just waiting for results, why don't you try going gluten-free? The only reason you would have to continue on gluten is to make sure the gluten is in your system to show on the test.

domesticactivist Collaborator
domesticactivist
Posted

is it free to create a blog? I was thinking about that myself.

Yup, it's free, like they said.

I pay a little bit to have my own domain name (so it only has my company name .com, not blogspot or wordpress or whatever in the url). That's under $10/year for registration, but then I pay a monthly fee (around $7) to have it and some other sites hosted.

srall Contributor
srall
Posted

I did not have a celiac diagnosis. Based on the copious amounts of research I've done in the past year, including personal stories from people here, as well as some conversations with my daughter's pediatrician and my doc, I now believe there is a completely separate category that is gluten intolerance/sensitivity. I "knew" this before but now I KNOW it. So I self diagnosed and I am gluten intolerant. Since I initially didn't have a doctor telling me not to eat wheat, and I was trying to figure out why in the heck I was so sick all the time, I got there on my own. I thought and talked about it constantly, not because I was afraid of the diet, but because I felt really, truly, completely amazing for the first time since I was pregnant in 2003. After my daughter was diagnosed with gluten sensitivity by her pedi in October, I think the impact of the diet, and the life long commitment to food, cooking and lifestyle started to hit me.

Believe it or not, it is becoming more second nature for me to just shop for fresh food, and prepare fresh food for EVERY meal, but this was completely overwhelming at first. Now I enjoy it.

But in a few minutes we are heading to a family event so I have baked bread, made tuna salad, packed some safe hot dogs, packed the Lara Bars so we can eat today. I feel weird that I have to bring out the special food right when my daughter and I are ready to eat so nobody else will eat it first. After we've eaten they can have at it. But we'll also bring chips and fruit and wine to share. Okay...I see your point. It is easy to get obsessive about all of this. But I guess I'd have to cook anyway even if we were home today. And one of my friends is celiac, although she cheats :( but maybe she'll bring something safe. (Usually her safe contribution is rum.)

It should get easier, and once you start feeling better, I bet it'll be easier to stick to the diet. And not always talk or think about it.

love2travel Mentor
love2travel
Posted

Nope. Although I am constantly mindful of celiac disease (and my chronic back, etc. pain) I do not want to dwell on it. There are far happier and more exciting things in my life that I choose to focus on (i.e. cooking!). However, for the first three months after I was diagnosed it was definitely my focus as I wanted to research and become as informed as I possibly could (and still do). I do not want to be preoccupied with my health - have done that and I began the fear avoidance route which I now abhor! :)

come dance with me Enthusiast
come dance with me
Posted

Love2Travel I was the same initially wanting to know everything but now only mention it when it needs to be brought up like when we're visiting people I let them know that my child can't have gluten but the people we visit are now aware of it. We travel to see my mum fairly often and don't even need to take our own food there now and we travel to see a friend about 6 hours drive away and although we have to pack cereal and bread (plus we always take fruit) we don't have to take anything for the evening meal and she's very mindful when we're out at a cafe. The people we visit stick with fruit and veg anyway but on occasion I've had to bring it up at children's birthday parties that mine would love to come but she's on a restricted diet so please don't be upset that she turns down a lot of it. They have all been very understanding. We never "dwell" on it but initially there was so much to find out about it and with a child there were so many people to talk to about it.

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