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Coping With This Disease And Living Peacefully

sweetstronggoddessgirl1325

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sweetstronggoddessgirl1325 Newbie
sweetstronggoddessgirl1325
Posted

Hey guys....I'm kinda new to this...My name's Haley.. you can call me Hales for short.

I was diagnosed with Celiac disease in October..I was 17. I can't seem to get over the fact that I have this ....I think I'm greiving..i don't know :P I am so glad I found kids like me out there though...I am trying to live in peoce without getting mad at my genes or my body for giving me something I can't control......grrrrrrrrrrrrrrrrrrrrrrrrr!

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Karen B. Explorer
Karen B.
Posted
Hey guys....I'm kinda new to this...My name's Haley.. you can call me Hales for short.

I was diagnosed with Celiac disease in October..I was 17. I can't seem to get over the fact that I have this ....I think I'm greiving..i don't know :P I am so glad I found kids like me out there though...I am trying to live in peoce without getting mad at my genes or my body for giving me something I can't control......grrrrrrrrrrrrrrrrrrrrrrrrr!

It sounds strange to say but there actually is a grieving process because so much of our social interaction is centered around food and it seems like everything you used to not have to think about suddenly requires research and analysis. It does get better. Planning ahead makes a big difference because at first, there's a panic like "There's nothing I can eat!"

One thing that helped me out at first was finding out what I could have at all of the fast food places I liked (and some of them bluntly told me not to eat there). That helped me cope with some of the social issues. However, I was already married so dating wasn't an issue. Some of the others here can speak to that better.

On the other hand, now you know have the knowledge to make sure you stay healthy which is a lot better than getting sick and not knowing why. A few months from now, you'll be amazed at how much better you feel. I can tell you support groups make a HUGE difference. I went through my first year without one and joined mainly to keep my Mom company. But those quarterly meetings have brought a wealth of support and information and online places like this are invaluable.

confusedks Enthusiast
confusedks
Posted
Hey guys....I'm kinda new to this...My name's Haley.. you can call me Hales for short.

I was diagnosed with Celiac disease in October..I was 17. I can't seem to get over the fact that I have this ....I think I'm greiving..i don't know :P I am so glad I found kids like me out there though...I am trying to live in peoce without getting mad at my genes or my body for giving me something I can't control......grrrrrrrrrrrrrrrrrrrrrrrrr!

haley,

i totally understand. i am almost 17, and we are still waiting for results back from the lab, but we are almost 100% sure i have celiac. i have been strictly gluten free (gluten-free) for about 2 weeks. i understand the grieving process. i went through it a while ago when i was kinda gluten-free, but not really. it felt like torture. about 5 days ago tho, i got glutened on accident, and i felt so terrible, it got me through my grief REAL FAST! im not suggesting doing that intentionally, but that is really what made me get over this whole gluten intolerance. if you ever want to talk, you can email me at knshore@hotmail.com or my sn for aim is knsgoestonz511 is you ever wana talk...feel free. btw, where do you live??

Kassandra

MJS Rookie
MJS
Posted

yeah it sucks, and of course it's a big shock at first. the summer i was diagnosed, i gained over 9 pounds. my doctor attributed it to the fact that my intestines had actually started absorbing food, but i didn't tell him that i had found a recipe for gluten-free peanut butter cookies and i was sitting at home feeling sorry for myself and eating 10 cookies a day. i'm telling you about this so that you can avoid it!

but after a while i got over it, started running again (i had stopped a few months earlier when i got really sick), and immediately started to feel better. hopefully you will feel better too. i only found this site about a week ago, but i'm already hooked. it's great.

confusedks Enthusiast
confusedks
Posted

MJS,

thats really funny. i totally understand...i love gluten-free cookies!! i am going through that, but i am finding all of these other food allergies so i cant eat almost any of the gluten-free stuff now. :( lol...aw poor me...jk!

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    • TerryinCO
      New Guy Here...

      By TerryinCO · Posted

      Here's the test result I was refering to.  I may not be understanding this correctly.
    • trents
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      By trents · Posted

      Thanks for the update @TerryinCO! Would you elaborate what you mean when you say your genetic tests show that you are "10x higher" for developing celiac disease? 10x higher than what? There are two main genes, HLA-DQ2 and HLA-DQ8, that have been identified as providing the potential for developing celiac disease. Since 40% of the population carries one or both of these genes but only 1% of the population actually develops celiac disease, the genetic test cannot be used to diagnose celiac disease, simply to establish the potential for developing it. Gene testing is usually done to rule out celiac disease vs. NCGS (Non Celiac Gluten Sensitivity). In other words, if gluten consumption is definitely causing someone problems but they don't have the genetic potential for developing celiac disease then the diagnosis would be NCGS. We also know that having both DQ2 and DQ8 puts one at higher risk for developing celiac disease than having just one or the other. But I'm not sure I've ever seen it quantified as in "10x higher". Not sure what you mean by this.
    • Jordan23
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    • TerryinCO
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      By TerryinCO · Posted

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    • ALBANICKAP
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      By ALBANICKAP · Posted

      Thank you Scott, I will try what u suggested. 
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