Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Coping With This Disease And Living Peacefully

sweetstronggoddessgirl1325

Recommended Posts

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!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,202
    • Most Online (within 30 mins)
      7,748
    PatBurnham
    Newest Member
    PatBurnham
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By trents · Posted

      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Scott Adams · Posted

      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      CT with contrast.

      By Scott Adams · Posted

      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      New labs are now very elevated

      By Scott Adams · Posted

      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.