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

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
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
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

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

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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      4

      Shingles - Could It Be Related to Gluten/ Celiac

    2. - Mari replied to Jmartes71's topic in Related Issues & Disorders
      18

      My only proof

    3. - Ginger38 replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

    4. - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

    5. - Scott Adams replied to emzie's topic in Related Issues & Disorders
      2

      Stomach hurts with movement


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,470
    • Most Online (within 30 mins)
      7,748

    Elkay008
    Newest Member
    Elkay008
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Ginger38
      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away 
    • Mari
      OKJmartes. Skin and eyes. Also anxiety and frustration. I have read that Celiacs have more skin problems than people who do not have Celiacs. I take increased levels of Vit. D3, very high levels of B12 and an eating part of an avocado every day. KnittyKitty and others here can add what they take for skin health. A Dermatologist might identify the type of skin condition. By eyes you may mean eyesight problems not just irritated, red eyes. It is not very difficult to get a diagnosis of which eye condition is affecting your vision but much more difficult to find an effective remedy. The ophthalmologists I have seen have been only a little helpful. There seems to have been some advances in eye treatments that most of them are completely ignorant of or just won't add to their treatment plans.  Forcertain you may as well buy some remedy from a facebook ad but that is obviously risky and may actually damafe your eyes. However it is known that certain supplements , taken at the effectivelevels do help with eyesight. Two of them are Luten and zanthamin (spelling?)and certain anti-oxidants such as bilberry..    Hope this helps.
    • Ginger38
      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my  GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this.  He couldn’t guarantee me a negative biopsy meant no celiac bc there may not be damage yet or it’s possible to miss biopsies where there’s damage but he was so sure and convinced me I needed that biopsy I went back on gluten. It was a terrible experience! I took pictures of the bloating and swelling and weight gain during the challenge. I gained 9 pounds, looked pregnant, was in pain , couldn’t work or function without long naps and the brain fog was debilitating. And in the end he didn’t get a positive biopsy… so I wish I had never wasted my time or health going through it. I haven’t been truly straightened  out since and I am currently battling a shingles infection at 43 and I can’t help but wonder if the stress I put my body under to try and get an official diagnosis has caused all this. Best of luck to you - whatever you decide. It’s not a fun thing to go through and I still don’t have the answers I was looking for 
    • Scott Adams
      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until your holidays, prioritizing your immediate well-being and exams. To answer your questions, yes, it is possible for blood tests to be negative initially and become positive later as the disease progresses, which is why the biopsy remains the gold standard. Many, many people find the gluten challenge incredibly difficult due to the return of debilitating symptoms, so you are certainly not alone in that struggle. Wishing you the best for your exams and for obtaining clearer answers when you're able to proceed.
    • Scott Adams
      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping issues that can affect those with celiac disease. Is it possible you got some gluten in your diet somehow? This could be a possible trigger. Hopefully, tomorrow's appointment will provide clearer answers and a path to relief so you can get back to your lectures and enjoy your weekend. Wishing you all the best for the consultation.
×
×
  • 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.