Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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 Celiac.com!
    eNewsletter
    Donate

How 'worthy' Is An Official Label?


Stern

Recommended Posts

Stern Newbie

My doctor is apparently not willing to do anything for me, and I've just been wondering about this for a little bit.

 

I've been on a gluten-free diet for a little under 2 years now. I went gluten-free with a friend that did have celiac disease, and recognized some of her own symptoms in the problems I'd been having. I felt so much better that month, that I knew that gluten had to be a problem for me. However, when I tested (I went back on gluten for a month, then had a blood test done), it came back negative. However, that month was horrible for me, and I went back on the gluten-free diet after the test.

 

So, I've been reading that blood tests aren't the end-all, be-all, and that endos or other tests are much more conclusive. However, my doctor didn't really jump at the idea when I presented it, and now I'm wondering, how much would the 'label' help me? Yes, it would let me know exactly what was happening to my body if I decided to eat gluten, but otherwise?

 

Some of my symptoms before (Pre-2 years ago, going on for... years and years...), flatulance, nose bleeds, what I'm suspecting was a slight case of osteoperosis (never got it -confirmed-, but I mean, I broke my finger catching a not-too-stong basketball pass.), something that the doctors called excema, and a few more things.

 

Could I get some help, please? I don't feel like my doctor understands, not that she cares either, and I'd like some more ideas of what my next step should be.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Ollie's Mom Apprentice

There are a number if us here who are "self diagnosed". We know gluten makes us feel awful, and know we feel better without it. Some of us (including me) wouldn't be able to do a gluten challenge to get an official diagnosis anyway. Just a trace of gluten and I'm violently ill for 24 hours, and feel like crap for days after that.

My personal opinion is that if you don't need special accommodations, like if you're a student trying to opt out of a mandatory meal plan at college or a younger child who needs special accommodations at school, an official diagnosis isn't necessary.

I figure if gluten is causing health issues, it's really a bit of a blessing. You don't need a doctor's approval or prescription to start a gluten-free diet. My doc thinks I'm a bit nuts for going gluten-free, but since it has made my laundry list of symptoms disappear, I really don't care what he thinks. ;-)

Link to comment
Share on other sites
Stern Newbie

Hahaha, luckily, not just yet, I get out of school before lunch anyway through my schedule, but I'll have to look into the college thing, I wasn't aware that I might have to work it wout with college, but I'll look into it (Not quite sure where I want to go anyway, this is going to be a factor, I guess. x_X ) I was worried about having to go back to gluten, but since you're saying it may not be necessary, I think I won't tackle it until it is really getting to be a problem (Which I haven't seen so far)

 

Thank you so much for answeing my question. :- ) I'm just kinda lost x_X

Link to comment
Share on other sites

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Bayb replied to Bayb's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Trying to read my lab results

    2. - Aussienae replied to Aussienae's topic in Coping with Celiac Disease
      65

      Constant low back, abdominal and pelvic pain!

    3. - trents replied to mishyj's topic in Coping with Celiac Disease
      3

      Why?

    4. - trents replied to mishyj's topic in Coping with Celiac Disease
      3

      Why?

    5. - mishyj replied to mishyj's topic in Coping with Celiac Disease
      3

      Why?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,219
    • Most Online (within 30 mins)
      7,748

    SoCalSuzy
    Newest Member
    SoCalSuzy
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Bayb
      Hi Scott, yes I have had symptoms for years and this is the second GI I have seen and he could not believe I have never been tested. He called later today and I am scheduled for an endoscopy. Is there a way to tell how severe my potential celiac is from the results above? What are the chances I will have the biopsy and come back negative and we have to keep searching for a cause? 
    • Aussienae
      I agree christina, there is definitely many contributing factors! I have the pain today, my pelvis, hips and thighs ache! No idea why. But i have been sitting at work for 3 days so im thinking its my back. This disease is very mysterious (and frustrating) but not always to blame for every pain. 
    • trents
      "her stool study showed she had extreme reactions to everything achievement on it long course of microbials to treat that." The wording of this part of the sentence does not make any sense at all. I don't mean to insult you, but is English your first language? This part of the sentence sounds like it was generated by translation software.
    • trents
      What kind of stool test was done? Can you be more specific? 
    • mishyj
      Perhaps I should also have said that in addition to showing a very high response to gluten, her stool study showed that she had extreme reactions to everything achievement on it long course of microbials to treat that.
×
×
  • Create New...