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

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.


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. ;-)

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

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. - Known1 replied to Known1's topic in Introduce Yourself / Share Stuff
      13

      Diagnosed Marsh stage 3C in January 2026

    2. - Known1 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      31

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - Jmartes71 replied to Kayla S's topic in Dermatitis Herpetiformis
      3

      Need advice for some relief!

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

      Celiac Disease, Lymphocytic colitis and Bowel rupture

    5. - Peggy M replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      31

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,528
    • Most Online (within 30 mins)
      7,748

    Brian Rooney
    Newest Member
    Brian Rooney
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Known1
      Pardon me, I stand corrected.  I did find yet another blood test for thyroid function. TSH W/REFLEX TO FT4:  2.91 mIU/L  (Range: 0.40 - 4.50) As you can see, I was within the acceptable range when the test was performed.
    • Known1
      I am curious: What was your initial level at? How many daily IUs were you taking via supplements and for how long? What did your level drop to? How many daily IUs are you taking now via supplements? Regards, Known1
    • Jmartes71
      Ive been dealing with skin issues and been told it was staph because I was employed as a bus driver during that horrid time that im still actively healing from currently years later. Biopsies they don't want to say its inconclusive they say.Their creams don't work.I do notice Yarrow Pom from Doterra works but of course thats expensive.Prayers
    • trents
      Welcome to the celiac.com community @MoniqueCham! Celiac disease damages the villous lining of the small bowel but, as far as I know, doesn't affect the underlying smooth muscle tissue of the bowel.
    • Peggy M
      I am monitored for this value of Vit D.  I kept going down so the Vit D had to be increased.
×
×
  • 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.