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. - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      My Journey Continues some notes

    2. - Cecile replied to Cecile's topic in Related Issues & Disorders
      3

      Symptoms

    3. - Jmartes71 posted a topic in Introduce Yourself / Share Stuff
      0

      Not validated

    4. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      4

      New issue

    5. - Jmartes71 replied to chrish42's topic in Doctors
      3

      Doctors and Celiac.com

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

    • Total Members
      133,191
    • Most Online (within 30 mins)
      7,748

    LynnF98
    Newest Member
    LynnF98
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      I have increased my vitamin intake Vitamin B Complex plus 2 Thiamax, NeuroMag, Benfotiamine with breakfast. I continue reading and watching gluten free items that I eat. Breakfast is Bobs Redmill gluten-free oatmeal with Chobani zero sugar yogurt a banana and blueberries. Lunch since im at a deli gluten-free is hard to come by so I stick with turkey with gluten-free Promise bread. Dinner varies like gluten-free pasta, tacos, chicken, sausage, meat etc. rice or take out from gluten-free places. I have decided to stay away from gluten-free pizza as I feel I felt weird with it unless its store bought frozen. I am going to try to make my own gluten-free bread, Bagels. I have been good with baking gluten-free treats like cookies, muffins. Snacks if its not fruit, veggies I grab a protein bar or chocolate guilty pleasure reeses, hersheys, York PP. I am going to start to use my fitness pal app to track what I eat and note when I feel off to see if I can pinpoint if a trend of a certain gluten-free food is a culprit. I noticed once in a while I feel a little bloated, gassy that I think is from the pizza so I am going to avoid it and continue narrowing it down. I have been doing very well and I have learned even if you think you are doing everything 100% gluten-free eating it can sneak in without you knowing. This year is more traveling which im afraid of but have already looked into gluten-free places in Nashville which they have and back to Aruba I went last year and have the gluten-free places already selected. Most restaurants I have been to have been very helpful with what to stay away from to avoid CC. If a place states they don't have any gluten-free the I stick with a salad or when I took my kids to breakfast as much as I miss the breakfast this place serves I played it safe with yogurt and a fruit bowl so at least my kids were happy to go there again. Local farmers market has great gluten-free items that I treat myself to like different types of breads, baked goods. My journey continues...
    • Cecile
      Thank you Scott for your wonderful info. I will pry my Doctor for more extensive blood testing. I appreciate your time. 
    • Jmartes71
      After waisted time of new care team, yet again EXHAUSTED saw new gi today in Modesto, though all my ailments im not getting any kind of concern of me being celiac and sentive to just about everything since menopause. Dr daid why don't I go see you guys because my blood shows zero for celiac. I told him im glutenfree since 1994 by colonoscopy with biopsy positive celiac sprue by GI.Its RIDICULOUS when im bringing in material from this site of knowledge as well as the autoimmune institute,and  there's zero interest on their part.Medical IS causing me depression.Im view as a disability chaser, IM STILL RECOVERING from being a bus driver that im still healing and having more issues, now I may have multiple sclerosis or meningioma. Ive reached out, wrote letters, NOT feeling well. This is inhumane. 
    • Jmartes71
      I was taking medicine for sibo but it was not agreeing with my stomach at all.Was on gabapentin but it amps me up.I was taking in morning because it wasn't allowing me to sleep.This has always been an issue with medicine and me.Even going to dentist, the good shot that numbs you once, I can't take because it makes my heart beat fast and I  get the shakes.I have to take the crappy stuff and get injected always more than 4 times always.Its infuriating 
    • Jmartes71
      I showed one doctor I went to once because completely clueless of celiac disease and yes that one was connected to a well known hospital and she said oh thats just a bunch of people that think they are celiac coming together. I said um no they have doctors and knowledge behind what is being written. So bay area is Downplaying this site! SADLY 
×
×
  • 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.