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

Any Benefit To Getting Tested And Diagnosed Officially?


Live4Hiking

Recommended Posts

Live4Hiking Rookie

After having years of joint pain and diagnosed incorrectly with RA as well as having non specific "food hangovers" or "food poisonings", I finally went on a gluten free diet for the last 2 months and wow! I feel like my old self again. Is there any reason to now go in a see a doc to get a blood test and/or biopsy to confirm what I already know - I cant eat glutens and feel ok?

BTW - I decided to go gluten-free after stumbling upon this site and reading all the symptoms and amazing recoveries. So thank you, to all of you!!!!


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



Celiac.com Sponsor (A8-M):



ShayFL Enthusiast

The tests will be inaccurate now. Some say you have to eat a fair amount of gluten EVERYDAY for 3 or 4 months for the tests to MAYBE come out positive.

You have your answer.

Congratulations!!!

Lockheed Apprentice

I think the only reason to do it right now is if you need to claim some sort of resulting disability or work accommodation. I came out incredibly ambigious on all my testing except food sensitivity (which shows wheat rye barley oat amaranth millet and hops - so I have something a little more broad spectrum than just gluten going on for whatever reason). My biopsy was inconclusive and my blood test came back with one positive marker and one negative marker so one of them is false. But given that I was having so many issues I did an elimination diet and a gluten challenge and man I just can't eat gluten for sure. I think you have about as firm of a diagnosis as you'll ever have with the current technologies available.

Live4Hiking Rookie
I think the only reason to do it right now is if you need to claim some sort of resulting disability or work accommodation. I came out incredibly ambigious on all my testing except food sensitivity (which shows wheat rye barley oat amaranth millet and hops - so I have something a little more broad spectrum than just gluten going on for whatever reason). My biopsy was inconclusive and my blood test came back with one positive marker and one negative marker so one of them is false. But given that I was having so many issues I did an elimination diet and a gluten challenge and man I just can't eat gluten for sure. I think you have about as firm of a diagnosis as you'll ever have with the current technologies available.

Thanks you guys!!! That was my gut (no pun intended!) feeling, thanks for verifying.

Katsby Apprentice

I am kind of glad I didn't get an official diagnosis mainly because insurance can't turn me down if there's nothing stating that I have Celiac Disease in writing. I think the only benefit is if you are able to get support from an official diagnosis. I think in some countries they give financial aid.

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

      Recovery from gluten challenge

    2. - annamarie6655 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Airborne Gluten?

    3. - trents replied to Mell2's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Rectal pain

    4. - Celiac and Salty replied to Mell2's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Rectal pain

    5. - Rogol72 replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Guinness, can you drink it?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,236
    • Most Online (within 30 mins)
      7,748

    kssynlson37
    Newest Member
    kssynlson37
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Kirita
      I’m wondering if anyone has had any experience with the gluten challenge. My teenager completed a gluten challenge over the summer, it ended up being 10 weeks although she stopped being consistent eating gluten after 6. Her previous endoscopy was negative but this past August it was positive after the gluten challenge. If you have done the gluten challenge, how long did it take you to feel back to normal? It took about two months before she got “glutened” again but now she’s having difficult coming back from that and has a lot of fatigue. I’m hoping someone has some advice! 
    • annamarie6655
      Hello everyone, I was on here a few months ago trying to figure out if I was reacting to something other than gluten, to which a very helpful response was that it could be xanthin or guar gum.    Since then, I have eaten items with both of those ingredients in it and I have not reacted to it, so my mystery reaction to the Digiorno pizza remains.    HOWEVER, I realized something recently- the last time I got glutened and the most recent time I got glutened, I truly never ate anything with gluten in it. But i did breathe it in.    The first time was a feed barrel for my uncle’s chickens- all of the dust came right up, and most of what was in there was wheat/grains. The second time was after opening a pet food bag and accidentally getting a huge whiff of it.    When this happens, I tend to have more neurological symptoms- specifically involuntary muscle spasms/jerks everywhere. It also seems to cause migraines and anxiety as well. Sometimes, with more airborne exposure, I get GI symptoms, but not every time.    My doctor says he’s never heard of it being an airborne problem, but also said he isn’t well versed in celiac specifics. I don’t have the money for a personal dietician, so I’m doing the best I can.    is there anyone else who has experienced this, or gets similar neurological symptoms? 
    • trents
      I was suffering from PF just previous to being dx with celiac disease about 25 yr. ago but have not been troubled with it since. Not sure what the connection between the two is of if there is one. But I do know it is a very painful condition that takes your breath away when it strikes.
    • Celiac and Salty
      I have dealt with proctalgia fugax on and off for a year now. It feels almost paralyzing during an episode and they have started lasting longer and longer, sometimes 20+ minutes. I was recently diagnosed with celiac disease and wonder if the 2 are related. I did request a prescription for topical nitroglycerin for my PF episodes and that has helped tremendously!
    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
×
×
  • 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.