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

Made Myself Sick For Nothing


txplowgirl

Recommended Posts

txplowgirl Enthusiast

Bummer, the dr's office called late this afternoon with all of my results. Celiac negative, Lupus neg, Lyme neg, cortisol fine, thyroid neg. I had 15 different tests and every single one of them negative. All I wound up getting out of it was being put on Paxil and Nueronton for the pain and fatigue of my Fibro and Chronic fatigue. On top of that i've been having problems staying gluten free the last few days.

Uugghhhh, it's harder than I thought it would be. I thought I could go right back to being gluten free without any problems but I get cravings so bad and I grab something I shouldn't. I go back to work tomorrow so I can't get the actual results until I get back home in a month. I'll post the results when I get them to see what all of you guys can tell me.


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



Celiac.com Sponsor (A8-M):



lucky28 Explorer

I'm sorry to hear you're having such a frustrating time getting any answers. My dr didn't want to give me a diagnosis until he read the biopsy pathology report, even though the pictures he took while doing the endoscopy looked like classic celiac damage. You should try to get a copy of the results just to check it out for yourself. Good luck.

Jenniferxgfx Contributor

Did you have relief going gluten-free? The tests don't matter (and for gluten arent very accurate in some cases), but what really matters is if you felt some relief.

Don't forget, if you want to quit gluten again, you probably will go through withdrawals again, which includes practically irresistible cravings sometimes.

My tests were negative too, and now that I'm gluten-free, I'm seeing how sensitive I am, and how involved the reactions can be (it's been 3 months and I notice improvements of all sizes every day)... I am sure some damages will take years to recover, and that some damage is permanent.

As someone here told me, there just isn't a test sensitive enough for us yet, if avoiding gluten makes us feel better.

Jenniferxgfx Contributor

I think I misread parts of your post so my reply didn't totally make sense. Sorry :/

And the test wasn't for nothing in my opinion, IF eating gluten for the challenge made you feel lousy-- you have confirmation! Your own experience trumps expensive tests.

Skylark Collaborator

Don't you hate that good news/bad news sort of visit? I mean it's always good when we don't have awful things like Lyme or lupus but then you're left with the bad news of no diagnosis. I'm so sorry to hear you got nothing from your gluten challenge. :(

Bubba's Mom Enthusiast

When you get back be sure to get a copy of your tests results. I've had Dr.s tell me everything is normal in the past, when it actually wasn't. It was borderline.

If eating gluten-free made you fell any better at all..you can go back to it. you'll probably go through a withdrawl period though.

You know what I find odd? A LOT of people seem to crave the foods they shouldn't eat due to sensitivity.

Monklady123 Collaborator

This is exactly why I'm never going to do a gluten challenge. I don't care if I don't have the "gold standard" of diagnostic tools. I know that if I eat gluten I feel terrible. If I don't eat it I feel good. Why does it matter if we have a diagnosis? I've never understood this.

Sorry OP, I don't mean to sound uncaring. I'm sorry you were sick on the gluten challenge. There's your answer right there.


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



Celiac.com Sponsor (A8-M):



Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,561
    • Most Online (within 30 mins)
      7,748

    lamps
    Newest Member
    lamps
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • petitojou
      Thank you so much for sharing your experience and I found myself giggling with happiness as I read how your body reached such spring! And I hope that your current journey is also successful!! Definitely starting the food diary! So many amazing advices. And it’s very scary. It really hits all our soft spots as well as our confidence system. Most doctors I went thought I was underage despite being in my late 20s. Right now I look like am I twelve, but is also this body that’s taking so much, so I might as well love it too! Going to make the necessary changes and stay in this path. Thank you again! 🫶
    • petitojou
      Thank you so much for the information and kind message! Reading this transformed how I’ve been viewing my efforts and progress. Guess there’s still a lot to celebrate and also heal 😌  Yes, I’ve been taking it! Just recently started taking a multivitamin supplement and separated vitamin D! I also took chewable Iron polymaltose for ferritin deficiency 2 months ago but was unable to absorb any of it.  Thank you again! Hearing such gentle words from the community makes my body and heart more patient and excited for the future. 
    • ckeyser88
      I am looking for a roomie in Chicago, Denver or Nashville! 
    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
×
×
  • 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.