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.

  • 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. - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    2. - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    3. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Low iron and vitamin d

    4. - Scott Adams replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

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

    • Total Members
      133,214
    • Most Online (within 30 mins)
      7,748

    Isla M
    Newest Member
    Isla M
    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

    • trents
      Cristiana, that sounds like a great approach and I will be looking forward to the results. I am in the same boat as you. I don't experience overt symptoms with minor, cross contamination level exposures so I sometimes will indulge in those "processed on equipment that also processes wheat . . ." or items that don't specifically claim to be gluten free but do not list gluten containing grains in their ingredient list. But I always wonder if I am still experiencing sub acute inflammatory reactions. I haven't had any celiac antibody blood work done since my diagnosis almost 25 years ago so I don't really have any data to go by.   
    • cristiana
      I've been reflecting on this further. The lowest TTG I've ever managed was 4.5 (normal lab reading under 10).  Since then it has gone up to 10.   I am not happy with that.  I can only explain this by the fact that I am eating out more these days and that's where I'm being 'glutened', but such small amounts that I only occasionally react. I know some of it is also to do with eating products labelled 'may contain gluten' by mistake - which in the UK means it probably does! It stands to reason that as I am a coeliac any trace of gluten will cause a response in the gut.  My villi are healed and look healthy, but those lymphocytes are present because of the occasional trace amounts of gluten sneaking into my diet.   I am going to try not to eat out now until my next blood test in the autumn and read labels properly to avoid the may contain gluten products, and will then report back to see if it has helped!
    • lizzie42
      Hi, I posted before about my son's legs shaking after gluten. I did end up starting him on vit b and happily he actually started sleeping better and longer.  Back to my 4 year old. She had gone back to meltdowns, early wakes, and exhaustion. We tested everything again and her ferritin was lowish again (16) and vit d was low. After a couple weeks on supplements she is cheerful, sleeping better and looks better. The red rimmed eyes and dark circles are much better.   AND her Ttg was a 3!!!!!! So, we are crushing the gluten-free diet which is great. But WHY are her iron and vit d low if she's not getting any gluten????  She's on 30mg of iron per day and also a multivitamin and vit d supplement (per her dr). That helped her feel better quickly. But will she need supplements her whole life?? Or is there some other reason she's not absorbing iron? We eat very healthy with minimal processed food. Beef maybe 1x per week but plenty of other protein including eggs daily.  She also says her tummy hurts every single morning. That was before the iron (do not likely a side effect). Is that common with celiac? 
    • Scott Adams
      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
×
×
  • 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.