Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

By txplowgirl
in Coping with Celiac Disease

Recommended Posts

txplowgirl Enthusiast
txplowgirl
Posted

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
lucky28
Posted

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
Jenniferxgfx
Posted

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
Jenniferxgfx
Posted

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
Skylark
Posted

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
Bubba's Mom
Posted

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
Monklady123
Posted

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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,039
    • Most Online (within 30 mins)
      7,748
    VC2015
    Newest Member
    VC2015
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Gluten Sensitivity

      By trents · Posted

      @rjane, yes, it often feels overwhelming in the beginning. But let me encourage you by saying that it will get easier. You and your husband will develop, over time, a sixth sense of how gluten is typically hidden in the food supply and where it is found and you will develop an inventory of foods that you can trust and to stock your pantry with. The largest risk involves eating out at restaurants. Even if you order things that are naturally gluten free, you have no control over cross contamination happening back in the kitchen in how things are prepared and handled. Another trap is eating at other people's homes who are trying to accommodate your husband's need to eat gluten free but who lack knowledge about how gluten may be hidden in the food supply. I mean, who would expect to find wheat in soy sauce or Campbell's tomato soup? I know you aren't going to want to hear this, but you may want to consider making your kitchen entirely gluten free to eliminate the possibility of accidents and cross contamination. It would also simplify your meal preparation. Yes, I'm talking about both of you eating gluten free in the home. Many couples find this is the easiest and most practical approach to being consistent and keeping their celiac loved one safe. You might find this helpful:  
    • rjane
      Gluten Sensitivity

      By rjane · Posted

      I am not sure if they have tested him for SIBO  should I ask the hospital if they have tested him for that, there is so much to learn in the beginning I am not sure what or who to ask I am thinking the good folks on this site will help me, thanking you for your help  
    • trents
      Probably celiac but also confused

      By trents · Posted

      Keep us posted.
    • trents
      Gluten Sensitivity

      By trents · Posted

      Has your hubbie been checked for SIBO (Small Intestinal Bacterial Overgrowth)? This is not uncommon in the celiac population. https://my.clevelandclinic.org/health/diseases/21820-small-intestinal-bacterial-overgrowth-sibo
    • terrymouse
      Probably celiac but also confused

      By terrymouse · Posted

      Update: I got a call on Monday from the GI doctor's office, they had a cancellation and an appointment opened up for Tuesday. Not much time to prepare, but I went ahead and did it anyway. I haven't been gluten free at any point, but I haven't really loaded up as much as was recommended, either. It takes another 6-8 weeks to get the results, so I'd rather get it done now. I just hope it will be enough and I won't have to try again and delay it even longer. Thanks for the recommendations and thoughtful responses, much appreciated. I will be following up with my GP soon to check for nutritional deficiencies while I'm waiting on the test results.  
×
×
  • Create New...