Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Made Myself Sick For Nothing
0

7 posts in this topic

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.

2

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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. :(

1

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,693
    • Total Posts
      921,770
  • Topics

  • Posts

    • Thanks for replying. You've been very helpful and given me some ideas of trying a few foods in small amounts. I wish I had rotated food months ago then it might not have got so bad. Thanks again and I wish you well.
    • Until my recent blood test results I've been having cinnamon and mint tea in the mornings, which seemed to have a positive effect calming the digestive system (and tastes good too!)  After the first step of diagnosis with high Iga TTg I took at look at the cinnamon sticks I make the tea with and it says "packed in a factory that may contain wheat, corn etc. etc." so that I guess would sound alarm bells for many I reckon. That said I'd imagine the way most of these herbs and spices are harvested isn't exactly gluten-free friendly yet I've seen quite a few recipes using it. How are people getting around this as I can't see any specific gluten-free certified cinnamon products out there? Really could do with my tea back P.S. I also have chamomile tea using the raw flowers which may have a similar background but seem to be less of a risk somehow?
    • If I do have to go back on gluten for a bit it'll at least be a temporary relief from the withdrawal symptoms (or at least what I hope are just withdrawal symptoms). Today's returning malady is acid reflux, something I'd thought I'd seen the back of recently. Really need that to calm down as PPIs the doctor gave before were evil medication and caused 10x more problems, possibly the worst I've ever felt whilst on those so won't be going back there! Although the scales seem to have stabilised in terms of weight loss in myself I feel like I'm wasting away at present, what with the random pulling sensations in muscles and tender head area I'm just scared for what other illnesses may be laying in wait related to the celiac genes  Think I'll head back for the ESR and CRP blood tests next week as the shoulder and temple pains are really worrying me right now, could just be the gluten intolerance but the other options are terrifying if not caught early. So much uncertainty, apart from the fact that none of this ever gets fully better (if at all)...
    • You're welcome! Good luck! And if you get nowhere there, remember, the higher you go, the nicer they get. Skip straight up to the top brass.
    • I'm sorry you've been having such a rough time.  I'm thinking you may have accidentally ingested something containing gluten, and that's what caused your reaction.  A lot of people will react quite severely to even a tiny bit of gluten.  That's why there is so much on here about avoiding cross contamination.  Even though you've been diagnosed with NCGS, you still need to live as though you have actual celiac disease, and be very careful not to cheat.  Your body will punish you for it.  :/  In the meanwhile, nurture yourself kindly and gently, just as you would after a severe bout of food poisoning or intestinal infection.  Comfort foods, like broths and soups and smoothies.  You might want to avoid lactose for a few months too.  Sometimes we lose our ability to digest lactose when our intestines are damaged and vulnerable like yours is right now.   And remember healing takes time.  So does learning the gluten free lifestyle.  Expect some setbacks occasionally.  You WILL get better!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,698
    • Most Online
      3,093

    Newest Member
    kkreuz
    Joined