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

      My Journey Continues some notes

    2. - Cecile replied to Cecile's topic in Related Issues & Disorders
      3

      Symptoms

    3. - Jmartes71 posted a topic in Introduce Yourself / Share Stuff
      0

      Not validated

    4. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      4

      New issue

    5. - Jmartes71 replied to chrish42's topic in Doctors
      3

      Doctors and Celiac.com

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

    • Total Members
      133,192
    • Most Online (within 30 mins)
      7,748

    Mboston
    Newest Member
    Mboston
    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

    • xxnonamexx
      I have increased my vitamin intake Vitamin B Complex plus 2 Thiamax, NeuroMag, Benfotiamine with breakfast. I continue reading and watching gluten free items that I eat. Breakfast is Bobs Redmill gluten-free oatmeal with Chobani zero sugar yogurt a banana and blueberries. Lunch since im at a deli gluten-free is hard to come by so I stick with turkey with gluten-free Promise bread. Dinner varies like gluten-free pasta, tacos, chicken, sausage, meat etc. rice or take out from gluten-free places. I have decided to stay away from gluten-free pizza as I feel I felt weird with it unless its store bought frozen. I am going to try to make my own gluten-free bread, Bagels. I have been good with baking gluten-free treats like cookies, muffins. Snacks if its not fruit, veggies I grab a protein bar or chocolate guilty pleasure reeses, hersheys, York PP. I am going to start to use my fitness pal app to track what I eat and note when I feel off to see if I can pinpoint if a trend of a certain gluten-free food is a culprit. I noticed once in a while I feel a little bloated, gassy that I think is from the pizza so I am going to avoid it and continue narrowing it down. I have been doing very well and I have learned even if you think you are doing everything 100% gluten-free eating it can sneak in without you knowing. This year is more traveling which im afraid of but have already looked into gluten-free places in Nashville which they have and back to Aruba I went last year and have the gluten-free places already selected. Most restaurants I have been to have been very helpful with what to stay away from to avoid CC. If a place states they don't have any gluten-free the I stick with a salad or when I took my kids to breakfast as much as I miss the breakfast this place serves I played it safe with yogurt and a fruit bowl so at least my kids were happy to go there again. Local farmers market has great gluten-free items that I treat myself to like different types of breads, baked goods. My journey continues...
    • Cecile
      Thank you Scott for your wonderful info. I will pry my Doctor for more extensive blood testing. I appreciate your time. 
    • Jmartes71
      After waisted time of new care team, yet again EXHAUSTED saw new gi today in Modesto, though all my ailments im not getting any kind of concern of me being celiac and sentive to just about everything since menopause. Dr daid why don't I go see you guys because my blood shows zero for celiac. I told him im glutenfree since 1994 by colonoscopy with biopsy positive celiac sprue by GI.Its RIDICULOUS when im bringing in material from this site of knowledge as well as the autoimmune institute,and  there's zero interest on their part.Medical IS causing me depression.Im view as a disability chaser, IM STILL RECOVERING from being a bus driver that im still healing and having more issues, now I may have multiple sclerosis or meningioma. Ive reached out, wrote letters, NOT feeling well. This is inhumane. 
    • Jmartes71
      I was taking medicine for sibo but it was not agreeing with my stomach at all.Was on gabapentin but it amps me up.I was taking in morning because it wasn't allowing me to sleep.This has always been an issue with medicine and me.Even going to dentist, the good shot that numbs you once, I can't take because it makes my heart beat fast and I  get the shakes.I have to take the crappy stuff and get injected always more than 4 times always.Its infuriating 
    • Jmartes71
      I showed one doctor I went to once because completely clueless of celiac disease and yes that one was connected to a well known hospital and she said oh thats just a bunch of people that think they are celiac coming together. I said um no they have doctors and knowledge behind what is being written. So bay area is Downplaying this site! SADLY 
×
×
  • 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.