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 Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    2. - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    3. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    4. - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

    5. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,154
    • Most Online (within 30 mins)
      7,748

    bobadigilatis
    Newest Member
    bobadigilatis
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      This article does not address migraines at all.  Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines are tied to fluctuations vascular tension and blood flow to the brain. That's why the sumatriptan works so well. It is a vaso constrictor. 
    • knitty kitty
      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
×
×
  • 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.