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

Did I Make This Up?


cait

Recommended Posts

cait Apprentice

Despite negative blood tests, I decided to go gluten-free a few weeks ago to see if it helped any of my symptoms (joint pain, fatigue, brain fog, digestive crankiness). Within days I felt more hopeful that I was on the right track than I have in 10 years. I went back on gluten after less than a week off so that I could do a final round of testing for Celiac, including biopsy (my dad has it, so I kind of wanted all the information I could get, and wanted to know exactly how strict I need to be). My biopsy was Friday and I've been gluten-free again since then. I think my head is starting to feel clearer, but the response hasn't been as quick or dramatic this time. Is it normal to have a different response if you've been on and off gluten? Could some of it be my body recovering from the anesthesia (it knocked me out pretty solidly and left me feeling pretty hungover)? I know it hasn't been long, but I'm pretty quick to doubt myself about this kind of stuff, so I guess I just need reassurance that gluten could still be my problem, even if all the tests come back negative for celiac, and even if I don't feel better as quickly this time. Could I have made up the clearer head, increased energy, decreased stomach pain, etc that I had a few weeks ago after going gluten-free the first time?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Marilyn R Community Regular

Hi Cait,

It takes me four solid days following an accidental glutening to feel good again.

I scheduled my endoscopy for a Monday thinking I could go to work on Tuesday, but I ended up calling in sick. I'd been gluten-free for months before I had the procedure, so I think I reacted to the soy in the anesthesia.

No, I don't think it was all in your mind. If you felt better than you had in ten years, I think you have some better living to look forward to! :D

And congratulations for continuing with the gluten and getting the testing. That took real courage and determination.

If you don't feel better tomorrow, Tuesday will be a better day.

ravenwoodglass Mentor

No your not imagining feeling better. It does take some time to heal and after we have been gluten free for a bit a glutening can be more severe and take longer to get over. No matter what the results are of the biopsy and or blood tests do give the diet a good strict go for at least a month or two.

cait Apprentice

No matter what the results are of the biopsy and or blood tests do give the diet a good strict go for at least a month or two.

Oh, I will. I'm not giving up. I'm just good at doubting myself. I spent more of the last 10 years than I want to think about going through every treatment under the sun for Lyme Disease. I spent most of it assuming I'd feel like this for the rest of my life (and the more recent years, feeling worse and worse and having less and less hope). Having another possible answer/solution is an amazing possibility, but one that's hard to trust. So it's easy to think that I must have just imagined the improvement in my desperation to have a magic fix. Thanks for the encouragement.

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. - Flash1970 replied to Ginger38's topic in Related Issues & Disorders
      7

      Shingles - Could It Be Related to Gluten/ Celiac

    2. - trents replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      GI DX celiac despite neg serology and no biopsy

    3. - Roses8721 replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      GI DX celiac despite neg serology and no biopsy

    4. - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      7

      Shingles - Could It Be Related to Gluten/ Celiac

    5. - Scott Adams replied to Silk tha Shocker's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Help


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,483
    • Most Online (within 30 mins)
      7,748

    AML2013
    Newest Member
    AML2013
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Flash1970
      You might try Heallix.  It's a silver solution with fulvic acid. I just put the solution on with a cotton ball.  It seemed to stop the nerve pain. Again,  not in your eyes or ears.   Go to heallix.com to read more about it and decide for yourself Also,  I do think nerve and celiac combined have a lot to do with your susceptibility to shingles breaking out. 
    • trents
      Celiac disease requires both genetic potential and a triggering stress event to activate the genes. Otherwise it remains dormant and only a potential problem. So having the genetic potential is not deterministic for celiac disease. Many more people have the genes than actually develop the disease. But if you don't have the genes, the symptoms are likely being caused by something else.
    • Roses8721
      Yes, i pulled raw ancetry data and saw i have 2/3 markers for DQ2.2 but have heard from friends in genetics that this raw data can be wildly innacurate
    • Ginger38
      Thanks, I’m still dealing with the pain and tingling and itching and feeling like bugs or something crawling around on my face and scalp. It’s been a miserable experience. I saw my eye doc last week, the eye itself was okay, so they didn’t do anything. I did take a 7 day course of an antiviral. I’m hoping for a turnaround soon! My life is full of stress but I have been on / off the gluten free diet for the last year , after being talked into going back on gluten to have a biopsy, that looked okay. But I do have positive antibody levels that have been responsive  to a gluten free diet. I can’t help but wonder if the last year has caused all this. 
    • Scott Adams
      I don't think any apps are up to date, which is exactly why this happened to you. Most of the data in such apps is years old, and it doesn't get updated in real time. Ultimately there is no substitution for learning to read labels. The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product's ingredient label like this: Allergens: Wheat.      
×
×
  • 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.