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

Finally Will Have An Answer

Pokey Oaks

Recommended Posts

Pokey Oaks Rookie
Pokey Oaks
Posted

After almost a year of not being heard, I might actually get an answer into what's going on. Because I was told I couldn't possibly have Celiacs because the bloods came back negative (though I had been gluten free for 2 months prior), I started to eat gluten. I started getting sick again, gaining weight, bloated, and my last bloods showed a drop in potassium, magnesium, calcium, and iron. The iron and magnesium were so low I needed IV infusions to top me up. I've been send off to a gastroenterologist and I'm having both a gastroscopy and colonoscopy next month. He'll be taking a biopsy and I'll finally have an answer either way. The down side is, I stopped eating gluten again a few weeks ago, and now I have to gluten myself again, which always ends in me crying when I can't handle it anymore. I'm pretty scared, but glad at the same time. What's the gastroscopy like? Do you remember anything?

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

Celiac.com Sponsor (A8-M):


1desperateladysaved Proficient
1desperateladysaved
Posted

Gastroscopy, are they looking at your "upper digestive tract" with that?  I recently had endoscopy (upper digestive track) and colonoscopy.  I remember nothing after they gave me the sedatives until I woke up.  The prep work is the hardest.  count on spending time in the bathroom.  I set up a video in there, but possibly some of your favorite music would be better.  I didn't pay much attention to the show the first time through.  Make sure the doctor plans to get at least 6 samples form the small intestine and some from the duodenum part of it.  Many doctors only take one sample and call it good.  The damage can be missed.

 

One more thing make sure to read the labels on the prep meds so that you don't consume something you are allergic too.

 

Best wishes for a definitive diagnosis. 

 

Dee

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • 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. MogwaiStripe
      - MogwaiStripe replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?

      I can't prove it, but I truly believe I have been glutened by airborne particles. I used to take care of shelter cats once per week at a pet store, and no matter how careful I was, I would get glutened each time even if I wore a mask and gloves and washed up well after I was done. I believe the problem was that because I'm short, I couldn't do the the tasks...
    2. knitty kitty
      - knitty kitty replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      16

      Gluten Issues and Vitamin D

      Hello, @MogwaiStripe, Vitamin D is turned into its activated forms by Thiamine. Thiamine deficiency can affect Vitamin D activation. https://pubmed.ncbi.nlm.nih.gov/14913223/ Thiamine deficiency affects HLA genes. HLA genes code for autoimmune diseases like Celiac, Thyroiditis, Diabetes, etc. Thiamine deficiency inside a cell triggers a...
    3. knitty kitty
      - knitty kitty replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?

      Hello, @annamarie6655, Yes, there's many of us who react to airborne gluten! Yes, animal feed, whether for chickens or cats or dogs, can release airborne gluten. I can get glutened from the bakery section at the grocery store. The nose and mouth drain into the digestive system and can trigger systemic reactions. I find the histamine release...
    4. Scott Adams
      - Scott Adams replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Guinness, can you drink it?

      This article may be helpful:
    5. Kirita
      - Kirita posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Recovery from gluten challenge

      I’m wondering if anyone has had any experience with the gluten challenge. My teenager completed a gluten challenge over the summer, it ended up being 10 weeks although she stopped being consistent eating gluten after 6. Her previous endoscopy was negative but this past August it was positive after the gluten challenge. If you have done the gluten challenge, ...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,243
    • Most Online (within 30 mins)
      7,748
    Dorfor
    Newest Member
    Dorfor
    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

    • MogwaiStripe
      Airborne Gluten?

      By MogwaiStripe · Posted

      I can't prove it, but I truly believe I have been glutened by airborne particles. I used to take care of shelter cats once per week at a pet store, and no matter how careful I was, I would get glutened each time even if I wore a mask and gloves and washed up well after I was done. I believe the problem was that because I'm short, I couldn't do the the tasks without getting my head and shoulders inside their cages, and so the particles from their food would be all over my hair and top of my shirt. Then I had to drive home, so even if I didn't get glutened right then, the particles would be in my car just waiting for me to get in the car so they could get blown into my face again. I gave up that volunteer gig and stopped getting glutened so often and at such regular intervals.
    • knitty kitty
      Gluten Issues and Vitamin D

      By knitty kitty · Posted

      Hello, @MogwaiStripe, Vitamin D is turned into its activated forms by Thiamine.  Thiamine deficiency can affect Vitamin D activation. https://pubmed.ncbi.nlm.nih.gov/14913223/ Thiamine deficiency affects HLA genes.  HLA genes code for autoimmune diseases like Celiac, Thyroiditis, Diabetes, etc.  Thiamine deficiency inside a cell triggers a toggle switch on the gene which in turn activates autoimmune diseases carried on the gene.  The reference to the study is in my blog somewhere.  Click on my name to go to my page, scroll down to the drop down menu "Activities" and click on blogs.  
    • knitty kitty
      Airborne Gluten?

      By knitty kitty · Posted

      Hello, @annamarie6655, Yes, there's many of us who react to airborne gluten!   Yes, animal feed, whether for chickens or cats or dogs, can release airborne gluten.  I can get glutened from the bakery section at the grocery store.   The nose and mouth drain into the digestive system and can trigger systemic reactions.   I find the histamine release in response to airborne gluten will stuff up my sinuses and bother my eyes.  High histamine levels do cause anxiety and migraines.  The muscle spasms can be caused by high histamine, too.  The digestive system may not manifest symptoms without a higher level of gluten exposure.   Our bodies make an enzyme, DAO (diamine oxidase), to break down histamine.   Pyridoxine B 6, Cobalamine B12, Vitamin C, copper, zinc, and iron are needed to make DAO.  DAO supplements are available over the counter.  Taking a B Complex supplement and additional Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) helps reduce the amount of histamine being released.  Mast cells without sufficient Thiamine have an itchy trigger finger and release histamine at the slightest provocation.  Thiamine helps mast cells refrain from releasing their histamine.    I find taking additional TTFD thiamine helps immensely with neurological symptoms as TTFD can easily cross the blood brain barrier without a carrier.  High histamine in the brain can cause the muscle spasms, anxiety and migraines.  Vitamin C really helps with clearing histamine, too.   The Digiorno pizza mystery reaction could have been caused by a reaction to the cheese.  Some people develop lactose intolerance.  Others react to Casein, the protein in dairy, the same as if to gluten because Casein resembles the molecular structure of gluten.  An enzyme used in some dairy products, microbial transglutaminase, causes a gluten reaction because it is the same as the tissue transglutaminase our bodies make except microbes make it.  Those tTg IgA blood tests to diagnose celiac disease measure tissue transglutaminase our bodies release as part of the autoimmune response to gluten.   You're doing great!  A Sherlock Holmes award to you for figuring out the connection between airborne gluten and animal feed!!!  
    • Scott Adams
      Guinness, can you drink it?

      By Scott Adams · Posted

      This article may be helpful:  
    • Kirita
      Recovery from gluten challenge

      By Kirita · Posted

      I’m wondering if anyone has had any experience with the gluten challenge. My teenager completed a gluten challenge over the summer, it ended up being 10 weeks although she stopped being consistent eating gluten after 6. Her previous endoscopy was negative but this past August it was positive after the gluten challenge. If you have done the gluten challenge, how long did it take you to feel back to normal? It took about two months before she got “glutened” again but now she’s having difficult coming back from that and has a lot of fatigue. I’m hoping someone has some advice! 
×
×
  • 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.