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

Apparently More Celiacs Cancel Endoscopies Than Non-Celiacs

Firsttimemama2014

Recommended Posts

Firsttimemama2014 Rookie
Firsttimemama2014
Posted

I went to see my GI after canceling my endo and she admitted she sees this all the time. We rescheduled for Tuesday the 3rd of March. She said she's even seen people cancel TWICE before finally doing it. 

 

She also noted that most people WITH celiac end up canceling their endo assuming they don't have it and most people WITHOUT celiac insist on having endos despite bloodwork being negative. So, my denial/nervousness is actually yet another symptom of celiac.

 

Just a funny observation from my GI. I really hope I have the courage to go through with my endo on Tuesday and I don't cancel again  :unsure:

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Don't you want to get it over with so you can go gluten free and start to feel better?

nvsmom Community Regular
nvsmom
Posted

Enjoy a cinnamon bun for me some time in the next week.  ;)

HayInNeedleStack Apprentice
HayInNeedleStack
Posted

Depends on the person I think. My symptoms are disturbing, and thus I don't hesitate to do any test to get more info about the underlying condition. Also, it wasn't painful, just uncomfortable (that 1 second where you have to swallow the tube), taking biopsy wasn't painful either.

Firsttimemama2014 Rookie
Firsttimemama2014
Posted
  • Author

Thank you 

kareng

I am in TEARS as I type this.. I just watched the video and bawled for 30 minutes. I really hope I don't catch some uncurable infection. My baby is only 6 months old, I have to see him grow up. I'm so scared!!! :(

cyclinglady Grand Master
cyclinglady
Posted

Talk to your doctor about your concerns. It would be worth the cost of an office visit. Ask him directly what kind of equipment he uses. I think you will feel better then.

ravenwoodglass Mentor
ravenwoodglass
Posted

Talk to your doctor about your fears. If you had strongly positive blood tests the doctor might consent to give you a diagnosis based on symptom relief on the diet and blood antibody levels going down. 

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Thank you 

kareng

I am in TEARS as I type this.. I just watched the video and bawled for 30 minutes. I really hope I don't catch some uncurable infection. My baby is only 6 months old, I have to see him grow up. I'm so scared!!! :(

I am sorry about that. Unfortunately, that is part of these open forums.

I don't remember how positive your blood tests were, maybe you can skip the endo? Talk to your doctor about that and if there are other reasons he/ she wants to do one.

I actually think most people with a positive blood for Celiac that don't take the endo are because the blood test was enough proof for them. They are relieved and start the gluten-free diet right away and don't want to go back on gluten for the procedure. ( just my unscientific observations from here and my real life).

Firsttimemama2014 Rookie
Firsttimemama2014
Posted
  • Author

IGG: 11 ( >6 means antibody detected)

GLIDIAN 39 (>20 means antibody detected)

 

 

I was going to skip the endo but my symptoms got WORSE on the gluten free diet. I've been on the gluten-free diet for a few weeks now. Also, I was researching the results and apparently Candida can cause false positives for IGG and GLIDIAN and I failed the Candida water spit test. So, I'm convinced I have Candida and not Celiac. That's when I realized I'll always wonder if I indeed have Celiac and should just do the test as I've only been off gluten a few weeks so now is the time my villi would be damaged. 

 

I am gonna ask them what type of scope they use, it seems like it's not listed in the pamphlet nor the website. Thanks everyone for the heads up..  The place I'm going to is called Atherton Endoscopy in the San Francisco Bay area.

ravenwoodglass Mentor
ravenwoodglass
Posted

IGG: 11 ( >6 means antibody detected)

GLIDIAN 39 (>20 means antibody detected)

 

 

I was going to skip the endo but my symptoms got WORSE on the gluten free diet. I've been on the gluten-free diet for a few weeks now. Also, I was researching the results and apparently Candida can cause false positives for IGG and GLIDIAN and I failed the Candida water spit test. So, I'm convinced I have Candida and not Celiac. That's when I realized I'll always wonder if I indeed have Celiac and should just do the test as I've only been off gluten a few weeks so now is the time my villi would be damaged. 

 

I am gonna ask them what type of scope they use, it seems like it's not listed in the pamphlet nor the website. Thanks everyone for the heads up..  The place I'm going to is called Atherton Endoscopy in the San Francisco Bay area.

If you are going to get the endo do go back on gluten for at least a few weeks before you get it done. You don't want a false negative. AFAIK candida is not going to cause a positive that high on the celiac testing for which you had a strong positive result.

LauraTX Rising Star
LauraTX
Posted
There were two different discussions going on here so one has been split off into its own thread https://www.celiac.com/forums/topic/111042-duodenoscopes-for-ercp-cre-infections-in-the-news/

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,065
    • Most Online (within 30 mins)
      7,748
    Hoops
    Newest Member
    Hoops
    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

    • Russ H
      KAN-101 Treatment for Coeliac Disease

      By Russ H · Posted

      This treatment looks promising. Its aim is to provoke immune tolerance of gluten, possibly curing the disease. It passed the phase 2 trial with flying colours, and I came across a post on Reddit by one of the study volunteers. Apparently, the results were good enough that the company is applying for fast track approval.  Anokion Announces Positive Symptom Data from its Phase 2 Trial Evaluating KAN-101 for the Treatment of Celiac Disease https://www.reddit.com/r/Celiac/comments/1krx2wh/kan_101_trial_put_on_hold/
    • Scott Adams
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By Scott Adams · Posted

      BTW, we've done other articles on this topic that I wanted to share here (not to condone smoking!):    
    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      Hi everyone  This has been a crazy year so far... How many people actually get entire sensory overload from gluten or something similar ?  My jaw is going nuts ..and that nerve is affecting my upper back and so on ...  Bones even hurt.  Brain fog. Etc  I had eggs seemed fine.   Then my aid cooked a chicken stir fry in the microwave because my food order shorted a couple key items .   I was so hungry but I noticed light breading and some ingredients with SOY !!! Why are we suffering with soy ? This triggered a sensitivity to bananas and gluten-free yogurt it seems like it's a cycle that it goes on.  The tiniest amount of something gets me I'm guessing the tiny bit of breading that I took one tiny nibble of ...yikes ..im cringing from it .. Feels like my stomach is going to explode yet still very hungry 😔  How long does this last?! Thank you so much 
    • Scott Adams
      Celiac getting dentures

      By Scott Adams · Posted

      This is an older article, but may be helpful.  
    • gfmom06
      Celiac getting dentures

      By gfmom06 · Posted

      I have had orthodontic work done. The 3M invisalign material was no problem. BUT my retainers are another matter. They seemed okay for a few months. Now, however, they cause a burning sensation on my tongue, gums and insides of my lips. The burning sensation is now spreading to my throat. I notice it when I breathe. This is annoying and interferes with my enjoyment of eating. I am visiting with my provider tomorrow. We'll see where this goes from here.
×
×
  • 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.