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Apparently More Celiacs Cancel Endoscopies Than Non-Celiacs

Firsttimemama2014

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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:

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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. 

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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/

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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

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    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      Contact them.
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