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Firsttimemama2014

Apparently More Celiacs Cancel Endoscopies Than Non-Celiacs

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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:


Breastfeeding mama to a gorgeous 6 month old boy!

 

 

 

 

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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.

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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!!! :(


Breastfeeding mama to a gorgeous 6 month old boy!

 

 

 

 

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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.


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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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. 


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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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).


 

 

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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.


Breastfeeding mama to a gorgeous 6 month old boy!

 

 

 

 

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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.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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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/

I am my husband's "Silly Yak Girl" :)

I was diagnosed with Celiac Disease in January 2013. I also have Lupus and Common Variable Immunodeficiency(CVID) for which I am on IVIG.

Celiac.com - Celiac Disease Board Moderator

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