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Positive Biopsy/negative Blood Results-Dr States No Celiac

carpermi

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carpermi Newbie
carpermi
Posted

A little overwhelmed.  Doctor stated last week after positive biopsy they want to run blood work (done in reverse, vomitting blood).  They stated they were 99% sure I was celiac and that the biopsy was not as strong because I had altered my diet the last 3 months excluded gluten (ate some hidden...was being treated for ulcers).  Blood work came back negative today.  Doctor now states 99% sure I am not celiac because "if I was, the blood work would have shown it".  When I questioned this based on my past conversation and what I have read on negative blood tests, she said "be happy...you don't want a celiac diagnosis, it creates a nightmare with insurance."

 

Definitely sticking with gluten free but would love feedback.  Does the diagnosis matter?  Should we push for a second opinion?  Or, is it true that that the blood work would confirm the diagnosis?  I feel like I was just wrapping my head around the "99% sure celiac" and now to be told the opposite is so confusing.  I am truly okay if I am not celiac, evident I am definitely gluten intolerant.

 

Thank you!

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kareng Grand Master
kareng
Posted

If you were gluten free, you could certainly test negative. Get a copy of the pathology report and see what it says. Get a copy of the blood work, too. Just in case.... This doc sounds like he doesn't know what he is talking about.

notme Experienced
notme
Posted

positive biopsy is the 'golden standard' for diagnosis - so

 

'what?'

 

are you going to a GI or general practitioner?  alot of docs are clueless. :)  

Deaminated Marcus Apprentice
Deaminated Marcus
Posted

Were you eating gluten-bread before the blood test?

For how long?

Get a copy of the blood tests and post it here.

Some posters have had false negatives till they got a copy of the report and saw that their doctor misinterpreted the results.

 

 

...................................................................................................................................

 

 

From the Celiac disease center web site:

 

Causes of Villous Atrophy Other Than Celiac Disease

Giardiasis
Collagenous sprue
Common-variable immunodeficiency
Autoimmune enteropathy
Radiation enteritis
Whipple’s disease
Tuberculosis
Tropical sprue
Eosinophilic gastroenteritis
Human immunodeficiency virus enteropathy
Intestinal lymphoma
Zollinger–Ellison syndrome
Crohn’s disease
Intolerance of foods other than gluten (e.g., milk, soy, chicken, tuna)

 

 

Open Original Shared Link

 

 

 

and    bovine-beta-casein-enteropathy: 

 

Open Original Shared Link

carpermi Newbie
carpermi
Posted
  • Author

Were you eating gluten-bread before the blood test?

For how long?

Get a copy of the blood tests and post it here.

Some posters have had false negatives till they got a copy of the report and saw that their doctor misinterpreted the results.

Marcus, Yes...had been eating gluten free bread for 3 months.  Reintroduced gluten for 4 days before blood test but limited because it was messing with me.  Had some cereal and a piece of pizza and crackers over the 4 days.  Some flour as a thickner in curry as well.

 

I will get copies tomorrow and post. 

 

notme!...I am going to a GI specialist.  Interestingly, I had switched from them last fall after going to see them for my symptoms and they sent me for a colonoscopy.  The PA is who ordered it but when the doctor went to do it, he said "ahh...I think you are fine, shocked if anything came back".  I am thinking "ummm...really don't want to just do this for no reason".  Switched doctors but after ER visit, this is where they sent me.  They are the go-to GI doctors in town.  Funny, because he said the SAME thing to me when he went to scope me and then sent me for an ultrasound saying he was positive it was my gallblader.

 

Thank you everyone.  I feel crazy right now.  It is so stressful to be sick and to fight the doctors is exhausting.

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    • trents
      Small Bowel Resection 12 inches

      By trents · Posted

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      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
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