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Positive biopsy ? About blood test

Binti1962

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Binti1962 Rookie
Binti1962
Posted

My biopsy came back positive for celiac disease, but my doc said we need a blood test to confirm.  I'm waiting for the results, which I hope I get before Christmas.  What are the chances I have something else?  What else could it be?  Thanks for any input! 

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rehh05 Apprentice
rehh05
Posted

That seems kind of backwards to me. Usually they use the biopsy to confirm the blood tests, I think.  I know one can test negative on the blood tests and still be positive on the biopsy and have celiac, so ... Hmmm... It will be interesting what they end up saying about you.

notme Experienced
notme
Posted

if they didn't know what they were looking for when they did the endoscopy, but were testing for multiple things, then it is fortunate they included celiac in their testing - yay, you!  it's very difficult to get such a definitive answer right off the bat.  you have celiac.  i believe that your doc is covering his bases as to the five points of celiac dx, one being a blood test - i agree, it does seem backwards, but even random answer is better than seeking one.  

welcome to the forum :)

cyclinglady Grand Master
cyclinglady
Posted

Could be any of these (University of Chicago Celic Website):

Open Original Shared Link

Binti1962 Rookie
Binti1962
Posted
  • Author

Thanks for the welcome and info!  Yes, they did the endoscopy for reflux issues and the biopsies were all done our of an abundance of caution.  The positive result blew me away!  Wasn't expecting that at all.  I think he's being cautious until we get the blood work back,.  I'll check out the other possibilities as well.

celiac sharon Apprentice
celiac sharon
Posted

Mine was done backwards too. They didn't really think it was celiac, did the biopsy because I was anemic and had hashimotos. But I was 80 lbs overweight. When the biopsy came back frankly positive with only two samples, I think he ordered the blood work out of astonishment. Of course, it too, was crazy positive on every panel. Of course now we know, not all celiacs are skinny. It's good to have a firm diagnoses though, I have not doubt you will get your diagnosis

Positron Newbie
Positron
Posted
16 hours ago, Binti1962 said:

My biopsy came back positive for celiac disease, but my doc said we need a blood test to confirm.  I'm waiting for the results, which I hope I get before Christmas.  What are the chances I have something else?  What else could it be?  Thanks for any input! 

Your doctor is a typical insurance fraud specialist.  The blood test means nothing, it will be negative most of the time.  Also if you had a biopsy before a typical blood test, this is so bad as to qualify as malpractice, as it is backwards.  This is like doing a cancer operation before the cancer test.

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Binti1962 Rookie
Binti1962
Posted
  • Author

Wow, Positron, that's pretty harsh!  He didn't do the endoscopy and biopsies looking for celiac.  So you can't really say he did it backwards on purpose.  I was having issues which necessitated an endoscopy and he took 6 biopsies of my esophagus, stomach and duodenum as there were some unusual changes he saw while during the endoscopy.  Now that the biopsies look positive for celiac he told me we need a positive blood test to confirm it.  He's a highly respected gastroenterologist affiliated with a national university.  Not a health care fraud specialist.  Of course, you are entitled to your opinion.

frieze Community Regular
frieze
Posted
26 minutes ago, Binti1962 said:

Wow, Positron, that's pretty harsh!  He didn't do the endoscopy and biopsies looking for celiac.  So you can't really say he did it backwards on purpose.  I was having issues which necessitated an endoscopy and he took 6 biopsies of my esophagus, stomach and duodenum as there were some unusual changes he saw while during the endoscopy.  Now that the biopsies look positive for celiac he told me we need a positive blood test to confirm it.  He's a highly respected gastroenterologist affiliated with a national university.  Not a health care fraud specialist.  Of course, you are entitled to your opinion.

if you have a positive biopsy, why do you need blood tests?  the  biopsy is the "gold standard".

Positron Newbie
Positron
Posted
2 hours ago, Binti1962 said:

Wow, Positron, that's pretty harsh!  He didn't do the endoscopy and biopsies looking for celiac.  So you can't really say he did it backwards on purpose.  I was having issues which necessitated an endoscopy and he took 6 biopsies of my esophagus, stomach and duodenum as there were some unusual changes he saw while during the endoscopy.  Now that the biopsies look positive for celiac he told me we need a positive blood test to confirm it.  He's a highly respected gastroenterologist affiliated with a national university.  Not a health care fraud specialist.  Of course, you are entitled to your opinion.

I went to a doctor a few days ago for an unrelated issue.  We got to talking about my self diagnosed celiac disease and lactose intolerance.  Since she is a doctor she has to know more than me, at one point she ask me what do I eat as though this could not be true.  I should have responded food.  Doctors will do as many test as the insurance plan will allow and also remove your GI tract before diagnosing Celiac disease.  I had another doctor tell me that gluten can not cause internal bleeding so that he could scope me, he lied to my face or was not qualified to wash tables.  They lie, and get away with whatever the insurance allows, as you continue to eat wheat and suffer.  It's wrong.

Binti1962 Rookie
Binti1962
Posted
  • Author

Well, my blood test came back negative so it conflicts with the positive biopsy.  Doctor says I'm "fine" and doesn't say much about the positive biopsy.  Should I just relax and be happy that I'm fine or get a second opinion from a celiac specialist?  I guess I don't want to keep eating gluten if I do in fact have celiac disease and the blood test was just negative for some reason.

Thanks

cyclinglady Grand Master
cyclinglady
Posted

Did your doctor order the entire celiac panel?  This includes:

 
-Tissue Transglutaminase (tTG) IgA and (tTG) IgG
-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG
-EMA IgA 
-total serum IgA and IgG (control test)
 
-endoscopic biopsy - make sure at least 6 samples are taken
 
VERY IMPORTANT:  Keep eating gluten daily until ALL testing is complete or the tests can be inaccurate.  
 
(Source: NVSMOM -- ?)

 

I ask because the TTG test is favored by most doctors as it was thought to catch 95% of those with celiac disease.  Now, recent studies have lowered that number.  I am passionate about this because I test positive to only the DGP IGA test (even on follow-up) tests.  Why?  No one knows.  Toddlers seem to test this way, but I am in my 50's! Get copies of your lab tests!  

 

If celiac disease has been completely ruled out, your doctor should find the root cause of damaged villi.  It can be many things (see my earlier thread).  Get another doctor!  

 

Finally, if you think gluten is your issue, you can go gluten free.  My hubby has been gluten-free for 14 years.  He was not able to get a diagnosis.  He went gluten-free per the advice of two medical doctors.  He refuses to do a gluten challenge now.  I can not blame him.  He will tell you that I have had more support from family, friends and medical staff with my formal diagnosis. 

 

Bottom line: do not give up.  Obviously, something is wrong!  ?

 
notme Experienced
notme
Posted

i think i would take my positive biopsy.  i think they consider 5 points for diagnosis, and if you have 3, you're considered diagnosed with celiac.  vitamin deficient, positive blood test, positive biopsy, response to gluten-free diet (and there's one more i can't remember - gah!)  (anemic?)  anyways, the positive biopsy is usually the clincher.  testing for this is sketchy, and there are many false negatives on the blood test (i agree with cycinglady!) most times they will not do the dgp.  if the gluten-free diet gives you relief, your doctor should give you a dx.  or, refer you to some other specialist if he doesn't know enough about it  :/  tough call :(

Binti1962 Rookie
Binti1962
Posted
  • Author

Thanks for your replies, notme!  And cyclinglady.  I'm going to wait for the lab to send me the blood test results and then go to a celiac specialist.  I like my GI but I think he knows little about celiac, and he doesn't seem interested in figuring out the positive biopsy.  I appreciate your taking the time to post.

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