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

Positive biopsy ? About blood test

Binti1962

Recommended Posts

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! 

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

Celiac.com Sponsor (A8-M):


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.

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

Celiac.com Sponsor (A8-M):


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.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      High TTG-IgG and Normal TTG-IgA

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining...
    2. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      High TTG-IgG and Normal TTG-IgA

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
    3. Jsingh
      - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

      Hi, My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine...
    4. lizzie42
      - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin. He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her...
    5. trents
      - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,868
    • Most Online (within 30 mins)
      7,748
    yooperjb
    Newest Member
    yooperjb
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
    • Jsingh
      Son's legs shaking

      By Jsingh · Posted

      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Bob red mill gluten free oats

      By trents · Posted

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
×
×
  • 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.