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 Blood Test, Neg Endoscopy Then Neg Blood Test

stretch69

Recommended Posts

stretch69 Newbie
stretch69
Posted

Hi everyone,

I'm sorry if I'm bringing up something that's been asked a million times but...

About a month ago my sister was diagnosed celiac after a blood test then a positive biopsy.

She suggested I get tested because I have a lot of the typical symptoms. I was previously told by a doctor years ago I prob had IBS.

Anyway I went to the Dr and got the test which came back positive. I don't know the actual levels atm but the referal said my results were 'highly suggestive'.

I then had my endoscopy, straight after the procedure he said it didn't look like I had celiac disease. Got the biopsy results back and they were neg.

I asked the endoscopy specialist for another blood test and to test for the genes, he reluctantly agreed .

I rang today after they received the results from the pathologist,

He said they were neg.(gene results aren't back yet)

Okay now I just feel nuts, I don't know whether or not to go back to my GP and ask for another test and if there's even any point?

BTW I haven't changed my diet at all yet

Has this happened to anyone else?

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

Celiac.com Sponsor (A8-M):


ksue12 Newbie
ksue12
Posted

Hi everyone,

I'm sorry if I'm bringing up something that's been asked a million times but...

About a month ago my sister was diagnosed celiac after a blood test then a positive biopsy.

She suggested I get tested because I have a lot of the typical symptoms. I was previously told by a doctor years ago I prob had IBS.

Anyway I went to the Dr and got the test which came back positive. I don't know the actual levels atm but the referal said my results were 'highly suggestive'.

I then had my endoscopy, straight after the procedure he said it didn't look like I had celiac disease. Got the biopsy results back and they were neg.

I asked the endoscopy specialist for another blood test and to test for the genes, he reluctantly agreed .

I rang today after they received the results from the pathologist,

He said they were neg.(gene results aren't back yet)

Okay now I just feel nuts, I don't know whether or not to go back to my GP and ask for another test and if there's even any point?

BTW I haven't changed my diet at all yet

Has this happened to anyone else?

Hi!  I am one that had a Deaminated Gliadin IgA at 42 (0-10).  The other usual blood tests were negative.  My biopsy was negative.  So I have no clue what that meant, but I went gluten free anyway.

SMRI Collaborator
SMRI
Posted

A positive blood tests trumps a negative biopsy.  Depending on how the biopsy was taken, they might have just missed the damage--it happens frequently.  Look on line or call your dr and get the full results of your lab tests, including the lab ranges for normal.  I don't know that there is a need to go back to your GP, you have Celiac.  If your insurance covers it, meet with a nutritionist or dietitian if you need help getting started on a gluten-free diet, otherwise, read this board for more information than you can possibly digest :D.

Cara in Boston Enthusiast
Cara in Boston
Posted

Since the blood test for Celiac is a series of tests, maybe you were positive on some, but not all.  Maybe the second lab did not do the full panel and therefore did not see the full picture.   Of the 5 tests commonly given, my son and I had opposite results.  Where he was negative, I was positive.  Where I was negative, he was positive.  We both have celiac disease.  If we had been given only one or two of the tests (many doctors don't do the full panel) we could have missed it.

 

He had ZERO gastro symptoms and a positive biopsy.  I had so very many of the classic symptoms and a negative biopsy.  He had a "low probability" of celiac disease based on his genetic test.  I didn't even bother with the genetic test.  

 

You have a positive blood test.  You have symptoms consistent with Celiac Disease.  You have a first degree relative with Celiac Disease.  You have Celiac Disease.

 

Damage can be easily missed by an endoscopy.

 

Your next "test" is to try the diet (100% . . . no cheating) to see if you feel better.  Give it 3 months before you decide.  Know that in the first few weeks you may feel worse (gluten withdrawal).  

 

You don't need a formal diagnosis to change your diet and start feeling better.

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. Jmartes71
      - Jmartes71 replied to chrish42's topic in Doctors
      7

      Doctors and Celiac.com

      I appreciate you validating me because medical is an issue and it's not ok at all they they do this. Some days I just want to call the news media and just call out these doctors especially when they are supposed to be specialist Downplaying when gluten-free when they should know gluten-free is false negative. Now dealing with other issues and still crickets...
    2. Wheatwacked
      - Wheatwacked replied to MauraBue's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Have Tru Joy Sweets Choco Chews been discontinued??

      M&M Peanuts. About the same calories and sugar while M&M Peanuts have fiber, potassium, iron and protein that Tootsie Rolls ("We are currently producing more than 50 million Tootsie Rolls each day.") don't. Click the links to compare nutritional values. Both are made with sugar, not high fructose corn syrup. I use them as a gluten free substitute...
    3. Theresa2407
      - Theresa2407 replied to chrish42's topic in Doctors
      7

      Doctors and Celiac.com

      I see it everyday on my feeds. They go out and buy gluten-free processed products and wonder why they can't heal their guts. I don't think they take it as a serious immune disease. They pick up things off the internet which is so far out in left field. Some days I would just like to scream. So much better when we had support groups and being able to teach...
    4. Scott Adams
      - Scott Adams replied to MauraBue's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Have Tru Joy Sweets Choco Chews been discontinued??

      Some of the Cocomels are gluten and dairy-free: https://cocomels.com/collections/shop-page
    5. Scott Adams
      - Scott Adams replied to chrish42's topic in Doctors
      7

      Doctors and Celiac.com

      Thank you for the kind words! I keep thinking that things in the medical community are improving, but a shocking number of people still post here who have already discovered gluten is their issue, and their doctors ordered a blood test and/or endoscopy for celiac disease, yet never mentioned that the protocol for such screening requires them to be eating...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,264
    • Most Online (within 30 mins)
      7,748
    butteguy
    Newest Member
    butteguy
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Jmartes71
      Doctors and Celiac.com

      By Jmartes71 · Posted

      I appreciate you validating me because medical is an issue and it's not ok at all they they do this. Some days I just want to call the news media and just call out these doctors especially when they are supposed to be specialist Downplaying when gluten-free when they should know gluten-free is false negative. Now dealing with other issues and still crickets for disability because I show no signs of celiac BECAUSE IM GLUTENFREE! Actively dealing with sibo and skin issues.Depression is the key because thats all they know, im depressed because medical has caused it because of my celiac and related issues. I should have never ever been employed as a bus driver.After 3 years still healing and ZERO income desperately trying to get better but no careteam for celiac other than stay away frim wheat! Now im having care because my head is affected either ms or meningioma in go in tomorrow again for more scans.I know im slowly dying and im looking like a disability chaser
    • Wheatwacked
      Have Tru Joy Sweets Choco Chews been discontinued??

      By Wheatwacked · Posted

      M&M Peanuts. About the same calories and sugar while M&M Peanuts have fiber, potassium, iron and protein that Tootsie Rolls ("We are currently producing more than 50 million Tootsie Rolls each day.") don't. Click the links to compare nutritional values.  Both are made with sugar, not high fructose corn syrup.  I use them as a gluten free substitute for a peanut butter sandwich.  Try her on grass fed, pasture fed milk. While I get heartburn at night from commercial dairy milk, I do not from 'grassmilk'.     
    • Theresa2407
      Doctors and Celiac.com

      By Theresa2407 · Posted

      I see it everyday on my feeds.  They go out and buy gluten-free processed products and wonder why they can't heal their guts.  I don't think they take it as a serious immune disease. They pick up things off the internet which is so far out in left field.  Some days I would just like to scream.  So much better when we had support groups and being able to teach them properly. I just had an EMA blood test because I haven't had one since my Doctor moved away.  Got test results today, doctor ordered a D3 vitamin test.  Now you know what  type of doctors we have.  Now I will have to pay for this test because she just tested my D3 end of December, and still have no idea about my EMA.    
    • Scott Adams
      Have Tru Joy Sweets Choco Chews been discontinued??

      By Scott Adams · Posted

      Some of the Cocomels are gluten and dairy-free: https://cocomels.com/collections/shop-page
    • Scott Adams
      Doctors and Celiac.com

      By Scott Adams · Posted

      Thank you for the kind words! I keep thinking that things in the medical community are improving, but a shocking number of people still post here who have already discovered gluten is their issue, and their doctors ordered a blood test and/or endoscopy for celiac disease, yet never mentioned that the protocol for such screening requires them to be eating gluten daily for weeks beforehand. Many have already gone gluten-free during their pre-screening period, thus their test results end up false negative, leaving them confused and sometimes untreated. It is sad that so few doctors attended your workshops, but it doesn't surprise me. It seems like the protocols for any type of screening should just pop up on their computer screens whenever any type of medical test is ordered, not just for celiac disease--such basic technological solutions could actually educate those in the medical community over time.
×
×
  • 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.