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

Can you have a positive blood test, but a negative biopsy - and still be celiac?

Jojo7
 Share

Recommended Posts

Jojo7 Newbie
Jojo7
Posted

Hi everyone :)

Soooooo... I'm super confused. 

I had my blood tests done a month ago ish and it came back positive on Transglutaminase-IgA. They even did it twice. Same result. And ofc i ate gluten back then. 

Then they did my biopsy about two weeks ago. Right after when I woke up they informed me that they had seen some signs of celiac and that I should go on a glutenfree diet immediately.

Cut to two weeks later - now. 

I just got the answer from the biopsy in a letter and now they say it's normal and that I can go back to eating gluten again. (I've chosen not to, until I know what's going on) They will schedule a meeting where they'll probably close my case. I'm super confused. 

Especially cause I have so many symptoms as well. I've noticed a pattern when I think I'm glutened. 

Tired AF -> bloated and having a hard time breathing -> excessive yawning -> jerks while sleeping -> nauseous -> MAJOR headache waking up next day and super tired -> and ofc constipated.

Have anyone tried anything like this? (Negative biopsy, but still feeling bad. Or similar symptoms) 

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

Celiac.com Sponsor (A8-M):


LynseyClare Rookie
LynseyClare
Posted
On 12/12/2022 at 12:19 PM, Jojo7 said:

Hi everyone :)

Soooooo... I'm super confused. 

I had my blood tests done a month ago ish and it came back positive on Transglutaminase-IgA. They even did it twice. Same result. And ofc i ate gluten back then. 

Then they did my biopsy about two weeks ago. Right after when I woke up they informed me that they had seen some signs of celiac and that I should go on a glutenfree diet immediately.

Cut to two weeks later - now. 

I just got the answer from the biopsy in a letter and now they say it's normal and that I can go back to eating gluten again. (I've chosen not to, until I know what's going on) They will schedule a meeting where they'll probably close my case. I'm super confused. 

Especially cause I have so many symptoms as well. I've noticed a pattern when I think I'm glutened. 

Tired AF -> bloated and having a hard time breathing -> excessive yawning -> jerks while sleeping -> nauseous -> MAJOR headache waking up next day and super tired -> and ofc constipated.

Have anyone tried anything like this? (Negative biopsy, but still feeling bad. Or similar symptoms) 

Hey! I've just put a post on pretty identical to yours!! I'm so fed up! 

Had my endoscopy 2 weeks ago and spoke to my GP today who read out my report. Said unlikely coeliac :( I have an appointment with the consultant but not until 11 January!!

If its not coeliac then what is it!!!! 

Scott Adams Grand Master
Scott Adams
Posted

@Jojo7 your situation is unusual, and it would be a great question to ask your gastroenterologist. Why would they tell you it looks like celiac disease as you were recovering from your biopsy, then change this on the report? I can't think of any reason at all.

If your tTG blood test result was positive, then you likely have celiac disease--especially if your gastro told you this right after your biopsy, which they did!

I think you should just go gluten-free and see if your symptoms improve, and assume you have celiac disease.

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
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
      133,263
    • Most Online (within 30 mins)
      7,748
    Fruitypebbles
    Newest Member
    Fruitypebbles
    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.