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

Recommended Posts

Jojo7 Newbie

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
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

@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
  • 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 replied to suek54's topic in Dermatitis Herpetiformis
      3

      Awaiting dermatitis herpetiformis confirmation following biopsy

    2. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      3

      Awaiting dermatitis herpetiformis confirmation following biopsy

    3. - trents replied to suek54's topic in Dermatitis Herpetiformis
      3

      Awaiting dermatitis herpetiformis confirmation following biopsy

    4. - suek54 posted a topic in Dermatitis Herpetiformis
      3

      Awaiting dermatitis herpetiformis confirmation following biopsy

    5. - xxnonamexx replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Healthy Gluten Free Foods low sugar that you found?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,247
    • Most Online (within 30 mins)
      7,748

    Noisette
    Newest Member
    Noisette
    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

    • trents
      You might also consider a low iodine diet as iodine is know to exacerbate dermatitis herpetiformis. But be careful with that as well as there are health problems that can accrue from iodine deficiency.
    • suek54
      Hi, Yes, the rash has gone. I still get the itches but there is nothing to see now, apart from a lot of discoloured areas where the rash was worst. Occasionally I get a single lump come up, a bit like hives, but no bigger than a pea and it goes after 24hrs and a steroid cream application.  And yes, giving the gluten-free diet 110%. Very careful about any cross contamination.  This is my fifth autoimmune condition so well and truly on that bandwagon. 
    • trents
      Welcome to the the celiac.com community, @suek54! Is the Dapsone getting the rash under control? Are you practicing a gluten free diet yet? The only known cause for dermatitis herpetiformis is celiac disease.
    • suek54
      Hi Im new to this game, so bear with me.  May through to December last year totally miserable, covered literally head to toe in the worst rash ever, itching like I just cant explain. After seven different medics told me just to "keep putting the cream on, whatever it is will go in the end" finally one lovely doc diagnosed dermatitis herpetiformis. Biopsy 6 weeks ago and Dapsone, which I seem to be tolerating OK so far.  The NHS is in permanent backlog so no result yet but just wanted to say hello to anyone else with this maddening condition.
    • xxnonamexx
      I know gluten free proteins like eggs and yogurt but nuts especially trail mixes are tricky as they are hard to find certified gluten free trail mixes especially w/o added sugars. I agree subscription boxes are hit or miss I think I have found RXBar with simple ingredients no added sugars gluten-free might be a great protein bar.
×
×
  • 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.