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

Negative blood test but still concerned!


zs1994

Recommended Posts

zs1994 Newbie

Hi all,

Back in September, I had stomach issues for a few weeks. My doctor said it was a virus but ordered me a blood test for Coeliac Disease as my sister has the condition. My results came back as:

Tissue Transglutaminase Antibodies (tTG-IgA) : 4.9 (5.00 - 20.00) 

Doctor said nothing to worry about. However I still have periods where I have gas and soft stools (not diahoerra). Also, my sleeping pattern has been a mess since September and I've had mouth ulcers at least twice since then too. Is it worth going back and asking for a biopsy? 

Thank you all in advance!


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

Before asking for a biopsy, you might ask for a complete celiac blood panel:

-Tissue Transglutaminase (tTG) IgA and (tTG) IgG
-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG
-EMA IgA 
-total serum IgA and IgG (control test)
-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests
 
-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 -- ?)
 
Why the full panel?  The TTG does not catch everyone.   My TTG tests are always negative (even in follow-up testing).  I was positive on only the DGP IGA.  Go figure!  How did your sister test?  

 

Welcome to the forum and let us know how it goes! 

 
CherylS Apprentice

I tested Negative in August on the celiac panel. My symptoms continued and I had to go back to my doctor for a follow up on my anemia.  She referred me to a GI doctor because my numbers didn't improve.  The GI doctor felt that I didn't have celiac, but she ran the genetic test to be thorough and so that we could confidently eliminate it from the list of potential diagnoses.  The genetic test  came back positive.  Since I'm having symptoms I'm getting an EGD with biopsies in a couple of weeks.  The doctor said that she rarely sees people test negative on the panel and have celiac, but it does happen, and there's no explanation to why it happens because our bodies are complex.

My take on your situation; if you aren't confident that celiac isn't your problem and you haven't exhausted all testing options, then keep going.  You only get one body and one life and nobody is going to advocate for you as well as you.

zs1994 Newbie
2 hours ago, CherylS said:

I tested Negative in August on the celiac panel. My symptoms continued and I had to go back to my doctor for a follow up on my anemia.  She referred me to a GI doctor because my numbers didn't improve.  The GI doctor felt that I didn't have celiac, but she ran the genetic test to be thorough and so that we could confidently eliminate it from the list of potential diagnoses.  The genetic test  came back positive.  Since I'm having symptoms I'm getting an EGD with biopsies in a couple of weeks.  The doctor said that she rarely sees people test negative on the panel and have celiac, but it does happen, and there's no explanation to why it happens because our bodies are complex.

My take on your situation; if you aren't confident that celiac isn't your problem and you haven't exhausted all testing options, then keep going.  You only get one body and one life and nobody is going to advocate for you as well as you.

Hi, thank you for your reply. I plan on going back for peace of mind. Can you describe your continuing symptoms after your blood test please? 

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Rejoicephd replied to Rejoicephd's topic in Coping with Celiac Disease
      8

      Draft gluten-free ciders… can they be trusted ?

    2. - Wends replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Inconclusive results

    3. - deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Inconclusive results

    4. - Gigi2025 replied to Leeloff's topic in Gluten-Free Foods, Products, Shopping & Medications
      64

      How Come Gluten Didnt Bother Me In Italy

    5. - Wends replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Inconclusive results


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,710
    • Most Online (within 30 mins)
      7,748

    new journey
    Newest Member
    new journey
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rejoicephd
      @Scott Adams That's actually exactly what I ended up asking for— vodka tonic with Titos.  I saw on their website that Tito's is certified gluten-free (maybe many of the clear vodkas are, I don't know, I just happened to look up Tito's in advance). I should have actually specified the 'splash' though, because I think with the amount of tonic she put in there, it did still end up fairly sweet.  Anyway, I think I've almost got this drink order down!
    • Wends
      Be interesting to see the effects of dairy reintroduction with gluten. As well as milk protein sensitivity in and of itself the casein part particularly has been shown to mimic gluten in about 50% of celiacs. Keep us posted!
    • deanna1ynne
      She has been dairy free for six years, so she’d already been dairy free for two years at her last testing and was dairy free for the entire gluten challenge this year as well (that had positive results). However, now that we’re doing another biopsy in six weeks, we decided to do everything we can to try to “see” the effects, so we decided this past week to add back in dairy temporarily for breakfast (milk and cereal combo like you said).
    • Gigi2025
      Hi Christiana, Many thanks for your response.  Interestingly, I too cannot eat wheat in France without feeling effects (much less than in the US, but won't indulge nonetheless).  I also understand children are screened for celiac in Italy prior to starting their education. Wise idea as it seems my grandson has the beginning symptoms (several celiacs in his dad's family), but parents continue to think he's just being difficult.  Argh.  There's a test I took that diagnosed gluten sensitivity in 2014 via Entero Labs, and am planning on having done again.  Truth be told, I'm hoping it's the bromine/additives/preservatives as I miss breads and pastas terribly when home here in the states!  Be well and here's to our guts healing ❤️
    • Wends
      Lol that’s so true! Hope you get clarity, it’s tough when there’s doubt. There’s so much known about celiac disease with all the scientific research that’s been done so far yet practically and clinically there’s also so much unknown, still. Out of curiosity what’s her dairy consumption like? Even compared to early years to now? Has that changed? Calcium is dependent in the mechanism of antigen presenting cells in the gut. High calcium foods with gluten grains can initiate inflammation greater.  This is why breakfast cereals and milk combo long term can be a ticking time bomb for genetically susceptible celiacs (not a scientific statement by any means but my current personal opinion based on reasoning at present). Milk and wheat are the top culprits for food sensitivity. Especially in childhood. There are also patient cases of antibodies normalising in celiac children who had milk protein intolerance/ delayed type allergy. Some asymptomatic. There were a couple of cases of suspected celiacs that turned out to have milk protein intolerance that normalised antibodies on a gluten containing diet. Then there were others that only normalised antibodies once gluten and milk was eliminated. Milk kept the antibodies positive. Celiac disease is complicated to say the least.
×
×
  • 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.