Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Still testing positive after being gluten free for one year ?!!

Shireen32
 Share

Recommended Posts

Shireen32 Rookie
Shireen32
Posted

Hi , since being gluten free I am still having bad stomach problems . Such as constant gas in my stomach 24/7 ,burning, constant bubbling noises coming from my stomach and gurgling sounds that never stop .Pain under the left side of my rib cage when ever I eat and just always there’s pain there  .  My symptoms have not improved at all since being gluten free.  Could this be refractory coeliac disease ?? How is that even diagnosed or confirmed  ? 

I had tests recently and this is what they say :Endomysial abs (IgA) -Positive 

TTG abs (IgA)U/ml : My result is : 0.9 U/ml The Range:0 - 10 U/ml

What does this mean pls ???

How can I still test positive for Endomysial abs when I am gluten free and am very careful about cross contamination? Do I even have coeliac disease I’m convinced some other digestive disorder is causing these symptoms . 

 I also have not had a endoscopy and now the gastroenterologist calls me after one year ( I’m from the uk and have free healthcare which has been such a nightmare with all this and never help me  )  so as I am gluten free the gastroenterologist advised me to start eating gluten again to be referred for a biopsy .. Is a biopsy even worth me doing ?

The only proof I have is when I was eating gluten I could never get my ferretin , vitamin d and folate levels up . And since being gluten free these have gone up a little bit  . But that doesn’t always mean coeliac as I know gluten stops absorption in even normal people  .

Pls can anyone shed some light it’s much needed ! And share some advice or answer my questions above . I have no idea with this whole coeliac stuff and am very much struggling .Much Appreciated .



 

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

Celiac.com Sponsor (A8-M):


knitty kitty Grand Master
knitty kitty
Posted

@Shireen32, 

Take some deep breaths.  Your labs are fine!  Your tTg IgA is so low!  Well done!  Your endomysial IgA is fine.  There's not a level on the endomysial test.  It's just "yes or no" for if you have celiac disease.  

No, it's too early to call it refractory.

What are you eating?  Please tell us more than meat and veg.

Do you consume dairy?

Do you consume processed gluten free foods?  

Are you taking any prescription medications, herbal supplements, vitamins and minerals?  

Scott Adams Grand Master
Scott Adams
Posted

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

  • 9 months later...
Jenn D Rookie
Jenn D
Posted

Hi. Did your ema levels ever go negative? My son is 2 years in gluten free and they are still positive.  I'm scared he has refractory celiac disease. Please if anyone has any info greatly appreciate it. His ttg is 3 which is considered normal.

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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,650
    • Most Online (within 30 mins)
      7,748
    NancyW
    Newest Member
    NancyW
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.3k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jenn D
      Still testing positive after being gluten free for one year ?!!

      By Jenn D · Posted

      Hi. Did your ema levels ever go negative? My son is 2 years in gluten free and they are still positive.  I'm scared he has refractory celiac disease. Please if anyone has any info greatly appreciate it. His ttg is 3 which is considered normal.
    • MomofGF
      Not sure if this is Celiac or just a gluten-free intolerance

      By MomofGF · Posted

      I will have that info soon but it was a laundry list of a test and 9 viles. ok so there were some days she was gluten she barely ate because of the reactions. I told her 3 weeks of atleast 10g’s a day and no gluten-free days. Thanks so much for your help! I didn’t know my suggestion for gluten-free days would have hurt her.    I will come back with the list to make sure the req was proper!! 
    • trents
      Not sure if this is Celiac or just a gluten-free intolerance

      By trents · Posted

      A "gluten challenge" of two weeks would be the bare minimum for expecting to render valid testing, and that would have been paired with eating a minimum of 10 g of gluten each day (the equivalent of 4-6 slices of wheat bread). And with the three gluten free days in the midst of that two week gluten challenge I would not have confidence in the results of the testing. Was there a blood test done for IGA deficiency? Can you post the test names that were done with the scores and with the reference ranges used by the lab? By the way, with celiac disease the issue is not being able to digest gluten. Celiac disease is an autoimmune disorder defined by the fact that ingestion of gluten triggers an immune system response that attacks the membrane that lines the small bowel. The immune system mistakenly identifies the protein gluten as a biologic invader.
    • MomofGF
      Not sure if this is Celiac or just a gluten-free intolerance

      By MomofGF · Posted

      Hey all!! M i want to thank everyone for their suggestions and advice - I am a single mother of 4 (now 3) and was helping with my oldest leaving the nest. I have another child with medical issues and with work (it’s our end year), life has been crazy and I haven’t had the time to answer.    so we got a blood test done for my daughter that can’t digest gluten. She had been eating gluten for 2 weeks. The blood work came back normal? How is that possible. I see her with my own eyes and it’s not normal. Is that not long enough?  I am thinking about having her eat gluten another week then go to the hospital and see what they say.    She did have 3 gluten-free days in those 2 weeks but she was getting afraid to eat and I told her to may take a day off - was this a bad thing to do? Girl was having constant back pains and muscle soreness as well. Headaches/migraines…should I wait longer. I did see 4-6 weeks of Gluten consumption prior to testing… kind of at a loss now.    Thanks to everyone for whatever advice you can give.   Enjoy your Sunday 😃👋👋      
    • Scott Adams
      Query

      By Scott Adams · Posted

      This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
×
×
  • Create New...