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

Shireen32
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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 .



 

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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.

Scott Adams Grand Master
Scott Adams
Posted

For people with celiac disease hidden gluten in their diets is the main cause of elevated Tissue Transglutaminase IgA Antibodies (tTG-IgA), but there are other conditions, including cow's milk/casein intolerance, that can also cause this, and here is an article about the other possible causes:

 

 

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