Doc says levels are SUPER high, trying to figure out what that means

[Bookgirl32]

Hi, new here! I didn't consider myself to have any extreme symptoms but got tested due to a sibling testing positive and having a positive biopsy. My doctor calls and says "You have celiac disease, your levels are super high". Obviously going to see a gastroenterologist and get the endoscopy, etc. I've been mentally preparing myself for the past few weeks because my brother and I share so many genetic similarities, I kind of knew it was inevitable. I've read all day, seen all the scary things (cancer, lymphoma, I guess that's for another thread but I'm having a hard time coming up with internet info, some really scary, some reassuring), reeling from all the info. But the specific question is: Do really high levels mean really bad disease? I don't even know how to interpret these: 

TTG IgG ANTIBODIES: <0.8

TTG IgA ANTIBODIES: 30.9

GLIADIN IgG ANTIBODIES: 364.9

DEAMIDATED GLIADIN     IgA ANTIBODIES: 143

 

Thanks and I think I'll be here a lot in the next few months!

 

[tessa25]

Umm, well, I think we can safely say you have celiac with those numbers. You are supposed to keep eating gluten until the endoscopy, if you choose to get one.

Once you go 100% gluten free, no mess ups, those numbers should come down.

After a while it'll be easy peasy.

 

Note: I'm assuming the normal range for those numbers is less than 20.

[cyclinglady]

I have read that the high numbers do not necessarily coordinate with a severe damage.  I just had a repeat endoscopy done and my DGP IgA was high, yet I had no villi damage.  The antibodies tests are good, but not perfect.  It is one reason that the endoscopy to obtain intestinal biopsies is still the gold standard.  I can tell you that it is nice to have a benchmark for future reference.  I was glad to see that my small intestine had healed!  

[Bookgirl32]

I've googled the names of the tests but it is really confusing. I'm wondering if higher numbers means worse damage? More likely that the diet won't work? I'm hoping I'll start to have symptoms when I do accidentally eat gluten, because I don't feel like I have any right now and I'm so scared of cross contamination after all I've read today. 

[cyclinglady]

The gluten-free diet will work.  It is RARE that it does not.  Cross contamination is an issue but once you learn the diet, it become second nature.  

If you can, get the endoscopy.  Why?  You can rule out other concurrent issues.  Some people do not have the option due to financial constraints or long wait times (e.g. Canada).  

[Nissa Fatima]

Hello my daughter result was anti-transglutamnase Igg 60....is it necessary for 8 yrs old girl to go through biopsy?or is it confirmed from this test that she is having celiac disease?

[GFinDC]

  On 4/25/2018 at 6:30 AM, Nissa Fatima said:

Hello my daughter result was anti-transglutamnase Igg 60....is it necessary for 8 yrs old girl to go through biopsy?or is it confirmed from this test that she is having celiac disease?

Expand Quote  

Hi Nissa,

The usual process is to get the blood antibodies test first, and then an endosocopy.  During the endoscopy, they take biopsy samples of the gut lining.  Then they look at the samples with a microscope to check for damage.

Sometimes a GI doctor will diagnose a child based on positive blood tests and response to the gluten-free diet, even without the endoscopy.  But not all doctors do that.