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Question About Celiac Blood Test Results- Advice Needed.

Jennifer81

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Jennifer81 Newbie
Jennifer81
Posted

Hello Everyone.

 

This is my first post in this community and I am happy to have found such a supportive site. :)

 

I do have a question about a blood panel test I recently took.

 

I had the ttg blood test taken and scored what they call in the "grey" for Celiac D.

 

0-3 Neg

4-9 elevated

10 + Positive

 

I scored a 6- and my GI Doc said I was mildly elevated. They told me I did  not test either negative or positive for Celiac Disease.

They only way in which they can be 100 certain is to go trough with an endoscopy/biopsy. I have had two endoscopies back in 2008-2009

and both are  very hard for me to go through. I decided to go gluten free to see if my symptoms clear up a bit. I will re-test in another 6 months to see if anything has changed. The antibodies have nothing to due with gluten sensitivities either you have them or you don't.  I was told certain people just have a raised level of antibodies. I would hate to under go another procedure just to find I do not have it. I do however need to know what is going on inside my system and need advice from anyone who has a better understanding of my test results or advice on what they think the results mean or I should do.

 

I wish I either scored a Neg or a Positive.....its always like this for me.

Has anyone ever had this happen and what did you do?

 

Any advice will help out here.

 

Thanks

 

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cyclinglady Grand Master
cyclinglady
Posted

Did they test for celiac when they did the old biopsies?

Just from my personal experience, my blood test showed barely positive but my biopsy showed moderate to severe damage. I was also anemic and found out after my diagnosis to have osteopenia and osteoporosis.

If you do another biopsy, be sure they take 6 or more samples.

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ravenwoodglass Mentor
ravenwoodglass
Posted

Can you get your doctor to order a complete celiac panel? That would be the first thing I would do if you are reluctant to have another endoscopy. Get the panel before you go gluten free as if you go gluten free first the panel will come back a false negative.

After all your testing is finished for celiac that you choose to do then do give the diet a good strict trial no matter what the results.

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NoGlutenCooties Contributor
NoGlutenCooties
Posted

Hi and Welcome to the Forum!

 

I agree that you should request the full blood panel of tests - but you can't go gluten-free before all testing is complete.

FWIW... the cut-off for my lab for the ttg iga was 11.  I was at 13.  Some would call that a "weak positive".  I too had moderate to severe villi damage - found via the endoscopy.

As far as I'm concerned being "grey" or "weakly positive" is like being "weakly pregnant".  Definitely push your doctor to get to the bottom of it.  Make sure you're eating the equivalent of at least one piece of bread every day, get the full Celiac panel of blood tests, and confirm with a biopsy.  The biopsy can be important because they also check for other issues, not just Celiac.

I would also suggest that you get your other nutrient levels checked, especially vitamin D, calcium, and iron levels.  A bone density test is also a good idea.

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Jennifer81 Newbie
Jennifer81
  • Author
Posted

Can you get your doctor to order a complete celiac panel? That would be the first thing I would do if you are reluctant to have another endoscopy. Get the panel before you go gluten free as if you go gluten free first the panel will come back a false negative.

After all your testing is finished for celiac that you choose to do then do give the diet a good strict trial no matter what the results.

Hello:

 

I did call my gi doc now to check to see if the whole Celiac Panel was done and the nurse said it was. She explained to me the results. The IGA/TTG result came back a 6. And my Immunoglobulin A was a 241 in the healthy range ( 91-414)  was normal. She explained again the only way to be sure was to get the biopsy done. Are there any other blood tests to take? My doc ordered the Celiac Panel so I think this may be it for blood testing.......

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Jennifer81 Newbie
Jennifer81
  • Author
Posted

Did they test for celiac when they did the old biopsies?

Just from my personal experience, my blood test showed barely positive but my biopsy showed moderate to severe damage. I was also anemic and found out after my diagnosis to have osteopenia and osteoporosis.

If you do another biopsy, be sure they take 6 or more samples.

Yes they did ,and it was negative for Celiac. Im not anemic but if I do go through with a biopsy I will be sure they take plenty of samples...:) Ive read though that Celiac can evolve at any time? So even though I tested neg then I could have it now.. Did your symptoms clear up when you started a gluten free lifestyle? How soon were you feeling normal again after changing your diet?

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cyclinglady Grand Master
cyclinglady
Posted

It took me six weeks to see any results and one year to feel completely normal. My only symptom was anemia, but between the blood test and the biopsy, I ate a lot of gluten, and then developed some intestinal issues. Those are the ones that improve within six weeks of remaining on a gluten free diet. My husband has been gluten free for 13 years so the gluten-free learning curve was easy for me and allowed for faster healing (i think).

You may not be celiac, but have NCGI (non-celiac gluten intolerance) and only a gluten-free can determine that as there are no tests for NCGI.

You are right that you can develop celiac disease at any time.

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GottaSki Mentor
GottaSki
Posted

Hello:

 

I did call my gi doc now to check to see if the whole Celiac Panel was done and the nurse said it was. She explained to me the results. The IGA/TTG result came back a 6. And my Immunoglobulin A was a 241 in the healthy range ( 91-414)  was normal. She explained again the only way to be sure was to get the biopsy done. Are there any other blood tests to take? My doc ordered the Celiac Panel so I think this may be it for blood testing.......

 

That is not a complete celiac antibody panel (blood tests).

 

Missing were:

 

tTG-IgG

EMA-IGA - this is usually run with positive tTG-IgA...I would insist on it as yours was elevated.

DGP-IgA

DGP-IgG

 

Make sure you do not remove gluten until you are sure testing is complete.

 

Hang in there :)

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