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I was diagnosed with celiac at the end of October. My DGP IgA was tested September 12th and was 127. I just got it retested and it was 135. I have been eating gluten free since I was diagnosed. I thought the numbers should be going down. How long does it usually take for the numbers to start dropping? Right now I feel like I must be getting cross contamination somewhere.

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Your numbers should not be going up at all. You are getting gluten somewhere.

Do you eat out?

Have you read the Newbie 101 at the top of the coping section? That will help you to ferret out how you may be getting glutened.

Do you have a gluten free household or is it a shared household?

Do you read ingredient labels?

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6 hours ago, abaiker said:

I was diagnosed with celiac at the end of October. My DGP IgA was tested September 12th and was 127. I just got it retested and it was 135. I have been eating gluten free since I was diagnosed. I thought the numbers should be going down. How long does it usually take for the numbers to start dropping? Right now I feel like I must be getting cross contamination somewhere.

There was a study where they checked 2 weeks on a gluten-free diet , and antibodies were still going up .  The study wasn't about that, so I think that is why they didn't go any further.  

So... looks like 2 months gluten free?  If we think that antibodies are still being made at least two weeks gluten free.... account for the fact that most people need a few weeks to actually figure out and eat gluten-free...I would say it was a bit soon to re- test antibodies.  

 

Edit it to add- if you were tested sept 12 and ate gluten for 6 more weeks before going gluten-free - who knows how high it got.  Shame on your doctor for doing the re- test so soon and discouraging you!

 

Edited by kareng

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6 hours ago, kareng said:

Edit it to add- if you were tested sept 12 and ate gluten for 6 more weeks before going gluten-free - who knows how high it got.  Shame on your doctor for doing the re- test so soon and discouraging you!

 

Really interesting point Kareng.  In fact, my ttg went up this autumn (November), depressingly, and I saw a nutritionalist earlier this month and she doesn't want to retest til March.  She felt it was too soon for those figures, too.  

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The University of Chicago recommends re-testing 3 to six months after going gluten free and then annually.  Most GIs wisely wait because although you can theoretically heal that fast, it takes TIME to master the gluten free diet.  It can take up to a year or longer for antibodies to come down.  As someone who has more than one autoimmune issue like myself (and only a DGP IgA that has ever been elevated), I think that impacts healing  and how quickly antibodies come down.  

My recent endoscopy (5 years post diagnosis) revealed a healed small intestine, yet my DGP IgA was still at 80 (which was over 200 last April when I was somehow exposed to gluten).  

Hang in there!  Wait six more months to get retested.  Look for other signs of healing (like anemia resolving, improve gut issues).  

Edited by cyclinglady

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I have read the newbie 101 and have been careful about reading labels. I'm the only one that's gluten free in my household, so they could be contaminating me. I was eating gluten for 6 weeks after my blood test because it took that long to get an official diagnosis and my GP told me to still be eating it for the tests to be accurate. It was probably too soon to retest, but the test was accidentally ordered by the lab. I have been having an increase in joint pain over the last couple months and my rheumatologist ordered lab work. The lab saw the celiac panel had been ordered, but didn't see results so they added it on because they thought it still needed done.  My gut issues are starting to get better, but I'm thinking the joint pain might have been from the celiacs because all of the rheumatoid tests came back normal for the first time in twenty years.

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