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Got "Glutened" but tested negative

Tom in ID

By Tom in ID
in Meet Up Room

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Tom in ID Newbie
Tom in ID
Posted

OK, here is one for everybody. I am 18 now and was diagnosed with Celiac at 5 years old. I have been strictly off gluten since. My blood tests always come back as not showing any gluten, which makes sense as I don't consume it.

About 2 years ago I got "glutened" by a hotdog bun that I was told was gluten free, and I didn't have any immediate side effects, but I didn't see the doctor, so I don't know if there were any. I got "glutened" again about 2 weeks ago with an ice cream sandwich that was labelled gluten free but wasn't. This time I had my yearly blood draw the following week, so I thought it would be interesting to see what the results were. I just got them in and I'm really confused. The doctor ordered the "Vitamin D, 25 OH Total" and the Tissue Transglutaminase, IgA" tests. The Vitamin D came back as 43.6, which is really good and the tTG came back in at 1, which is negative.

How is it possible that I tested this way if I had gluten the week before? I'm wondering now if the original test that showed I had Celiac was incorrect.

Any thoughts? Thanks for the help.

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cyclinglady Grand Master
cyclinglady
Posted

It takes time for antibodies to get circulated into the bloodstream.   When a person has been gluten free and wishes to get tested, doctors recommend 8 to 12 weeks of consuming gluten daily.  Your one exposure to an ice cream sandwich is not going to hit for a while and you might need to have repeated exposures.

The TTG test was designed to help diagnose and not really check for dietary compliance.  Unfortunately, the blood tests are the only “tools in the toolbox” for now.  You could have your doctor measure your DGP which is thought to be better at detecting gluten exposures, but again, it takes time to build up antibodies.  Celiac disease is all about your body attacking itself.  It is not an allergy (IgE) which is attacking an invader like peanuts, cat dander or ragweed.  

 

RMJ Mentor
RMJ
Posted

If you are gluten free, it takes weeks of eating gluten to get the antibodies to a level where they can be measured.

  • 2 weeks later...
rami999 Newbie
rami999
Posted

it might be a false negative

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