Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Anyone With Positive Blood Tests After Being Off Gluten?


parrfunkel

Recommended Posts

parrfunkel Newbie

Hello. I've been mostly lurking here for a few months. A couple of mints ago my internist suggested I try eliminating dairy and gluten to see if it helps my stomach issue (bloating, gas, medication resistant reflux).

She mentioned that testing for gluten intolerance had I high rate of false negatives so she encouraged me to just give it a try. I've been gluten free for about 8 weeks and have been referred to a gastro because the reflex is still an issue. I just switched my thyroid med to tyrosint this week after learning that synthroid is not gluten-free

Saw the gastro today and I will be having and endoscopy on friday. She also ordered a celiac blood panel. I pointed out to her that I'm not consuming gluten, but she wanta to run the test anyway.

I've read a great deal about the fact that tests will not be accurate when not consuming gluten. Just curious if anyone here has had a positive blood test after going without gluten.

Thanks. I've learned a great deal reading here.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



T.H. Community Regular

There are some celiacs who will have a positive blood test after a few weeks gluten free, but there are also some who won't, so it's a crap shoot, really. My brother, for example, had a negative test (he was already diagnosed, though), and then he cheated for about three or four days before another test, later on, and that was enough to give him a mild positive. But I've heard of some who test negative with only a few weeks off of gluten, too, so really: crapshoot.

Her competence kind of depends on why she wants to run the test. If she's going to say: it's negative, but you're off gluten, so looks like your diet is working.' then that's not so bad.

If she's going to say: your test is negative, so you don't have celiac disease, then she's an idiot, but she's not alone. The university of chicago did a survey study of GI docs, worldwide, and over 50% thought that someone who had been off gluten for YEARS would have a positive blood test if they had celiac disease.

Really, really pathetic. :(

You might want to double check that she's going to take multiple biopsies on the endoscopy, too, as this blood test part of things might not be encouraging. Just in case.

Jaymie Jaymz Rookie

Saw the gastro today and I will be having and endoscopy on friday. She also ordered a celiac blood panel. I pointed out to her that I'm not consuming gluten, but she wanta to run the test anyway.

My GI did the same thing. I don't get why they even bother running the panel when you clearly tell them you are not consuming gluten, therefore, there are most likely NO antibodies running amok in your blood.

Sure enough, mine came back negative. I already knew it would be before I called and asked them for the results. Maybe it's a money thing. I don't know.

Is there any way you can push back your endoscopy procedure so you can at least do a proper gluten challenge?

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,684
    • Most Online (within 30 mins)
      7,748

    Betty Siebert
    Newest Member
    Betty Siebert
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      I'd go with a vodka tonic, but that's just me😉
    • Rejoicephd
      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.