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

Can You Get A False Positive For Celiac (Ttg)?


chisket

Recommended Posts

chisket Newbie

Hi there,

Thanks to all of you who have been so generous with your responses to my previous posts. I initally logged on because my 11 year old was tested for celiac...the tTg reference range was >19.9 and she tested 73...then confirmed with a scope/biopsy.

My husband, older daughter and I had a celiac panel taken and my husband and I tested negative. My older daughter, 12, tested low positive, tTg 21.

My primary care doc said she had celiac based on a sibling with it and a low positive, then called back to say he spoke to the ped. gastro doc and it was suggested my daughter take a 30 day gluten challenge. If the test results were the same or higher, then he would do a scope to confirm celiac.

Well, just got the bloodwork back and she came in at 7.2! This blew me away because I thought I read here that you can get get false negatives but rarely do you get a false positive. Does anyone have any advice as to next steps? My major concern is that my daughter is 12 and on the cusp of puberty...she's rather short in stature. I'm afraid if I wait too long to figure this out, she'll find out she's celiac too late and won't be able to catch up in growth.

My instinct is to put her on a six month gluten free diet and see what happens, but wondered if anyone out there has any insights as to the inconsistent bloodtests and/or next steps?

Many thanks again for all of your help. You guys rock.

Mary


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



Celiac.com Sponsor (A8-M):



Roda Rising Star

First off did she have the test ran at the same lab? Different labs can have different reference ranges. For example: my youngest son tested low positive(16) also on his ttg in Nov. 2010. The reference range for that lab was greater than 15 positive. The lab where I had mine done has a reference range of greater than 19 positive. I put my son (he is 6.5) on a gluten free diet and did not put him through a scope. I did a gluten challenge 4.5 months later with bad results. I know he has celiac even though his number was low positive and because I am diagnosed and his reaction to the gluten challenge. The number really doesn't correlate well with symptoms. He was tested two years prior to this also after I was diagnosed and his value was 2, so indeed he had an increase. We are dealing now with dental issues from his untreated celiac with his permanant teeth.

My oldest son on the other hand (he is 10.5) and has tested negative three times on the blood work. He does have symptoms that warrent further testing. He is short in stature, has constipation/bloating issues and stomach pains. He goes tomorrow for a GI consult. I'm hoping to get him scoped based on his symptoms my youngest son and I having celiac and his allergist's recommendation. Of course he could be gluten intolerent and never show on blood work or one of the few who have negative blood work and positive biopsy. I want to do the scope since he is symptomatic and negative blood work. Regardless of the biopsy results, or if doctor won't scope him, I will trial him gluten free and challenge him down the road. Of course if the biopsy is positive then gluten free for good.

T.H. Community Regular

Was your child gluten free and THEN went on a 30 day challenge? If that's the case, the 30 day challenge may not have been long enough. A number of people here have had to consume gluten for 6-12 weeks before they had enough damage to test positive for the disease. 30 days really isn't enough for a good challenge, IF your child has been gluten-free for a while.

Oh, and the ped gastro sounds fairly ignorant. 1 in 22 people 'with no symptoms' who are 1 degree separated from a celiac (sibling, parent, child) will also have celiac disease. Add in a positive test, no matter how 'low positive,' and it's even less likely your child is NOT celiac.

Also, if your child wasn't gluten-free for very long, I do recall reading here at one point - cannot remember from who - that a celiac.com's member's doctor had a theory about that.

In this doctor's opinion, some celiacs would have lower tests after they were on gluten for a while because their bodies were getting so run down that they couldn't MAKE the proper antibodies.

As I understand it, he came to this conclusion because he would have patients on gluten who would have low readings, or low positives, and then he'd have them go gluten free. When they had healed for a while, he'd do a short gluten challenge and suddenly, their numbers would go through the roof.

So, if this theory is valid - and I don't believe it's every been tested - it might explain the numbers, too.

My instinct is to put her on a six month gluten free diet and see what happens, but wondered if anyone out there has any insights as to the inconsistent bloodtests and/or next steps?

That is pretty much what I'd do, although I'd go for a year. That's what we did with my son. Daughter was positive, son was negative but also short, bloated tummy, etc... On a gluten-free diet (plus eliminating a couple food allergies), their symptoms resolved. At 1 year, we trialed gluten for a week with our son. He reacted. Mildly, but it was very clear, so we've kept him gluten-free ever since. There are 4 diagnosed celiacs in my family now, so I feel comfortable that even if he is not celiac, he's having trouble with gluten and his chances of developing celiac disease are high enough that he should be learning the diet anyway.

Good thing gluten isn't a required nutrient in our diet! :-D

come dance with me Enthusiast

Our doctor told me that it's like a pregnancy test in that a false positive is highly unlikely but a false negative can easily happen for a number of reasons.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,668
    • Most Online (within 30 mins)
      7,748

    CDR40
    Newest Member
    CDR40
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • 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.    
    • Scott Adams
      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
×
×
  • 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.