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

Need To Re-test?

SusanGB

Recommended Posts

SusanGB Newbie
SusanGB
Posted

My son who is 3y 3m was tested when he was one and it was negative. Is there any need to re-test? Could he now be positive even though he wasn't two years ago?

Thanks for your opinions!

Susan

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

Celiac.com Sponsor (A8-M):


lizard00 Enthusiast
lizard00
Posted

Do you have a reason to think he should be retested? If you do, then yes. Tests on children are very inconclusive, so it could very well have been negative for that reason. Children have a tendency to not produce a lot of IgA, which is what many doctors only test for.

Have you tried him gluten-free?

SusanGB Newbie
SusanGB
Posted
  • Author

My aunt has the disease and both my kids have growth issues so I was thinking of getting them tested. My youngest was tested 2 years ago (negative) by his endocrinologist. I didn't know if in kids the results could change with time.

Thanks-

Susan

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

The tests in kids are VERY inconclusive--the false negative rate is just way too high

Really, the best diagnostic tool is to just try a gluten-free diet on them--if you see sudden growth spurts (as well as less stinky poops, fewer tummy aches, disappearance of eczema/reflux, developmental leaps) within the first month, there is your answer.

If you see no changes whatsoever, you can always go back on wheat if you so desire.

And, no, you do NOT need a doctor's permission to do this. THere is NOTHING in wheat that you can't get from other, non-gluten sources. Nobody ever died because they didn't have wheat in their diet. But people HAVE died from having it!

JennyC Enthusiast
JennyC
Posted

I would get him retested, because if your child was one at the time he was too young for the test to be accurate, If you are unsatisfied with the results you could always try him on the gluten free diet no matter what the results are.

Darn210 Enthusiast
Darn210
Posted

My son is small for his age. His sister was diagnosed with Celiac. His results were somewhat inconclusive. He has no GI symptoms (or any other symptoms that we've noticed). During an appointment with the pedGI (who was reluctant to scope . . . and YES, we were too!!!) we decided to do a trial diet to see if we could pick up some growth. We decided on a 6 month time frame. After 6 months, if there is no shift on his growth curve, then he can go back on gluten. Times almost up and we haven't seen anything. The doc thought if we were going to see something that we would probably notice a difference in the second month. It didn't work out for us but at least we answered that question. If you do it, make sure you give yourself a couple of months . . . a couple of weeks isn't enough time.

aikiducky Apprentice
aikiducky
Posted

Here in Holland they recommend that siblings get tested periodically every few years. The reason is that celiac can get triggered at any age. Even if a child tests negative at one point, it doesn't mean that they will never develop celiac.

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

Celiac.com Sponsor (A8-M):


SusanGB Newbie
SusanGB
Posted
  • Author

Thank you all for your insight and advice. I think I will have both kids tested.

Good luck to all-

Susan

Archived

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

Go to topic listing
  • 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):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Draft gluten-free ciders… can they be trusted ?

      By Scott Adams · Posted

      I'd go with a vodka tonic, but that's just me😉
    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      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
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      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
      Inconclusive results

      By Scott Adams · Posted

      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.