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

How Many Times Did Your Kid Test Neg Before Pos?


Fourmonkeysjumping

Recommended Posts

Fourmonkeysjumping Rookie

My oldest had his first test at 18 months and then had three additional negative tests (yearly) before testing positive at 5 1/2.  My daughter tested negative three times before testing positive last week at 4 1/2.  My two littlest have so far tested negative three times, so I guess we are just waiting to see now!

 

Did/does anyone else test yearly?  My oldest had unusual symptoms, so we didn't figure out what was going on quickly.  My daughter, though, had the same symptoms her big brother had, so we just knew and expected her test to be positive.  So far, the younger two have no symptoms, but we keep wondering and waiting.


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

I haven't tested my daughter yet.  Have you read any of the "The Patent Celiac" blogs on this forum?  They are written by Jebby who's a Pediatrician and has four small children.   Here's one about testing:

 

https://www.celiac.com/gluten-free/blog/1038/entry-1849-should-your-kids-be-screened-for-celiac-disease/

 

Read them all!  

Fourmonkeysjumping Rookie

I haven't.  I've never heard of her before.  I read the testing one just now.  My kids had none of those symptoms (they presented rather unusually and with my first, we didn't even realize they were symptoms for months.  My second had the same, so we knew).  My husband is, though, so that's why we do it yearly.

come dance with me Enthusiast

None.  She tested positive straight up but was 7 before I realised what was wrong.  Before that I had people telling me that it was my fault she was sick all the time.  My mum was not very nice about it, telling me that even though I thought the house was clean, it can't be cleaned good enough (I hired a professional cleaner for a $400 bond clean a number of times thinking I sucked at cleaning but she still got sick) so because the focus was always on what I must be doing wrong, it took a while to see that it was something else.

nvsmom Community Regular

My three boys tested negative last year (doctors would only do the tTG IgA) but because I have celiac disease, and two of my boys have some pretty obvious symptoms, we made our house gluten-free anyway. I'm glad I did because they are doing MUCH better now even though they never tested positive.

 

I'm of the opinion that if celiac disease is in the family, and someone has symptoms, then why wait to go gluten-free? The gluten-free diet can't hurt a child and often forces us parents to feed our children better because of the high cost (and sugar content) of gluten-free substitute foods.

 

Just my opinion though.  :)

  • 2 weeks later...
Mayasmum Rookie

My two youngest tested negative, as did I. We had only been eating one slice of bread a day though for 2 weeks, so not sure if that was why, but my 6 year old came back very positive on that. With my youngest two, they also have low IgA, so we were told that a negative Celiacs test could be false because their low IgA could mess the test up. Stool tests have shown that they both have very bad guts, and some of the results with my youngest at 18 months, were indicative of Celiacs. The whole house is gluten-free, it just seems the responsible thing to do.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,667
    • Most Online (within 30 mins)
      7,748

    AubreyMBSMartin
    Newest Member
    AubreyMBSMartin
    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

    • 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
    • Xravith
      Thank you for the advice. I’ve actually never checked for nutritional deficiencies, but for as long as I can remember, I’ve always taken vitamin and mineral supplements — otherwise my symptoms get worse. This week I stopped eating gluten to confirm whether my symptoms are really caused by it. Starting next week, I’ll reintroduce gluten — it’s sad to go back to how I was before — but at least I’ll be able to take the necessary tests properly. I think the diagnostic process will be long, but at least I’m happy that I finally decided to address this doubt I’ve had for years.
×
×
  • 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.