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 To Discuss It With Doctor


BlessedMommy

Recommended Posts

BlessedMommy Rising Star

My 2 year old daughter is on a regular diet (gluten containing, though not gluten heavy since my household gluten-free) and her check up is coming up soon. Should I mention to the doctor about our family history of problems and ask him if he would be wiling to run a celiac blood panel if she starts showing symptoms?

 

Or should I not bother discussing it with him until and unless the need arises?


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

I had my 13 year old daughter tested and she showed no symptoms. Neither did I -- just anemia which was blamed on a genetic anemia and peri menopause, but I had celiac disease. I did wait a year though for insurance reasons before testing her and her results were negative. If your baby is doing well and thriving you might want to wait. It seems like it is harder to get good tests results from a small child per prior posters.

w8in4dave Community Regular

I'd def talk to him! even if he doesn't do anything! Talk to him! He will have it in the records you talked to him about it. If she starts to have symptoms then it's all recorded.

BlessedMommy Rising Star

Why is it harder to get better results when testing a smaller child?

GottaSki Mentor

Why is it harder to get better results when testing a smaller child?

 

Often there has not been enough time for the antibodies to reach a positive level.

 

...and the endoscopy can be negative - again to early levels of damage or spotty damage.

 

That is why...the removal of gluten is so very important if tests are negative.  My kids were teens with negative antibody panels when I was diagnosed -- my own antibodies were all weak positive with completely destroyed villi.  The variance involved with both antibodies and biopsy is very frustrating and still being researched with regard to Celiac and NCGS.

cyclinglady Grand Master

Here is a link to the University of Chicago's website explaining testing a very young child.

Open Original Shared Link

nvsmom Community Regular

My kids tested negative too although gluten is a problem for most of them. I am guessing they have celiac disease but the test did not show it, so they are now gluten-free anyways... Just in case.


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



Celiac.com Sponsor (A8-M):



Cara in Boston Enthusiast

Our doctor tests my non-celiac son (age 11) every two years . . . sooner if symptoms develop.  Many with Celiac have no symptoms at all so you can't really count on that happening.  All first degree relatives on someone diagnosed with celiac should be tested on a regular basis.  I don't know if it is different for toddlers.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,678
    • Most Online (within 30 mins)
      7,748

    Kristina S
    Newest Member
    Kristina S
    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
      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.