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

Should I worry?


mareahf

Recommended Posts

mareahf Apprentice

Since I have celiacs I had my son tested for the he genetic markers and his results came back that he had none of the genetic markers for celiacs. I kept him gluten free for about a year and a half. After the tests I introduced gluten and monitered his behavior, bowel movements and any sign of pain. I never saw anything different. 

The thing that makes me worry is he is so skinny and has only gained 2 pounds in one year! He is 3 1/2 now and weighs 27 lbs and about 32 inches tall. The pediatrician never has mentioned his weight to be a problem but I just see all the other kids his age taller and heavier than him. He is not as physically active as other kids his age too. 

His father and I are both skinney small people too so I didn't start to worry until a few months ago. And we probably have a better daily diet than most people since I do all the cooking. 

Am I just a worried first time mother or should I get blood testing? The only reason I haven't done it yet is because the insurance doesn't cover it and the labs here in Puerto Rico don't have the latest full panel blood testing available. 


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

Check this growth chart from the CDC (US gov).  

Open Original Shared Link

Your child should be on at least one of the measurement charts: height, weight, head circumference (check with your MD).  My kid was always at the 5  to 10% mark for weight.  50%. For height.  She was little because she came from a little  family.   She eats well and has tested negative for celiac disease.  She gained more weight after age five.  Now, in high school, she is just under 50%.  She looks normal, but compare to the rest of the student population, she is small.  Kids today are much bigger, probably due to the American diet!  

If your PED is happy, do not worry!  

StephanieL Enthusiast

Growth charts aren't really all that accurate and of those that are- the ones from the WHO are much more accurate and up to date.  I would check those if anything.

 

Also, it's not the chart that you should look at (as it's a VERY loose guide).  What YOUR KID'S curve is is what's important.  Are they trending upward along the same lines?  You have said you and DH are small people.  I wouldn't expect your kiddo to be 6'10 and 350!  

If you are concerned and your kiddo is getting an adequate gluten to test then maybe that will alleviate your fears if you still have worries.

Darren Apprentice

I don't think you have anything to worry about if no genetic  markers. Maybe you eat so healthy he needs to eat a bit less healthy since kids need some fat as they burn calories like crazy. Losen up the diet a bit. You can also order at home celiac testing kits that I are far cheaper and can give you reliable results such as celiasure by gluten pro. This is from Canada but I know the US has versions of it. Try that to put your mind at ease. 

mommida Enthusiast

I would not fully trust the genetic testing.

If you start noticing symptoms, you should start seeking answers with a (pediatrician) gastroenterologist.

ravenwoodglass Mentor

Where is he on the charts in relation to where he was at birth?  If he, for example, started out in the 60th percentile and is now in the 10th that would be a concern. 

It isn't going to hurt to have him screened for celiac with a blood test if he starts to show symptoms or has lost a good bit of ground on the growth chart percentiles. That is going to be more reliable than genetic testing. While rare there are diagnosed celiacs without one of the two main genes and more celiac associated genes are being discovered.

 

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,675
    • Most Online (within 30 mins)
      7,748

    Kimmber
    Newest Member
    Kimmber
    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.