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

Daughter With Possible Celiac Disease

Orinda

Recommended Posts

Orinda Rookie
Orinda
Posted

My little girl (recently turned 7) has been suffering from mild-to-moderate stomach pain for months. The first suggestion given to us by her pediatrician was to go lactose free. This we did for several months to no improvement, so a couple of weeks ago I took her back. They then ran a series of blood work on her, including a celiac panel. Everything came back normal except for one thing in her celiac panel -- the tTG Iga. We were referred to a pediatric GI doctor in Kansas City, who I took her to last week. They repeated the tTG IgA blood test.

Today I got a call with the results. They want the value to be below 20 .... hers was 115. The nurse I spoke with said that likely means she does have celiac disease but this doctor wants to do an upper GI scope with a biopsy.

Do you think I can assume she has it based on this blood work? Looking around this looks to be an extremely high result. They said not to change her diet at all as it can affect the biopsy but I'd like to get started learning and researching now because I know so little about celiac disease. I understand it's genetic -- the doctor said that we should all get tested if she turns up positive. I'm also expecting a baby (my fourth child) due December 25th and I'm worried I won't be able to go with her to her scope. My husband will if I can't but I hate not being there for her.

Thanks in advance,

Monica

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

Celiac.com Sponsor (A8-M):


nmlove Contributor
nmlove
Posted

Hi there, my family was just in the same boat as you. My son had very positive blood work but the pediatric GI doc we saw wanted to do the upper endoscopy to confirm. We had no history of celiac disease and there were possibilities other than celiac - a slim chance but still possible. We decided to do it. My son did great. It was really quick (10 minutes max from the time we left him going into the procedure room). He had no effects from it other than being groggy for a couple of hours. Obviously he was positive as I'm still around this board. He's been gluten-free for 2 1/2 months now. The rest of the family was tested. My husband and I were negative but my two year old was positive. The pediatric GI doc agreed to diagnose and treat him without the endoscopy based on the family history. I have a 5 1/2 month old who's not been introduced to gluten. By chance we found a research study through the University of Maryland's celiac research center and decided to enroll her. We're still awaiting the genetic testing.

Good luck! Trust your instincts.

NewGFMom Contributor
NewGFMom
Posted

We didn't biopsy, we were already gluten free by the time we got into see the GI and I flat out refused to start feeding my son gluten when he was already getting better.

But I don't know of anybody who has regretted the decision to biopsy. It's a very quick and safe procedure and it might be good to know the extent of the damage. If my son had been older I would have done it.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,667
    • Most Online (within 30 mins)
      7,748
    bailey1023
    Newest Member
    bailey1023
    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
      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.    
    • Scott Adams
      Medication

      By Scott Adams · Posted

      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
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      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.