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 "maximize" Testing My Kids

tri-gal

Recommended Posts

tri-gal Rookie
tri-gal
Posted

My situation is this: I am convinced I have celiac but undiagnosed as I went off gluten to help my nursing baby. I am concerned about my kids, but as I have no diagnosis, I have little "leverage" for testing.

My 1 year old is still off gluten, as am I, due to his gluten and other protein enteropathy symptoms (plus FPIES to several foods, for those interested in / familiar with FPIES).

(Unfortunately, I was not tested ahead of my gluten free status.)

My 5 year old is displaying potential symptoms, and I'd like to get her assessed but don't want to mess up what might be one chance ot do so.

Her symptoms follow this list of q's:

1) Do you think her symptoms warrant testing or would it be more severe if she had celiac disease?

2) when is the appropriate time and what is the appropriate path so we don't loose a precious opportunity for an accurate diagnosis?

3) if we blood test too early, the door may be shut on us permanently thereafter, so advice on whether and when to pursue:

blood panel now?

or pay for enterolab stool tests to see if we would likely have anything show up first, combined with gene test

 

Here are her symptoms:

vague but on and off bloating and tummy issues, seems to be gluten related but hard to measure

alternating days of fatty, pale stools, floating and bitty after a higher fat meal

stools that pack a punch

some days of constipation or feeling she needs to go, but does not

dental - enamel grooves and a couple of misshapen baby teeth

mood swings and frustration fits seem more related to gluten days, but hard to prove

she seemed never to grow vertically but always in the "normal" range on the charts... until the past year when our family reduced her gluten (because I was 100% gluten free)

 

Many thanks.

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

Celiac.com Sponsor (A8-M):


cmc811 Apprentice
cmc811
Posted

I'm in a similar situation except I did get tested and my results are being called inconclusive. Low positive ttg and Marsh I biospy isn't convincing enough apparently......grrr!

 

Anyway, my 5 year old is also having symptoms which is what really prompted me to get tested because I was getting resistance from the pediatrician when it came to testing him. Based on my positive blood test she ordered a total iga and ttg-iga for him. Both normal and so she has decided that she has ruled it out. Obviously, I don't think the 1 test is effective enough for a rule-out. So what I ended up doing is going around her. I have him scheduled with a pediatric GI in a week and I'm anxiously awaiting hearing his theory on my results and how that may change what testing needs to be on my son.

 

Moral of the story: find an experienced pedi GI and take her there. Explain everything and ask for a full panel. Make sure you let them know that you want to test while she's consuming gluten and since the house is gluten free you don't want to lose the window of opportunity. If they don't take you seriously call a different doctor. You have a valid point so continue to persue it!

tri-gal Rookie
tri-gal
Posted
  • Author

Thanks so much for your feedback. Good for you for finding a GI specialist too. I'm motivated and inspired, so thanks!

When I was sorting through the maze of allergies and gluten issues last year, I decided to get a panel, by which point I had been gluten free for a couple of months. My doc initially said it would not matter....

Anyway, the results were deemed negative: I had a deamidated gliadin  IgG of 7.2 but lab says 10 and over is positive. Does this 7.2 result  suggest anything at all would people say? Meanwhile, my deamidated gliading IgA was 1.4 and translutaminase of 1.3 for IgA AB. My total IgA was 1.33, so I have no idea if this means I am on the low side of IgA generally speaking or how the other numbers relate to the total. I was left with no where to go for myself but "play around" with gluten, which I can't do whatsoever. I seem to have developed v active gluten reactions post partum with only  a few months of my gut deteriorating rapidly, so my theory is my gut started to heal relatively rapidly and no proof was left in my blood.

This entire chapter has been eating away at me, so to speak, with mounting anxiety of my children's health and no "diagnosis" to validate my concerns. Yet, I don't want my daughter to go entirely gluten free until I've figured it out.

GottaSki Mentor
GottaSki
Posted

While your DGP-IgG was not positive, I would run the Complete Celiac Antibody panel again to compare results -- while it will not be proof for official diagnosis -- if it has come down substantially it is yet another piece of the puzzle.  If it has gone up it will be an indication that gluten is sneaking in your diet and you need to review your diet, meds and supplements.

 

Since you remain in diagnostic limbo - yet your history, symptoms and reaction to gluten indicate NCGS (non-celiac gluten sensitivity) or celiac disease I would have the complete panel run annually -- I strongly believe more data is better :)

 

It's that or another challenge -- which you may have trouble physically completing.

cmc811 Apprentice
cmc811
Posted

This entire chapter has been eating away at me, so to speak, with mounting anxiety of my children's health and no "diagnosis" to validate my concerns. Yet, I don't want my daughter to go entirely gluten free until I've figured it out.

I am in this exact situation. I have no problem going gluten free for myself because I think my test results provide enough of a case for it. It's my kids, mainly my symptomatic 5 year old, that severely stresses me out! The pediatrician hasn't thought it was Celiac from the beginning when I brought it up so the testing process has been difficult to get initiated for him. Now with a negative ttg, she has completely written off the possibility of Celiac. I specifically asked for DGP and basically was denied. She wouldn't order it, so I'm no help with that test.

 

Do you have the ranges for your results? All labs are a little different, so generally when you post a result you should also post the range the lab uses.

 

I'm sorry you're going through this, but trust me, you're not alone! I think many of us are in, or have gone through, diagnosis hell.

tri-gal Rookie
tri-gal
Posted
  • Author

Thank you so much for your helpful response and suggestions. Very much appreciated and sound advice!

Best to you.

Archived

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

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


  • Member Statistics

    • Total Members
      131,669
    • Most Online (within 30 mins)
      7,748
    CDR40
    Newest Member
    CDR40
    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
      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.    
    • 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
×
×
  • 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.