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

Would You Have Her Tested?


bananapancake09

Recommended Posts

bananapancake09 Newbie

Hi ladies- I'm new here, and thought I'd try to get some feedback on my 9 month old daughter.

Lucy has a lot of funny symptoms:

Slow growth - 16lbz 15oz, 25.5 inches at 9 mo checkup

Dark circles under eyes

Eczema

Very smelly gas

Loose stools

Screaming spells every so often- pain in tummy?

Reflux

Undigested food

Stuffy nose

My FIL is a Celiac and members of his family are being diagnosed recently, so it seems like a good step to take.

I'm going to call her pedi today and discuss it. What labs should I ask for? What should I do in the meantime?


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



Celiac.com Sponsor (A8-M):



happygirl Collaborator

With the symptoms and family history, yes, I would have her tested.

However, testing is not as accurate in younger children. Even if the tests are negative, she could still have it.

The blood tests you want are the FULL Celiac panel. It involves five tests. Make sure that your dr orders them all.

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

for more info on testing and other Celiac info, check out: Open Original Shared Link

A good bit of info: Open Original Shared Link

Q: Why do my family members need to be screened for celiac disease?

When the diagnosis is established in one family member, their first- degree relatives (parents, siblings and children) should have blood tests for celiac disease. This is because at least 10% of family members will have the disease, even if they are asymptomatic. Screening is also recommended for second-degree relatives (grandparents, grandchildren, aunts, uncles and cousins) as they are also at an increased risk for celiac disease. Family members who already have an autoimmune disease are at a greatly increased risk to have celiac disease (25%).

The reasons to diagnose family members prior to the development of symptoms include the prevention autoimmune diseases and malignancy.

(Your husband should also be tested since his father has it).

The main thing to do is to keep her eating gluten. Don't take gluten out of her diet until AFTER all testing is complete. Testing requires gluten to be in the system.

Best of luck, and I hope you find answers regardless of what the issue is!

Ursa Major Collaborator

I agree with happygirl to have her tested. But in addition, even if the tests end up negative, please try the gluten-free diet after testing is completed (and if you still breast feed, you will need to stop eating gluten, because she'll get it through your milk). In children that young the tests are extremely unreliable and the diet trial is the best test.

All of your daughter's symptoms could be caused by celiac disease and are very common for babies with it.

ryebaby0 Enthusiast

Testing this young is extremely unreliable (and have you ever tried blood tests with a baby!? Oy....) so most reputable doctors will either 1. not do it until she's at least 2 and/or 2. advise a gluten-free trial to see how she reacts. So you may want to just start with #2 on your own!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,216
    • Most Online (within 30 mins)
      7,748

    Athenablue
    Newest Member
    Athenablue
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
×
×
  • 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.