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Advice for Drs appointment for 3 year old


HelenL
Go to solution Solved by trents,

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HelenL Newbie

Hello,

I'm looking for advice ahead of a Dr's appointment for my 3 year old daughter.

She has constant exhaustion, which is getting worse, and constipation (though probiotics help). No growth issues, but constantly grumpy due to exhaustion. She was tested one year ago, when she was 2 for Celiac, results below. We have a history of celiac in the family (but not direct, my uncle and my cousin's daughter). She had her iron tested last year as well and her serum ferritin was fine, but she had slightly low red and white blood cell count.

Should I be pushing for a re-test for celiac? She was regularly consuming gluten before last year's test, and still is.

Last year's results:

Tissu transglutaminase IgA lev: < 0.2 u/mL (Normal range:0 to 10.9 (u/mL))

IgA: 0.36 g/L (Normal range: 0.3 to 1.3 (g/L))

Many thanks


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  • Solution
trents Grand Master
(edited)

Ask for a more complete celiac panel that includes more than IGA antibody tests. Young children have immune systems that are immature and they often don't respond the same way to IGA antibody testing as adults do and so it can be valuable to check for IGG antibodies. Ask for:

Total IgA

TTG-IGA

DGP-IGA

DGP-IGG

It is also possible she has NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but for which there are no tests yet. Celiac disease must first be ruled out. Some experts believe NCGS can be a precursor to developing celiac disease. It is 10x mor common than celiac disease and also demands avoiding gluten.

Edited by trents
Scott Adams Grand Master

I agree with @trents, and this article might be helpful. It breaks down each type of test:

 

 

HelenL Newbie

Many thanks to you both, really helpful 

Scott Adams Grand Master

Please let us know how things turn out, and good luck!

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    • 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.
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