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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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  • Posts

    • 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.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
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