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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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      Unfortunately, there is presently no test for NCGS. Celiac disease must first be ruled out. NCGS is thought to be much more common than celiac disease. We know that celiac disease is an autoimmune disorder but the mechanism of NCGS is less clear. Both call for an elimination of gluten from the diet.
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      Welcome to the celiac.com community, @Seabeemee! The fact that the genetic testing shows you do not have either of the two genes associated with the potential to develop celiac disease (HlA DQ2 and HLA DQ8) pretty much ensures that you do not have celiac disease and the biopsy of the small bowel showing "normal villous architecture" confirms this. But you could have NCGS (Non Celiac Gluten Sensitivity) which would not damage the villous architecture. You could also have SIBO (Small Intestine Bacterial Overgrowth) or H. Pylori infection. Both of these conditions would thrive on carbs and you do say you feel better when you don't eat a lot of carbs. And with your resection of the small bowel, that could be causing it's own problems like you describe. When was that surgery done? You have had over 1 foot of your small bowel removed by that surgery in 2022 so that would certainly challenge digestion and nutrient absorption.  Edited
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