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4 year old with a negative Celiac test

Deborah123
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Deborah123 Newbie
Deborah123
Posted

My 4 year old was tested for celiac last summer (blood test) & it came back normal / negative.  Can the blood test be wrong?  I was surprised that he was negative - there are many things going on which would indicate celiac. 

- He is very tired & irritable 

- He is quite small for his age

- He has enamel hypoplasia

He had amino acid testing (bloodwork), which showed Low cystine & low carnitine.  Not sure if thats anything significant. 

The Dr who reviewed his bloodwork said hes fine, but a good friend is pushing me to look further. 

 

 

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trents Grand Master
trents
Posted (edited)

Welcome to the forum, @Deborah123!

Can you be more specific about which blood test for celiac disease was done? Do you have a record of the testing that you can access? There are several that should be ordered by many physicians will only order the tTG-IGA which may not be a good choice for a child so young because their immune systems are immature.

Celiac disease could certainly explain the symptoms you describe but there are other possible causes as well.

At any rate, I would ask a physician to order these blood antibody tests designed specifically for diagnosing celiac disease: Total IGA, tTG-IGA, DGP-IGA and DGP-IGG. This would constitute a more complete celiac blood panel. Your son would need to be eating normal amounts of gluten for weeks ahead of the blood draw in order for the testing to be valid.

Celiac disease causes inflammation to the villous lining of the small bowel which is the section of the intestinal track where all our nutrition is absorbed. Over time this damages the lining and impairs its ability to absorb nutrients.

Edited by trents
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Deborah123 Newbie
Deborah123
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Posted

We did these: 

Antigliadin Abs, IgA

Antigliadin Abs, IgG

tTg IgA

Endomysial Antibody IgA

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trents Grand Master
trents
Posted

Looks like what was not done that should have been done was Total IGA. If total IGA is low, it can drive other IGA scores down toward the negative range.

Was he avoiding wheat-based foods by any chance when the blood draw was taken?

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Deborah123 Newbie
Deborah123
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Posted

No he was not avoiding wheat based foods 

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      It sounds like celiac

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      Thank you. I just get tired of my PCP acting like I’m an idiot. My GI feels I have it, but cannot officially give me the diagnosis without an endoscopy. So, I’m officially gluten sensitive, without the endoscopy.
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