False Positive Celiac Panel?

[eternamariposa]

I am thinking of getting myself retested (originally negative for me) and testing my son for the first time for Celiac disease as so many of our symptoms really line up with the checklists that I have found. What are my chances of getting false positives? I really don't want to make some huge lifestyle change if it isn't necessary, you know?

[mamafish9]

Are you still eating gluten? What tests does the panel include?

The risks are relatively low, in the sense that if it says positive, you should get a confirmation of that when you remove gluten and your symptoms improve.

[eternamariposa]

I am still eating gluten and so is my little guy. I had a blood test done through a GI doc a couple of years ago after struggling with yeast/leaky gut symptoms for quite some time and finding the celiac info. It only tested for elevated IgA levels if I am not mistaken. I am really on the fence about the whole Celiac thing for us. We seem to be doing a lot better since I started making our bread at home, with organic white flour rather than whole grain flours that we don't seem to readily digest. Any flare ups we experience have been difficult for me to trace back to the specific trigger-outside of dairy.

But in my family history I have a father who suffered from unexplained arthritis as a teenager and on through his life and a few years back almost died from a case of diverticulitus-perfereted intestine. (sorry that i spell so horribly) And my son has dental enamel erosion that earned him major dental work as a toddler, he has always been skinny, was super fussy/moody as a baby, thrush all through nursing, green poop, gurgly belly, febrile seizures, low appetite, and IBS like symptoms as well. I feel like those things point pretty strongly toward a likelihood of Celiac, but as another poster mentioned, at this point of our struggle to figure things out my husband seems to be dragging his feet on this one and I really don't want him to feel as though this diagnosis came because of me, because I pushed for it when things were "fine".

[kjbrown92]

This: "And my son has dental enamel erosion that earned him major dental work as a toddler, he has always been skinny, was super fussy/moody as a baby, thrush all through nursing, green poop, gurgly belly, febrile seizures, low appetite, and IBS like symptoms as well" doesn't equal "fine" for me, but everyone is different. But know that even if you/he aren't celiac, you/he still could be gluten intolerant (many people are).

[mamafish9]

You want a panel that at least looks at tTg, and then also gluten intolerance iGg (which can produce just as many symptoms as celiac).

[flightgoddess]

Definately retest. And get TTg and IgG for sure, because some people are IgA deficient, and that test will always be negative. So there is another test for that I think.

And for many people, it can take years to get a positive test, because celiac is a cumulative disease, the more damage you have, the more likely you will have a positive test. That is why so many people 'self diagnose' gluten intolerance, because they react well and feel better on a GF diet but their blood work never measured up.

[jocelyndale]

Anecdotally, it seems false negatives are far, far more common than false positives.