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My celiac screening came back negative, but I still have a few questions

Catv25
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Catv25 Rookie
Catv25
Posted

I recently had the Tissue transglutaminase IGA test done, and the results came back negative. However the test says that I have an IGA deficiency which can cause a false negative, and from what i'm reading people with low iga levels are at higher risk of autoimmune diseases including celiac. I know when eating wheat products I become sick, weak, tremors, hair falls out, iron levels drop, etc. I suspected it may be celiac for a while, but it could also be something else. I have been eating gluten before the test was done, however there were several days I went without eating any gluten containing products. I read today the recommended amount is 2 slices of whole wheat bread a day for 6-8 weeks. 

 Many people are telling me I don't have celiac since I don't 'look like a typical celiac patient'. I'm open to the possibility that it could be something else entirely. I don't want to be fixated on a diagnosis, I really just want to rule out celiac entirely, since it's associated with lower life spans and a range of illnesses. What should I do? Wait 2 months of eating bread daily then get re-tested? I hate having to restart the diet and making myself sick all over again. Or drop the possibility of it being celiac entirely. There's also the other issue of my doctor telling me that the blood test isn't accurate and the only way to tell is with a biopsy. I don't want to get the biopsy if unnecessary, especially now during covid. 

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cyclinglady Grand Master
cyclinglady
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How IgA deficient are you?  For what I know, (a crazy lady on the internet) your immunoglobulin A ( IgA ) result needs to be close to zero and not just below range for the TTG IgA test not to work.  You could ask for the complete celiac panel.  I test positive to only the DGP IgA, had patches of severe damage via biopsies and was only low on ferritin — no GI symptoms.  You should know that some celiacs are seronegative (usually because they are IgA deficient).  If it has not been that long that you have been gluten free (like a week or two), go back on gluten for a week or two and get retested.  But this is a conversation you should really be having with a GI.  Something is wrong.  You should not be low on iron.  

Catv25 Rookie
Catv25
Posted
  • Author
45 minutes ago, cyclinglady said:

How IgA deficient are you?  For what I know, (a crazy lady on the internet) your immunoglobulin A ( IgA ) result needs to be close to zero and not just below range for the TTG IgA test not to work.  You could ask for the complete celiac panel.  I test positive to only the DGP IgA, had patches of severe damage via biopsies and was only low on ferritin — no GI symptoms.  You should know that some celiacs are seronegative (usually because they are IgA deficient).  If it has not been that long that you have been gluten free (like a week or two), go back on gluten for a week or two and get retested.  But this is a conversation you should really be having with a GI.  Something is wrong.  You should not be low on iron.  

 Hi, thanks for the reply. My IgA levels were lower than 0.5 u/ml. I was strongly considering getting retested just to be sure. But is there any point in getting retested if I'm IgA deficient? Won't the tests show a false negative regardless? Also worth mentioning i've been taking iron supplements daily for the past 2 1/2 years with no changes to my levels, I've been retested several times. 

cyclinglady Grand Master
cyclinglady
Posted

Then the IgG tests are normally ordered if you are IgA deficient. 

BergieF Explorer
BergieF
Posted

3 of my children and myself were all negative on the celiac panel bloodwork.  You could always have the genetic test and biopsy.  We had ours done through Prometheus.  The link is listed below.  

 

https://www.prometheusbiosciences.com/celiac-genetics/

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