Likelihood of positive bloods but negative biopsy?

[Eluthx]

Hey, 
I’m very new to the coeliac world after going to my GP feeling extremely tired and experiencing brain fog. He ran the normal bloods, which I had no idea included coeliac screening. If I’m honest I was sure I was anaemic or it was down to having a 2 year old, studying full time and having a bit of a shoddy diet 😂😅

Anyways, to my surprise the tests came back as normal except the below (plus low folate levels of 2.9ug/L)

IGA ANTI-TTG ANTIBODY: 29.2 U/mL

Normal range: Below 15.0

Endomysial antibody IgA level - Weakly Positive

I do have a family history as my grandfather and uncle are both coeliac, however my dad has never been tested. Ive had my endoscopy and biopsy last weekend, but wondered the likelihood of having positive bloods but a negative biopsy? I’m trying to explore my options if that is the case. I’m still experiencing these symptoms and it’s starting to have an impact on studying for my MSc

 

Thank you!

[Scott Adams]

If I understand your test results correctly, it looks like this one is positive: 

IGA ANTI-TTG ANTIBODY: 29.2 U/mL

If the normal range is below 15.0. You are twice the cut off level for a positive test for celiac disease. Were you eating gluten daily before your blood test? 

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.

 

Unfortunately test results for celiac disease are not always definitive, and many errors can be made when doing an endoscopy for celiac disease, and they can happen in many ways, for example not collecting the samples in the right areas, not collecting enough samples, or not interpreting the results properly and giving a Marsh score. 

Many biopsy results can also be borderline, where there may be certain damage that could be associated with celiac disease, but it just doesn't quite reach the level necessary to make a formal diagnosis.

 

 

[Eluthx]

On 2/17/2024 at 11:17 PM, Scott Adams said:

If I understand your test results correctly, it looks like this one is positive: 

IGA ANTI-TTG ANTIBODY: 29.2 U/mL

If the normal range is below 15.0. You are twice the cut off level for a positive test for celiac disease. Were you eating gluten daily before your blood test? 

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.

 

Unfortunately test results for celiac disease are not always definitive, and many errors can be made when doing an endoscopy for celiac disease, and they can happen in many ways, for example not collecting the samples in the right areas, not collecting enough samples, or not interpreting the results properly and giving a Marsh score. 

Many biopsy results can also be borderline, where there may be certain damage that could be associated with celiac disease, but it just doesn't quite reach the level necessary to make a formal diagnosis.

 

 

Thank you for this.

I got my results today and my biopsies came back normal, so not really sure where I go from here 😂 feeling a bit frustrated if I’m honest as I’d half hoped that I would have an answer for how I’ve been feeling

[Scott Adams]

Your high antibody test still points towards non-celiac gluten sensitivity. 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. Some experts believe that it is a precursor to celiac disease.