Help reading test results

[NessH]

Hi there, I’m new to the forum. Pls can anyone help interpret my blood test results. I had full blood test to work out why I was constantly exhausted. The test results show my anti transglutnase level is 3CU (normal range is 0-30) but these numbers don’t correspond to anything I can find on the internet re low levels. I’ve had IBS my whole life and the blood test showed low iron and B12 and floats levels so I’ve started taking supplements but a friend suggested it could be celiac disease. Any help greatly appreciated as loved with stomach issues my whole life 

thank you! 

 

[NessH]

Just now, NessH said:

Hi there, I’m new to the forum. Pls can anyone help interpret my blood test results. I had full blood test to work out why I was constantly exhausted. The test results show my anti transglutnase level is 3CU (normal range is 0-30) but these numbers don’t correspond to anything I can find on the internet re low levels. I’ve had IBS my whole life and the blood test showed low iron and B12 and floats levels so I’ve started taking supplements but a friend suggested it could be celiac disease. Any help greatly appreciated as loved with stomach issues my whole life 

thank you! 

 

*typo above should read folate levels (not floats levels)

[trents]

Welcome to the forum, NessH!

Your one antibody test does not support a diagnosis of celiac disease but your symptoms are consistent with celiac disease. Were there any other antibody tests run specifically for celiac disease? Though you don't say, I assume the one test was the anti transglutaminase IGA as it is the most common single test run by physicians. But there are a number of other antibody tests that can be run when diagnosing celiac disease. Three things: 1. If your total IGA is low, that can create false negatives in the IGA tests, 2. If you are anemic or a diabetic, that can cause false negatives 3. If you have already started a gluten free diet, that can cause false negatives.

Where do you live? Does your healthcare system allow you to request more extensive antibody testing?

Edited September 26, 2023 by trents

[Scott Adams]

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. As @trents mentioned, 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.

 

 

[NessH]

2 hours ago, trents said:

Welcome to the forum, NessH!

Your one antibody test does not support a diagnosis of celiac disease but your symptoms are consistent with celiac disease. Were there any other antibody tests run specifically for celiac disease? Though you don't say, I assume the one test was the anti transglutaminase IGA as it is the most common single test run by physicians. But there are a number of other antibody tests that can be run when diagnosing celiac disease. Three things: 1. If your total IGA is low, that can create false negatives in the IGA tests, 2. If you are anemic or a diabetic, that can cause false negatives 3. If you have already started a gluten free diet, that can cause false negatives.

Where do you live? Does your healthcare system allow you to request more extensive antibody testing?

Thank you so much for your helpful reply. I live in the UK so we I can request more tests but not guaranteed they will do them. I could pay privately which I am happy to do if I know what I’m asking for. thank you! 
 

[NessH]

2 hours ago, trents said:

Welcome to the forum, NessH!

Your one antibody test does not support a diagnosis of celiac disease but your symptoms are consistent with celiac disease. Were there any other antibody tests run specifically for celiac disease? Though you don't say, I assume the one test was the anti transglutaminase IGA as it is the most common single test run by physicians. But there are a number of other antibody tests that can be run when diagnosing celiac disease. Three things: 1. If your total IGA is low, that can create false negatives in the IGA tests, 2. If you are anemic or a diabetic, that can cause false negatives 3. If you have already started a gluten free diet, that can cause false negatives.

Where do you live? Does your healthcare system allow you to request more extensive antibody testing?

1 minute ago, NessH said:

Thank you so much for your helpful reply. I live in the UK so we I can request more tests but not guaranteed they will do them. I could pay privately which I am happy to do if I know what I’m asking for. thank you! 
 

I’m not sure what the test was it was a blood test and the results are for “anti transglutnase”. That was just in a general blood test along with iron levels , blood count, and many other things

23 minutes ago, Scott Adams said:

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. As @trents mentioned, 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.

 

 

Brilliant thank you. This is also really helpful. I’ll take a look at the article. 

[trents]

10 minutes ago, NessH said:

Thank you so much for your helpful reply. I live in the UK so we I can request more tests but not guaranteed they will do them. I could pay privately which I am happy to do if I know what I’m asking for. thank you! 
 

Ask for the following tests:

• Total IGA
• tTG-IGA 
• DGP-IGA
• DGP-IGG

There is also a celiac disease test known as EMA which is good to have but more expensive and less sensitive than the others. But it is very specific for celiac disease. If you have the luxury of ordering it I would but at least go for the others I listed.

 

There are also third party commercial celiac test kits available which are more thorough than what your physician has already ordered but may not include all the tests I have listed. I'm not sure which third party home celiac test kits are available to you in the UK. These home test kits use a cheek swab sample I believe.

You might also consider genetic testing for celiac disease potential which will not establish you have celiac disease but will essentially rule it out if you don't have any of the genes.

Edited September 26, 2023 by trents

[NessH]

35 minutes ago, trents said:

Ask for the following tests:

• Total IGA
• tTG-IGA 
• DGP-IGA
• DGP-IGG

There is also a celiac disease test known as EMA which is good to have but more expensive and less sensitive than the others. But it is very specific for celiac disease. If you have the luxury of ordering it I would but at least go for the others I listed.

 

There are also third party commercial celiac test kits available which are more thorough than what your physician has already ordered but may not include all the tests I have listed. I'm not sure which third party home celiac test kits are available to you in the UK. These home test kits use a cheek swab sample I believe.

You might also consider genetic testing for celiac disease potential which will not establish you have celiac disease but will essentially rule it out if you don't have any of the genes.

Wow! Thank you so much. You’re very kind. 

[trents]

It's important to not begin a gluten free diet until all testing is complete. Your physician may refer you to a GI specialist who may want to do an endoscopy with biopsy of the small bowel lining, especially if additional antibody testing throws positives.

[Wheatwacked]

Try to get your folate from food not folic acid. 

Folic Acid and Risk of Prostate Cancer: Results From a Randomized Clinical Trial  ?Folic acid supplementation was associated with increased risk of prostate cancer. By contrast, baseline dietary folate was inversely associated with prostate cancer risk."

Increasing Choline takes some of the load off of folate, they share breaking down homocysteine and preventing neural tube defects.   Choline is needed to digest fat, it is the dominent salt in bile among other things, brain fog.

 Could we be overlooking a potential choline crisis in the United Kingdom? 

About 40% of adults in the US, Canada, UK, Ireland are low or deficient in vitamin D.  In Celiacs, though no one has published results on exact numbers, vitamin D deficiency is almost ubiquitous.  

Possible Role of Vitamin D in Celiac Disease Onset

 

[NessH]

4 hours ago, Wheatwacked said:

Try to get your folate from food not folic acid. 

Folic Acid and Risk of Prostate Cancer: Results From a Randomized Clinical Trial  ?Folic acid supplementation was associated with increased risk of prostate cancer. By contrast, baseline dietary folate was inversely associated with prostate cancer risk."

Increasing Choline takes some of the load off of folate, they share breaking down homocysteine and preventing neural tube defects.   Choline is needed to digest fat, it is the dominent salt in bile among other things, brain fog.

 Could we be overlooking a potential choline crisis in the United Kingdom? 

About 40% of adults in the US, Canada, UK, Ireland are low or deficient in vitamin D.  In Celiacs, though no one has published results on exact numbers, vitamin D deficiency is almost ubiquitous.  

Possible Role of Vitamin D in Celiac Disease Onset

 

Thanks. I am using Biocare Nutrisorb methyl B Complex (liquid supplement) which contains B, B, Niacin, B6, Methylfolate (Calcium L-methylfolste) Methyl B1, Panthothenic Acid. 
 

Is that ok for the folate supplement issues you raise?