Weak positive blood test and marsh type 1

[Philly224]

I was having some stomach issues about two years ago and had a celiac test done because my sister has it. My blood test was normal and biopsy was marsh type 1. I tried a gluten free diet for about a month but didn't really notice any difference so I went back on gluten and my issues went away for a bit. Other than some random issues I was feeling pretty good overall but was going for some other blood work so figured I'd get the blood test again. It came back as a weak positive (tTG-IgA range for weak positive was 4-10 and mine was a 5) this time so they wanted to do another biopsy, it came back as Marsh type 1 again. They suggested I might have mild celiac which I'm pretty sure isn't even a thing and I should try a gluten free diet for two months and get the blood test again.  Anyone else here have a similar situation? Seems like I may have it but it's frustrating that all the tests are saying maybe and not yes or no one way or the other. 

[Scott Adams]

There is no such thing a "mild celiac disease," and your blood test results and biopsy results indicate that you indeed likely have an issues with gluten. 

It also would make no sense for you to go gluten-free for two months and get the blood test done again--I can predict the results for you--negative. The real question here is how much gluten were you eating before your last blood test? You should have been told to eat 2-6 slices of wheat bread a day for 6-8 weeks before the test, otherwise your results will likely be lower than if you had followed the proper testing protocol. The same is true for the biopsy--how much gluten were you eating daily in the 2 weeks before that 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.

 

 

[Philly224]

2 minutes ago, Scott Adams said:

There is no such thing a "mild celiac disease," and your blood test results and biopsy results indicate that you indeed likely have an issues with gluten. 

It also would make no sense for you to go gluten-free for two months and get the blood test done again--I can predict the results for you--negative. The real question here is how much gluten were you eating before your last blood test? You should have been told to eat 2-6 slices of wheat bread a day for 6-8 weeks before the test, otherwise your results will likely be lower than if you had followed the proper testing protocol. The same is true for the biopsy--how much gluten were you eating daily in the 2 weeks before that 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.

 

 

Thank you so much for the detailed reply! I was just eating my normal diet so wasn't going out of my way to eat gluten. The week before my blood test I actually had a stomach virus so I wasn't eating much of anything so I do wonder if that contributed at all. Before the biopsy I was just eating my normal amount of gluten, I would say two slices of bread per day would likely be about what I was having maybe a tad more. It was mostly white bread and some pasta though. 

I can't figure out if I can edit my post but my total iga level was normal 

[Scott Adams]

From the article regarding the tTG-IgA test:

Quote

The test is estimated to have a sensitivity of approximately 90%, which means that it correctly identifies 90% of people with celiac disease. It also has a high specificity of around 95%, which means that it correctly identifies 95% of people who do not have celiac disease.

So the most likely explanation of your positive tTG-IgA test would be celiac disease. 

[Philly224]

1 minute ago, Scott Adams said:

From the article regarding the tTG-IgA test:

So the most likely explanation of your positive tTG-IgA test would be celiac disease. 

Thank you! Kind of starting to accept that, sucks but id rather switch to a gluten-free diet now than regret it later. I'll probably just listen to this Dr for now and go on a gluten-free diet, I have an appointment in May with a Dr that specializes in celiac so im hoping I will have a better experience there.

[Scott Adams]

This article has some detailed information on how to be 100% gluten-free, so it may be helpful:

 

 

[Philly224]

2 minutes ago, Scott Adams said:

This article has some detailed information on how to be 100% gluten-free, so it may be helpful:

Awesome, thank you! 

[trents]

As Scott said, if you go on a gluten free diet ahead of testing you can expect the test results to be negative. If you remove gluten from your diet, the inflammation in the lining of the small bowel will subside, antibody levels (what the blood tests are checking for) will drop and the mucosal lining will experience healing such that a biopsy will be normal. So, it makes no sense to me to start the gluten free diet now unless your doctor wants to see if the weak positive disappears in response to a gluten free diet.

Your Marsh 1 score indicates little to no damage has been experienced in the lining of the small bowel to this point.

Two slices of bread daily might not be sufficient to produce unequivocal test results. Recently revised "gluten challenge" guidelines are recommending at least 10 g of gluten daily (about the amount found in 4-6 slices of wheat bread) for at least 2 weeks leading up to the day of testing, whether it be the blood antibody testing or the biopsy.

It makes more sense to me for you to increase your gluten intake for several weeks and get retested. It is not likely that doing so for that limited amount of time will produce any serious health consequences but may give you unequivocable test results and more clear direction. If you decide to do this, make sure that in addition to the tTG-IGA test, you request a "total IGA" test order to check for IGA deficiency. If you are IGA deficient, your tTG-IGA score will be artificially low. Those are, at the very minimum, the two tests that should always be ordered when a blood draw is done check for celiac antibodies. There are other tests which can be ordered as well that check for evidence in the IGG immunes response spectrum. Here is an overview: 

 

Edited January 20 by trents

[Philly224]

18 minutes ago, trents said:

As Scott said, if you go on a gluten free diet ahead of testing you can expect the test results to be negative. If you remove gluten from your diet, the inflammation in the lining of the small bowel will subside, antibody levels (what the blood tests are checking for) will drop and the mucosal lining will experience healing such that a biopsy will be normal. So, it makes no sense to me to start the gluten free diet now unless your doctor wants to see if the weak positive disappears in response to a gluten free diet.

Your Marsh 1 score indicates little to no damage has been experienced in the lining of the small bowel to this point.

Two slices of bread daily might not be sufficient to produce unequivocal test results. Recently revised "gluten challenge" guidelines are recommending at least 10 g of gluten daily (about the amount found in 4-6 slices of wheat bread) for at least 2 weeks leading up to the day of testing, whether it be the blood antibody testing or the biopsy.

It makes more sense to me for you to increase your gluten intake for several weeks and get retested. It is not likely that doing so for that limited amount of time will produce any serious health consequences but may give you unequivocable test results and more clear direction. If you decide to do this, make sure that in addition to the tTG-IGA test, you request a "total IGA" test order to check for IGA deficiency. If you are IGA deficient, your tTG-IGA score will be artificially low. Those are, at the very minimum, the two tests that should always be ordered when a blood draw is done check for celiac antibodies. There are other tests which can be ordered as well that check for evidence in the IGG immunes response spectrum. Here is an overview: 

 

Yeah I suggested doing another blood test and they basically said no they don't want to do it until after the diet which makes no sense to me either. Maybe I'll just pay for it myself. 

[trents]

https://www.healthline.com/health/at-home-celiac-test#_noHeaderPrefixedContent

[Philly224]

6 minutes ago, trents said:

https://www.healthline.com/health/at-home-celiac-test#_noHeaderPrefixedContent

Labcorp on demand has the test for 120 bucks which is pretty cool, that's what I did last time so I'll probably do that's again. I've been eating gluten for over a year again, if I increase my intake for two weeks and retest is that long enough? 

[trents]

I would go for four weeks to ensure a valid test, if you can tolerate it, that is.

[trents]

You might find this helpful: 

 

[Philly224]

Thanks again everyone! Twenty mins on here way more helpful than both Dr's combined 😅

[trents]

You are welcome! We frequently get similar comments. Knowledge about celiac disease in the medical community at large is, unfortunately, still significantly lacking. Sometimes docs give what are obviously bum steers or just fail to give any steering at all and leave their patients just hanging out there on a limb. GI docs seem to have better knowledge but typically fail to be helpful when it comes to things like assisting their patients in grasping how to get started on gluten free eating.

The other thing that, to me at least, seems to be coming to the forefront are the "tweener" cases where someone seems to be on the cusp of developing celiac disease but kind of crossing back and forth over that line. Their testing is inconsistent and inconclusive and their symptoms may come and go. We like to think in definite categorical terms but real life isn't always that way.

[knitty kitty]