Recent blood test results check in - TTG- IGA

[thejayland10]

Hello, 

I was diagnosed around age 10 with Celiac via endoscopy. I have been on a gluten-free diet ever since and have been taking my gluten-free diet way more seriously then I used to for the last 5 years. I only eat out at dedicated gluten-free places or make food at home.  
 

I had not had blood work done for celiac since diagnosis and I checked in with a GI doctor as my primary care isn't a specialist. I was very surprised to see my IGA was 415 and my TTG IGA was 16 (Lab said over 15 is positive for antibody). My Endomysial Antibody SCR was negative and all my vitamin levels were normal.  I am meeting with a dietician next week but I am a bit stressed with these results now wondering if I have been somehow wearing gluten without knowing or if something else is going on.   Is it normal for IGA and TTG IGA to fluctuate like this ? 

[trents]

First, the IGA score of 415 probably refers to what we call "Total IGA" rather than a specific IGA test for celiac disease per se. Physicians should always order this test along with other IGA tests to look for IGA deficiency. Total IGA checks for IGA deficiency. If you are IGA deficient, then other IGA tests will be artificially low and false negatives can result. You didn't included a scale along with the raw test score for the total IGA so I can't say for sure but it looks a little on the high side. Can you post back and include the scale for that? Or, was there a qualitative comment that came with that one like "High"? So, the long and short of this one is that it is not a test for celiac disease per se. A high value for total IGA can indicate other health problems, however and you may want to google that.

Your TTG-IGA is barely out of the normal range and likely indicates some hidden gluten contamination in your life. If you eat out, you can expect to get some gluten even when you order the gluten free items from the menu since most eateries don't guard against cross contamination. They cook their gluten free food on the same surfaces and in the same pots and pans as their gluten free food and handle them with the same utensils. It is also possible to be getting some gluten from meds, pills and oral hygiene products. 

But one thing I don't understand. How can you assume your test values are fluctuating when you don't mention that you have any other lab result score to compare the recent ones to? You were 10 when that was done. How long ago was that. If you haven't been tested since then, what do you have for comparison to say there is fluctuation?

This might be helpful:

and this:

 

[thejayland10]

1 hour ago, trents said:

First, the IGA score of 415 probably refers to what we call "Total IGA" rather than a specific IGA test for celiac disease per se. Physicians should always order this test along with other IGA tests to look for IGA deficiency. Total IGA checks for IGA deficiency. If you are IGA deficient, then other IGA tests will be artificially low and false negatives can result. You didn't included a scale along with the raw test score for the total IGA so I can't say for sure but it looks a little on the high side. Can you post back and include the scale for that? Or, was there a qualitative comment that came with that one like "High"? So, the long and short of this one is that it is not a test for celiac disease per se. A high value for total IGA can indicate other health problems, however and you may want to google that.

Your TTG-IGA is barely out of the normal range and likely indicates some hidden gluten contamination in your life. If you eat out, you can expect to get some gluten even when you order the gluten free items from the menu since most eateries don't guard against cross contamination. They cook their gluten free food on the same surfaces and in the same pots and pans as their gluten free food and handle them with the same utensils. It is also possible to be getting some gluten from meds, pills and oral hygiene products. 

But one thing I don't understand. How can you assume your test values are fluctuating when you don't mention that you have any other lab result score to compare the recent ones to? You were 10 when that was done. How long ago was that. If you haven't been tested since then, what do you have for comparison to say there is fluctuation?

This might be helpful:

and this:

 

Thank you for the response and info! You are right, I do not know if they are fluctuating, what I should have said was is this sort of test normal and common for celiacs who are even on a gluten-free diet? 

I was very surprised to see these results as I am very careful and only eat out at dedicated gluten-free places or make food at home with gluten-free products. 

For IGA my lab said 325 was the upper end of the reference range but Google had others saying 400-420.   I am in my mid twenties now so the original diagnosis was some time ago. I wonder if certain things I feel are related to celiac or just normal stress in life now with these elevated numbers 

 

[trents]

Different labs use different reference ranges for celiac-related tests. They concoct the tests a little differently in each place so the ranges are custom. So, I would trust the lab that analyzed the test and not google.'

All celiac diagnostic tests are less than 100% specific. That is to say, there are other medical conditions, some medications, some other health issues and even some non-gluten foods that can cause them to be elevated, at least mildly. And your TTG-IGA score is barely elevated. If you were to get retested next week it might be back in normal range. It is normal to see some fluctuation in most labs and in most physical and biological parameters.

Can you be more specific about "certain things" that you feel. How do you feel different? Are there any specific symptoms that might be tied to a celiac regression?

It would be a good idea to check all pantry items to see if there have been any ingredient changes over time that might have introduced gluten into your diet and to check meds, supplements and oral hygiene products as well. But other than that, I would not stress out about it as long as you aren't experiencing any particular health issues that you can tie to celiac regression.

I certainly would recommend that you get your antibody levels checked more often than every 10 years so that you have concrete data to work with. I would go for every year if your physician would agree to it. It could be included as part of your annual wellness check. 

Yes, your posts are all showing in the thread. No need to duplicate via PMs.

Edited April 8 by trents

[thejayland10]

8 minutes ago, trents said:

Different labs use different reference ranges for celiac-related tests. They concoct the tests a little differently in each place so the ranges are custom. So, I would trust the lab that analyzed the test and not google.'

All celiac diagnostic tests are less than 100% specific. That is to say, there are other medical conditions, some medications, some other health issues and even some non-gluten foods that can cause them to be elevated, at least mildly. And your TTG-IGA score is barely elevated. If you were to get retested next week it might be back in normal range. It is normal to see some fluctuation in most labs and in most physical and biological parameters.

Can you be more specific about "certain things" that you feel. How do you feel different? Are there any specific symptoms that might be tied to a celiac regression?

It would be a good idea to check all pantry items to see if there have been any ingredient changes over time that might have introduced gluten into your diet and to check meds, supplements and oral hygiene products as well. But other than that, I would not stress out about it as long as you aren't experiencing any particular health issues that you can tie to celiac regression.

I certainly would recommend that you get your antibody levels checked more often than every 10 years so that you have concrete data to work with. I would go for every year if your physician would agree to it. It could be included as part of your annual wellness check. 

Yes, your posts are all showing in the thread. No need to duplicate via PMs.

Sometimes I have a bit of stomach, discomfort, anxiety, tiredness, and soreness but nothing that stops by normal day to day activities. I work a ton and am very active so likely it is related to that and not my celiac but unsure with everyone's symptoms and stories I see online. 

I will definitely start doing this every year from now on. Could one crumb of gluten from a month before that blood test caused that spike ? I am trying to really trace back and think 

[trents]

No, one crumb from a month before the blood test would not materially affect the results of the test. I sense you are devoting a lot more "worry energy" to this than it deserves. That will do you more harm than a tick over normal on the TTG-IGA score.

[thejayland10]

59 minutes ago, trents said:

No, one crumb from a month before the blood test would not materially affect the results of the test. I sense you are devoting a lot more "worry energy" to this than it deserves. That will do you more harm than a tick over normal on the TTG-IGA score.

You are right, I just feel I may have not been on top of it and Ive caused damage for years without knowing. Seems like nothing though? 

 

[trents]

You have been doing all the right things to manage your celiac disease since diagnosis so what would you have changed? Perhaps the only negligence was not seeking follow-up testing sooner and more regularly. But even then, what would you have done differently as far as the day to day management of your celiac disease? I assume you realize that when something is labeled "gluten free" that does not mean it contains "0" gluten. According to FDA regulations, it just means it contains no more than 20 ppm of gluten. And "certified gluten free" (GFCO) means the product contains no more than 10 ppm. Even the air we breathe contains some gluten as there has to be at least some wheat/barley/rye dust circulating in the atmosphere. My point is, take reasonable precautions to control what you can control and then live your life. You will eventually die of something probably not related to celiac disease.

[Scott Adams]

For people with celiac disease hidden gluten in their diets is the main cause of elevated Tissue Transglutaminase IgA Antibodies (tTG-IgA), but there are other conditions, including cow's milk/casein intolerance, that can also cause this, and here is an article about the other possible causes:

 

 

[thejayland10]

On 4/8/2025 at 9:40 AM, trents said:

You have been doing all the right things to manage your celiac disease since diagnosis so what would you have changed? Perhaps the only negligence was not seeking follow-up testing sooner and more regularly. But even then, what would you have done differently as far as the day to day management of your celiac disease? I assume you realize that when something is labeled "gluten free" that does not mean it contains "0" gluten. According to FDA regulations, it just means it contains no more than 20 ppm of gluten. And "certified gluten free" (GFCO) means the product contains no more than 10 ppm. Even the air we breathe contains some gluten as there has to be at least some wheat/barley/rye dust circulating in the atmosphere. My point is, take reasonable precautions to control what you can control and then live your life. You will eventually die of something probably not related to celiac disease.

thank you for the insight 

On 4/8/2025 at 1:01 PM, Scott Adams said:

For people with celiac disease hidden gluten in their diets is the main cause of elevated Tissue Transglutaminase IgA Antibodies (tTG-IgA), but there are other conditions, including cow's milk/casein intolerance, that can also cause this, and here is an article about the other possible causes:

 

 

Thank a small elevation can be due to this or is it more likely to be cross contamination ? 

[Scott Adams]

Most likely cross-contamination I believe.