TTG-IGG

[GUY1]

Hello All!To begin with I would like to start by thanking this community for all the information and support.

I ve read  many times in this forum  that a TTG-IGG positive test alone is enough to diagnose celiac.even though doctors and other websites say differently.

A few months ago while I was eating gluten   I had the blood work done and all was clear except the TTG-IGG which came back 9u/ml.(ranges:0-5=negative, 6-9 weak positive, >9 positive).

All other bloods came back within normal range including total IGA.

I did the genetic test and it came back positive for only DQA1 *05 which is half of the DQ2 heterodimer.

As my report suggests my risk of having celiac is 1:1842 and further indicates "extremely low".

 

I took this report to a few GI doctors and all gave me the same answer: I don't have Celiac.This is the reason I am posting this because I am confused.

what is your opinion on this and has anybody been diagnosed solely on a TTG-IGG positive result? 
 

thanks for the input and the help!!!🙂

[trents]

I think you are confusing tTG-IGG with tTG-IGA. A very high tTG-IGA (10x normal or greater) has been used in the UK and other European countries as justification alone for declaring a celiac diagnosis and forgoing an endoscopy/biopsy. The tTG-IGA is the most popular test run by doctors because it combines good specificity with good sensitivity. The tTG-IGG is a secondary test often run when total serum IGA is low. Low total serum IGA can produce false negatives in the tTG-IGA. If you are certain that gluten causes you problems then you could have NCGS (Non Celiac Gluten Sensitivity) which is 10x more common than celiac disease and for which there is no definitive test yet available.

[Scott Adams]

I agree with @trents. 

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.

Quote

The sensitivity of the tTG-IgG blood test is generally high, ranging from 85% to 98%. This means that the test can accurately detect celiac disease in a significant percentage of people who have the condition.

The specificity of the tTG-IgG blood test is also high, typically around 90% to 98%. This indicates that the test can effectively rule out celiac disease in individuals who do not have the condition.

 

 

[GUY1]

Thanks for the responses!

not confusing Ttg-iga with Ttg-igg.

i am specifically talking about a positive Ttg-igg with normal Ttg-iga and no total Iga deficiency.

this is the quote Scott posted:

“The sensitivity of the tTG-IgG blood test is generally high, ranging from 85% to 98%. This means that the test can accurately detect celiac disease in a significant percentage of people who have the condition.

The specificity of the tTG-IgG blood test is also high, typically around 90% to 98%. This indicates that the test can effectively rule out celiac disease in individuals who do not have the condition.”

 

Plus I ve read many claims of people being celiac while  only Being  positive for ttg-igg without total iga deficiancy.

So I guess the question is:

if all my bloods came back within normal range (including total IGA) And only the TTG-IGG came back high (9 with a range of 0-5negative , 6-9weak positive, >9  positive) and only half of the dq2 gene positive could I have celiac?

 

thanks 🙂

[trents]

Yes. Having only a positive in the tTG-IGG test can still mean celiac disease. But there is a somewhat greater chance it could be something else.

[GUY1]

Thanks for the input!

 

[Scott Adams]

Yes, and I am not sure enough research has been done on genetics for your specific marker being 1:1842 to be accurate--I say this because when I was diagnosed my doctor was sure I didn't have it, because only 1:5000 people have celiac disease--that was the mid 1990's. I've not seen enough research done on the various genetic variants to be able to come up with numbers like 1:1842, so I'm a bit skeptical. In any case, you could still be the 1:1842, especially if you have a positive tTG-IGG test, and perhaps you also have symptoms?

[GUY1]

I have half of the DQ2 gene.And the lab gives the percentage of 1:1842 and refers to it as extremely low chance.

i have some symptoms.That’s why I looked into this in the first place.But there are a lot of heat areas as far as being sure about celiac as I ve learned.Also doctors between them seem to disagree some times.

 

thanks again for the help!

 

[knitty kitty]

@GUY1,

DQA1 *05 is one gene.  Only one gene is needed to develop Celiac Disease.  This gene combined with other Celiac alleles produce more severe Celiac Disease.  

And, besides, you may want to change to a gluten free diet anyway....

HLA-DQA1*05 Associates with Extensive Ulcerative Colitis at Diagnosis: An Observational Study in Children

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8701736/

[trents]

13 minutes ago, knitty kitty said:

@GUY1,

DQA1 *05 is one gene.  Only one gene is needed to develop Celiac Disease.  This gene combined with other Celiac alleles produce more severe Celiac Disease.  

And, besides, you may want to change to a gluten free diet anyway....

HLA-DQA1*05 Associates with Extensive Ulcerative Colitis at Diagnosis: An Observational Study in Children

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8701736/

I think there are some common genetic factors involved in a number of autoimmune bowl diseases and that there is a lot more we need to learn about the crossovers. There is more to consider than just does someone have either the HLDQ2 or HLDQ8 both. How sensitive someone with celiac disease is to trace amounts of gluten is one area that I think is determined by a complex of gene interactions.

[knitty kitty]

Sure, there's more to consider.  

Nutritional deficiencies can affect genes and how their instructions are carried out.  

I read a paper on NIH that studied how thiamine deficiency affects genes.  They found that thiamine deficiency caused thiamine transporters on cell surfaces to shut down, and other dormant HLA genes switch on, genes for autoimmune diseases.

The article source is posted in my blog.  

[cactusflower]

Hello, 

I'm new here, thanks for any help you can provide. I'm piggybacking on this post because my case seems a little similar to Guy1. If I should have a separate post please let me know. 

I've had stomach issues for years and did testing for celiac about 10 years ago and it was all negative (blood and endoscopy). However, I know celiac can develop at anytime. 

My stomach issues recently seem to have gotten worse, so I have visited a new doc and we did a blood panel and endoscopy. My endoscopy showed no signs of celiac. My bloodwork showed everything within normal range (Deamidated Gliadin Peptide IgA/IgG, TTG IgA, IgA Quantitative Serum) except TTG IgG that was an 8 - a "weak positive" according to the chart provided with my results. 

My doctor is telling me I need to go gluten-free, and that he's assuming I have celiac just a "tricky" case. I tried asking if anything else could cause the weak positive and he brushed me off, he seems too busy to invest much time with patients and there aren't other docs in my area with availability for a second opinion. It seems like it's easiest for him to just call it celiac, tell me to go gluten-free, and call it a day. Does anyone here know what other sensitivities could potentially account for the weak positive? Thanks for your help!

[trents]

1 hour ago, cactusflower said:

Hello, 

I'm new here, thanks for any help you can provide. I'm piggybacking on this post because my case seems a little similar to Guy1. If I should have a separate post please let me know. 

I've had stomach issues for years and did testing for celiac about 10 years ago and it was all negative (blood and endoscopy). However, I know celiac can develop at anytime. 

My stomach issues recently seem to have gotten worse, so I have visited a new doc and we did a blood panel and endoscopy. My endoscopy showed no signs of celiac. My bloodwork showed everything within normal range (Deamidated Gliadin Peptide IgA/IgG, TTG IgA, IgA Quantitative Serum) except TTG IgG that was an 8 - a "weak positive" according to the chart provided with my results. 

My doctor is telling me I need to go gluten-free, and that he's assuming I have celiac just a "tricky" case. I tried asking if anything else could cause the weak positive and he brushed me off, he seems too busy to invest much time with patients and there aren't other docs in my area with availability for a second opinion. It seems like it's easiest for him to just call it celiac, tell me to go gluten-free, and call it a day. Does anyone here know what other sensitivities could potentially account for the weak positive? Thanks for your help!

You need to consider NCGS (Non Celiac Gluten Sensitivity) which is 10x more common than celiac disease, shares many of the same symptoms, but for which there is no definitive test yet available. I suspect, however, judging by the significant number of posts like yours we are getting lately, that when tTG-IGA and EMA are negative, combined with a negative biopsy, that it may indicate NCGS. Either way, complete abstinence from gluten is called for and some experts believe that NCGS can transition into celiac disease.

[Wheatwacked]

Hi cactusflower.  Welcome to the forum. It's nice to be new.

Listen to this doctor.  Overall there is a tendency to underdiagnose.  Most doctors don't know any more than you about nutritional disorders.  Lots of money is spent to get us to eat more of it. It is addictive.  Think of your mindset when being told no more wheat vs. no more apples.

You can fiddle about with different treatments, some here have had their gallbladder removed and other invasive procedures only to learn 10 years later that it was Celiac or at best NCGS all along.  Celiac used to be call Infantilism in the early 1900's.  It was not known that gluten was the cause until 1950.  Only that babies either grew out of it or died.  Dr Haas came up with a treatment that took into account that these children had trouble with carbohydrates. THE VALUE OF THE BANANA IN THE TREATMENT OF CELIAC DISEASE.  Now we have a better understanding and a list to ensure gluten free.  Products allowed/disallowed in the Gluten Contamination Elimination Diet

Now we know that not only is Celiac Disease an autoimmune disease caused by gluten, but that its symptoms are not just limited to gastrointestinal symptoms. There are upwards of 200 symptoms mimicing other diseases. Many directly autoimmune, like Dermetitis Herpetiformus, white plaque in the brain similar to epilepsy, and the classic Marsh 3b small intestine villi damage to name just a few more "popular" symptoms.  Others are a result of malnutrition caused by malabsorption syndrome and food avoidances.  What Are the Symptoms of Celiac Disease?

My son was diagnosed as an infant when weaned in 1976.  His doctor suggested my wife and I should also start gluten free.  We did not. That was a mistake and finally at 63 I came out of denial.  By that time I was sick as a dog, and I've spent since 2014 undoing the damage.

 

Edited August 10, 2023 by Wheatwacked

[Russ H]

On 8/9/2023 at 12:24 AM, GUY1 said:

Thanks for the responses!

not confusing Ttg-iga with Ttg-igg.

i am specifically talking about a positive Ttg-igg with normal Ttg-iga and no total Iga deficiency.

this is the quote Scott posted:

“The sensitivity of the tTG-IgG blood test is generally high, ranging from 85% to 98%. This means that the test can accurately detect celiac disease in a significant percentage of people who have the condition.

The specificity of the tTG-IgG blood test is also high, typically around 90% to 98%. This indicates that the test can effectively rule out celiac disease in individuals who do not have the condition.”

 

Plus I ve read many claims of people being celiac while  only Being  positive for ttg-igg without total iga deficiancy.

So I guess the question is:

if all my bloods came back within normal range (including total IGA) And only the TTG-IGG came back high (9 with a range of 0-5negative , 6-9weak positive, >9  positive) and only half of the dq2 gene positive could I have celiac?

 

thanks 🙂

You have isolated raised tTG2-IgG antibodies. This has a low positive predictive value for coeliac disease (about 3%) unless you are IgA deficient (which you are not from your results). If someone had coeliac disease, raised tTG2-IgG would normally be accompanied by raised tTG2-IgA: you don't have this and so are unlikely to have coeliac disease. Rejoice, because coeliac disease is a life-long PITA.

https://europepmc.org/article/med/28437323

[Russ H]

4 hours ago, cactusflower said:

Hello, 

I'm new here, thanks for any help you can provide. I'm piggybacking on this post because my case seems a little similar to Guy1. If I should have a separate post please let me know. 

I've had stomach issues for years and did testing for celiac about 10 years ago and it was all negative (blood and endoscopy). However, I know celiac can develop at anytime. 

My stomach issues recently seem to have gotten worse, so I have visited a new doc and we did a blood panel and endoscopy. My endoscopy showed no signs of celiac. My bloodwork showed everything within normal range (Deamidated Gliadin Peptide IgA/IgG, TTG IgA, IgA Quantitative Serum) except TTG IgG that was an 8 - a "weak positive" according to the chart provided with my results. 

My doctor is telling me I need to go gluten-free, and that he's assuming I have celiac just a "tricky" case. I tried asking if anything else could cause the weak positive and he brushed me off, he seems too busy to invest much time with patients and there aren't other docs in my area with availability for a second opinion. It seems like it's easiest for him to just call it celiac, tell me to go gluten-free, and call it a day. Does anyone here know what other sensitivities could potentially account for the weak positive? Thanks for your help!

You probably don't have coeliac disease. An isolated raised tTG-IgG has very low positive predictive value for coeliac disease (about 3%). You also have a negative endoscopy. As others have said, you may have NCGS. The only way to find out is by going on a strict gluten-free diet for a few weeks and see whether your symptoms improve.

[cactusflower]

1 hour ago, Wheatwacked said:

Hi cactusflower.  Welcome to the forum. It's nice to be new.

Listen to this doctor.  Overall there is a tendency to underdiagnose.  Most doctors don't know any more than you about nutritional disorders.  Lots of money is spent to get us to eat more of it. It is addictive.  Think of your mindset when being told no more wheat vs. no more apples.

You can fiddle about with different treatments, some here have had their gallbladder removed and other invasive procedures only to learn 10 years later that it was Celiac or at best NCGS all along.  Celiac used to be call Infantilism in the early 1900's.  It was not known that gluten was the cause until 1950.  Only that babies either grew out of it or died.  Dr Haas came up with a treatment that took into account that these children had trouble with carbohydrates. THE VALUE OF THE BANANA IN THE TREATMENT OF CELIAC DISEASE.  Now we have a better understanding and a list to ensure gluten free.  Products allowed/disallowed in the Gluten Contamination Elimination Diet

Now we know that not only is Celiac Disease an autoimmune disease caused by gluten, but that its symptoms are not just limited to gastrointestinal symptoms. There are upwards of 200 symptoms mimicing other diseases. Many directly autoimmune, like Dermetitis Herpetiformus, white plaque in the brain similar to epilepsy, and the classic Marsh 3b small intestine villi damage to name just a few more "popular" symptoms.  Others are a result of malnutrition caused by malabsorption syndrome and food avoidances.  What Are the Symptoms of Celiac Disease?

My son was diagnosed as an infant when weaned in 1976.  His doctor suggested my wife and I should also start gluten free.  We did not. That was a mistake and finally at 63 I came out of denial.  By that time I was sick as a dog, and I've spent since 2014 undoing the damage.

 

Hello, 

Thank you for your time and for your consideration. I am sorry to hear this has been an issue for your family for decades, but hope that you're healthy and thriving because you've advocated for your health and taken the right steps to find what works best. 

I am listening to this doctor, I'm taking it very seriously -- I think maybe I made it seem like I'm not but that's not the case, it's the opposite. I understand the gravity of celiac, I take it seriously and think it should not be diagnosed glibly. I understand it is often underdiagnosed, and that is truly unfortunate -- but that doesn't mean this diagnosis is valid just because it's rare. I want to be armed with as much information as possible, because my doctor has offered a dearth of it, and because it seems that this is the easy answer for him. I'd like to know what other possibilities may be out there so that I don't go down a path of thinking I have celiac, possibly for years, and then find out later it was something else I overlooked at this stage because it wasn't the likeliest answer. I'm hoping to know what other things could cause the weak positive value for TTG IgG (8) so that I can explore, consider them, or rule them out.

I understand my search may end with the answer "it's celiac" or, "it's NCGS" as Trents suggested, I just want to know what the other cards in the deck may be. Upthread further in response to the OP, Trents said " Having only a positive in the tTG-IGG test can still mean celiac disease. But there is a somewhat greater chance it could be something else." I'm just hoping to learn more about the something elses. I appreciate your care, concern, and your advice. I will take it to heart. Thank you, and thanks Trents too for his reply, and the OP for starting this thread. 

[cactusflower]

3 minutes ago, Russ H said:

You probably don't have coeliac disease. An isolated raised tTG-IgG has very low positive predictive value for coeliac disease (about 3%). You also have a negative endoscopy. As others have said, you may have NCGS. The only way to find out is by going on a strict gluten-free diet for a few weeks and see whether your symptoms improve.

Thank you! I gave a long-winded reply to your peer a moment ago elsewhere in the thread so that goes more into my feelings, but I really appreciate this information about the low positive predictive value. I'm happy to try a gluten-free diet and see if it works. I just didn't like being told it was definitely celiac, just "tricky" when it felt it wasn't given real consideration by the doctor. 

[GUY1]

As I see the t comes down to a matter of opinion(doctors and patients).I guess going gluten free and monitoring is the best option👍

[trents]

56 minutes ago, GUY1 said:

As I see the t comes down to a matter of opinion(doctors and patients).I guess going gluten free and monitoring is the best option👍

This might help you get off to a good start:

 

[GUY1]

Thanks 👍

[Russ H]

9 hours ago, GUY1 said:

As I see the t comes down to a matter of opinion(doctors and patients).I guess going gluten free and monitoring is the best option👍

I think that is the best thing to do. You may have coeliac disease but it seems unlikely from your test results. More likely is NCGS and the only way to find out is a strict gluten-free diet. From the research I have read, blood serum testing for coeliac disease is scientifically well understood, and it is not a matter of opinion.

[Russ H]

On 8/10/2023 at 11:28 PM, cactusflower said:

Thank you! I gave a long-winded reply to your peer a moment ago elsewhere in the thread so that goes more into my feelings, but I really appreciate this information about the low positive predictive value. I'm happy to try a gluten-free diet and see if it works. I just didn't like being told it was definitely celiac, just "tricky" when it felt it wasn't given real consideration by the doctor. 

Some doctors are not knowledgeable about coeliac disease and testing. It is good that your doctor is taking you seriously and trying to find the cause of your symptoms, and they may indeed be caused by gluten but it is unlikely to be coeliac disease from the results you posted. It is worth trying a strict gluten-free diet and see whether your symptoms improve. Non-coeliac gluten sensitivity (NCGS) is between 1x and 10x as common as coeliac disease depending on the research paper. It is a real and serious condition but does not cause gut damage shown on endoscopies or coeliac blood serum antibodies, so there are no tests for it currently beyond trying a strict gluten-free diet.

[GUY1]

Hello All,

just an update....and a question.

If you scroll up to the original post my initial question was about a TTG IGG positive result with everything else within the normal range.

Update: After 2 1/2 months on a strict gluten free diet(actually went on the AIP diet) I re-tested for the TTG IGG and it came back within normal levels.3.8 u/ml.(ranges:0-5=negative, 6-9 weak positive, >9 positive).

Original test was 9 u/ml.

 

Question: I know that no one can give a definitive answer but does the reduction of antibodies (even if it is ttg igg) mean anything?also if there is a GI that reads this please chime in!:)

Reminding you that my genetic testing came back only one half positive.But also positive for DQ 7.5!

 

 

Thanks again All for your immense help!

[trents]

It would be interesting to see if you stayed on the AIP diet with the exception of adding gluten back in to see what impact it would have on your TTG-IGG.