Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Another Reason Why You Would Test Negative On Ttg Iga

Kamma

Recommended Posts

Kamma Explorer
Kamma
Posted

Hey all. I got my diagnostic test back today for TTG IGA which were in the normal range. This is what I expected as I mostly present with neurological problems and according to the research coming out, AGA IGG is a better dignostic marker for that type of celiac presentation and I wasnt tested for it.

But more importantly and what I would like to share with all of you was the response of my neurologist at the findings. I think you'll find it heartwarming. Especially for those who struggle with the symptoms but the blood tests come back negative and you feel like you're fighting an uphill battle to get validated.

When he told me my IGA levels, I said, "So, that means I'm negative cause I'm in the lower end of the range." He explained that no, it doesnt, the ranges are based on a base line of only a 1000 people and who knows how many of those have undiagnosed celiac which skews the ranges. He cited a recent study where it was believed that 1 in 20 people (U.S.) might have some form of celiac but don't know it to be celiac. In a random testing of a 1000 people to establish a base line for TTG IGA, 1 in 20 of those thousand people probably have undiagnosed celiac and their levels get included in the base line.

So take heart everyone. Heres another reason why you might be negative on the TTG IGA serum test.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


researchmomma Contributor
researchmomma
Posted

Hey all. I got my diagnostic test back today for TTG IGA which were in the normal range. This is what I expected as I mostly present with neurological problems and according to the research coming out, AGA IGG is a better dignostic marker for that type of celiac presentation and I wasnt tested for it.

But more importantly and what I would like to share with all of you was the response of my neurologist at the findings. I think you'll find it heartwarming. Especially for those who struggle with the symptoms but the blood tests come back negative and you feel like you're fighting an uphill battle to get validated.

When he told me my IGA levels, I said, "So, that means I'm negative cause I'm in the lower end of the range." He explained that no, it doesnt, the ranges are based on a base line of only a 1000 people and who knows how many of those have undiagnosed celiac which skews the ranges. He cited a recent study where it was believed that 1 in 20 people (U.S.) might have some form of celiac but don't know it to be celiac. In a random testing of a 1000 people to establish a base line for TTG IGA, 1 in 20 of those thousand people probably have undiagnosed celiac and their levels get included in the base line.

So take heart everyone. Heres another reason why you might be negative on the TTG IGA serum test.

I would love to see that study! Can you get a link?

Bubba's Mom Enthusiast
Bubba's Mom
Posted

It seems like you have a very good neurologist? Many don't think of gluten/Celiac as a reason for neurological symptoms?

I'd love to know if he read some research on the blood tests, or if he just figured it out on his own as an answer to why some people test negative?

Interesting stuff!

Kamma Explorer
Kamma
Posted
  • Author

I would love to see that study! Can you get a link?

I would love to see that study too! The best I can find are numerous articles citing, "...some experts believe that up to 1 in 20 people have some type of gluten sensitivty, celic spectrum" and so on. I'll ask my neurogolist the next time I see him.

More specifically, Dr. Bob Anderson/Australia thinks the demographics are skewed as well since men are underrepresented with the a diagnosis of celiac. He believes that men are less likely to seek medical help and put down their tired issues to working too hard, getting older, bad eating habits and so on.

Until I connect up with my neurologist, I'll keep trying to see what I can find.

Kamma Explorer
Kamma
Posted
  • Author

It seems like you have a very good neurologist? Many don't think of gluten/Celiac as a reason for neurological symptoms?

I'd love to know if he read some research on the blood tests, or if he just figured it out on his own as an answer to why some people test negative?

Interesting stuff!

His sister was diagnosed as having celiac after ten years of neurological problems. When he told me that, he then look me straight in the eye and said, "...that doesn't say much for me as a neurologist does it?!". :lol: He has also taken the test and came back as a weak positive. Same score as me, he told me.

He said for him, the desire to know, learn and understand is both a personal issue but also a professional issue in that he needs to understand the neurological aspects of celiac as he could very well be dealing with that with his clients.

In terms of the blood testing, he was told about the skewed results / 1000 people when he had had his own celiac testing done and interpeted by his immunology colleague.

frieze Community Regular
frieze
Posted

this variance, is being noted in other tests as well. As has been noted here, the "norm" for TSH has been reduced. Some measures of Diabetes testing have been reduced. etc. All do to the same thought process.

nora-n Rookie
nora-n
Posted

with neruological symptoms, the ttg-6 antibodies are involved and they cross-react to a lesser degree with ttg-2 which is used for celiac testing.

DH has ttg-3 antibodies.

Open Original Shared Link

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


IrishHeart Veteran
IrishHeart
Posted

You may find some information here? It is a collection of articles on gluten and neuro symptoms. Just FYI. Not sure if it answers the question regarding low tTg but supports the neuro-gluten connection.

Open Original Shared Link

Kamma Explorer
Kamma
Posted
  • Author

with neruological symptoms, the ttg-6 antibodies are involved and they cross-react to a lesser degree with ttg-2 which is used for celiac testing.

DH has ttg-3 antibodies.

Open Original Shared Link

Oh, this would be funny if it wasn't dealing with people's well being. So, it's being recognized in other testing that the 'normal levels' of a reference rage actually include a percentage of who have the disease (insert disease name here) and are undiagnosed, skewing the ranges? This is sloppy science and it drives me batty.

Yup, I've been reading up on the ttg6 & ttg3 markers the last few days. Unfortunately, tests for them are still not available.

Kamma Explorer
Kamma
Posted
  • Author

You may find some information here? It is a collection of articles on gluten and neuro symptoms. Just FYI. Not sure if it answers the question regarding low tTg but supports the neuro-gluten connection.

Open Original Shared Link

Yeah, that site is a wealth of information and it totally supports the low ttg2 connection if you have ttg6 or ttg3 antibodies.

So, to recap the deficiencies in the ttg igA tests as a diagnostic tool:

False negatives can be caused by:

IgA deficiency

Skewed ranges

Client could have ttg3 & ttg6 antibodies which the ttg2 would not pick up.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. jenniber
      - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Disaccharide deficient, confusing biopsy results, no blood test

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks! i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me b...
    2. trents
      - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      High TTG-IgG and Normal TTG-IgA

      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease...
    3. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      32

      My journey is it gluten or fiber?

      I made it through the holiday w/o being glutened. I had my brother cook with gluten-free breadcrumbs and I didn't get sick. I baked cookies with gluten-free flour and had dry ingredients for cookies in ziplock bag. I also made gluten cookies as well and guess I did good washing to avoid CC. My wife also went to a french bakery and bought a gluten-free flourless...
    4. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      32

      My journey is it gluten or fiber?

      What do you mean it would not allow any celiac to eat gluten again. I think if this helps cross contamination when eating out at a non dedicated gluten-free restaurant this would be nice not to encounter the pains. But is their a daily enzyme to take to help strengthen the digestive system?
    5. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      High TTG-IgG and Normal TTG-IgA

      Hi, thank you for the reply. Unfortunately, no other antibody tests were ordered. I am a 32-year-old male. About two months ago, I ate pancakes and then developed severe diarrhea that lasted the entire day. At night, I became unconscious due to fluid loss and was admitted to the ER, where I received IV fluids. Two days later, I ate bread again and once...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,845
    • Most Online (within 30 mins)
      7,748
    Paulaannefthimiou
    Newest Member
    Paulaannefthimiou
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • jenniber
      Disaccharide deficient, confusing biopsy results, no blood test

      By jenniber · Posted

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      I made it through the holiday w/o being glutened. I had my brother cook with gluten-free breadcrumbs and I didn't get sick. I baked cookies with gluten-free flour and had dry ingredients for cookies in ziplock bag. I also made gluten cookies as well and guess I did good washing to avoid CC. My wife also went to a french bakery and bought a gluten-free flourless chocolate cake dedicated gluten-free it was out of this world. 
    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      What do you mean it would not allow any celiac to eat gluten again. I think if this helps cross contamination when eating out at a non dedicated gluten-free restaurant this would be nice not to encounter the pains. But is their a daily enzyme to take to help strengthen the digestive system? 
    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Hi, thank you for the reply. Unfortunately, no other antibody tests were ordered. I am a 32-year-old male. About two months ago, I ate pancakes and then developed severe diarrhea that lasted the entire day. At night, I became unconscious due to fluid loss and was admitted to the ER, where I received IV fluids. Two days later, I ate bread again and once more developed severe diarrhea. I ended up in the ER again and received IV fluids. In my country, Pakistan, doctors are unfortunately not very thorough, so they treated me for a stomach infection. I visited three or four doctors, including a gastroenterologist, but it seemed like they just wanted to keep me on medications and IV fluids. Eventually, I did some digging myself and started connecting the dots. For years, I’ve had excessive gas buildup and frequent loose stools, but I never paid much attention to it. I also cannot easily digest dairy products. Two years ago, I had a CBC test that showed iron deficiency. My doctor told me to eat more meat and said it was nothing serious. However, for the past five years, I’ve also had severe motion sickness, which I never experienced before. Whenever I get on a bus or in a car, I sometimes lose consciousness for 10–20 seconds and wake up sweaty, and occasionally I feel the need to vomit. After more research on the internet, I came across gluten and celiac disease, so I got two related tests (TTG-IgA & TTG IgG) done along with a stool test and another CBC. The stool test showed weakly positive blood. Ever since eating those pancakes and bread, I’ve had a burning sensation in my gut. My doctor reviewed my tests, he told me to completely stop eating gluten and started me on IV fluids for 20 days, saying that I had severe inflammation in my gut. It has now been two months since I quit gluten, and I’m still not sure whether this is celiac disease or gluten intolerance. I don’t really trust doctors in Pakistan, so I thought I might get some help here.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.