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Low Total IgA and Weak Positive ttg IgA

sugarsue

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sugarsue Enthusiast
sugarsue
Posted

My daughter is really sick (long story) and she's been evaluated for Celiac.   The doc looked at these results and said no celiac.  Thoughts on the weak positive and the low total IgA? I read that low total IgA can cause the celiac test to not work. I'm thinking we should see a GI but not sure yet if we need a referral.  Our doc referred us to an immunologist.

She has a higher risk of celiac based off of DNA testing.  She has hashimoto's thyroiditis.  She has gut symptoms, pain and psychiatric symptoms.

Low Total IgA (49 range 66-433)

tTG IgG - negative

tTg IgA - weak positive (4.2 range 4-10)

DgA IgA - negative

DgA IgG - negative

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cyclinglady Grand Master
cyclinglady
Posted

Having only one positive (DGP Iga and I was not even IGA deficient, but the opposite high out of range) on the celiac panel, my GI proceeded with the endoscopy/biopsies.  I did not even have gut issues, but I was anemic and had Hashi's too.  Biopsies revealed a Marsh Stage IIIB.  The celiac antibody tests are not perfect.  I would get a opinion from a GI.  

Something is wrong with your daughter.  Trust your gut (no pun intended).  Keep advocating on her behalf!  

sugarsue Enthusiast
sugarsue
Posted
  • Author

Cyclinglady - thank you for the confirmation and support.  I've left a message with her doc to see if they will provide a referral to a GI and I'm also checking with our local Celiac group to see if they have any recommendations for docs that don't need a referral. 

 

squirmingitch Veteran
squirmingitch
Posted

I fully agree with cyclinglady!

sugarsue Enthusiast
sugarsue
Posted
  • Author

So, I know I'm obsessing but......

University of Chicago Celiac Disease Center website says any total IgA result over 20 won't affect the celiac test.   If this is so,  I'm still confused as to what a weak positive ttg iga means even though her result was barely in this category.  Why bother having a weak positive anyway?   I just don't get it and our doc is on vacation so I won't know what he'll recommend for another week.  I'll be finding out this week if we can see a GI without a referral.

Our lyme doc (she's had lyme, may still have it, like I said it's a long story) is having her do an IgG wheat test but I don't think that has any bearing on celiac does it?

 

 

cyclinglady Grand Master
cyclinglady
Posted
4 hours ago, sugarsue said:

So, I know I'm obsessing but......

University of Chicago Celiac Disease Center website says any total IgA result over 20 won't affect the celiac test.   If this is so,  I'm still confused as to what a weak positive ttg iga means even though her result was barely in this category.  Why bother having a weak positive anyway?   I just don't get it and our doc is on vacation so I won't know what he'll recommend for another week.  I'll be finding out this week if we can see a GI without a referral.

Our lyme doc (she's had lyme, may still have it, like I said it's a long story) is having her do an IgG wheat test but I don't think that has any bearing on celiac does it?

 

 

Ah, more information trickles in......

There are a few things that may elevate a Ttg igA result: 1)  celiac disease, 2) Lyme disease, 3) another autoimmune disorder.  Someone recently posted during the Last month who had a very elevated TTg but ended up not having celiac disease.  Instead he was diagnosed with Lyme disease.  My memory could be wrong, so do the research.   The bottom line is that further research by a GI is recommended.  

Celiac antibody results do not always correlate with the severity of intestinal damage in someone with celiac disease.  That is why an endoscopy/biopsies is still the gold standard for diagnosis.  Europe is opting to avoid the endoscopy in small children, but not the US.  

Her IgG Celiacs tests were negative, so he is checking for a wheat allergy?  

 

sugarsue Enthusiast
sugarsue
Posted
  • Author

Well, a different doc is checking for wheat allergy not the one who ran the celiac test.

Interesting about the lyme and ttg iga, I didn't know that.  So much to muddy the waters with her.  She's been treated for lyme for many years but they keep coming back with other tick borne illnesses that may be infecting her.  But since  the testing is so poor and nothing is solid in her testing, I am needing to look at every avenue I can to try to help her.  It's just not adding up.

As a young child she had sensory processing disorder, than PANDAS (reaction to strep), then Lyme.  Was gluten free for many years until we added it back in about 4 years ago.  Then 3 months ago started failing fast with psych symptoms of dissociation, anxiety, fears, unwanted laughter, joint pain, random pain, feeling ill after every meal, severe pain after wheat and dairy combo followed by diarrhea. 

I hope we get a good GI who will at the very least be willing to rule out celiac as we are running out of ideas.   I hope after all her testing she will be willing to go gluten-free again regardless of what we find, to see if it will help her. 

 

 

 

 

 

 

 

 

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?Momto5 Newbie
?Momto5
Posted

Interesting thing I learned from my immunologist. Once bitten by a tick you can develop a beef and pork intolerance. We just had IgG testing for beef, pork, gluten, casein and whey. Very telling and several in my family tested positive. Might be something to add to her testing. I'm so sorry! It's very frustrating trying to find answers 

  • 3 weeks later...
sugarsue Enthusiast
sugarsue
Posted
  • Author

We found a great GI doc and saw her yesterday.  She said my daughter's total IgA of 49 should be high enough for the test to register correctly.  However due to her symptoms and former positive reaction to gluten free diet, she's scheduling an endoscopy and after that either confirm celiac or assume non-celiac gluten intolerance and she'll start her gluten free diet again and I hope it helps her!  I will post the results just for informational purposes here in case anyone searches for total IgA posts in the future. 

Thanks for your support!

  • 3 weeks later...
sugarsue Enthusiast
sugarsue
Posted
  • Author

Hello we got her biopsy results back and they are normal.  The doc is calling her non celiac gluten intolerant and lactose intolerant.  Now we will just wait to see if the gluten-free diet helps her. 

She does have elevated IgG to casein and wheat  I know there is controversy on whether that test is helpful or not but either way we are hoping she gets well going gluten-free  

 

  • 1 month later...
sugarsue Enthusiast
sugarsue
Posted
  • Author

Hello friends!  I wanted to report that my daughter has been gluten free since her biopsy in August. She told me yesterday that she is almost back to herself.   All her pain is gone and her mental state is so much better.   I think in a few more months she will be 100%!

She he glutened herself one night in error and by the next night she was pretty crazy again. She knows for sure now it was the gluten causing her mental issues and is learning how to watch out for her food. 

As always thanks for your support.  Even without a celiac diagnosis we have learned that gluten is so very damaging.  I wish mainstream docs would suggest gluten-free before just referring kids to psychiatrists for drugs. i spent thousands trying to figure out what was wrong.

 

 

 

 

 

cyclinglady Grand Master
cyclinglady
Posted

I am so glad that she is feeling better.    Non-celiac gluten intolerance is real.  Researchers like Dr. Fasano are acknowledging it and will hopefully create a method of testing for it.  Glad you ruled out celiac disease!  

Thank you for reporting her progress.   You will help so many others with comparable issues!  

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    • Scott Adams
      How many grams is there in one slice of wheat bread?

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      The first set of results show two positive results for celiac disease, so at the very least it looks like you could have it, or at the least NCGS.   Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.      
    • Scott Adams
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      By Scott Adams · Posted

      Elevated tissue transglutaminase IgA (tTG-IgA) levels are highly specific for celiac disease, and they are a key biomarker used in its diagnosis. However, there are some rare instances where elevated tTG-IgA levels have been reported in conditions other than celiac disease. While these cases are not common, they have been documented in the literature. Below are some examples and references to studies or reviews that discuss these scenarios:  1. Non-Celiac Gluten Sensitivity (NCGS)    - NCGS typically does not cause elevated tTG-IgA levels, as it is not an autoimmune condition. However, some individuals with NCGS may have mild elevations in tTG-IgA due to intestinal inflammation or other factors, though this is not well-documented in large studies.    - Reference: Catassi, C., et al. (2013). *Non-Celiac Gluten Sensitivity: The New Frontier of Gluten-Related Disorders*. Nutrients, 5(10), 3839–3853. [DOI:10.3390/nu5103839](https://doi.org/10.3390/nu5103839)  2. Autoimmune Diseases    - Elevated tTG-IgA levels have been reported in other autoimmune conditions, such as type 1 diabetes, autoimmune hepatitis, and systemic lupus erythematosus (SLE). This is thought to be due to cross-reactivity or polyautoimmunity.    - Reference: Sblattero, D., et al. (2000). *The Role of Anti-Tissue Transglutaminase in the Diagnosis and Management of Celiac Disease*. Autoimmunity Reviews, 1(3), 129–135. [DOI:10.1016/S1568-9972(01)00022-3](https://doi.org/10.1016/S1568-9972(01)00022-3)  3. Chronic Liver Disease    - Conditions like chronic hepatitis or cirrhosis can sometimes lead to elevated tTG-IgA levels, possibly due to increased intestinal permeability or immune dysregulation.    - Reference: Vecchi, M., et al. (2003). *High Prevalence of Celiac Disease in Patients with Chronic Liver Disease: A Role for Gluten-Free Diet?* Gastroenterology, 125(5), 1522–1523. [DOI:10.1016/j.gastro.2003.08.031](https://doi.org/10.1016/j.gastro.2003.08.031)  4. Inflammatory Bowel Disease (IBD)    - Some patients with Crohn’s disease or ulcerative colitis may have elevated tTG-IgA levels due to intestinal inflammation and damage, though this is not common.    - Reference: Walker-Smith, J. A., et al. (1990). *Celiac Disease and Inflammatory Bowel Disease*. Journal of Pediatric Gastroenterology and Nutrition, 10(3), 389–391. [DOI:10.1097/00005176-199004000-00020](https://doi.org/10.1097/00005176-199004000-00020)  5. Infections and Parasites    - While infections (e.g., giardiasis) are more commonly associated with false-positive tTG-IgA results, chronic infections or parasitic infestations can sometimes lead to elevated levels due to mucosal damage.    - Reference: Rostami, K., et al. (1999). *The Role of Infections in Celiac Disease*. European Journal of Gastroenterology & Hepatology, 11(11), 1255–1258. [DOI:10.1097/00042737-199911000-00010](https://doi.org/10.1097/00042737-199911000-00010)  6. Cardiac Conditions    - Rarely, heart failure or severe cardiovascular disease has been associated with elevated tTG-IgA levels, possibly due to gut ischemia and increased intestinal permeability.    - Reference: Ludvigsson, J. F., et al. (2007). *Celiac Disease and Risk of Cardiovascular Disease: A Population-Based Cohort Study*. American Heart Journal, 153(6), 972–976. [DOI:10.1016/j.ahj.2007.03.019](https://doi.org/10.1016/j.ahj.2007.03.019)  Key Points: - Elevated tTG-IgA levels are highly specific for celiac disease, and in most cases, a positive result strongly suggests celiac disease. - Other conditions causing elevated tTG-IgA are rare and often accompanied by additional clinical findings. - If celiac disease is suspected, further testing (e.g., endoscopy with biopsy) is typically required for confirmation. If you’re looking for more specific studies, I recommend searching PubMed or other medical databases using terms like "elevated tTG-IgA non-celiac" or "tTG-IgA in non-celiac conditions." Let me know if you’d like help with that!
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    • trents
      What should I do with these test results?

      By trents · Posted

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    • Jack Common
      How many grams is there in one slice of wheat bread?

      By Jack Common · Posted

      Hello! I want to share my situation. I had symptoms like some food intolerance, diarrhea, bloating, belching one year ago. I thought I could have celiac disease so I did the blood tests. The results were ambiguous for me so I saw the doctor and he said I needed to do tests to check whether I had any parasites as well. It turned out I had giardiasis. After treating it my symptoms didn't disappear immediately. And I decided to start a gluten free diet despite my doctor said I didn't have it. After some time symptoms disappeared but that time it wasn't unclear whether I'd had them because of eliminating gluten or that parasite. The symptoms for both are very similar. Giardiasis also damages the small intestine. The only way to check this was to start eating bread again as I thought. Now about my results.   These are my first test results (almost a year ago) when I had symptoms: The Tissue Transglutaminase IgA antibody - 0.5 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) The Tissue Transglutaminase IgG antibody - 6.6 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) Immunoglobulin A - 1.91 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) IgA Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) IgG Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) Deamidated gliadin peptide IgA - 0.3 U/ml (for the lab I did the tests 0.0 - 6.0 is normal) Deamidated gliadin peptide IgG - 46.1 U/ml (for the lab I did the tests 0.0 - 6.0 is normal)   Then I didn't eat gluten for six months. Symptoms disappeared. And I started a gluten challenge. Before the challenge I did some tests. My results: The Tissue Transglutaminase IgG antibody - 0.5 U/ml (for the lab I did the tests < 20 U/ml is normal)) Deamidated gliadin peptide IgG - 28 U/ml (for the lab I did the tests < 20 U/ml is normal)   During the challenge I ate 6 slices of wheat bread. After the challenge my results are: The Tissue Transglutaminase IgA antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) The Tissue Transglutaminase IgG antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.31 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgA - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Deamidated gliadin peptide IgG - 2.13 U/ml (for the lab I did the tests < 20 U/ml is normal)   To be sure I continued consuming gluten. I ate a lot each day. Two months after I did the tests again. My results I got today are: The Tissue Transglutaminase IgA antibody - 0.7 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.62 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgG - 25.6 U/ml (for the lab I did the tests < 20 U/ml is normal)   Nowadays I didn't have any symptoms except tiredness but I think it's just work. I think it was this parasite because two years ago, for example, and before I didn't have these symptoms and I always ate gluten food. But I'm still not sure especially because the Deamidated gliadin peptide IgG results are sometimes high. What do you think? @Scott Adams
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