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

Low Total IgA and Weak Positive ttg IgA

sugarsue

Recommended Posts

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

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

Celiac.com Sponsor (A8-M):


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. 

 

 

 

 

 

 

 

 

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

Celiac.com Sponsor (A8-M):


?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!  

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. Rogol72
      - Rogol72 replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying...
    2. Scott Adams
      - Scott Adams replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin. In the early 1900s, refined white flour replaced whole grains, and people began...
    3. Scott Adams
      - Scott Adams replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted...
    4. JoJo0611
      - JoJo0611 replied to JoJo0611's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      CT with contrast.

      Thank you.
    5. deanna1ynne
      - deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased int...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,442
    • Most Online (within 30 mins)
      7,748
    Nony
    Newest Member
    Nony
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Rogol72
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Rogol72 · Posted

      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying it once. It's fortified with Calcium and Iron. https://www.warburtonsglutenfree.com/warbs_products/white-loaf/ The only other gluten-free bread that I've come across that is fortified is Schar with Iodized salt, nothing else.
    • Scott Adams
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Scott Adams · Posted

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
    • JoJo0611
      CT with contrast.

      By JoJo0611 · Posted

      Thank you. 
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased intraepithelial lymphocytes, preserved villous architecture, and patchy foveolar metaplasia,” which we are told is still inconclusive…  We will have her go gluten free again anyway, but how soon would you all test again, if at all? How valuable is an official dx in a situation like this?
×
×
  • 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.