Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

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

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

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

I fully agree with cyclinglady!

sugarsue Enthusiast

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
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

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

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

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

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

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

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,521
    • Most Online (within 30 mins)
      7,748

    Aunty KK
    Newest Member
    Aunty KK
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Welcome to the forum. Can we assume that you've been diagnosed with celiac disease and have been on a gluten-free diet for a while? If so, it sounds like you may be in the super sensitive group, as others here have reported similar issues when working in bakeries, pizzerias, etc. Until you find other work, and perhaps don't have roommates who cook gluten foods, you may need to consider wearing an N95 mask to avoid breathing in any particles.  
    • PixieSticks
      I used to work in a kitchen where gluten was very prevalent. Cookies, sandwiches, etc. I noticed I started having joint pain, and my hands would flared up in hives while working there. I would sometimes bake cookies during my shift and open the oven having the air from the oven go directly into my face.     Even at home my roommates sometimes fry things with regular flour and my joints start to hurt, brain fog, it was hard to move for a week, I just genuinely felt weak my legs like jelly and painful.  I never put two and two together before.   I’m not eating the food I feel like it’s causing issues.   My roommates don’t think there’s a correlation as I’m not eating any of the food they’re preparing. I’m trying to find another job now, I got one coming up at a restaurant that serves gluten food and I’ll be working in the kitchen. I’m thinking I should try to find a non food job. Anyone else worked food service and have flare ups? 
    • Art Maltman
      Thank you. I am in manhatten so there a lot of doctors I can see. I went to a neroligist and he just told me im depressed which im not and now i am going to go to a gut doctor to see if the 2 things might be realated. C:\Users\aryeh\Downloads\IMG_1049.jpg  
    • Newhere19
      Thank you both. I haven't had access to the test results but will get them and post here.
    • jjiillee
      The ulcers are prepyloric ulcers. Not sure if that makes any difference. 
×
×
  • Create New...