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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,964
    • Most Online (within 30 mins)
      7,748
    Cbear
    Newest Member
    Cbear
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Does anyone here also have Afib

      By Scott Adams · Posted

      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
×
×
  • 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.