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

Question About Anti-Ttg

PersianCeliac

Recommended Posts

PersianCeliac Contributor
PersianCeliac
Posted

Hi everyone, my mother and aunt were recently diagnosed with celiac. My mother has no symptoms except anemia. My mother's tTG was >800 when diagnosed and biopsy showed subtotal atrophy. I was wondering did anyone else have such a high number ? I am afraid that since her numbers are so high it will be difficult for her to bring it down or normalize it. My aunt's number was >500 but done at a different lab so they stop counting at 500 not 800.

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

Celiac.com Sponsor (A8-M):


sa1937 Community Regular
sa1937
Posted

Welcome to the forum! Different labs use difference reference ranges. My celiac panel was done by Quest and my tTG was >100 with positive being >8. So how far over 100 that was is an unknown. 398? 500? 1,000? No clue.

ravenwoodglass Mentor
ravenwoodglass
Posted

Her numbers should come down after she has been on the diet for a bit. Many doctors will recheck levels at 6 months to a year gluten-free. By the way since your Mom was diagnosed that means you should also be tested along with the rest of your family if you haven't been already. Read as much as you can here to help your Mom and keep her safe and ask any other questions you need to.

PersianCeliac Contributor
PersianCeliac
Posted
  • Author

Thank you for your responses. As soon as I found out its hereditary, I got tested. My results are confusing my ttg and EmA are both negative also anti-gliadin IGg negative only anti-gliadin IgA is positive and that is not specific to celiac. I guess maybe I have some allergy to gluten but not celiac yet. Sylvia I was wondering did your number come down for ttg ? And if yes how long did it take ?

ravenwoodglass Mentor
ravenwoodglass
Posted

Thank you for your responses. As soon as I found out its hereditary, I got tested. My results are confusing my ttg and EmA are both negative also anti-gliadin IGg negative only anti-gliadin IgA is positive and that is not specific to celiac. I guess maybe I have some allergy to gluten but not celiac yet. Sylvia I was wondering did your number come down for ttg ? And if yes how long did it take ?

It is my understanding that the IgA is quite specific to celiac. IMHO with your family history you should go gluten free and then retest and see if the IgA levels go down.

sa1937 Community Regular
sa1937
Posted

Thank you for your responses. As soon as I found out its hereditary, I got tested. My results are confusing my ttg and EmA are both negative also anti-gliadin IGg negative only anti-gliadin IgA is positive and that is not specific to celiac. I guess maybe I have some allergy to gluten but not celiac yet. Sylvia I was wondering did your number come down for ttg ? And if yes how long did it take ?

Knowing what I know now, I would have asked to be retested at 6 months and a year. For me I think I was 9 months or so into the diet before I was retested.

While my EMA was positive at diagnosis, it was negative when retested. My tTG had gone from >100 to 10, which according to Quest was still positive (>8 is positive). Since I was compliant to the diet, I was totally bummed when I met with my GI in April a year ago. He was not concerned because the numbers had fallen dramatically and we had no idea how high they really were as Quest only tested to 100. Right now I have a lab slip to test the tTG and EMA again and have a follow-up appointment on June 7. Now to get to the lab...

If my tTG is still positive, I plan to ask for more testing as I know other AI diseases can also affect tTG levels.

PersianCeliac Contributor
PersianCeliac
Posted
  • Author

Knowing what I know now, I would have asked to be retested at 6 months and a year. For me I think I was 9 months or so into the diet before I was retested.

While my EMA was positive at diagnosis, it was negative when retested. My tTG had gone from >100 to 10, which according to Quest was still positive (>8 is positive). Since I was compliant to the diet, I was totally bummed when I met with my GI in April a year ago. He was not concerned because the numbers had fallen dramatically and we had no idea how high they really were as Quest only tested to 100. Right now I have a lab slip to test the tTG and EMA again and have a follow-up appointment on June 7. Now to get to the lab...

If my tTG is still positive, I plan to ask for more testing as I know other AI diseases can also affect tTG levels.

Sylvia I hope your tests turn out normal, it is great that u responded so well. I was wondering what was the stage of your celiac at diagnosis ? Mild, subtotal or total atrophy ?

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

Celiac.com Sponsor (A8-M):


sa1937 Community Regular
sa1937
Posted

Sylvia I hope your tests turn out normal, it is great that u responded so well. I was wondering what was the stage of your celiac at diagnosis ? Mild, subtotal or total atrophy ?

Thanks, I do, too! My biopsy report said I had villous atrophy but it didn't define it according to the Marsh scale, which I've seen referred to on here. So I really don't know.

Skylark Collaborator
Skylark
Posted

It is my understanding that the IgA is quite specific to celiac. IMHO with your family history you should go gluten free and then retest and see if the IgA levels go down.

I have a different understanding? Usually these days gliadin means deamidated gliadin and I'm pretty sure the IgG is more specific than IgA with the deamidated? The old anti-gliadin IgA was not sensitive at all but pretty specific but I don't know that anyone runs it anymore. I think we did have a couple people with deamidated IgA and positive biopsies.

Whatever it is, having a positive on any of the gliadin style blood tests means you will probably feel better off gluten!

GladGirl Rookie
GladGirl
Posted

My bloodwork was done through the office of a hemotologist and his lab. My IGA was positive big time! Because of my liver biopsy and the bloodwork they did not feel it necessary at this time for me to have another invasive procedure. My liver enzymes are hopefully showing diminished in this next bloodwork. I am however, going to seek a gastro Dr. I have heard of who specializes in celiac disease. I know the tests for my vitamin/mineral status is necessary at this point, so will be taking that step next.

The bloodwork as I understand it for testing is not always "conclusive", so it seems that the genetic testing is another way to go. I am thinking in this whole scenario, that one day they will probably "type" this disease as they have so many others. With all the varying symptomology out there, it would seem that as more clinical studies are performed, that may be the way this specialty will go. Could be helpful for so many out there. Just a thought on my part.:)

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. Jordan Carlson
      - Jordan Carlson posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Fruits & Veggies

      Hello everyone! Been a while since I posted. The past few moths have been the best by for recovery for myself. I have been the least bloated I have ever been, my constant throat clearing is almost gone, I have stopped almost all medication I was prevously taking (was taking vyvanse for adhd, pristiq for anxiety,fomotadine/blexten for histamine...
    2. wellthatsfun
      - wellthatsfun posted a topic in Gluten-Free Recipes & Cooking Tips
      0

      heaps of hope!

      i know i've been rather cynical and sad about being fully diagnosed in june 2025, but my boyfriend has been consistently showing me the wonderful world that is gluten free cooking and baking. in the past couple of days he's made me a gluten free rice paper-wrapped spanakopita "pastry", plus a wonderful mac and cheese bechamel-ish sauce with gluten free...
    3. knitty kitty
      - knitty kitty replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      6

      Help understand results

      That test is saying that your daughter is not making normal amounts of any IGA antibodies. She's not making normal amounts of antibodies against gliadin, not against bacteria, not against viruses. She is deficient in total IGA, so the test for antigliadin antibodies is not valid. The test was a failure. The test only works if all different kinds of antibodies...
    4. knitty kitty
      0

      Vitamins I Take

    5. knitty kitty
      - knitty kitty replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      10

      Insomnia help

      @hjayne19, So glad you found the information helpful. I know how difficult my struggle with anxiety has been. I've been finding things that helped me and sharing that with others makes my journey worthwhile. I like Life Extension Bioactive Complete B Complex. It contains the easily activated forms of B vitamins needed by people with the MTHFR...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,994
    • Most Online (within 30 mins)
      7,748
    KimberlyS
    Newest Member
    KimberlyS
    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

    • Jordan Carlson
      Fruits & Veggies

      By Jordan Carlson · Posted

      Hello everyone! Been a while since I posted. The past few moths have been the best by for recovery for myself. I have been the least bloated I have ever been, my constant throat clearing is almost gone, I have stopped almost all medication I was prevously taking (was taking vyvanse for adhd, pristiq for anxiety,fomotadine/blexten for histamine blockers and singulair). Only thing I take now is Tecta. I also no longer get any rashes after eating. Things are going very well. Most success came actually once I upped my B12 daily dose to 5,000 mcg. I do have one thing I am un able to figure out and want to see if anyone else has this issue or has experience working around it. Ever since I was born I have always had a issue getting fruits and veggies down. No matter how hard I tried, it would always result in gagging or throwing up. Always just thought I was a picky eater. Now that my stomach and system has healed enough that I can feel when something is off almost istantly, I notice that after eating most fruits (sometimes I am ok with bananas) and veggies, my stomach instantly starts burning and my heart starts to pound and I get really anxious as if my body doesnt know what to do with what just enetered it. So I am thinking now that this is what probably was going on when I was born and my body started rejecting it before which caused this weird sensory issue with it causing the gagging. Hoping someone has some exprience with this as well because I would love to be able to enjoy a nice fruit smoothie once in a while haha. Thanks everyone!
    • wellthatsfun
      heaps of hope!

      By wellthatsfun · Posted

      i know i've been rather cynical and sad about being fully diagnosed in june 2025, but my boyfriend has been consistently showing me the wonderful world that is gluten free cooking and baking. in the past couple of days he's made me a gluten free rice paper-wrapped spanakopita "pastry", plus a wonderful mac and cheese bechamel-ish sauce with gluten free pasta (san remo brand if you're in australia/if you can get your hands on it wherever you are).  those meals are notably gluten free, but mainly he's been making me easy gluten free meals - chili mince with white rice and sour cream, chicken soup with homemade stock from the chicken remains, and roast chickens with rice flour gravy and roast veggies. i'm a bit too thankful and grateful lol. how lucky could i possibly be? and, of course, for those who don't have someone to cook for them, it's quite easy to learn to cook for yourself. i've been making a lot of meals for us too. honestly, cooking is pretty darn fun! knowing basic knife skills and sanitary practices are all you really need. experimenting with spices will help you get on track to creating some really flavourful and yummy dishes. coeliac is a pain, but you can use it to your advantage. healthier eating and having fun in the kitchen are major upsides. much luck to all of you! let's be healthy!
    • knitty kitty
      Help understand results

      By knitty kitty · Posted

      That test is saying that your daughter is not making normal amounts of any IGA antibodies.  She's not making normal amounts of antibodies against gliadin, not against bacteria, not against viruses.  She is deficient in total IGA, so the test for antigliadin antibodies is not valid.  The test was a failure.  The test only works if all different kinds of antibodies were being made.  Your daughter is not making all different kinds of antibodies, so the test results are moot.  Your daughter should have the DGP IgG and TTG IgG tests done.   The tests should be performed while she is still consuming gluten.  Stopping and restarting a gluten containing diet can make her more sick, just like you refuse to eat gluten for testing.  Call the doctor's office, request both the IGG tests. Request to be put on the cancellation list for an appointment sooner.  Ask for genetic testing.   Celiac disease is passed on from parents to children.  You and all seven children should be tested for genes for Celiac disease.  Your parents, your siblings and their children should be tested as well.  Eating gluten is not required for genetic testing because your genes don't change.  Genetic testing is not a diagnosis of Celiac disease.  Just having the genes means there is the potential of developing Celiac disease if the Celiac genes are activated.  Genetic testing helps us decide if the Celiac genes are activated when coupled with physical symptoms, antibody testing, and biopsy examination. It's frustrating when doctors get it wrong and we suffer for it.  Hang in there.  You're a good mom for pursuing this!  
    • knitty kitty
      Insomnia help

      By knitty kitty · Posted

      @hjayne19, So glad you found the information helpful.  I know how difficult my struggle with anxiety has been.  I've been finding things that helped me and sharing that with others makes my journey worthwhile. I like Life Extension Bioactive Complete B Complex.  It contains the easily activated forms of B vitamins needed by people with the MTHFR genetic variation often found with Celiac disease.   Avoid B Complex vitamins if they contain Thiamine Mononitrate if possible.  (Read the ingredients listing.)  Thiamine Mononitrate is the "shelf-stable" form of B 1 that the body can't utilize.  B vitamins breakdown when exposed to heat and light, and over time.  So "shelf-stable" forms won't breakdown sitting on a shelf in a bright store waiting to be bought.  (It's also very cheap.)  Thiamine Mononitrate is so shelf-stable that the body only absorbs about thirty percent of it, and less than that is utilized.  It takes thiamine already in the body to turn Thiamine Mononitrate into an active form.   I take MegaBenfotiamine by Life Extension.  Benfotiamine has been shown to promote intestinal healing, neuropathy, brain function, glycemic control, and athletic performance.   I take TTFD-B1 Max by Maxlife Naturals, Ecological Formulas Allthiamine (TTFD), or Thiamax by EO Nutrition.  Thiamine Tetrahydrofurfuryl Disulfide (TTFD for short) gets into the brain and makes a huge difference with the anxiety and getting the brain off the hamster wheel.  Especially when taken with Magnesium Threonate.   Any form of Thiamine needs Magnesium to make life sustaining enzymes and energy.  I like NeuroMag by Life Extension.  It contains Magnesium Threonate, a form of magnesium that easily crosses the blood brain barrier.  My brain felt like it gave a huge sigh of relief and relaxed when I started taking this and still makes a difference daily.   Other brands of supplements i like are Now Foods, Amazing Formulas, Doctor's Best, Nature's Way, Best Naturals, Thorne, EO Nutrition. Naturewise.  But I do read the ingredients labels all the time just to be sure they are gluten and dairy free. Glad to help with further questions.  
    • trents
      Positive biopsy

      By trents · Posted

      Welcome to the celiac.com community @pothosqueen!   Can you be more specific about which IGA test was run that resulted in 114 score and said to be "normal" and could you please include the reference range for what would be normal? By the size of that number it looks like it may have been what we call "total IGA" but that test is not usually run without also running a TTG-IGA. Total IGA tests for IGA deficiency. If someone is IGA deficient, then the celiac-specific IGA tests like the TTG-IGA will be inaccurate. Was this the only IGA test that was run? To answer, your question, yes, a positive biopsy is normally definitive for celiac disease but there are some other medical conditions, some medications and even some food proteins in rare cases that can cause positive biopsies. But it is pretty unlikely that it is due to anything other than celiac disease.
×
×
  • 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.