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. Jane02
      - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

      Sorry, I just realized how old this thread is and only read the initial post from 2021. I'll have to catch up on the comments in this thread.
    2. Jane02
      - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

      Sorry to hear you're going through such a hard time. It would be worth looking into MCAS/histamine issues and also Long Covid. Perhaps there is something occurring in addition to celiac disease. It would be worth ruling out micronutrient deficiencies such as the b vitamins (B12, folate, B1, etc), vit D, and ferritin (iron stores).
    3. knitty kitty
      - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

      This sounds very similar to the neuropathic pain I experienced with type two diabetes. Gloves and boots pattern of neuropathy is common with deficiencies in Cobalamine B12 (especially the pain in the big toe), Niacin B3, and Pyridoxine B6. These are vitamins frequently found to be low in people with pre-diabetes and diabetes. Remember that blood tests...
    4. trents
      - trents commented on Amiah's blog entry in Amiah
      1

      Help!!

      Welcome to the celiac.com community, @Amiah! First of all, you would do well to post your question in one of the appropriate community forums rather than in a blog. It will get more attention that way. Now as to your question, there are some other things that can cause elevated igg antibodies besides celiac disease. Various infections, mostly. For...
    5. Scott Adams
      - Scott Adams replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

      I’m really sorry you’re dealing with this—chronic neuropathic or nociplastic pain can be incredibly frustrating, especially when testing shows no nerve damage. It’s important to clarify for readers that this type of central sensitization pain is not the same thing as ongoing gluten exposure, particularly when labs, biopsy, and nutritional status are normal....
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,581
    • Most Online (within 30 mins)
      7,748
    MaggieSc
    Newest Member
    MaggieSc
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Jane02
      Terrible Neurological Symptoms

      By Jane02 · Posted

      Sorry, I just realized how old this thread is and only read the initial post from 2021. I'll have to catch up on the comments in this thread. 
    • Jane02
      Terrible Neurological Symptoms

      By Jane02 · Posted

      Sorry to hear you're going through such a hard time. It would be worth looking into MCAS/histamine issues and also Long Covid. Perhaps there is something occurring in addition to celiac disease. It would be worth ruling out micronutrient deficiencies such as the b vitamins (B12, folate, B1, etc), vit D, and ferritin (iron stores). 
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      This sounds very similar to the neuropathic pain I experienced with type two diabetes.  Gloves and boots pattern of neuropathy is common with deficiencies in Cobalamine B12 (especially the pain in the big toe), Niacin B3, and Pyridoxine B6.  These are vitamins frequently found to be low in people with pre-diabetes and diabetes.  Remember that blood tests for vitamin levels is terribly inaccurate.  You can have vitamin deficiencies before there are any changes in blood levels.  You can have "normal" serum levels, but be deficient inside organs and tissues where the vitamins are actually utilized.  The blood is a transportation system, moving vitamins absorbed in the intestines to organs and tissues.  Just because there's trucks on the highway doesn't mean that the warehouses are full.  The body will drain organs and tissues of their stored vitamins and send them via the bloodstream to important organs like the brain and heart.  Meanwhile, the organs and tissues are depleted and function less well.   Eating a diet high in simple carbohydrates can spike blood sugar after meals.  Eating a diet high in carbohydrates consistently over time can cause worsening of symptoms.  Thiamine and other B vitamins like Niacin B3 and Pyridoxine B6, (which I noticed you are not supplementing), are needed to turn carbs, proteins and fats into energy for the body to use.  Alcohol consumption can lower blood sugar levels, and hence, alleviate the neuropathic pain.  Alcohol destroys many B vitamins, especially Pyridoxine, Thiamine and Niacin.  With alcohol consumption, blood glucose is turned into fat, stored in the liver or abdomen, then burned for fuel, thus lowering blood glucose levels.  With the cessation of alcohol and continued high carb diet, the blood glucose levels rise again over time, resulting in worsening neuropathy.   Heavy exercise can also further delete B vitamins.  Thiamine and Niacin work in balance with each other.  Sort of like a teeter-totter, thiamine is used to produce energy and Niacin is then used to reset the cycle for thiamine one used again to produce energy.  If there's no Niacin, then the energy production cycle can't reset.  Niacin is important in regulating electrolytes for nerve impulse conduction.  Electrolyte imbalance can cause neuropathic pain.   Talk to your doctors about testing for Type Two diabetes or pre-diabetes beyond an A1C test since alcohol consumption can lower A1C giving inaccurate results. Talk to your doctors about supplementing with ALL eight B vitamins, and correcting deficiencies in Pyridoxine, Niacin, and B12.  Hope this helps! Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ P. S.  Get checked for Vitamin C deficiency, aka Scurvy.  People with Diabetes and those who consume alcohol are often low in Vitamin C which can contribute to peripheral neuropathy.
    • Scott Adams
      Terrible Neurological Symptoms

      By Scott Adams · Posted

      I’m really sorry you’re dealing with this—chronic neuropathic or nociplastic pain can be incredibly frustrating, especially when testing shows no nerve damage. It’s important to clarify for readers that this type of central sensitization pain is not the same thing as ongoing gluten exposure, particularly when labs, biopsy, and nutritional status are normal. A stocking/glove pattern with normal nerve density points toward a pain-processing disorder rather than active celiac-related injury. Alcohol temporarily dampening symptoms likely reflects its central nervous system depressant effects, not treatment of an underlying gluten issue—and high-dose alcohol is dangerous and not a safe or sustainable strategy. Seeing a pain specialist is absolutely the right next step, and we encourage members to work closely with neurology and pain management rather than assuming hidden gluten exposure when objective testing does not support it.
    • Scott Adams
      Reverse Osmosis (RO) Water

      By Scott Adams · Posted

      There is no credible scientific evidence that standard water filters contain gluten or pose a gluten exposure risk. Gluten is a food protein from wheat, barley, or rye—it is not used in activated carbon filtration in any meaningful way, and refrigerator or pitcher filters are not designed with food-based binders that would leach gluten into water. AI-generated search summaries are not authoritative sources, and they often speculate without documentation. Major manufacturers design filters for water purification, not food processing, and gluten contamination from a water filter would be extraordinarily unlikely. For people with celiac disease, properly functioning municipal, bottled, filtered, or distilled water is considered gluten-free.
×
×
  • 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.