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 Celiac.com!
    eNewsletter
    Donate

Anyone Remember...

AmandaD

Recommended Posts

AmandaD Community Regular
AmandaD
Posted

Hi - Anyone else here on this board remember (if they had the tissue transglutaminase test done to diagnose them) what their TTG number or level was?

Just curious...

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Rachel--24 Collaborator
Rachel--24
Posted

Mine was a stool test...not blood. I'm not really sure what the difference is but here's my results.

Fecal Antitissue Transglutaminase IgA 15 Units (Normal Range <10 Units)

BTW....I was not consuming gluten for 4 months prior to my test but was still glutened from supplements, etc. Does anyone know if after 4 months this number would have come down? Is it likely it was higher when I was eating gluten everyday?

If I'm totally gluten-free should this number go down to zero eventually?

Link to comment
Share on other sites
Canadian Karen Community Regular
Canadian Karen
Posted

When diagnosed, over 100.

Last month, bloodwork showed 13.

Karen

Link to comment
Share on other sites
Matilda Enthusiast
Matilda
Posted

..

Link to comment
Share on other sites
KaitiUSA Enthusiast
KaitiUSA
Posted

I believe mine was almost 3 times what it should have been.

Link to comment
Share on other sites
nikki-uk Enthusiast
nikki-uk
Posted

My husbands was 12 for the tTg which was negative .

Positive biopsy though. :huh:

My son had the test a couple of months ago and scored a 10(neg again)but surely if there's 'no coeliac' it should read zero??(Have asked for a referal for gastro doc as symptoms continue)

Wondered if other celiac disease'ers antibodies ever go to zero?

Link to comment
Share on other sites
nikki-uk Enthusiast
nikki-uk
Posted

Sorry,just read your post Rachel,I've just asked the same question?Brain running a bit slow tonight.... :blink:

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Rachel--24 Collaborator
Rachel--24
Posted
Sorry,just read your post Rachel,I've just asked the same question?Brain running a bit slow tonight.... :blink:

<{POST_SNAPBACK}>

Thats OK...ask away cuz I never got an answer to that question.

Link to comment
Share on other sites
nikki-uk Enthusiast
nikki-uk
Posted

Just like to say Rachel you look so much better!(hope you don't mind me saying!)

Link to comment
Share on other sites
AmandaD Community Regular
AmandaD
  • Author
Posted

Odd - my number was 10.5 and then a positive biopsy as well. Don't get it...

I don't know about the antibodies ever going to zero but my doc did say they should go into a negative zone which was about 1 to 7...

My husbands was 12 for the tTg which was negative .

Positive biopsy though. :huh:

My son had the test a couple of months ago and scored a 10(neg again)but surely if there's 'no coeliac' it should read zero??(Have asked for a referal for gastro doc as symptoms continue)

Wondered if other celiac disease'ers antibodies ever go to zero?

<{POST_SNAPBACK}>

Link to comment
Share on other sites
Rachel--24 Collaborator
Rachel--24
Posted
Just like to say Rachel you look so much better!(hope you don't mind me saying!)

<{POST_SNAPBACK}>

Thanks...I feel alot better too. :D

Link to comment
Share on other sites
PicturePerfect Explorer
PicturePerfect
Posted

I had about 4 times more than I should have had, if I remember correctly. Then with the endoscopy, the doctor could not tell just by my intestines if I had Celiac or not.. they had to take a sample. :huh:

Link to comment
Share on other sites
celiac3270 Collaborator
celiac3270
Posted

I don't remember my numbers-- but to answer one question: it would never go to zero. You can be perfectly healthy, perfectly non-celiac with no gene or anything, and still have a tTG of say... 6.

Link to comment
Share on other sites
Rachel--24 Collaborator
Rachel--24
Posted
You can be perfectly healthy, perfectly non-celiac with no gene or anything, and still have a tTG of say... 6.

<{POST_SNAPBACK}>

Why is that? :huh:

Link to comment
Share on other sites
SueC Explorer
SueC
Posted

Mine was 187. 3 months gluten-free it was 25. I just did my 6 month testing but haven't got result back yet. I am hoping it will be in the norml range.

Link to comment
Share on other sites
julie5914 Contributor
julie5914
Posted

I didn't have it run before going gluten-free - I only had the EMA. But I am 4 months gluten-free and my ttg was 20 (not sure what the range was, but that was a blood sample). They just told me over the phone to be more diligent about keeping gluten out. Rachel, I am not sure if my number was still 20 just because I am still getting out of my body or if it was because I am still getting it somehow.

Link to comment
Share on other sites

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. Suzi374
      - Suzi374 replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Lots of tests

      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it.
    2. Suzi374
      - Suzi374 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Lots of tests

      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be be...
    3. Peace lily
      - Peace lily posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Would like to gain weight

      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
    4. Smith-Ronald
      - Smith-Ronald replied to Soleihey's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Lymph nodes

      Enlarged lymph nodes in neck and groin with celiac are not uncommon. They can take time to reduce even after going gluten-free. Monitoring is key.
    5. Bayb
      - Bayb replied to Bayb's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Trying to read my lab results

      Hi Scott, yes I have had symptoms for years and this is the second GI I have seen and he could not believe I have never been tested. He called later today and I am scheduled for an endoscopy. Is there a way to tell how severe my potential celiac is from the results above? What are the chances I will have the biopsy and come back negative and we have to keep...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      121,224
    • Most Online (within 30 mins)
      7,748
    Suzi374
    Newest Member
    Suzi374
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Suzi374
      Lots of tests

      By Suzi374 · Posted

      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it. 
    • Suzi374
      Lots of tests

      By Suzi374 · Posted

      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be better and tried a new set of probs, all the time, giving me multiple shocks which were not enjoyable lol. Anyway, he’s now ordered tests for myeloma, and all the vitaminy things that so many of you mention on here, also tests looking for autoimmune responses. I already have Hashimotos. Interestingly, to me, but maybe someone out there can relate or knows more than i do, although I was a nurse, but ED not ‘weird symptoms’  nurse. Anyway back to the interesting thing, I took duramine in 2013 to lose weight which caused a massive panic attack when I stopped taking it and half my hair fell out. I only took it for a week but it was horrible and I regret it. It triggered ongoing panic attacks which are horrendous. So I feel like I’m a bit crazy. Then in 2020 I had this sudden onset of horrible pain when trying to eat a cinnamon roll. It continued and I lost around 20 kgs. I had two gastroscopes and a colonoscopy and they were all normal. I scored a barium swallow and CT angiogram. All normal. The pain subsided a little but I was left with reflux and an awful feeling that I couldn’t get air when I ate some foods. This was not anxiety.  The anxiety was separate and I still maintain this. This was something to do with eating. It was like the air was thick but I wasn’t short of breath. I just had the sensation I was, then it triggered anxiety. Anyway, I had other weird things- couldn’t bend knees to shave legs in shower lol. Knees felt stiff and swollen but they weren’t. Knee WOUld swell up randomly but mri showed minimal issues. A bit of a meniscus degeneration but insignificant. Then the buzzing sensations in my head, the feeling like someone was stabbing me with something sharp. So now, I pre empted his tests, although I don’t think I’m celiac because it should have come up on gastroscopy, I’ve gone off gluten. Since Tuesday last week so 9 days. Since then I don’t appear to be as constipated, I realised I got through today without a nap and I’m not tired, maybe it’s just today and not related but I get very tired normally and sleep straight after work often, I can bend my knees and shave my legs lol, the buzzing vibrating has gone from my head, I had to call and ambulance as my heart decided we were off on a run, but we weren’t running and I’ve been a bit twitchy at bed time when trying to sleep, reflux is improving, I did get the weird suffocating feeling a bit when eating today but not as bad normall. Tingling and numbness still present and I felt like it moved up my legs a bit today but I’m a bit jittery. So I don’t know if it’s celiac disease or a gluten intolerance but I think, and it may be wishful thinking because my symptoms do make life a bit challenging, but maybe I’m feeling better. I don’t feel as cloudy. My thinking feels crisper. Like there’s no buzzing and I’m not fighting to break through the cloudiness now. I hope so much that this may help me feel a bit better moving forward. It would be a miracle as I really have struggled to work and parent and keep the house clean and I’m always anxious and exhausted.  If you get this far, please tell me if you you can relate to any of the above. Oh and tonsils out 5 years ago but before that antibiotics multiple times a year, sometimes intramuscular because they were so bad.  Op was meant to take 30 mins, it took 1.5 hours due to size of them. 
    • Peace lily
      Would like to gain weight

      By Peace lily · Posted

      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
    • Smith-Ronald
      Lymph nodes

      By Smith-Ronald · Posted

      Enlarged lymph nodes in neck and groin with celiac are not uncommon. They can take time to reduce even after going gluten-free. Monitoring is key.
    • Bayb
      Trying to read my lab results

      By Bayb · Posted

      Hi Scott, yes I have had symptoms for years and this is the second GI I have seen and he could not believe I have never been tested. He called later today and I am scheduled for an endoscopy. Is there a way to tell how severe my potential celiac is from the results above? What are the chances I will have the biopsy and come back negative and we have to keep searching for a cause? 
×
×
  • Create New...