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

Ttg at one year....waiting.

Fbmb

Recommended Posts

Fbmb Rising Star
Fbmb
Posted

Hi all!

its been a little while since I've been on here because I've been feeling pretty ok. It seemed like around 11 months things started to feel consistently normal for me. I've been grateful. My gastroenterologist had me repeat my ttg in July and then again today. When I was diagnosed it was sky high (>100) and in July it was 4. At the lab 0-3 is negative and 4-10 is a weak positive. I'm really hoping and praying it's negative now. I have reason to hope, because I feel ok - and it's been 4 months since my last test. Is it expected that it'll be normal at 1 year?

i know they always tell people to stick to their gluten filled diet until they're officially diagnosed, but I tell ya, I could have been off gluten for months and I still would have tested positive. Seems to take a while to get that number down. I'm trying to be patient with myself. I'm careful, I research, I ask questions, I cook for myself, I rarely eat out (unless it's at a reputable place for Celiacs), and I guess that's all I can do. 

Anyway, I'll keep you posted. Send me happy vibes ?

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

Celiac.com Sponsor (A8-M):


cristiana Veteran
cristiana
Posted

Glad you are feeling so much better!

I am also in the waiting room for ttg results.  Believe it or not, for some reason my usual consultant hasn't been giving me an annual test - although he has always tested liver enzymes which were wonky at diagnosis.  I saw another guy who thought it was high time to have the test again and so now I'm waiting - I think here in the UK it takes a few weeks to hear back.  

What I'll be interested in finding out is if the fact that I've been taking an iron supplement with gluten (unbeknonwst to me) will have affected my figures badly.  I'm so cross with myself as I take the gluten-free diet so seriously.

Anyway do give us your news.  Hope things continue well for you.

 

icelandgirl Proficient
icelandgirl
Posted

Hi fbmb!

So glad to hear that you've been feeling well!   I am excited to hear your results...it sounds like you have been doing a great job! ?

For me, at 6 months the antibodies were lower, but still positive.  The next time they were checked, between a year and a year and a half, they were negative.

Do let us know!

cyclinglady Grand Master
cyclinglady
Posted

The problem is no one really knows how fast antibodies can go down.  Researchers/experts have found that they can go down in as little as two weeks, but for some it can take a year or longer.  So, to be safe and to insure a correct diagnosis, experts recommend a full gluten diet 8 to 12 weeks prior to a  blood draw.  

Keep us posted.  I am so happy for you.  Keep up the good work.  ?

cristiana Veteran
cristiana
Posted
1 hour ago, icelandgirl said:

Hi fbmb!

So glad to hear that you've been feeling well!   I am excited to hear your results...it sounds like you have been doing a great job! ?

For me, at 6 months the antibodies were lower, but still positive.  The next time they were checked, between a year and a year and a half, they were negative.

Do let us know!

Hi Icelandgirl

Can you recall what the figures were when they wer lower?  I'd be interested to know.

C

icelandgirl Proficient
icelandgirl
Posted
34 minutes ago, cristiana said:

Hi Icelandgirl

Can you recall what the figures were when they wer lower?  I'd be interested to know.

C

Hi Cristiana,

It's hard to remember exactly, but somewhere in the low 20s.  This was DGP though as that was my positive test.  It has been much higher previously.  The next time it tested negative.

Fbmb Rising Star
Fbmb
Posted
  • Author

The only test I have had done is the TTG because that's what I had done initially after taking matters into my own hands and going to my local health fair. Celiac is so common they do that screening at our health fair. My number was so high that my doctor didn't order other labs and went straight for a biopsy, which showed stage 3b damage. I've had my blood re-drawn (the TTG IGA) at 2 months and then at 9 months, and now. It's always just been that TTG IGA test. He hasn't ordered anything else, and has said it's not necessary for me to get the other panels done. I think that's probably because all he had at first was the TTG and he followed protocol by going for the biopsy since my number was so high. They didn't do the IGA deficiency test on me first, but Gemini said that if I were deficient my test would have been falsely negative, rather than >100. Plus my intestines showed blunting and hyperplasia, so that's how he confirmed his diagnosis. I am going to ask him why he doesn't order me the other tests though, out of curiosity. I know that the TTG tests mostly for intestinal damage and that's likely how he's monitoring my internal healing. He's always said that as long as I feel ok and my TTG is normal he isn't worried about me and said that we can just touch base annually unless symptoms arise. I've always wondered a bit about the DGP because I've never had it done, but Dr. Kim said it's not necessary to have that done (in my case). I'm sure he knows why, but I've never asked. I know others on here have suggested that I have that done, but since my doctor hasn't ordered it I haven't had it done. 

The results usually come back within a week so I should know something soon. I'll repost to let you guys know how it's going. 

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

Celiac.com Sponsor (A8-M):


Fbmb Rising Star
Fbmb
Posted
  • Author
28 minutes ago, icelandgirl said:

Hi Cristiana,

It's hard to remember exactly, but somewhere in the low 20s.  This was DGP though as that was my positive test.  It has been much higher previously.  The next time it tested negative.

So, do they just test your DGP like they just test my TTG?

icelandgirl Proficient
icelandgirl
Posted
54 minutes ago, Fbmb said:

So, do they just test your DGP like they just test my TTG?

Yep.  Initially I had the full panel.  DGP was the only positive and it's the only one my doctor orders now.

Fbmb Rising Star
Fbmb
Posted
  • Author
3 hours ago, icelandgirl said:

Yep.  Initially I had the full panel.  DGP was the only positive and it's the only one my doctor orders now.

Oh ok. So it seems like that makes sense for why my doctor only orders the TTG for me. It was the only test I had, but it was >100, and normal is 0-3 lol

squirmingitch Veteran
squirmingitch
Posted

I'm just thrilled to hear how much better you're feeling now Fbmb!!! I know at first there, it was a bit rocky. You sound so much more relaxed now and much more sure of the diet. Wonderful news!

I have not a worry in the world that your test will come back in normal range. You were only 1 point over last time the test was done. I know you are very careful & adhere to the diet strictly but I will wish you luck anyway even though I'm sure you don't need it. 

Fbmb Rising Star
Fbmb
Posted
  • Author

Hey guys!

got my results back today. My TTG, IGA is now at a normal 3! It seems like it takes longer for those antibodies to drop as time goes on and as they get lower and lower. It was at 4 four months ago so I thought maybe it would be at 1 or 2, but I'll take 3 :) 

icelandgirl Proficient
icelandgirl
Posted
1 hour ago, Fbmb said:

Hey guys!

got my results back today. My TTG, IGA is now at a normal 3! It seems like it takes longer for those antibodies to drop as time goes on and as they get lower and lower. It was at 4 four months ago so I thought maybe it would be at 1 or 2, but I'll take 3 :) 

Wonderful news!  Congratulations!! ??

Fbmb Rising Star
Fbmb
Posted
  • Author

Thanks for your happy vibes!

squirmingitch Veteran
squirmingitch
Posted

3 is GOOD! Better than 4. So now you are in the normal range. Good work girl!!!!

Now celebrate. 

I'm so happy for you!:D

cristiana Veteran
cristiana
Posted
7 hours ago, squirmingitch said:

3 is GOOD! Better than 4. So now you are in the normal range. Good work girl!!!!

Now celebrate. 

I'm so happy for you!:D

Brilliant - well done!

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. tiffanygosci
      - tiffanygosci replied to tiffanygosci's topic in Introduce Yourself / Share Stuff
      1

      Celiac support is hard to find

      EDIT: I did find a monthly Zoom meeting for Celiacs through the Celiac Disease Foundation, so I'll be able to talk with some other people on January 15. And I also found a Celiac Living podcast on Spotify made by a celiac. I feel a little bit better now and I am still hoping I will find some more personal connections in my area.
    2. trents
      - trents replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      1

      Help understand results

      Welcome to the celiac.com community, @mamaof7! It means for the one celiac disease antibody test that was ordered, she tested negative. However, other tests should have been ordered, especially for someone so young who would have an immature immune system where there would be a high probability of being IGA deficient. The one test that was ordered...
    3. mamaof7
      - mamaof7 posted a topic in Parents, Friends and Loved Ones of Celiacs
      1

      Help understand results

      For reference, daughter is 18 mths old. Was having painful severe constipation with pale stool and blood also bloating (tight extended belly.) Liver and gallbladder are normal. Ultrasound was normal. Dr ordered celiac blood test. We took her off gluten after blood draw. She is sleeping better, no longer bloated and stools are still off color but not painful...
    4. Dizzyma
      - Dizzyma replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Newly diagnosed mam to coeliac 11 year old

      Hi Trent and Cristiana, thank you so much for taking the time out to reply to me. My daughters GP requested bloods, they came back as showing a possibility of celiac disease, she advised me to continue feeding gluten as normal and wait on a hospital appointment. When we got that the doctor was quite annoyed that the gp hadn’t advised to go gluten free i...
    5. tiffanygosci
      - tiffanygosci posted a topic in Introduce Yourself / Share Stuff
      1

      Celiac support is hard to find

      I have been feeling so lonely in this celiac disease journey (which I've only been on for over 4 months). I have one friend who is celiac, and she has been a great help to me. I got diagnosed at the beginning of October 2025, so I got hit with all the major food holidays. I think I navigated them well, but I did make a couple mistakes along the way regarding...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,955
    • Most Online (within 30 mins)
      7,748
    JodyBledsoe
    Newest Member
    JodyBledsoe
    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

    • tiffanygosci
      Celiac support is hard to find

      By tiffanygosci · Posted

      EDIT: I did find a monthly Zoom meeting for Celiacs through the Celiac Disease Foundation, so I'll be able to talk with some other people on January 15. And I also found a Celiac Living podcast on Spotify made by a celiac. I feel a little bit better now and I am still hoping I will find some more personal connections in my area.
    • trents
      Help understand results

      By trents · Posted

      Welcome to the celiac.com community, @mamaof7! It means for the one celiac disease antibody test that was ordered, she tested negative. However, other tests should have been ordered, especially for someone so young who would have an immature immune system where there would be a high probability of being IGA deficient.  The one test that was ordered was an IGA-based antibody test. It is not the only IGA antibody test for celiac disease that can be run. The most common one ordered by physicians is the TTG-IGA. Whenever IGA antibody tests are ordered, a "total IGA" test should be included to check for IGA deficiency. In the case of IGA deficiency, all other IGA tests results will be inaccurate. There is another category of celiac disease antibody tests that can be used in the case of IGA deficiency. They are known as IGG tests. I will attach an article that gives an overview of celiac disease antibody tests. All this to say, I would not trust the results of the testing you have had done and I would not rule out your daughter having celiac disease. I would seek further testing at some point but it would require your daughter to have been eating normal amounts of gluten for weeks/months in order for the testing to be valid. It is also possible she does not have celiac disease (aka, "gluten intolerance") but that she has NCGS (Non Celiac Gluten Sensitivity, or just "gluten sensitivity" for short) which is more common. The difference is that celiac disease is an autoimmune disorder that damages the lining of the small bowel whereas NCGS does not autoimmune in nature and does not damage the lining of the small bowel, though the two conditions share many of the same symptoms. We have testing to diagnose celiac disease but there are no tests for NCGS. To arrive at a diagnosis of NCGS, celiac disease must first be ruled out. A gluten free diet is the solution to both maladies.   
    • mamaof7
      Help understand results

      By mamaof7 · Posted

      For reference, daughter is 18 mths old. Was having painful severe constipation with pale stool and blood also bloating (tight extended belly.) Liver and gallbladder are normal. Ultrasound was normal. Dr ordered celiac blood test. We took her off gluten after blood draw. She is sleeping better, no longer bloated and stools are still off color but not painful.    "GLIADIN (DEAMID) AB, IGA FLU Value  0.84 Reference Range: 0.00-4.99 No further celiac disease serology testing to be performed. INTERPRETIVE INFORMATION: Deamidated Gliadin Peptide (DGP) Ab, IgA A positive deamidated gliadin (DGP) IgA antibody result is associated with celiac disease but is not to be used as an initial screening test due to its low specificity and only occasional positivity in celiac disease patients who are negative for tissue transglutaminase (tTG) IgA antibody."   Anyone know what in the world this means. She isn't scheduled to see GI until late April. 
    • Dizzyma
      Newly diagnosed mam to coeliac 11 year old

      By Dizzyma · Posted

      Hi Trent and Cristiana, thank you so much for taking the time out to reply to me.  My daughters GP requested bloods, they came back as showing a possibility of celiac disease, she advised me to continue feeding gluten as normal and wait on a hospital appointment. When we got that the doctor was quite annoyed that the gp hadn’t advised to go gluten free immediately as she explained that her numbers were so high that celiac disease was fairly evident. That doctor advised to switch to a gluten-free diet immediately which we did but she also got her bloods taken again that day as it made sense to double check considering she was maintaining a normal diet and they came back with a result of 128. The hospital doctor was so confident of celiac disease that she didn’t bother with any further testing. Cristiana, thank you for the information on the coeliac UK site however I am in the Rrpublic of Ireland so I’ll have to try to link in with supports there. I appreciate your replies I guess I’ll figure things as we go I just feel so bad for her, her skin is so sore around her mouth  and it looks bad at an age when looks are becoming important. Also her anxiety is affecting her sleep so I may have to look into some kind of therapy to help as I don’t think I am enough to help. thanks once again, it’s great to be able to reach out xx   
    • tiffanygosci
      Celiac support is hard to find

      By tiffanygosci · Posted

      I have been feeling so lonely in this celiac disease journey (which I've only been on for over 4 months). I have one friend who is celiac, and she has been a great help to me. I got diagnosed at the beginning of October 2025, so I got hit with all the major food holidays. I think I navigated them well, but I did make a couple mistakes along the way regarding CC. I have been Googling "celiac support groups" for the last couple days and there is nothing in the Northern Illinois area. I might reach out to my GI and dietician, who are through NW Medicine, to see if there are any groups near me. I cannot join any social media groups because I deleted my FB and IG last year and I have no desire to have them back (although I almost made a FB because I'm desperate to connect with more celiacs). I'm glad I have this forum. I am praying God will lead me to more people to relate to. In my opinion, celiac disease is like the only food- related autoimmune disease and it's so isolating. Thanks for walking alongside of me! I'm glad I know how to help my body but it's still not easy to deal with.
×
×
  • 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.