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. trents
      - trents replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Blood Test for Celiac wheat type matters?

      Wheatwacked, are you speaking of the use of potassium bromide and and azodicarbonamide as dough modifiers being controlling factor for what? Do you refer to celiac reactions to gluten or thyroid disease, kidney disease, GI cancers?
    2. Scott Adams
      - Scott Adams replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Blood Test for Celiac wheat type matters?

      Excess iodine supplements can cause significant health issues, primarily disrupting thyroid function. My daughter has issues with even small amounts of dietary iodine. While iodine is essential for thyroid hormone production, consistently consuming amounts far above the tolerable upper limit (1,100 mcg/day for adults) from high-dose supplements can trigger...
    3. Wheatwacked
      - Wheatwacked replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Blood Test for Celiac wheat type matters?

      In Europe they have banned several dough modifiers potassium bromide and and azodicarbonamide. Both linked to cancers. Studies have linked potassium bromide to kidney, thyroid, and gastrointestinal cancers. A ban on it in goes into effect in California in 2027. I suspect this, more than a specific strain of wheat to be controlling factor. Sourdough...
    4. jenniber
      - jenniber replied to tiffanygosci's topic in Introduce Yourself / Share Stuff
      5

      Celiac support is hard to find

      same! how amazing you have a friend who has celiac disease. i find myself wishing i had someone to talk about it with other than my partner (who has been so supportive regardless)
    5. RMJ
      - RMJ replied to TheDHhurts's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      need help understanding testing result for Naked Nutrition Creatine please

      They don’t give a sample size (serving size is different from sample size) so it is hard to tell just what the result means. However, the way the result is presented does look like it is below the limit of what their test can measure, so that is good.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,111
    • Most Online (within 30 mins)
      7,748
    Donald Carr
    Newest Member
    Donald Carr
    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

    • trents
      Blood Test for Celiac wheat type matters?

      By trents · Posted

      Wheatwacked, are you speaking of the use of potassium bromide and and azodicarbonamide as dough modifiers being controlling factor for what? Do you refer to celiac reactions to gluten or thyroid disease, kidney disease, GI cancers? 
    • Scott Adams
      Blood Test for Celiac wheat type matters?

      By Scott Adams · Posted

      Excess iodine supplements can cause significant health issues, primarily disrupting thyroid function. My daughter has issues with even small amounts of dietary iodine. While iodine is essential for thyroid hormone production, consistently consuming amounts far above the tolerable upper limit (1,100 mcg/day for adults) from high-dose supplements can trigger both hyperthyroidism or hypothyroidism, worsen autoimmune thyroid diseases like Hashimoto's, and lead to goiter. Other side effects include gastrointestinal distress. The risk is highest for individuals with pre-existing thyroid conditions, and while dietary iodine rarely reaches toxic levels, unsupervised high-dose supplementation is dangerous and should only be undertaken with medical guidance to avoid serious complications. It's best to check with your doctor before supplementing iodine.
    • Wheatwacked
      Blood Test for Celiac wheat type matters?

      By Wheatwacked · Posted

      In Europe they have banned several dough modifiers potassium bromide and and azodicarbonamide.  Both linked to cancers.  Studies have linked potassium bromide to kidney, thyroid, and gastrointestinal cancers.  A ban on it in goes into effect in California in 2027. I suspect this, more than a specific strain of wheat to be controlling factor.  Sourdough natural fermentation conditions the dough without chemicals. Iodine was used in the US as a dough modifier until the 1970s. Since then iodine intake in the US dropped 50%.  Iodine is essential for thyroid hormones.  Thyroid hormone use for hypothyroidism has doubled in the United States from 1997 to 2016.   Clinical Thyroidology® for the Public In the UK, incidently, prescriptions for the thyroid hormone levothyroxine have increased by more than 12 million in a decade.  The Royal Pharmaceutical Society's official journal Standard thyroid tests will not show insufficient iodine intake.  Iodine 24 Hour Urine Test measures iodine excretion over a full day to evaluate iodine status and thyroid health. 75 year old male.  I tried adding seaweed into my diet and did get improvement in healing, muscle tone, skin; but in was not enough and I could not sustain it in my diet at the level intake I needed.  So I supplement 600 mcg Liquid Iodine (RDA 150 to 1000 mcg) per day.  It has turbocharged my recovery from 63 years of undiagnosed celiac disease.  Improvement in healing a non-healing sebaceous cyst. brain fog, vision, hair, skin, nails. Some with dermatitis herpetiformis celiac disease experience exacerbation of the rash with iodine. The Wolff-Chaikoff Effect Crying Wolf?
    • jenniber
      Celiac support is hard to find

      By jenniber · Posted

      same! how amazing you have a friend who has celiac disease. i find myself wishing i had someone to talk about it with other than my partner (who has been so supportive regardless)
    • RMJ
      need help understanding testing result for Naked Nutrition Creatine please

      By RMJ · Posted

      They don’t give a sample size (serving size is different from sample size) so it is hard to tell just what the result means.  However, the way the result is presented  does look like it is below the limit of what their test can measure, so that is good.
×
×
  • 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.