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 Levels At Dx And After Recovery


gregsgirl63

Recommended Posts

gregsgirl63 Newbie

hello,

i am new to celiac. was diagnosed on a fluke per se this fall. went to the rheumatologist thinking he was going to tell me i had MS or lupus. was happy to hear i had celiac (even to type this it sounds strange, but much better than MS or lupus i would say).

my tTG came back at 257. i have not seen anyone else with such a high number. which is scary. actually i know one person who was higher. the day i was diagnosed, my rheumotologist, who is friends with my sister, told her she had the disease (merely b/c she fit the bill in every way shape and form-PCOD, hypothryoid, headaches, abdominal pain and problems) and she had a tTG of 327!. that was 9/1/2008. on 4/10/2009 my tTG was down to 26, but my 2nd f/u endoscopy still showed persistant villi damage.

are these numbers crazy or in line with others history?

my symptoms over the past year, that i can now look back and blame on the celiac include, hair loss, bloating, IBS like symptoms, fatigue, poor immune response, (i was ill with lots of colds etc.) cystitis. i became really sick last summer with mono and within a 4 weeks dropped 12 pounds (i was eating like a pig, with weight loss too.) that is when i was diagnosed. since going gluten free i have gained back the 12 pounds plus another 12, my hair is not falling out anymore (i use gluten free shampoo). i have no more bloating, my periods are not painful anymore, i do not crave food like i used to. it is really amazing. so much more to share and not enough time to go into it all.

how long did it take for your metabolism to get back on track? ii still feel like my body is finding a hard time getting back into a normal groove. i have had recent problems with back-ne (mild) and at times, really crave food. went from absorbing no nutrition to absorbing alot and i think my system is still having a hard time getting back on track, finding its way. i am interested to hear about others in this way. thanks for your time.


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



Celiac.com Sponsor (A8-M):



MySuicidalTurtle Enthusiast

It is great to hear how well you are doing! It takes a good while for your body, mentally and physically, to get it's game together. You have to recover form years of damage. Personally, I feel like I have to watch my body much more carefully than I did before my diagnosis. It is worth it, though, to be feeling better.

Welcome to the forum!

nutralady2001 Newbie

My tTG was 300 (0-15) when diagnosed .

Archived

This topic is now archived and is closed to further replies.

  • 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. - Scott Adams replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

    2. - MogwaiStripe replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      Gluten Issues and Vitamin D

    3. - Butch68 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

    4. - trents replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      Taking Probiotics but Still Getting Sick After Gluten – Advice?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,218
    • Most Online (within 30 mins)
      7,748

    tiffhorn14
    Newest Member
    tiffhorn14
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
×
×
  • 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.