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

Gi Doc Ordered Another Ttg Test


moosemalibu

Recommended Posts

moosemalibu Collaborator

So I've only been gluten free since October 25th after my biopsy was performed. Will 6 weeks be a good indication of how I'm doing as far as antibodies go? I thought that antibodies could be elevated for quite some time (years even) after going gluten free...?

 

What's done is done. I already went and had my blood drawn for that plus a fasted lipid panel.

 

Jamie


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

Why don't you show your doctor information from celiac experts?

Open Original Shared Link

moosemalibu Collaborator

Why don't you show your doctor information from celiac experts?

Open Original Shared Link

 

Yeah.. that is what I thought.. Sigh. I get a totally new doctor in the new year with Obama Care discontinuing my old insurance so I get to find a whole new doctor to train (or not train.. maybe a good thing).

kareng Grand Master

Yeah.. that is what I thought.. Sigh. I get a totally new doctor in the new year with Obama Care discontinuing my old insurance so I get to find a whole new doctor to train (or not train.. maybe a good thing).

At least you will know not to get upset.

They discussed a study at ICDS, the point of the study isn't the interesting part right now. What was interesting is - they took Celiacs with negative TTGs. Fed them teeny tiny ( more than the 20 ppm though) amounts of gluten for 2 weeks. There TTGs didn't go positive. But 2 weeks later, after everyone went back to gluten-free food, the TTGs were positive. The point being - your TTG might rise for a while after you start eating gluten-free.

moosemalibu Collaborator

Very interesting, indeed. Thanks for sharing, Karen.

KCG91 Enthusiast

Just from anecdotal experience - due to moving countries I got the results of my first blood test and went gluten-free for three weeks. I then had to eat gluten again for a week prior to another blood test. Both tests read the same despite the three weeks 'off'.

 

Going on the above and what I've seen elsewhere, that gluteny week might not have really affected my antibody levels at the time the blood was taken (GP had it half right then!) and presumably they didn't drop during the three weeks off? 

IrishHeart Veteran

Not sure why he is ordering the test at this stage at all. Totally pointless.

 

It takes 6 months for major healing to occur, so what's his reasoning? 

 

Do not let this stress you out, okay--no matter what the test results say. They may still be elevated, but

that's not an indicator of anything (you are not messing up, you do not have refractory sprue, you do not have some other disease) You are just still healing, hon.

 

Makes no sense to me. (shaking my head) 


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



Celiac.com Sponsor (A8-M):



moosemalibu Collaborator

Yay... another test to pay for that I did not need. Fantastic.

eers03 Explorer

I am one year out and my blood serum antibody markers plummeted from being gluten-free.  My TTG is still pretty elevated.  However, I am IGA Absent.  I was told that with IGA deficiency it can take longer than the average Celiac to have my tissue antibody markers begin to decline.

IrishHeart Veteran

Yay... another test to pay for that I did not need. Fantastic.

well, he may have his reasons, but I'd love to hear what they were. (I am curious that way) LOL

you know...that  why? why? why thing you and I share?

 

Ask him nicely to tell you? 

NoGlutenCooties Contributor

*&#$ doctors... :angry:

moosemalibu Collaborator

well, he may have his reasons, but I'd love to hear what they were. (I am curious that way) LOL

you know...that  why? why? why thing you and I share?

 

Ask him nicely to tell you? 

 

Oh - I will ask him. Never fear. I'll report back when I get the call or email.

moosemalibu Collaborator

OK so I got my results back and a message from my doctor. He indicated that my titers were still elevated but had reduced from previous. He gave me access to the results. So... comparably they have reduced quite a bit. That at least is good to see. He said that he would like to re evaluate again in 2 months. I replied and sent him the link that Karen provided. He really has been a very good at listening and taking my concerns seriously. So I imagine if I didn't have to switch insurance he would have been a really good GI doc. He's a younger doctor so I feel like he may have been easier to talk to. Oh well.

 

So not a complete waste I guess. It actually makes me feel better to see them going down.

IrishHeart Veteran

Then, can I get a woot woot for missJamie yo?! woot woot!

moosemalibu Collaborator

Then, can I get a woot woot for missJamie yo?! woot woot!

 

Thanks Irish!! I am beyond happy to see some progress. :D

nvsmom Community Regular

Woot*Woot!   :D

 

Glad they are coming down already. :) I'm one whose tTG test took forever to come down. My last test was at about 15 month gluten-free and it finally had almost hit normal BUT I had started steroids so I'm sure that did something to the results.... The members on here helped me with my patience.  LOL

moosemalibu Collaborator

Woot*Woot!   :D

 

Glad they are coming down already. :) I'm one whose tTG test took forever to come down. My last test was at about 15 month gluten-free and it finally had almost hit normal BUT I had started steroids so I'm sure that did something to the results.... The members on here helped me with my patience.  LOL

 

Must be a recurring theme to start out with zero patience! LOL Here's to your numbers coming down and staying down real soon!

:) 

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Theresa2407 replied to Theresa2407's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Probiotics

    2. - KathyR37 replied to KathyR37's topic in Coping with Celiac Disease
      2

      New here

    3. - Scott Adams replied to KathyR37's topic in Coping with Celiac Disease
      2

      New here

    4. - KathyR37 posted a topic in Coping with Celiac Disease
      2

      New here

    5. - Scott Adams replied to Colleen H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Celiac attack confusion and anxiety


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,811
    • Most Online (within 30 mins)
      7,748

    Taraceliacmama
    Newest Member
    Taraceliacmama
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Theresa2407
      thank you for your advice.   I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated.  I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    • KathyR37
      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and  gloves when cooking for them. One huge problem I have is a gag reflex out of this world and if something doesn't taste good it is not going down. Most commercially made breads and such taste like old cardboard.Pastas are about the same. I did find one flour that I like and use it regularly, but it is so expensive! All gluten free food is way more expensive. I only eat twice a day because I cannot afford to buy all that. We live on a very low income so my food purchases are quite limited.
    • Scott Adams
      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are feelings many in the community know all too well. Your question about whether you should just eat what you want and manage the symptoms is a heartbreaking one, born from years of frustration. It's crucial to know that the diarrhea is a sign of ongoing damage to your small intestine from gluten, and simply managing the symptom with Imodium doesn't stop that internal harm or the risk of other complications. The fact that you are still getting sick within an hour of eating, even while trying to be gluten-free, is a huge red flag that something isn't right. This could be due to cross-contamination in your kitchen (e.g., using a shared toaster, colander, or condiment jars), hidden gluten in foods, or the possibility of another concurrent condition like refractory celiac disease. Don't give up!  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • KathyR37
      I am new here but celiac disease is not new to me. I was diagnosed with it at age 60. At the time I weighed a whopping 89 pounds. I was so ignorant to celiac so I buried myself in learning all about it and looking for food I could eat. I lost so much weight and stayed sick all the time. So to combat the sickness I was give all sorts of meds for loose bowels and vomiting. All that just made me sicker. Eventually I chucked it all and went back to eating like I had all my life. Now I am from the south and biscuits and gravy are a big part of our food, as are breaded foods, pasta, and sandwich bread. Through the years I would try to do the gluten free thing again and am doing it now. It has not helped any. Within and hour of eating I have to run to the bathroom. I am now 75 and am wondering if I should just forget it and eat what I like, take Immodium and live the best I can. I cannot eat before going anywhere for fear of embarrassing myself. Family and church dinners are out of the question unless I eat and run straight home. I am so frustrated I just want to sit down and cry or throw something. Does everyone go through all this?
    • Scott Adams
      This article, and the comments below it, may be helpful:    
×
×
  • 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.