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

How Long Did It Take For Your Blood Levels To Return To "normal"


pupok

Recommended Posts

pupok Rookie

I was diagnosed with Celiac by blood test and biopsy a little over 7 months ago. I immediately went gluten-free and was being very careful about it. At the time of diagnosis my levels for everything on the celiac panel were very high, some off the charts.

I just had a follow-up blood test, and the doctor said my levels have improved from where they were but I'm still in the positive range, so I must be getting gluten somehow.

Someone on this board mentioned that it may take longer than 7 months for my levels to return to normal even if I'm not getting any gluten. So, how long did it take for you to get a normal blood test?

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



SGWhiskers Collaborator
I was diagnosed with Celiac by blood test and biopsy a little over 7 months ago. I immediately went gluten-free and was being very careful about it. At the time of diagnosis my levels for everything on the celiac panel were very high, some off the charts.

I just had a follow-up blood test, and the doctor said my levels have improved from where they were but I'm still in the positive range, so I must be getting gluten somehow.

Someone on this board mentioned that it may take longer than 7 months for my levels to return to normal even if I'm not getting any gluten. So, how long did it take for you to get a normal blood test?

I got retested at 3 and 9 months. At 3 months, most of my levels were normal or significantly decreased. At 9 months all but one were normal with the one that was not normal about 60% of what it was at diagnosis. I think I'm pretty sensitive and was/am getting cc from somewhere every few weeks or so. I've kept print outs of all my labs of any kind through the years. It is nice if I want to research something on my own to have my results. Also nice with this celiac disease to be able to see the proof of changes and pat myself on the back.

Link to comment
Share on other sites
elle's mom Contributor

I would also like to hear many answers to this same question.

My now 4 yo dd was diagnosed at age 2 1/2 and her IgAtTG was over 1000 (yes, that's 3 zeros!) initially. At 3 months, they were down to the 300 range. I was scared to get them checked again due to them still being so high. I thought we must be doing something wrong. After 17 months on the gluten-free diet, they were way down to 44, but still not within normal range. Now, I do not know if this is due to continual light-grade unintentional cc (she NEVER sneaks, she is very good about it) or maybe it just takes this long when the number is so high to begin with. It is making me (and her) totally paranoid. I will NOT let her eat out at all any more, or anything not prepared by myself or my husband. We also thought there was a slight chance maybe the babysitter was accidentally "crumbing" her or something. Our home has recently become 100% gluten-free (hopefully) so we're praying to eliminate any possibility of cc. I'm contemplating whether or not to let her go to pre-school come fall.

My other question is if your levels are higher than they should be how much time should you let go by before they are likely to come down if you aren't still getting glutened?

Link to comment
Share on other sites
Puddy Explorer

I was retested at 1 month, 3 months and 9 months. My numbers had dropped at the 1 month and 3 month tests and were in the normal range at 9 months. I was tested again 6 months after that and they are still in the normal range. I am not supersensitive and get no symptoms when glutened. I have to rely on my bloodwork to know if I'm following the diet correctly. So I, also, ask for copies of the tests each time to see if any of the numbers have risen at all. Even if they are considered in the 'normal' range I just want to make sure they aren't starting to slide in the wrong direction.

Link to comment
Share on other sites
oceangirl Collaborator

2 YEARS! for my tTG to get into normal range. That is with never eating out and making ALL my meals from whole foods. From scratch. AND with a home that went "gluten free" with two teenagers, a spousal equivalent, 3 dogs, 5 cats and a house rabbit. (God, I must be talking about someone else from a bad novel...)

That said, I was still discovering sneaky places of hidden gluten and am ridiculously super sensitive!

It takes TIME!

good luck,

lisa

Link to comment
Share on other sites

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. - trents replied to mishyj's topic in Coping with Celiac Disease
      3

      Why?

    2. - trents replied to mishyj's topic in Coping with Celiac Disease
      3

      Why?

    3. - mishyj replied to mishyj's topic in Coping with Celiac Disease
      3

      Why?

    4. - mishyj posted a topic in Coping with Celiac Disease
      3

      Why?

    5. - cristiana replied to Aussienae's topic in Coping with Celiac Disease
      64

      Constant low back, abdominal and pelvic pain!


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,216
    • Most Online (within 30 mins)
      7,748

    William day
    Newest Member
    William day
    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

    • trents
      "her stool study showed she had extreme reactions to everything achievement on it long course of microbials to treat that." The wording of this part of the sentence does not make any sense at all. I don't mean to insult you, but is English your first language? This part of the sentence sounds like it was generated by translation software.
    • trents
      What kind of stool test was done? Can you be more specific? 
    • mishyj
      Perhaps I should also have said that in addition to showing a very high response to gluten, her stool study showed that she had extreme reactions to everything achievement on it long course of microbials to treat that.
    • mishyj
      My daughter has celiac disease and has had for a long time. She fell loses strictly gluten-free diet and recently got rid of all cutting boards in any gluten in her house at all. She just had a stool test and it came back showing of gigantic response to gluten in her diet. What could be going on since she doesn't eat any gluten and is very careful about any kind of hidden glue? Help!
    • cristiana
      I think sometimes the pain described here can be a result of a sort of 'perfect storm' of contributing factors.  Recently I had an appalling bout of lower back pain, lower burning gut pain and what felt like cramps.  I then started to think about what could have caused it and I realised it was several things that had set it off: I'd been carrying heavy luggage (back strain); I had been sitting down in a car for too long and wearing a tight belt (I have pudendal nerve issues and sacroiliac issues and this exacerbates the pain), and I had bloating and burning pain in my colon caused by eating too much soy, latte and caffeine, I guess putting further pressure in the lower abdomen.  I had this same pain prior to my diagnosis and a couple of years post-diagnosis, I'd quite forgotten how unpleasant it was. 
×
×
  • Create New...