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

Getting To A Negative Celiac Panel

lucky97

By lucky97
in Coping with Celiac Disease

Recommended Posts

lucky97 Explorer
lucky97
Posted

Hi there,

I hope that is the way to word this topic.

I've been eating gluten free since about last December at the adivce of the specialist. I had all the testing and got my official diagnosis of Celiac in Feb. 2011.

It's now September 2011 and he says I'm still "positive" for Celiac, which to me means there must still be some gluten in my system? He says my readings are "going down" each visit but I thought by now I shouldn't be "positive" for it anymore. He also mentioned something about the "titers" but didn't really understand him.

He didn't seem overly concerned but I am...when I hear talk about white blood cells and all I get nervous. My WBC count is average but very low average.

I do follow a strict gluten-free diet and went through the weight loss phase and have now gained back 5-10 pounds (I lost 20 when I got sick but some was beer weight for sure!).

I went to drinking safe hard ciders, mainly Stongbow, even having up to four a night.

Can the alcohol in the hard cider be hampering my recovery? My thyroid reading is a hair under average which is also new.

I've made some gluten "mistakes" but they were incidental...oh I know fairly quickly if I made a mistake and you know what I mean.

Soooo...is it normal to still be testing "positive" on your celiac panel (but a progressing downward trend) after 10 months? I guess I'm getting worried about perhaps the more serious underlying condition that celiacs are in a higher catagory to develop. However, I guess the doctor would want to see me again in less than four months if he was seeing something more concerning. I dunno.

I loved going to BW3 for only wings and Strongbow but, wondering if I'm getting cross-contaminated there (even though the wings...plain are gluten free...are prepared in a dedicated fryer and I get the gluten free sauces on the side) I stopped going about two weeks ago. Rats.

I cannot think of any other source I would still be getting gluten...I'm a label-reader and looker-upper on the web for everything I eat, and I don't do the processed foods unless they say gluten free.

Thanks.

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

Celiac.com Sponsor (A8-M):


shadowicewolf Proficient
shadowicewolf
Posted

i heard it takes between 6 months to a year for it to balance out, as it were.

frieze Community Regular
frieze
Posted

Hi there,

I hope that is the way to word this topic.

I've been eating gluten free since about last December at the adivce of the specialist. I had all the testing and got my official diagnosis of Celiac in Feb. 2011.

It's now September 2011 and he says I'm still "positive" for Celiac, which to me means there must still be some gluten in my system? He says my readings are "going down" each visit but I thought by now I shouldn't be "positive" for it anymore. He also mentioned something about the "titers" but didn't really understand him.

He didn't seem overly concerned but I am...when I hear talk about white blood cells and all I get nervous. My WBC count is average but very low average.

I do follow a strict gluten-free diet and went through the weight loss phase and have now gained back 5-10 pounds (I lost 20 when I got sick but some was beer weight for sure!).

I went to drinking safe hard ciders, mainly Stongbow, even having up to four a night.

Can the alcohol in the hard cider be hampering my recovery? My thyroid reading is a hair under average which is also new.

I've made some gluten "mistakes" but they were incidental...oh I know fairly quickly if I made a mistake and you know what I mean.

Soooo...is it normal to still be testing "positive" on your celiac panel (but a progressing downward trend) after 10 months? I guess I'm getting worried about perhaps the more serious underlying condition that celiacs are in a higher catagory to develop. However, I guess the doctor would want to see me again in less than four months if he was seeing something more concerning. I dunno.

I loved going to BW3 for only wings and Strongbow but, wondering if I'm getting cross-contaminated there (even though the wings...plain are gluten free...are prepared in a dedicated fryer and I get the gluten free sauces on the side) I stopped going about two weeks ago. Rats.

I cannot think of any other source I would still be getting gluten...I'm a label-reader and looker-upper on the web for everything I eat, and I don't do the processed foods unless they say gluten free.

Thanks.

gluten free on processed foods, doesn't really mean gluten free.....perhaps under 20 ppm....if you eat too much of that you will being taking in too much gluten and thereby slowing the clearing of antibodies....

ravenwoodglass Mentor
ravenwoodglass
Posted

It can take some time for panels to come back negative. You say your are going down with each recheck which is good. If your symptoms have resolved it is likely that it is just taking a while for your levels to go down.

lucky97 Explorer
lucky97
Posted
  • Author

What readings in my blood tests should I be looking at to follow this celiac panel? Gawd knows the cost of this blood work...thanks!

Still cutting out the BW3 wings anyway until my next blood work-up in December.

Thanks!

lucky97 Explorer
lucky97
Posted
  • Author

Sorry to ask again...what readings of the blood workup comprise the celiac panel?

Thank you much!

What readings in my blood tests should I be looking at to follow this celiac panel? Gawd knows the cost of this blood work...thanks!

Still cutting out the BW3 wings anyway until my next blood work-up in December.

Thanks!

ravenwoodglass Mentor
ravenwoodglass
Posted

Sorry to ask again...what readings of the blood workup comprise the celiac panel?

Thank you much!

Ask your doctor to give you copies of your blood work results. That way you can see how much the results have gone down.

tTG-IgA or tissue transglutaminase-IgA

Antigliadin IgG

Antigliadin IGA

Total IGA

There is also a newer one that I think is DGP (could be wrong about the initials as it is early and I haven't had a full cup of coffee yet)

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

Celiac.com Sponsor (A8-M):


Skylark Collaborator
Skylark
Posted

As long as the readings are going down and you're feeling better, you're doing fine.

T.H. Community Regular
T.H.
Posted

While some people are healed by 1 year, some can take longer. I took about 2 years to fully heal.

If your numbers are still going down, that's a good sign. If they flatten out, but are still high, then you may need to start hunting down potential gluten cc. But for now, seems like it's going the right way. :-)

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. lizzie42
      - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Low iron and vitamin d

      Hi, I posted before about my son's legs shaking after gluten. I did end up starting him on vit b and happily he actually started sleeping better and longer. Back to my 4 year old. She had gone back to meltdowns, early wakes, and exhaustion. We tested everything again and her ferritin was lowish again (16) and vit d was low. After a couple weeks...
    2. Scott Adams
      - Scott Adams replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Celiac disease is the most likely cause, but here are articles about the other possible causes:
    3. Scott Adams
      0

      Celiac Disease and Longevity: Can Treatment and Healing Improve Long-Term Survival?

    4. xxnonamexx
      - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    5. cristiana
      - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result. I am interested to know, is your gastroenterologist concerned? Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,208
    • Most Online (within 30 mins)
      7,748
    Mike Maurillo
    Newest Member
    Mike Maurillo
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • lizzie42
      Low iron and vitamin d

      By lizzie42 · Posted

      Hi, I posted before about my son's legs shaking after gluten. I did end up starting him on vit b and happily he actually started sleeping better and longer.  Back to my 4 year old. She had gone back to meltdowns, early wakes, and exhaustion. We tested everything again and her ferritin was lowish again (16) and vit d was low. After a couple weeks on supplements she is cheerful, sleeping better and looks better. The red rimmed eyes and dark circles are much better.   AND her Ttg was a 3!!!!!! So, we are crushing the gluten-free diet which is great. But WHY are her iron and vit d low if she's not getting any gluten????  She's on 30mg of iron per day and also a multivitamin and vit d supplement (per her dr). That helped her feel better quickly. But will she need supplements her whole life?? Or is there some other reason she's not absorbing iron? We eat very healthy with minimal processed food. Beef maybe 1x per week but plenty of other protein including eggs daily.  She also says her tummy hurts every single morning. That was before the iron (do not likely a side effect). Is that common with celiac? 
    • Scott Adams
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By Scott Adams · Posted

      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
    • xxnonamexx
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By xxnonamexx · Posted

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By cristiana · Posted

      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By trents · Posted

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
×
×
  • 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.