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
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,076
    • Most Online (within 30 mins)
      7,748
    Monica L
    Newest Member
    Monica L
    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

    • cristiana
      Shingles - Could It Be Related to Gluten/ Celiac

      By cristiana · Posted

      Thank you for your thoughtful contribution, @Tazfromoz. I live in the UK and the National Health Service funds free vaccines for people deemed to be at heightened risk.  I was pleasantly surprised to discover that as a coeliac in my 50s I was eligible for this vaccine, and didn't think twice when it was offered to me.  Soon after diagnosis I suffered mystery symptoms of burning nerve pain, following two separate dermatomes, and one GP said he felt that I had contracted shingles without the rash aka zoster sine herpete.  Of course, without the rash, it's a difficult diagnosis to prove, but looking back I think he was completely spot on.  It was miserable and lasted about a year, which I gather is quite typical. For UK coeliacs reading this, it is worth having a conversation with your GP if you haven't been vaccinated against shingles yet, if you are immunosuppressed or over 50. I have just googled this quickly - it is a helpful summary which I unashamedly took from AI, short for time as I am this morning!   My apologies. In the UK, coeliac patients aren't automatically eligible for the shingles jab unless they're severely immunosuppressed or over the general age for vaccination (currently 50+) but Coeliac UK recommends discussing the vaccine with a GP due to potential splenic dysfunction, which can increase risk, even if not routine for all coeliacs. Eligibility hinges on specific criteria like weakened immunity (chemo, certain meds) or age, with the non-live Shingrix vaccine offered in two doses to those deemed high-risk, often starting from age 18 for the immunocompromised.
    • Tazfromoz
      Shingles - Could It Be Related to Gluten/ Celiac

      By Tazfromoz · Posted

      My understanding, and ex I erience is that we coeliacs are likely to suffer more extreme reactions from viruses. Eg we are more likely to be hospitalised with influenza. So, sadly, your shingles may be worse because you are coeliac. So sorry you had to go through this. My mother endured shingles multiple times. She was undiagnosed with coeliac disease until she was 65. Me at 45. I've had the new long lasting vaccine. It knocked me around badly, but worth it to avoid shingles.
    • hjayne19
      Celiac Screening

      By hjayne19 · Posted

      Hi all,  Looking for some advice. I started having some symptoms this past summer like night sweats and waking at 4 am and felt quite achy in my joints. I was training heavily for cycling for a few weeks prior to the onset of these symptoms starting. I have had low Ferratin for about 4 years (started at 6) and usually sits around 24 give or take. I was doing some research and questioned either or not I might have celiac disease (since I didn’t have any gastric symptoms really). My family doctor ran blood screening for celiac. And my results came back: Tissue Transglutaminase Ab IgA HI 66.6 U/mL Immunoglobulin IgA 1.73 g/ My doctor then diagnosed me with celiac and I have now been gluten free for 3 months. In this time I no longer get night sweats my joint pain is gone and I’m still having trouble sleeping but could very much be from anxiety. I was since referred to an endoscopy clinic to get a colonoscopy and they said I should be getting a biopsy done to confirm celiac. In this case I have to return to eating gluten for 4-6 weeks before the procedure. Just wanted some advice on this. I seem to be getting different answers from my family physician and from the GI doctor for a diagnosis.    Thanks,  
    • yellowstone
      Cold/flu or gluten poisoning?

      By yellowstone · Posted

      Cold/flu or gluten poisoning? Hello. I've had another similar episode. I find it very difficult to differentiate between the symptoms of a cold or flu and those caused by gluten poisoning. In fact, I don't know if my current worsening is due to having eaten something that disagreed with me or if the cold I have has caused my body, which is hypersensitive, to produce symptoms similar to those of gluten poisoning.        
    • Churro
      Celiac disease symptoms

      By Churro · Posted

      I'm no longer dealing with constipation. I got my liver test last month and it was in normal range. Two years ago I did have a vitamin D deficiency but I'm know taking vitamin D3 pills. Last month I got my vitamin D checked and it was in normal range. I don't believe I've had my choline checked. However, I do drink almond milk eat Greek yogurt on a daily basis. 
×
×
  • 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.