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
      131,991
    • Most Online (within 30 mins)
      7,748
    ZENken
    Newest Member
    ZENken
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Wheatwacked
      Outgrow celiac?

      By Wheatwacked · Posted

      Testing can't alone be trusted.  Else why would it take so many years of testing and retesting and misdiagnosis to finally be told, yes you have Celiac Disease. As to what to eat, I like pre 1950 style food.  Before the advent of TV dinners.  Fresh food is better for you, and cooking from scratch is cheaper.  Watch Rachel Ray's 30 Minute Meals for how to cook.  Keep in mind that she is not gluten free, but her techniques are awesome.  Just use something else instead of wheat, barley, rye. Dr Fuhrman is a ex cardiologist.  His book Eat to Live and Dr Davis' book Wheatbelly were instrumental in my survival.
    • Scott Adams
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Scott Adams · Posted

      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch--thanks for the tip about Dupixent, and I've added it to the article:  
    • Scott Adams
      New Celiac Mama in My 30s

      By Scott Adams · Posted

      I just want to clarify that what I posted is a category of research summaries we've done over the years, and nearly each one shows that there is definitely a connection to celiac disease and migraine headaches. The latest study said: "the study did indicate some potential causal associations between celiac disease and migraine with or without aura, as well as between migraine without aura and ulcerative colitis...this study did not find evidence of a shared genetic basis..." Anyway, there is definitely a connection, and you can go through more of the articles here if you're interested: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/migraine-headaches-and-celiac-disease/
    • SusanJ
      Celiac and dermatitis herpetiformis has taken Me from Me

      By SusanJ · Posted

      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
    • knitty kitty
      New Celiac Mama in My 30s

      By knitty kitty · Posted

      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body.  See my blog.  Click on my name to go to my page, scroll to drop down menu "activities" and select blog.   So glad you're motivated to see the dietician!  We're always happy to help with questions.  Keep us posted on your progress! 
×
×
  • 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.