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Getting To A Negative Celiac Panel

lucky97

By lucky97
in Coping with Celiac Disease

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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.

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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)

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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. :-)

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