Ttg at one year....waiting.

[Fbmb]

Hi all!

its been a little while since I've been on here because I've been feeling pretty ok. It seemed like around 11 months things started to feel consistently normal for me. I've been grateful. My gastroenterologist had me repeat my ttg in July and then again today. When I was diagnosed it was sky high (>100) and in July it was 4. At the lab 0-3 is negative and 4-10 is a weak positive. I'm really hoping and praying it's negative now. I have reason to hope, because I feel ok - and it's been 4 months since my last test. Is it expected that it'll be normal at 1 year?

i know they always tell people to stick to their gluten filled diet until they're officially diagnosed, but I tell ya, I could have been off gluten for months and I still would have tested positive. Seems to take a while to get that number down. I'm trying to be patient with myself. I'm careful, I research, I ask questions, I cook for myself, I rarely eat out (unless it's at a reputable place for Celiacs), and I guess that's all I can do. 

Anyway, I'll keep you posted. Send me happy vibes ?

[cristiana]

Glad you are feeling so much better!

I am also in the waiting room for ttg results.  Believe it or not, for some reason my usual consultant hasn't been giving me an annual test - although he has always tested liver enzymes which were wonky at diagnosis.  I saw another guy who thought it was high time to have the test again and so now I'm waiting - I think here in the UK it takes a few weeks to hear back.  

What I'll be interested in finding out is if the fact that I've been taking an iron supplement with gluten (unbeknonwst to me) will have affected my figures badly.  I'm so cross with myself as I take the gluten-free diet so seriously.

Anyway do give us your news.  Hope things continue well for you.

 

[icelandgirl]

Hi fbmb!

So glad to hear that you've been feeling well!   I am excited to hear your results...it sounds like you have been doing a great job! ?

For me, at 6 months the antibodies were lower, but still positive.  The next time they were checked, between a year and a year and a half, they were negative.

Do let us know!

[cyclinglady]

The problem is no one really knows how fast antibodies can go down.  Researchers/experts have found that they can go down in as little as two weeks, but for some it can take a year or longer.  So, to be safe and to insure a correct diagnosis, experts recommend a full gluten diet 8 to 12 weeks prior to a  blood draw.  

Keep us posted.  I am so happy for you.  Keep up the good work.  ?

[cristiana]

  On 11/17/2017 at 2:56 PM, icelandgirl said:

Hi fbmb!

So glad to hear that you've been feeling well!   I am excited to hear your results...it sounds like you have been doing a great job! ?

For me, at 6 months the antibodies were lower, but still positive.  The next time they were checked, between a year and a year and a half, they were negative.

Do let us know!

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Hi Icelandgirl

Can you recall what the figures were when they wer lower?  I'd be interested to know.

C

[icelandgirl]

  On 11/17/2017 at 4:06 PM, cristiana said:

Hi Icelandgirl

Can you recall what the figures were when they wer lower?  I'd be interested to know.

C

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Hi Cristiana,

It's hard to remember exactly, but somewhere in the low 20s.  This was DGP though as that was my positive test.  It has been much higher previously.  The next time it tested negative.

[Fbmb]

The only test I have had done is the TTG because that's what I had done initially after taking matters into my own hands and going to my local health fair. Celiac is so common they do that screening at our health fair. My number was so high that my doctor didn't order other labs and went straight for a biopsy, which showed stage 3b damage. I've had my blood re-drawn (the TTG IGA) at 2 months and then at 9 months, and now. It's always just been that TTG IGA test. He hasn't ordered anything else, and has said it's not necessary for me to get the other panels done. I think that's probably because all he had at first was the TTG and he followed protocol by going for the biopsy since my number was so high. They didn't do the IGA deficiency test on me first, but Gemini said that if I were deficient my test would have been falsely negative, rather than >100. Plus my intestines showed blunting and hyperplasia, so that's how he confirmed his diagnosis. I am going to ask him why he doesn't order me the other tests though, out of curiosity. I know that the TTG tests mostly for intestinal damage and that's likely how he's monitoring my internal healing. He's always said that as long as I feel ok and my TTG is normal he isn't worried about me and said that we can just touch base annually unless symptoms arise. I've always wondered a bit about the DGP because I've never had it done, but Dr. Kim said it's not necessary to have that done (in my case). I'm sure he knows why, but I've never asked. I know others on here have suggested that I have that done, but since my doctor hasn't ordered it I haven't had it done. 

The results usually come back within a week so I should know something soon. I'll repost to let you guys know how it's going. 

[Fbmb]

  On 11/17/2017 at 4:43 PM, icelandgirl said:

Hi Cristiana,

It's hard to remember exactly, but somewhere in the low 20s.  This was DGP though as that was my positive test.  It has been much higher previously.  The next time it tested negative.

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So, do they just test your DGP like they just test my TTG?

[icelandgirl]

  On 11/17/2017 at 5:12 PM, Fbmb said:

So, do they just test your DGP like they just test my TTG?

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Yep.  Initially I had the full panel.  DGP was the only positive and it's the only one my doctor orders now.

[Fbmb]

  On 11/17/2017 at 6:07 PM, icelandgirl said:

Yep.  Initially I had the full panel.  DGP was the only positive and it's the only one my doctor orders now.

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Oh ok. So it seems like that makes sense for why my doctor only orders the TTG for me. It was the only test I had, but it was >100, and normal is 0-3 lol

[squirmingitch]

I'm just thrilled to hear how much better you're feeling now Fbmb!!! I know at first there, it was a bit rocky. You sound so much more relaxed now and much more sure of the diet. Wonderful news!

I have not a worry in the world that your test will come back in normal range. You were only 1 point over last time the test was done. I know you are very careful & adhere to the diet strictly but I will wish you luck anyway even though I'm sure you don't need it. 

[Fbmb]

Hey guys!

got my results back today. My TTG, IGA is now at a normal 3! It seems like it takes longer for those antibodies to drop as time goes on and as they get lower and lower. It was at 4 four months ago so I thought maybe it would be at 1 or 2, but I'll take 3  

[icelandgirl]

  On 11/20/2017 at 5:32 PM, Fbmb said:

Hey guys!

got my results back today. My TTG, IGA is now at a normal 3! It seems like it takes longer for those antibodies to drop as time goes on and as they get lower and lower. It was at 4 four months ago so I thought maybe it would be at 1 or 2, but I'll take 3  

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Wonderful news!  Congratulations!! ??

[Fbmb]

Thanks for your happy vibes!

[squirmingitch]

3 is GOOD! Better than 4. So now you are in the normal range. Good work girl!!!!

Now celebrate. 

I'm so happy for you!

[cristiana]

  On 11/21/2017 at 1:53 AM, squirmingitch said:

3 is GOOD! Better than 4. So now you are in the normal range. Good work girl!!!!

Now celebrate. 

I'm so happy for you!

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Brilliant - well done!