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6 Month Follow-Up Blood Test Results Question - Ttg Iga Still Elevated


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#1 HavaneseMom

 
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Posted 15 April 2014 - 01:07 PM

Hi Everyone,

I just picked up my blood work results, so I could look them over before my 6 month post diagnosis follow up appointment I have tomorrow. I was surprised to see that my TTG IGA level has lowered, but is still high and above the normal range. It was also high when I had blood work done at 3 1/2 months post diagnosis. I had posted a question here about it at that time, and it was mentioned that it should be in normal range around 6 months, and if not, it could be due to another auto immune disease.

Here are my results from diagnosis, 3 1/2 month and 6 months for reference. The numbers for all of these test should be less than 20 to be considered in the normal reference range.

At Diagnosis:
TTG IGA 157
TTG IGG 8
Gliadin AB IGA 170
Gliadin AB IGG 65

At 3 1/2 Months Gluten Free:
TTG IGA 34
TTG IGG 4
Gliadin AB IGA 18
Gliadin AB IGG 19

At 6 Months Gluten Free:
TTG IGA 26
TTG IGG 4
Gliadin AB IGA 12
Gliadin AB IGG 11

My other celiac related numbers have continued to fall to numbers I am very happy with and are all under 20 like they should be, but not TTG IGA. I am wondering what other auto immune issues could cause that number to remain elevated? I would like to bring this possibility up with my doctor tomorrow. I am sure he will say I am probably still getting trace amounts of gluten in my diet somewhere, but I don't think so. Also, wouldn't the other numbers still be elevated above normal range if that we're true?

Thanks in advance!
  • 0
Grateful to be correctly diagnosed at 40.
Likely misdiagnosed since childhood.
Blood test and Biopsies positive for Celiac Disease.
Gluten Free Since 10/9/13.

Be kind whenever possible. It is always possible. ~ Dalai Lama

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#2 GottaSki

 
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Posted 15 April 2014 - 01:14 PM

They have continually come down over six months.  I think you simply need to wait for the one year mark.  Six months ago you had two celiac antibodies over 150...that is very high, now they are nearly all in the normal ranges.

 

Have your Iron or D levels risen since removing gluten?  As long as nutrient levels are correcting, celiac antibody levels are falling and symptoms improve -- it seems that you are indeed living gluten-free.  If you are worried there are any areas that gluten is getting in, tighten those, but I'd try not to worry until at least the one year mark - based on celiac antibody levels you have reported here.

 

Hang in there!

 

Great work getting those numbers down quickly :)


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#3 HavaneseMom

 
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Posted 15 April 2014 - 01:33 PM

Thanks GottaSki!
I am very happy to see that the numbers are consistently dropping. Just that one little nagging high number is still out there.
I guess I am a little on the defense about the elevated TTG IGA, since the physicians assistant insisted that the level was high at 3 1/2 months because I had to be ingesting gluten. I remember asking you all about that at that time and everyone here said that is not always true, but I am sure it will come up tomorrow. I get to see the actual doctor tomorrow though, so maybe he won't give me a hard time about it, since hopefully he is more knowledgeable about the healing and recovery time frame.
My Vitamin D and Iron are slowly improving, but need a little more time too.
I will take your advice and won't worry about these things as long as everything is continuing to improve.
  • 0
Grateful to be correctly diagnosed at 40.
Likely misdiagnosed since childhood.
Blood test and Biopsies positive for Celiac Disease.
Gluten Free Since 10/9/13.

Be kind whenever possible. It is always possible. ~ Dalai Lama

#4 Celiacandme

 
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Posted 17 April 2014 - 03:45 AM

How did your appointment go?


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#5 HavaneseMom

 
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Posted 17 April 2014 - 10:10 AM

How did your appointment go?

Thanks for asking!
I actually had to cancel the appointment at the last minute because I somehow threw my lower back out and can barely walk (second time in three weeks!).
I can't get in to see him again until mid May, so I will have to wait until then to go over all of my results with him.
  • 0
Grateful to be correctly diagnosed at 40.
Likely misdiagnosed since childhood.
Blood test and Biopsies positive for Celiac Disease.
Gluten Free Since 10/9/13.

Be kind whenever possible. It is always possible. ~ Dalai Lama

#6 Celiacandme

 
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Posted 17 April 2014 - 10:15 AM

Oh no! I hope you feel better soon!


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#7 GottaSki

 
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Posted 17 April 2014 - 10:26 AM

Thanks for asking!
I actually had to cancel the appointment at the last minute because I somehow threw my lower back out and can barely walk (second time in three weeks!).
I can't get in to see him again until mid May, so I will have to wait until then to go over all of my results with him.

 

Feel Better!!!!

 

Maybe request one more tTG-IgA right before the May appt, since it was the only positive...perhaps it will be even lower by then???


  • 0

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#8 HavaneseMom

 
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Posted 17 April 2014 - 10:35 AM

Oh no! I hope you feel better soon!

Thanks!
I'm hoping it will be better by the weekend. I really need to get on a regular exercise routine to strengthen my back. I have been enjoying babying and pampering myself since my diagnosis 6 months ago, and haven't been exercising and have gained some weight. I guess it's time to start watching my calories and exercising now that my digestive system is so much better :-).
  • 0
Grateful to be correctly diagnosed at 40.
Likely misdiagnosed since childhood.
Blood test and Biopsies positive for Celiac Disease.
Gluten Free Since 10/9/13.

Be kind whenever possible. It is always possible. ~ Dalai Lama

#9 HavaneseMom

 
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Posted 17 April 2014 - 10:45 AM

Feel Better!!!!
 
Maybe request one more tTG-IgA right before the May appt, since it was the only positive...perhaps it will be even lower by then???


Thanks!
That is a great idea. I will make sure to ask for that test before my appointment. I never would have thought of that, so thanks again.

I looked over my blood work more carefully after you asked before if my deficiencies were improving. I was very excited to see how much things have improved in 6 months. At the time of my diagnosis I had 13 test that came back very much out of normal range. After 6 months, I now only have 5 test that are just slightly out of normal range. I'm amazed at what a impact 6 months of gluten free living has had on my body!
  • 0
Grateful to be correctly diagnosed at 40.
Likely misdiagnosed since childhood.
Blood test and Biopsies positive for Celiac Disease.
Gluten Free Since 10/9/13.

Be kind whenever possible. It is always possible. ~ Dalai Lama

#10 GottaSki

 
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Posted 17 April 2014 - 11:22 AM

Thanks!
That is a great idea. I will make sure to ask for that test before my appointment. I never would have thought of that, so thanks again.

I looked over my blood work more carefully after you asked before if my deficiencies were improving. I was very excited to see how much things have improved in 6 months. At the time of my diagnosis I had 13 test that came back very much out of normal range. After 6 months, I now only have 5 test that are just slightly out of normal range. I'm amazed at what a impact 6 months of gluten free living has had on my body!

 

You are welcome...always glad to help...took me forever to learn out to manage my own medical tests.

 

Great news that six months has improved those nutrient numbers...they will continue to improve.

 

As for the weight...you and your body have been through a major change these past months -- go easy on yourself -- do try to take a short walk each day...even if it is down the block, before you know it you'll be raring for more :)


  • 0

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#11 nvsmom

 
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Posted 17 April 2014 - 07:11 PM

Ouch. I have back issues too. It can make things difficult.  :(

 

Your numbers have improved nicely. I agree with Lisa that I bet they will keep coming down as time goes by. Some of us just take longer - I was almost down to normal at just over one year gluten-free... Almost. LOL  I do have one of the other possible causes of a slightly elevated tTG IgA though, so that could affect my score.

 

The other most common causes of a weak positive tTG IgA are diabetes, crohn's, colitis, chronic liver disease, thyroiditis, and infection... I think I'm missing one... Chances are you are just one of the slow ones though.  :)

 

Best wishes.  Hope you feel better soon.


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#12 HavaneseMom

 
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Posted 03 June 2014 - 01:44 PM

Hi Everyone,

I just wanted to follow up on my original post with the great news I received today that my TTG IGA is now 17. It took almost 8 months, but all of my Celiac numbers are now below the normal reference range of less than 20! I thought I would share my excitement with the only other people in the world that could relate to being happy about this :).

I did mention to the doctor that his Physicians Assistant had called me after my previous two test results came back to tell me that I must be consuming gluten because my TTG IGA was not under the normal reference range of 20. He was surprised by this and said he would talk to her about it. He then said that it's not something they usually focus on at all, and it takes time for the numbers to drop and I did a great job sticking to the gluten free diet - just like you all said.

Thanks to everyone here for the invaluable advice you have given. I couldn't have gotten this far without it. :wub:


  • 0
Grateful to be correctly diagnosed at 40.
Likely misdiagnosed since childhood.
Blood test and Biopsies positive for Celiac Disease.
Gluten Free Since 10/9/13.

Be kind whenever possible. It is always possible. ~ Dalai Lama

#13 icelandgirl

 
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Posted 03 June 2014 - 01:50 PM

Hi Everyone,
I just wanted to follow up on my original post with the great news I received today that my TTG IGA is now 17. It took almost 8 months, but all of my Celiac numbers are now below the normal reference range of less than 20! I thought I would share my excitement with the only other people in the world that could relate to being happy about this :).
I did mention to the doctor that his Physicians Assistant had called me after my previous two test results came back to tell me that I must be consuming gluten because my TTG IGA was not under the normal reference range of 20. He was surprised by this and said he would talk to her about it. He then said that it's not something they usually focus on at all, and it takes time for the numbers to drop and I did a great job sticking to the gluten free diet - just like you all said.
Thanks to everyone here for the invaluable advice you have given. I couldn't have gotten this far without it. :wub:

I'm super excited for you! I get my follow up blood work done next week...come on low numbers!
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