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

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


HavaneseMom

Recommended Posts

HavaneseMom Explorer

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!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



GottaSki Mentor

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 :)

HavaneseMom Explorer

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.

Celiacandme Apprentice

How did your appointment go?

HavaneseMom Explorer

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.

Celiacandme Apprentice

Oh no! I hope you feel better soon!

GottaSki Mentor

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???


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



HavaneseMom Explorer

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 :-).

HavaneseMom Explorer

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!

GottaSki Mentor

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 :)

nvsmom Community Regular

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.

  • 1 month later...
HavaneseMom Explorer

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:

icelandgirl Proficient

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!

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    2. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    3. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    4. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    5. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,082
    • Most Online (within 30 mins)
      7,748

    MelanieR
    Newest Member
    MelanieR
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • AlwaysLearning
      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • 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.