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

9 month follow up labs tomorrow...

Fbmb

Recommended Posts

Fbmb Rising Star
Fbmb
Posted

Hi all,

Im having my TTG/Iga drawn tomorrow for my 9 month follow up. I had them drawn initially in September and they were >100. I was officially diagnosed with my biopsy on November 8 and stopped eating gluten that day. My GI doctor wanted me to repeat my TTG in January, and it was 12. He wanted it done again 6 months later, which is now. So I'm doing that tomorrow and I'm nervous.

The TTG was the only lab I had done before my biopsy. My number was so high that my doctor didn't see the point in ordering other labs. He just did the biopsy and sure enough, 3b. I asked his nurse if I need any other labs done now besides the TTG and she said that he said no. He just wants that. 

So that's what I'm going to do. I'm feeling ok, but my body was compensating so well before that I don't know if I would have symptoms now if I ate gluten. I'm so careful all the time. I have no reason to think my number won't be lower than it was in January, but I'm anxious. 

I guess I'm just letting out my anxiety here, because you guys get it. Wish me luck. 

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

Celiac.com Sponsor (A8-M):


squirmingitch Veteran
squirmingitch
Posted

You don't need luck because you've been so very careful & conscientious. Your numbers will come back great!

But I'll wish you luck anyway & tell you to stop being anxious.

 

Fbmb Rising Star
Fbmb
Posted
  • Author
12 minutes ago, squirmingitch said:

You don't need luck because you've been so very careful & conscientious. Your numbers will come back great!

But I'll wish you luck anyway & tell you to stop being anxious.

 

You're the best :) I hope the TTG/iga alone is ok. My doctor said it is. I'm trying this new thing where I don't second guess or argue with my doctor. It's tough for a sass like me. 

kareng Grand Master
kareng
Posted
58 minutes ago, Fbmb said:

Hi all,

Im having my TTG/Iga drawn tomorrow for my 9 month follow up. I had them drawn initially in September and they were >100. I was officially diagnosed with my biopsy on November 8 and stopped eating gluten that day. My GI doctor wanted me to repeat my TTG in January, and it was 12. He wanted it done again 6 months later, which is now. So I'm doing that tomorrow and I'm nervous.

The TTG was the only lab I had done before my biopsy. My number was so high that my doctor didn't see the point in ordering other labs. He just did the biopsy and sure enough, 3b. I asked his nurse if I need any other labs done now besides the TTG and she said that he said no. He just wants that. 

So that's what I'm going to do. I'm feeling ok, but my body was compensating so well before that I don't know if I would have symptoms now if I ate gluten. I'm so careful all the time. I have no reason to think my number won't be lower than it was in January, but I'm anxious. 

I guess I'm just letting out my anxiety here, because you guys get it. Wish me luck. 

The ttg should tell you what you need to know at this point - that the gluten-free diet is working.  Don't get too down if  it isn't completely in the negative range.  It can take months or a year of very strict gluten-free to get it all the way down.  You usually figure that the first month to 2 months are a learning period and not completely gluten-free.... so it's really only 7 months.

Fbmb Rising Star
Fbmb
Posted
  • Author
1 minute ago, kareng said:

The ttg should tell you what you need to know at this point - that the gluten-free diet is working.  Don't get too down if  it isn't completely in the negative range.  It can take months or a year of very strict gluten-free to get it all the way down.  You usually figure that the first month to 2 months are a learning period and not completely gluten-free.... so it's really only 7 months.

That's true. My doctor was telling me back in January that he expected to see a big drop if I'm doing well on the diet, and I was so nervous. But then when it came back at 12 (we got the result together in his office) he was elated. He said, "This is a significant decrease!" So my hope is that it's lower than 12 now. But I was over the moon in January. I figure I'm doing better with my diet now than I was then because there's such a huge learning curve. Labcorps does my labs and their range is 0-3, so 12 was elevated but considering it was >100 when I was diagnosed 2 months earlier I was happy!

cyclinglady Grand Master
cyclinglady
Posted

You will be fine.  Karen is right, it can take time,  lots of time for antibodies to come down.  So, do not beat yourself up, if they are still not "normal".  

?

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Rogol72
      - Rogol72 replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying...
    2. Scott Adams
      - Scott Adams replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin. In the early 1900s, refined white flour replaced whole grains, and people began...
    3. Scott Adams
      - Scott Adams replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted...
    4. JoJo0611
      - JoJo0611 replied to JoJo0611's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      CT with contrast.

      Thank you.
    5. deanna1ynne
      - deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased int...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,441
    • Most Online (within 30 mins)
      7,748
    Linda Boxdorfer
    Newest Member
    Linda Boxdorfer
    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)

  • Upcoming Events

  • Posts

    • Rogol72
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Rogol72 · Posted

      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying it once. It's fortified with Calcium and Iron. https://www.warburtonsglutenfree.com/warbs_products/white-loaf/ The only other gluten-free bread that I've come across that is fortified is Schar with Iodized salt, nothing else.
    • Scott Adams
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Scott Adams · Posted

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
    • JoJo0611
      CT with contrast.

      By JoJo0611 · Posted

      Thank you. 
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased intraepithelial lymphocytes, preserved villous architecture, and patchy foveolar metaplasia,” which we are told is still inconclusive…  We will have her go gluten free again anyway, but how soon would you all test again, if at all? How valuable is an official dx in a situation like this?
×
×
  • 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.