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9 month follow up labs tomorrow...


Fbmb

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Fbmb Rising Star

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. 


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squirmingitch Veteran

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
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
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
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

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".  

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
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