Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Type 1 and Suspected celiac disease - Help?

Keaki
 Share

Recommended Posts

Keaki Newbie
Keaki
Posted

Hi everyone,

Can you shed some light? Suddenly finding ourselves with celiac disease at the top of mind, and I am not sure how to interpret lab results.

My daughter was diagnosed with type 1 diabetes when she was 3. Now 10 (almost 11), she (and our whole family), just recovered from a nasty flu. She was sick on a Saturday, and had her normal blood tests done on a Monday.

With type 1 (and other autoimmune diseases), I they regularly test for signs of other autoimmune diseases. She has a panel done every 6 months, with until now, no irregularities.

Her pediatrician called me after receiving her latest panel, and told me that her iga ttg was 165.

She warned us to not jump the gun. But I am having a hard time trying to find info online what this number means.

Can anyone explain this further? What is the range? Is it time to brace ourselves for something likely, or does this indicate something “iffy”, or is it a matter of opinion?

Are false positives more common with type 1?

This community seems SO helpful and knowledgeable, I’m hoping some of you can help this worried mama out with more info.

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

While a slightly elevated TTG IgA can be attributed to other autoimmune diseases, if it is very elevated, it is more likely due to celiac disease .   Do you have the lab range?  Each lab is different but the most common lab celiac disease positive is anything over 20.  Your daughter’s result seems very high.  However, she did have the flu and that might impact tests results.  But recent studies think that viral infections like the flu may trigger celiac disease.  

The next step is consulting with a GI.  Intestinal biopsies are still the gold standard in diagnosing celiac disease.  You could also ask for the additional celiac disease tests which include the DGP and EMA from your PED.   Those might help solidify a diagnosis, but still consult with a GI.  

Hang in there.  Do not panic.  You will manage whatever the outcome, like you have done with her Diabetes.  ?

GFinDC Veteran
GFinDC
Posted

Hi, 

Just remember that the celiac testing depends on a person being on a gluten diet.  So don't take her off gluten before all the testing is done.  Usually there are blood tests first and then an endoscopy.  It seems like she only had the screening blood test.  They should give her the complete celiac disease test panel which includes IgG and EMA tests.  The celiac testing is not accurate if she goes off gluten before the testing is done.

Keaki Newbie
Keaki
Posted
  • Author
On 1/25/2020 at 11:39 PM, cyclinglady said:

While a slightly elevated TTG IgA can be attributed to other autoimmune diseases, if it is very elevated, it is more likely due to celiac disease .   Do you have the lab range?  Each lab is different but the most common lab celiac disease positive is anything over 20.  Your daughter’s result seems very high.  However, she did have the flu and that might impact tests results.  But recent studies think that viral infections like the flu may trigger celiac disease.  

The next step is consulting with a GI.  Intestinal biopsies are still the gold standard in diagnosing celiac disease.  You could also ask for the additional celiac disease tests which include the DGP and EMA from your PED.   Those might help solidify a diagnosis, but still consult with a GI.  

Hang in there.  Do not panic.  You will manage whatever the outcome, like you have done with her Diabetes.  ?

Thank you so much for the support and some breadcrumbs towards next steps.  Also some great questions for me to ask the endo. Where we are, I don’t get to see bloodwork (or lab ranges) for her as she is under 16.  You are an angel for getting back to me. I’m learning the web is so fragmented on info for celiac. I thought T1D was a challenge to find good info on...

Keaki Newbie
Keaki
Posted
  • Author
20 hours ago, GFinDC said:

Hi, 

Just remember that the celiac testing depends on a person being on a gluten diet.  So don't take her off gluten before all the testing is done.  Usually there are blood tests first and then an endoscopy.  It seems like she only had the screening blood test.  They should give her the complete celiac disease test panel which includes IgG and EMA tests.  The celiac testing is not accurate if she goes off gluten before the testing is done.

This part is the hardest right now. Amazing how gluten aware we’ve become. Tough keeping her on gluten when I know what I’m feeding her could be hurting her. Thanks for the reminder and support (and the direction for more reading).  Now to read about EMA. So many new terms! Thank you SO much for reaching out ❤️

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      129,596
    • Most Online (within 30 mins)
      7,748
    Vicki teach
    Newest Member
    Vicki teach
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Alibu
      Waiting on biopsy after positive bloodwork, but also not really believing this is real

      By Alibu · Posted

      I was tested back in 2017 and my TTG-IGA was mildly elevated (an 11 with reference range <4) but my EMA was negative and biopsy was negative. Fast forward to 2 weeks ago where I was like y'know what, I still have so many symptoms and I'm always so sick, I should repeat this, thinking it was not going to be positive.  I also found out through 23 and me that I do have the HLA-DQ2.5 gene so I thought it would be good to repeat given my ongoing symptoms. Well my blood work came back with a ttg-iga level of 152.6 with a reference range of <15 and my EMA was positive and EMA titer was 1:10 with reference range of <1:5. I guess I'm nervous that I'm going to do the biopsy and it's going to be negative again, especially since I also had an endoscopy in 2020, not to look for celiac but just as a regular 5 year thing I do because of all my GI issues, and they didn't see anything then either. I have no idea how long the EMA has been positive but I'm wondering if it's very recent, if the biopsy will show damage and if so, if they'll say well the biopsy is the gold standard so it's not celiac? I of course am doing all the things to convince myself that it isn't real. Do a lot of people go through this? I think because back in 2017 my ttg-iga was elevated but not a huge amount and my EMA was negative and my biopsy was negative, I keep thinking this time it's going to be different. But this time my ttg-iga is 152.6 with reference range <15, and my EMA was positive. BUT, my titer is only 1:10 and I keep reading how most people here had a ttg-iga in the hundreds or thousands, and the EMA titer was much higher. So now I am convinced that it was a false positive and when they do the biopsy it'll be negative.
    • trents
      Found coffee or coffee pods that contain gluten

      By trents · Posted

      Welcome to the forum, @linnylou73! Are you claiming this based on a reaction or based upon actual testing?
    • linnylou73
      Found coffee or coffee pods that contain gluten

      By linnylou73 · Posted

      Sams club membermark columbian coffee is either cross contaminated or the pods contain gluten
    • KimMS
      Helping child go strict gluten-free and concerns about growth/height

      By KimMS · Posted

      Thank you! Very helpful.
    • Scott Adams
      Helping child go strict gluten-free and concerns about growth/height

      By Scott Adams · Posted

      This varies a lot from person to person. I include foods that are not certified gluten-free but are labelled "gluten-free", while super sensitive people only use certified gluten-free. Both types of products have been found to contain gluten, so there are no guarantees either way: It you are in the super sensitive group, eating a whole foods based diet where you prepare everything is the safest bet, but it's also difficult. Eating out is the the most risky, even if a restaurant has a gluten-free menu. I also include items that are naturally gluten-free, for example refried beans, tuna, pasta sauces, salsas, etc., which have a low overall risk of contamination.
×
×
  • Create New...