Type 1 and Suspected celiac disease - Help?

[Keaki]

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.

[cyclinglady]

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]

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]

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]

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 ❤️