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

Recommended Posts

Keaki Newbie

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

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - bold-95 replied to Mrs Wolfe's topic in Related Issues & Disorders
      10

      Cartilage and rib pain.

    2. - Scott Adams replied to CJF's topic in Traveling with Celiac Disease
      5

      European travel with Celiac Disease

    3. - CJF replied to CJF's topic in Traveling with Celiac Disease
      5

      European travel with Celiac Disease

    4. - Oldturdle replied to CeliacPI's topic in Related Issues & Disorders
      7

      Lymphocytic Colitis with Celiac

    5. - Scott Adams replied to maryannlove's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Yasso frozen yogurt bars - be careful


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,418
    • Most Online (within 30 mins)
      7,748

    Debra W
    Newest Member
    Debra W
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • bold-95
    • Scott Adams
      It's great to hear that the trip went well, and the general consensus I hear about gluten-free travel in Europe, including my own experiences, is that it is much easier done in comparison to traveling and eating gluten-free in the USA. 
    • CJF
      Safely home from my recent trip to the UK. I had zero gut issues while traveling around this pretty country. Our tour leader was very good at making sure the 2 of us with gluten issues on our tour were well taken care of.  We often got our meals before the rest of the group and adaptations to the menu for us were well thought out and very tasty. I just wish restaurants here in the USA took as much pride in making food that everyone can enjoy. Many of the hotels and pubs we ate at had numerous options that were safe for us with wheat/gluten restrictions to eat.  
    • Oldturdle
      I am 73 years old and was diagnosed with Celiac disease, and started the gluten free diet 4 years ago.  This past spring,  I experienced sudden onset diarrhea, which was persistent for several weeks, before I had a colonoscopy.  I was told my colon looked normal, but the biopsy showed microscopic lymphocytic colitis.  I was asked at that time if I was still experiencing the diarrhea, and when I said yes, I was prescribed an 8 week course of Budesonide, which included the weaning off phase.  Budesonide is a steroid, but it is allegedly specific for the bowel, and has very few systemic side effects.  I must say, I experienced no side effects, except a couple little spots of persistent psoriasis went away.  I have one week of treatment left, and other than one loose stool very early in treatment, I have had no further bowel issues.  I was told that 80 percent of people go into an extensive, or even permanent, remission after taking Budesonide.  During the colonoscopy, two polyps were removed, and one was precancerous.  I know that colon cancer risks are higher in people with Celiac disease, so it was recommended that I have another coloscopy in five years.      Like your husband, I probably had untreated Celiac disease for years.  It makes one wonder if the chronic irritation and inflammation could lead to the development of microscopic lymphocytic colitis.  This disease is usually diagnosed in people over 50 years old, and occurs approximately in one out of every 1,000 people.        Incidentally, If your husband is prescribed Budesonide, it can be purchased significantly cheaper by using GoodRX.
    • Scott Adams
      Thanks for sharing this! Talk about frustrating! It is complicated enough to try to keep track of which products are safe, but the concept of the same product sold at 2 different stores--one that is certified gluten-free and one that isn't--that is exactly why having celiac disease is still so difficult, and it is so easy to make mistakes!
×
×
  • Create New...