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

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

  • 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. Scott Adams
      - Scott Adams replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      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...
    2. 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...
    3. JoJo0611
      - JoJo0611 replied to JoJo0611's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      CT with contrast.

      Thank you.
    4. 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...
    5. cristiana
      - cristiana replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

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

      Thanks for this Russ, and good to see that it is fortified. I spend too much time looking for M&S gluten-free Iced Spiced Buns to have ever noticed this! That's interesting, Scott. Have manufacturers ever said why that should be the case?
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,439
    • Most Online (within 30 mins)
      7,748
    Lillian Steele
    Newest Member
    Lillian Steele
    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)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

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

      By cristiana · Posted

      Thanks for this Russ, and good to see that it is fortified. I spend too much time looking for M&S gluten-free Iced Spiced Buns to have ever noticed this! That's interesting, Scott.  Have manufacturers ever said why that should be the case?  
×
×
  • 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.