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
      127,793
    • Most Online (within 30 mins)
      7,748
    Oli1904
    Newest Member
    Oli1904
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jordan23
      Potato Intolerance

      By Jordan23 · Posted

      Ok so know one knows about cross reactions from yeast,corn, potatoes, eggs, quinoa ,chocolate, milk, soy, and a few more I forgot.  There all gluten free but share a similar structure to gluten proteins. I use to be able to eat potatoes but now all of a sudden I was stumped and couldn't figure it out when I got shortness of breath like I was suffocating.  Then figured it out it was the potatoes.  They don't really taste good anyways. Get the white yams and cherry red 🍠 yams as a sub they taste way better. It's a cross reaction! Google foods that cross react with celiacs.  Not all of them you will cross react too. My reactions now unfortunately manifest in my chest and closes everything up . Life sucks then we die. Stay hopeful and look and see different companies that work for you . Lentils from kroger work for me raw in the bag and says nothing about gluten free but it works for me just rinse wellllll.....don't get discouraged and stay hopeful and don't pee off god
    • K6315
      Newly gluten free… withdrawal?

      By K6315 · Posted

      Hi Lily Ivy. Thanks for responding. Did you have withdrawal? If so, what was it like and for how long?
    • trents
      Can I trust the gluten free label if a product was made in a facility that also processes gluten?

      By trents · Posted

      Welcome to the forum, @Doris Barnes! You do realize don't you that the "gluten free" label does not mean the same thing as "free of gluten"? According to FDA regulations, using the "gluten free" label simply means the product does not contain gluten in excess of 20 ppm. "Certified Gluten Free" is labeling deployed by an independent testing group known as GFCO which means the product does not contain gluten in excess of 10 ppm. Either concentration of gluten can still cause a reaction in folks who fall into the more sensitive spectrum of the celiac community. 20 ppm is safe for most celiacs. Without knowing how sensitive you are to small amounts of gluten, I cannot speak to whether or not the Hu Kitechen chocolates are safe for you. But it sounds like they have taken sufficient precautions at their factory to ensure that this product will be safe for the large majority of celiacs.
    • Doris Barnes
      Can I trust the gluten free label if a product was made in a facility that also processes gluten?

      By Doris Barnes · Posted

      Buying choclate, I recently boght a bar from Hu Kitchen (on your list of recommended candy. It says it is free of gluten. However on the same package in small print it says "please be aware that the product is produced using equipment that also processes nuts, soy, milk and wheat. Allergen cleans are made prior to production". So my question is can I trust that there is no cross contamination.  If the allergy clean is not done carefully it could cause gluten exposure. Does anyone know of a choclate brand that is made at a facility that does not also use wheat, a gluten free facility. Thank you.
    • trents
      Hidden Gluten in distilled vinegar

      By trents · Posted

      @Manaan2, have you considered the possibility that she might be cross reacting to some food or foods that technically don't contain gluten but whose proteins closely resemble gluten. Chief candidates might be dairy (casein), oats (avenin), soy, corn and eggs. One small study showed that 50% of celiacs react to CMP (Cow's Milk Protein) like they do gluten.
×
×
  • Create New...