Jump to content
Celiac Disease FAQ | This site uses cookies GDPR notice. Read more... ×
  • Sign Up

Rate this topic

Recommended Posts

Our daughter has been strictly gluten-free for over 2 years now.  She's had labs checked every 3-6  months and this is what we've seen (TTG only):  69, 73, 81, 41, 64, 14.  They are telling us she's "negative" now that her TTG is at 14 (looks like the reference range on the lab is negative is <15).  I'm seeing other places where <10 is negative, or <20 is negative... can anyone explain this to me?  What does this mean?  What do celiac's typically see with their TTG levels?  

Thanks!

Share this post


Link to post
Share on other sites

Here is a quick explanation of lab testing reference ranges:

https://labtestsonline.org/understanding/features/ref-ranges/start/2/

It is important to use the same lab for re-testing antibody levels for a more accurate comparison.

Her antibody levels are coming down so that is a good thing. However, the doctor should also be retesting her DGP, which tells you if she is getting any gluten in her diet.  The tTg is for intestinal damage and it can be elevated with other autoimmune disease. I still can't believe that docs only test tTg because it is important that the DGP be as low as possible as it correlates to dietary consumption of gluten. 

I have been gluten-free for 12 years and after the first year, my DGP (or the older version, the AGA IgA, which was all that was available at the time) was 1-2 and I have held it there since going gluten-free. But you shouldn't worry about the tTg so much as it is in the normal range and will probably come down even further the longer she is gluten-free. Ask them to repeat the DGP....it is important to know that number also.

 

 

Share this post


Link to post
Share on other sites

When a lab test measures something like total IgA antibody or cholesterol, the result is a real unit - a weight per a volume.  Reference ranges may differ a little between laboratories but actual patient results can be compared from one lab to another.

For celiac specific antibody tests such as TTG, the units are completely arbitrary and assigned by the manufacturer of the test.  A "4" from one manufacturer who says normal is <3 is NOT the same amount of antibody as a "4" from a manufacturer who says normal is <20.  It is NOT a case of one lab deciding there has to be more antibody to be considered positive.  When developing the tests (I used to do this type of work) the manufacturer has blood samples from known celiacs and known non-celiacs, looks at the results obtained from a bunch of samples,  and chooses a cutoff for normal that classifies most results correctly.  This is why results from different labs who use tests from different manufacturers cannot be compared.  Hope this helps.

Congratulations on getting your daughter's antibody level into the normal range!

Share this post


Link to post
Share on other sites

Congratulations!  

Share this post


Link to post
Share on other sites

Thank you for the congrats!  We were thrilled to have her TTG finally come down.  We were prepared and about to start the Fasano diet if it wasn't!  We're actually having a bit of a hard time believing it is actually down and are trying to determine if it is because we also recently cut quinoa from her diet.

Thank you also for the information about the labs... that makes so much more sense.  They have been testing EMA and TTG only.  (EMA is now negative too!!!)  We asked the GI last year if we should start checking DGP and she said it was pointless at this point since it wasn't tested for initially.  Thoughts on that one?  Should we request it?

Thanks again!

Share this post


Link to post
Share on other sites

I would want the DGP also.  My TTG started out high and now is just barely normal; my DGP is lower than at first but still high and per an endoscopy I still have some villi damage.  

Share this post


Link to post
Share on other sites
On 5/10/2017 at 3:54 PM, CeliacMommaX2 said:

Our daughter has been strictly gluten-free for over 2 years now.  She's had labs checked every 3-6  months and this is what we've seen (TTG only):  69, 73, 81, 41, 64, 14.  They are telling us she's "negative" now that her TTG is at 14 (looks like the reference range on the lab is negative is <15).  I'm seeing other places where <10 is negative, or <20 is negative... can anyone explain this to me?  What does this mean?  What do celiac's typically see with their TTG levels?  

Thanks!

I don't think it's anything to do with celiac but it's sounds like a problem with whey 

Share this post


Link to post
Share on other sites

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
1 1

  • Top Posters +

  • Upcoming Events

    • February 27, 2019 04:00 PM Until 08:00 AM
      0  
       
       
       
      Celiac Emotional Healing Support Group
       
       
       
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
       
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
       
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
       
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • March 24, 2019 Until March 27, 2019
      0  
      NEW ORLEANS GOURMET GLUTEN-FREE mini GETAWAY    March 24 ~ 27, 2019   We have arranged a fun and Gluten-free food filled mini in the city known for it's food and fun.  We have arranged to eat many of the famous dishes that aren't usually Gluten-free at a few of the World Renown restaurants.   Staying at the Royal Sonesta Hotel on Bourbon Street in the center of the French Quarter, you'll be able to enjoy the ambiance of the city at all hours.   Our itinerary will include a Luxury Coach tour of the city and surrounding area - Admission to The National World War II Museum, including the Tom Hanks" 4D film "Beyond All Boundaries" - an exciting Airboat ride and tour through the Bayou.      This it the 3rd time we have visited New Orleans and it has always been well attended, so join us even if you've been there before.  Check out our website for the complete itinerary and cost.    Due to contractual obligations we must have 20 participants by October 31, 2018 to make this a go.      If you have any questions just give us a call at 410-939-3218.  Bob & Ruth info@bobandruths.com (410) 939-3218
    • March 30, 2019 Until March 31, 2019
      0  
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      ABOUT THE NOURISHED FESTIVALS
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
       
×