Celiac.com Sponsor (A1):



Celiac.com Sponsor (A1-m):


  • You've found your Celiac Tribe! Join our like-minded, private community and share your story, get encouragement and connect with others.

    💬

    • Sign In
    • Sign Up
7 7
paris1

Celiac test results after 1.5 years of being diagnosed.

Rate this topic

Recommended Posts

my daughter was diagnosed last july with celiac in 2019. She had TTG IGA of 180 and has steadily come down to 90 after 6 months . after a year it went to 51.8 in june of 2020  but the latest test results from dec 2020 came down to only 48.8 . I know the normal range is under 20. So I am not sure why in the last 6 months there is not  a significant change . only down 3 points. Rest of all the results show normal range from all the test that doctors have done. will it take a long time to get under 20 range or should I be worried . Please advise

Share this post


Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


I would suspect she is still getting some small amounts of gluten, like from cross contamination or foods labeled "gluten free" that still contain enough gluten to generate reactions in more sensitive celiacs.

Share this post


Link to post
Share on other sites

You did not mention how old your daughter is, but I, as the admin and owner of this board, was horrified to learn (and ashamed to admit) that my teenage daughter was regularly cheating on her gluten-free diet. It was mostly due to peer pressure when she was with friends, or her soccer team. Since I could not control this the most I could do was get her to agree to take several GliadinX (an AN-PEP enzyme that has been shown in many studies to break down small amounts of gluten in the stomach) before she cheats. Although this is NOT a perfect solution, it is better than doing nothing. 

One of the few positive things that this pandemic has brought about is that she's no longer in situations where she feels the need to cheat.

So I guess I am asking, is it possible that your daughter is cheating on her diet?


Scott Adams

Celiac.com - Celiac Disease Board Moderator

Founder Celiac.com

Share this post


Link to post
Share on other sites

If she's strict about her diet, then it is still possible that some of the processed foods that she might be eating, even if labelled "gluten-free," could be contaminated, but the more likely culprit would be eating out. Do you eat food from restaurants, or prepared by friends or relatives?


Scott Adams

Celiac.com - Celiac Disease Board Moderator

Founder Celiac.com

Share this post


Link to post
Share on other sites

My antibodies were elevated when  I had a repeat endoscopy.   My GI went in deep and his scope’s magnification was strong. You could see the heathy villi (got the photos).  The pathologist’s  report confirmed healing at the microscopic level.  The antibodies tests were to help diagnosis celiac disease but not to monitor the diet or healing.  The only way to know for sure is to get another endoscopy.  
 

Why were my antibodies elevated almost a year after a gluten exposure (that was the reason for the repeat endoscopy)?    I suspect that it is due to my other autoimmune diseases.  I know that my Immunoglobulin A is always very elevated (cancer/MGUS) ruled out.  My thyroid antibodies are always elevated.  
 

If your daughter is feeling well and her other labs are in good order (e.g. not anemic, etc.), I would not worry.  It can take years for many celiacs to get normalized antibodies based on forum member input and studies I have read.  
 

I hope this helps.  


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test (DGP IgA only) and Endoscopy: March 2013

Hashimoto's Thyroiditis

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Repeat endoscopy/Biopsies: Healed

Share this post


Link to post
Share on other sites
5 hours ago, cyclinglady said:

My antibodies were elevated when  I had a repeat endoscopy.   My GI went in deep and his scope’s magnification was strong. You could see the heathy villi (got the photos).  The pathologist’s  report confirmed healing at the microscopic level.  The antibodies tests were to help diagnosis celiac disease but not to monitor the diet or healing.  The only way to know for sure is to get another endoscopy.  
 

Why were my antibodies elevated almost a year after a gluten exposure (that was the reason for the repeat endoscopy)?    I suspect that it is due to my other autoimmune diseases.  I know that my Immunoglobulin A is always very elevated (cancer/MGUS) ruled out.  My thyroid antibodies are always elevated.  
 

If your daughter is feeling well and her other labs are in good order (e.g. not anemic, etc.), I would not worry.  It can take years for many celiacs to get normalized antibodies based on forum member input and studies I have read.  
 

I hope this helps.  

Thanks this helps . Since every other report is perfectly fine and normal . 

Share this post


Link to post
Share on other sites

I am experiencing a very similar situation with my bloodwork. Two years ago my Tissue Transglutaminase IgA was 193. After two years it went down to 55. I was very disappointed since I never go out to eat and I prepare my own food. My wife is not gluten-free so there is a chance of some cross contamination. I feel your frustration. I agree with cyclinglady that if the other numbers are good I would focus on the endoscopy for confirmation. My latest scope still shows moderate damage so I still have more work to do. I am much older (63) as well. I also believe that foods labeled gluten-free (as mentioned here) could trigger some response. Tell your daughter to hang in there...

Share this post


Link to post
Share on other sites

Thank you so much for your response. Yes your response does help us a lot . It takes a while to heal I guess . Stay the course 

14 hours ago, cyclinglady said:

My antibodies were elevated when  I had a repeat endoscopy.   My GI went in deep and his scope’s magnification was strong. You could see the heathy villi (got the photos).  The pathologist’s  report confirmed healing at the microscopic level.  The antibodies tests were to help diagnosis celiac disease but not to monitor the diet or healing.  The only way to know for sure is to get another endoscopy.  
 

Why were my antibodies elevated almost a year after a gluten exposure (that was the reason for the repeat endoscopy)?    I suspect that it is due to my other autoimmune diseases.  I know that my Immunoglobulin A is always very elevated (cancer/MGUS) ruled out.  My thyroid antibodies are always elevated.  
 

If your daughter is feeling well and her other labs are in good order (e.g. not anemic, etc.), I would not worry.  It can take years for many celiacs to get normalized antibodies based on forum member input and studies I have read.  
 

I hope this helps.  

 

35 minutes ago, vvicin02 said:

I am experiencing a very similar situation with my bloodwork. Two years ago my Tissue Transglutaminase IgA was 193. After two years it went down to 55. I was very disappointed since I never go out to eat and I prepare my own food. My wife is not gluten-free so there is a chance of some cross contamination. I feel your frustration. I agree with cyclinglady that if the other numbers are good I would focus on the endoscopy for confirmation. My latest scope still shows moderate damage so I still have more work to do. I am much older (63) as well. I also believe that foods labeled gluten-free (as mentioned here) could trigger some response. Tell your daughter to hang in there...

Thank you so much for your response. It really helps to know that it takes a while to get normal . Stay the course I guess . And repeat in 6 months and may be endoscopy 

Share this post


Link to post
Share on other sites

my  (tTG) IgA was 100+ at diagnosis.. no sure how much over 100 because my Lab only records up to 100 but definitely over 100.

After 5 months gluten free diet I just had it checked again last month..   its at 13 now...  0  - 3 is normal..  so still needs to come down a bit.

gut still feels sore though

Share this post


Link to post
Share on other sites

My Tissue Transglutaminase IgA took more than 2 years to normalize, even on a very strict gluten-free diet. Symptoms regressed pretty fast (about 6 months) but my latest endoscopy shows that I am still a Marsh 3C, which would officially, make me a "non-responsive" celiac. However, I am followed by excellent specialists and a nutritionist who is a celiac herself. They think I am simply a slow responder, that my body needs more time than most but shows continuous small improvements and I will eventually heal. 

So, if she feels ok and if you feel confident she is following a good diet, I would just be patient, very patient. It can take a long time. Keep an eye on other tests, like iron, B vitamins, Vit. D, etc.

All the best!

Share this post


Link to post
Share on other sites

There is research which shows that cow's milk (casein) can also cause an increase in the ttg levels to those who are sensitive to it. This happened to the patient in a story we published today:

 and here is the research on this:

https://www.sciencedirect.com/science/article/pii/S2341287918301601 


Scott Adams

Celiac.com - Celiac Disease Board Moderator

Founder Celiac.com

Share this post


Link to post
Share on other sites

Good question. We have some really old summaries here, and I'll bet there is a lot more that have been done on this:

https://www.celiac.com/articles.html/celiac-disease-amp-related-diseases-and-disorders/casein-cows-milk-intolerance-and-celiac-disease/ 


Scott Adams

Celiac.com - Celiac Disease Board Moderator

Founder Celiac.com

Share this post


Link to post
Share on other sites
1 hour ago, Scott Adams said:

Good question. We have some really old summaries here, and I'll bet there is a lot more that have been done on this:

https://www.celiac.com/articles.html/celiac-disease-amp-related-diseases-and-disorders/casein-cows-milk-intolerance-and-celiac-disease/ 

But is "lactose intolerance" really what we are talking about when referencing elevated ttg levels? I just read the titles to those summaries and they all reference intolerance. To my understanding, intolerances produce discomfort and diarrhea but isn't damaging.

Edited by trents

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
7 7