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Celiac test results after 1.5 years of being diagnosed.

paris1
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paris1 Newbie
paris1
Posted

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

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trents Grand Master
trents
Posted

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.

Scott Adams Grand Master
Scott Adams
Posted

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?

paris1 Newbie
paris1
Posted
  • Author

She is 20 and has been home last 6 months . She is very particular about her diet and follows it strictly. Thanks

Scott Adams Grand Master
Scott Adams
Posted

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?

cyclinglady Grand Master
cyclinglady
Posted

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.  

paris1 Newbie
paris1
Posted
  • Author
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 . 

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vvicin02 Enthusiast
vvicin02
Posted

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...

paris1 Newbie
paris1
Posted
  • Author

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 

DJFL77I Experienced
DJFL77I
Posted

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

Scott Adams Grand Master
Scott Adams
Posted

@DJFL77I it looks like you're taking the diet seriously, and are seeing this in your results. This is a huge drop in 5 months. Keep it up!

DJFL77I Experienced
DJFL77I
Posted

you should see all the weight I dropped too though  ☹️

trents Grand Master
trents
Posted

Was losing the weight a good thing for you? We've had several posters lately who were worried because they were losing weight but didn't want to.

DJFL77I Experienced
DJFL77I
Posted

no i was thin already as it was

Scott Adams Grand Master
Scott Adams
Posted

Perhaps it's time for that New Year's Resolution to avoid all exercise, and eat only Lay's Potato Chips? 😄

DJFL77I Experienced
DJFL77I
Posted

I haven't been exercising since FEB, since I started feeling sick..  I used to exercise daily...   might be eating too little... 

  • 2 weeks later...
Scott Adams Grand Master
Scott Adams
Posted

Unless your goal is weight loss you need to eat more according to how much you exercise.

  • 2 weeks later...
Juca Contributor
Juca
Posted

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!

paris1 Newbie
paris1
Posted
  • Author

Thanks for your response. It was very helpful. Yes rest all her reports are normal and she feels fine . No symptoms. 

Scott Adams Grand Master
Scott Adams
Posted

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 

trents Grand Master
trents
Posted

I wonder if CMP also damages the villi?

Scott Adams Grand Master
Scott Adams
Posted

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/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/casein-cows-milk-intolerance-and-celiac-disease/ 

trents Grand Master
trents
Posted
(edited)
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/celiac-disease/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
Scott Adams Grand Master
Scott Adams
Posted

Casein intolerance...but you'd have to look at some of the summaries there.

Scott Adams Grand Master
Scott Adams
Posted

Here are some articles on villi damage from other foods besides gluten. They are quite old, but I will try to find newer ones:

 

 

 

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