TTGA 16 In March, 8 In July, 7 Now ( After a Month Eating Gluten )

[Zprime]

So Confusing...

I originally thought the PPI's / Medication I was on was actually the cause of my flattened Villi / Celiac Diagnosis.

However I accepted that I was Celiac and went gluten-free.

I had a blood test a month ago before starting the ' Gluten challenge ', I was around an 8 ( 0 - 10 Is a Negative in Canada , 10 - 20 Is a Positive ).

I figured Great! My blood is good, my celiac is calming down, However my Doctor wanted to start from scratch, So we did the Gluten challenge for a Month.

One piece of white bread every morning, other than that I was gluten-free.

I felt a bit sick after 2 weeks, mild inflammation, but nothing ' life altering ', and I suffer from IBS even off the Gluten so I was suspicious.

I got my blood work back yesterday, 7 ... Freaking 7 while on Gluten.

In other words my Anti TTGA were actually LOWER on the Gluten, by a whole point.

What's the next step? Repeat Endoscopy on Gluten? Is it possible the test is just s$#& and the Endoscopy is still the way to go?

It's so hard knowing if I have the disease or not, On Gluten I feel fine other than some anxiety ( because I feel like Im destroying my body after reading about Celiac Disease ), and some mild inflammation.

( I have a DNA Test at the end of the month to look for the two genes that can tell if you can develop it or not )

[cyclinglady]

Dang!  One month is NOT enough time for a gluten challenge.  The recommendation by major celiac centers is 8 to 12 weeks!  It can take time for antibodies to get into your blood stream.   

https://www.beyondceliac.org/celiac-disease/the-gluten-challenge/

I think you need a new GI!  (I think I already said that in previous posts.) Obviously, you are still in denial.  I suggest taking in all your lab work to a celiac-savvy GI!  

You had a positive celiac blood test and a Marsh Stage III B, right?  That is about as celiac as you can get in my non-medical opinion.  Once you have been gluten free, the celiac blood tests are not super accurate in determining dietary compliance.  Google it.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5295090/

A year ago or so, my DGP IGA was elevated even more than it was when I was diagnosed five years earlier, but my repeat endoscopy revealed healed villi.  The blood tests ( designed to help diagnosis only)  are used for dietary compliance because they are the only non-evasive test available.  It is better than nothing.  

And the TTG is not best for dietary compliance.  The celiac centers and foundations/organizations recommend the DGP instead.  

https://celiac.org/about-the-foundation/featured-news/2016/10/assessing-compliance-gluten-free-diet/

BTW, anxiety is a huge symptoms of celiac disease.  

Edited September 5, 2019 by cyclinglady

[Zprime]

I appreciate the insight, But all of these symptoms are a perfect mimic for ' SIBO ' as well, Including Marsh 3B, it's why I'm not just accepting a diagnosis at this point in time

I felt better on the gluten than off it, and while a month might not be long enough, one would think a month of eating ' posion ' or ' gluten for a celiac ' should of at least spiked it a little bit, instead it went down.

Just investigating

[cyclinglady]

What does your GI say?  

 

[Zprime]

Sadly we have to find a new one, The GI who diagnosed me has since closed his clinic down  
I will post updates as I find them  

[Jennenifer]

While researching this topic for myself, I came across information you may find helpful:

1. Gluten challenge - University of Chicago Celiac Center recommends at least 2-3 weeks of eating gluten before testing. Therefore, it seems reasonable that one month is an adequate length of time to get accurate antibody results. This is where it gets tricky, knowing current blood tests are not always accurate, how much longer should you/can you tolerate ingesting gluten to see if the antibody value rises to conclusive?

http://www.cureceliacdisease.org/diagnosis/

2. Potential new diagnostic blood tests could be available in the near future. The test measures specific cytokines which become elevated in blood serum of people with Celiac Disease hours after gluten exposure. The test would require eating gluten only once, a few hours before bloodwork is done. 

https://www.medicalnewstoday.com/articles/326018.php

 

Edited September 5, 2019 by Jennenifer

[GFinDC]

18 minutes ago, Jennenifer said:

While researching this topic for myself, I came across information you may find helpful:

1. Gluten challenge - University of Chicago Celiac Center recommends at least 2-3 weeks of eating gluten before testing. Therefore, it seems reasonable that one month is an adequate length of time to get accurate antibody results. This is where it gets tricky, knowing current blood tests are not always accurate, how much longer should you/can you tolerate ingesting gluten to see if the antibody value rises to conclusive?

http://www.cureceliacdisease.org/diagnosis/

2. Potential new diagnostic blood tests could be available in the near future. The test measures specific cytokines which become elevated in blood serum of people with Celiac Disease hours after gluten exposure. The test would require eating gluten only once, a few hours before bloodwork is done. 

https://www.medicalnewstoday.com/articles/326018.php

 

You are correct about 2 to 3 weeks for the endoscopy testing.  For the blood antibodies tests the gluten challenge is 12 weeks.

[cyclinglady]

7 hours ago, Zprime said:

Sadly we have to find a new one, The GI who diagnosed me has since closed his clinic down  
I will post updates as I find them  

So your General/family practitioner ordered the month-long gluten challenge to  retest only your TTG antibodies and not a Gastroenterologist?  He thought your GI and the pathologist’s observations and lab reports were incorrect (initial TTG very elevated and a Marsh Stage IIIB on the endoscopy)? 

If you really believe (not think) that you do not have celiac disease, you should take all your files (including labs) and see a new Gastroenterologist.  Something is not right based on the facts you have presented here.  

Whether you should continue to consume gluten until you can see a GI is is up to you.  

I am sorry that you have received such poor medical advice.  Good luck to you.  

Edited September 5, 2019 by cyclinglady

[cyclinglady]

2 hours ago, Jennenifer said:

While researching this topic for myself, I came across information you may find helpful:

1. Gluten challenge - University of Chicago Celiac Center recommends at least 2-3 weeks of eating gluten before testing. Therefore, it seems reasonable that one month is an adequate length of time to get accurate antibody results. This is where it gets tricky, knowing current blood tests are not always accurate, how much longer should you/can you tolerate ingesting gluten to see if the antibody value rises to conclusive?

http://www.cureceliacdisease.org/diagnosis/

2. Potential new diagnostic blood tests could be available in the near future. The test measures specific cytokines which become elevated in blood serum of people with Celiac Disease hours after gluten exposure. The test would require eating gluten only once, a few hours before bloodwork is done. 

https://www.medicalnewstoday.com/articles/326018.php

 

What gluten-free in DC said is true.  Antibodies (and damage) appear first in the small intestine before they accumulate in your bloodstream.    So, a gluten challenge only requires 2 to 4 weeks (celiac centers vary and I would choose the conservative number of 4 weeks based on member input) going straight to intestinal biopsies via an endoscopy.  

Your #2 idea is a great one.  I have read the same reports.  It would be so nice to be able to get a diagnosis without having to make oneself very ill in the process.    

Let’s hope those new tests become available soon!