Coeliac or just Intolerant

[Stephen Benge]

I was diagnosed in the 1990,s and had three biopsy tests showing some damage to my gut.

I am asymptomatic and have led a fairly healthy lifestyle running,cycling and not smoking (although I love a drink 🥃 at the weekend.

I haven’t stuck to my gluten free diet rigidly, thinking I may only be intolerant.

 I wonder if the testing is more accurate now and what the self test accuracy is?

Any thoughts

 

 

 

 

 

 

 

[trents]

10 minutes ago, Stephen Benge said:

I was diagnosed in the 1990,s and had three biopsy tests showing some damage to my gut.

I am asymptomatic and have led a fairly healthy lifestyle running,cycling and not smoking (although I love a drink 🥃 at the weekend.

I haven’t stuck to my gluten free diet rigidly, thinking I may only be intolerant.

 I wonder if the testing is more accurate now and what the self test accuracy is?

Any thoughts

 

 

 

 

 

 

 

Stephen, welcome to the forum!

Can you provide more details please?

First of all, when you diagnosed in the 90's, what gluten disorder were you diagnosed with? How were you diagnosed? What tests were run? Did you have serum antibody tests run that are specific for celiac disease? Did you undergo an endoscopy with biopsy of the small bowel lining?

It's not clear to me if your were diagnosed with celiac disease or NCGS (Non Celiac Gluten Sensitivity).

If you were diagnosed with celiac disease then you definitely should have been following a strict gluten free diet. Any cheating will keep the inflammation going in the lining of the small bowel.

I am not sure how long the serum antibody tests specific to celiac disease have been available but they are pretty accurate. Some of them are less sensitive and miss those who do truly have celiac disease but are very specific for celiac disease. Positive values for those would be very reliable. Others are more sensitive but less specific for celiac disease. That's why it's important to have a full celiac panel run to look at a number of tests.  https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

The gold standard of celiac diagnosis is the endoscopy with biopsy.

[RMJ]

The biopsy was and still is considered the gold standard for diagnosis of celiac disease.

[cristiana]

I'm not sure if you are posting from the UK (your spelling of coeliac makes me think you might be) but if you are British, I'd be inclined to ask for a copy of your biopsy results via your GP surgery, which should be available to you, even if they have been archived.  Then, try to find out if there was villous atrophy, and what it was on the Marsh Scale. If that damage was there, there is your proof.  I agree with @RMJ, it was and still is the gold standard for diagnosis.

 

 

 

[trents]

2 hours ago, Stephen Benge said:

 

"I am not sure how long the serum antibody tests specific to celiac disease have been available but they are pretty accurate."

Just found the answer to the question my own comment raised:

"While in 1997, The role of the antigen tissue transglutaminase (TtG) in celiac disease is discovered." https://www.beyondceliac.org/celiac-disease/celiac-history/

So, I'm guessing it wasn't until the late 1990's that celiac antibody testing was widely available.

[Stephen Benge]

Thank you, that’s interesting