Likelihood of Positive biopsy?

[swiftie-13]

Hi! 

I had a positive ttg (70), and yesterday I got my gastroscopy/biopsy, so I'm just waiting for results!

And I'm so anxious about it! Just really want confirmation that it's coeliac, as I would feel at a loss if it comes back negative...

Do most people get a positive biopsy if they have had a positive blood result? 

I'm just wondering what the likelihood is, especially as my brother was also recently diagnosed with coeliac! The endoscopist seemed to think it's a likely diagnosis, but I'm scared it's not going to show up since I don't have the typical GI symptoms! 

 

Thanks :)

[cristiana]

Hello Swiftie and welcome to the forum!

I can remember feeling exactly the same as you before my results came about.   I remember thinking, if this isn't coeliac, what is it?!

I didn't have proper GI symptoms until after some time after my diagnosis journey began.  My journey started with anaemia, clinical anxiety and weird blood test results (liver function tests).  I often say on this forum, I'm glad that my GI symptoms finally turned up as I am not sure the doctors would have known what they were looking for otherwise!

Out of interest, was it your own brother's diagnosis that triggered your tests?  

If you get the confirmation - and yes, I'd say it's likely you have coeliac disease with those numbers, and your family history - the beginners guide below is a great post to read.  Also, looking at your spelling of coeliac, if you live in the UK I'd thoroughly recommend joining Coeliac UK for your first year.  They have a helpful Food and Drink Guide and an app which will make your supermarket trips so much easier.

Do come back to us if we can help.

Cristiana

 

 

[swiftie-13]

37 minutes ago, cristiana said:

Hello Swiftie and welcome to the forum!

I can remember feeling exactly the same as you before my results came about.   I remember thinking, if this isn't coeliac, what is it?!

I didn't have proper GI symptoms until after some time after my diagnosis journey began.  My journey started with anaemia, clinical anxiety and weird blood test results (liver function tests).  I often say on this forum, I'm glad that my GI symptoms finally turned up as I am not sure the doctors would have known what they were looking for otherwise!

Out of interest, was it your own brother's diagnosis that triggered your tests?  

If you get the confirmation - and yes, I'd say it's likely you have coeliac disease with those numbers, and your family history - the beginners guide below is a great post to read.  Also, looking at your spelling of coeliac, if you live in the UK I'd thoroughly recommend joining Coeliac UK for your first year.  They have a helpful Food and Drink Guide and an app which will make your supermarket trips so much easier.

Do come back to us if we can help.

Cristiana

 

 

Hi, Thanks for the reply! 

To be fair, I've thought I had ibs for a few years, but it's just never been so constant or bad. 

 

I went for a blood test as i had just been super tired and had a lot more brain fog than usual. But I did mention my brothers diagnosis, so my GP recommended a coeliac test too. Did not expect it to come back positive! 

And that coeliac uk app sounds so useful, thank you! Will definitely be useful if I have to venture on this new gluten free journey!

 

 

[cristiana]

You are welcome.  Your GP is really 'on the ball' - I asked if my parents could be tested, and my request was refused because they didn't have anaemia or GI symptoms.   

Take care and enjoy the Jubilee Holiday!🍰

C

 

[trents]

Yes, most people who have positive antibody tests will have positive biopsies but some so not. Depends on many things, actually: How soon the disease was caught, individual immune system responses and constitutions, and, perhaps more than anything else, the thoroughness and experience of the one doing the scoping. Unfortunately, many GI docs don't sample both the duodenum and the duodenum bulb and don't sample enough places in general. The damage can be spotty.

[C4Celiac]

makes no difference what the biopsy sees in terms of damage.. you 100% without a doubt have Celiac with a ttg of 70 and a brother who has it. It's very hereditary. 

strangely enough I'm the only one that has this and have never heard of anyone in the family ever having it.  My 3 cousins have never been tested though but don't have any signs or symptoms that I know of...

maybe I'm adopted  😒