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Likelihood of Positive biopsy?


swiftie-13

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swiftie-13 Rookie

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 :)


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cristiana Veteran

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 Rookie
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 Veteran

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 Grand Master

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 Contributor

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  😒

 

 

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    • Wheatwacked
      Hi @Ginger38, By now you know that these things improve without gluten. I once saw an interview with a corporation executive where he proudly declared that his wheat products are more addictive than potato chips. Dr Fuhrman (Eat to Live) said find foods that are friendly to you to be friends with.  
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      Hi @CC90 Ah... that is very interesting.  Although it is very annoying for you to have to go through it all again, I would say that almost sounds like an admission that they didn't look far enough last time?   I could be wrong, but I would not be at all surprised if they find something on the next attempt.  Coeliac damage can be very patchy, as I understand it, so that's why my own gastroenterologist always likes to point out that he's taken lots of samples!  In the kindest possible way (you don't want to upset the person doing the procedure!) I'd be inclined to tell them what happened last time and to ask them in person to take samples lower down, as  if your health system is anything like the one in my country, communication between GPs, consultants and hospitals isn't always very good.  You don't want the same mistake to be made again. You say that your first endoscopy was traumatic?  May I ask, looking at your spelling of coeliac, was this done at an NHS hospital in England?  The reason for the question is that one of my NHS diagnosed friends was not automatically offered a sedative and managed without one.  Inspired by her, I tried to have an endoscopy one time, in a private setting, without one, so that I could recover quicker, but I had to request sedative in the end it was so uncomfortable.    I am sorry that you will have to go through a gluten challenge again but to make things easier, ensure you eat things containing gluten that you will miss should you have to go gluten free one day. 😂 I was told to eat 2 slices of normal wholemeal bread or the equivalent every day in the weeks before , but I also opted for Weetabix and dozens of Penguin chocolate biscuits.  (I had a very tight headache across my temple for days before the procedure, which I thought was interesting as I had that frequently growing up. - must have been a coeliac symptom!)  Anyway, I do hope you soon get the answers you are looking for and do keep us posted. Cristiana  
    • CC90
      Hi Cristiana   Yes I've had the biopsy results showing normal villi and intestinal mucosa.  The repeat endoscopy (requested by the gastro doc) would be to take samples from further into the intestine than the previous endoscopy reached.      
    • Wheatwacked
      Transglutaminase IgA is the gold-standard blood test for celiac disease. Sensitivity of over 90% and specificity of 95–99%. It rarely produces false positives.  An elevated level means your immune system is reacting to gluten.  Non-Celiac Gluten Sensitivity (NCGS) does not typically cause high levels of tTG-IgA. Unfortunately the protocols for a diagnosis of Celiac Disease are aimed at proving you don't have it, leaving you twisting in the wind. Genetic testing and improvement on a trial gluten free diet, also avoiding milk protein, will likely show improvement in short order if it is Celiac; but will that satisfy the medical system for a diagnosis? If you do end up scheduling a repeat endoscopy, be sure to eat up to 10 grams of gluten for 8 - 12 weeks.  You want  to create maximum damage. Not a medical opinion, but my vote is yes.
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      Cristiana asks a very relevant question. What looks normal to the naked eye may not look normal under the microscope.
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