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Good evening...... I’m new here so bear with me 😊 

I am historically anemic and went to my doctors for a blood test recently, to my surprise my doctor sent my blood to be tested for celiac, I have no obvious symptoms, luckily, however to my surprise my tga were just a bit above average, I suppose as they were abnormal they went on to test the next step, sorry I can’t remember what it was, however this came back positive, With a highly suggestive result of celiac disease. I’m very shocked as like I said I would never of said I was celiac. 
anyway I’m going on... I’ve been referred to a specialist, will this likely involve a biopsy, I’m not thrilled at the thought in case it’s something else. Any advice would be greatly appreciated. 
thank you for reading this.

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Welcome to the forum! 

If possible, could you get your blood test results and share them, along with the cut off makers for a positive for celiac disease, as the tests can vary depending on the lab. With more info we can be more helpful.

In Europe (ok, you're no longer in Europe 😉) the protocol in many cases where tests fall 10x the cut off level for celiac disease, no biopsy is needed to make the diagnosis.

It sounds to me like you could be one of many celiacs who have no symptoms, is this correct?

Scott Adams

Celiac.com - Celiac Disease Board Moderator

Founder Celiac.com

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Thank you for replying. I have my blood results so here goes..... my anti tissue antibody was 4.26, the normal range is 0.8 -4.00, so only over a tiny bit. They then tested my serum endomysium antibodies, this said positive and the interpretation on the results says “highly suggestive of celiac disease “ 

i don’t have the crippling symptoms that most people have, I’m always tired and could sleep all day if I could but that could mean my anemia.... oh which I’m not right now 😊 first time since 1999, my b12 and liver function is all normal , it’s like Pandora’s box has been opened now 

any help about the next step would be brilliant , thank you for your time.

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I would agree with their findings that you most likely have celiac disease. If you have a hard time believing it you might request a biopsy, but two positive results, even if they are just above the cut off markers, are still positive. Normal people don't react this way to gluten and have these antibody levels.

Scott Adams

Celiac.com - Celiac Disease Board Moderator

Founder Celiac.com

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Thanks Scott, I really appreciate you replying to me..... I’m a bit out of my depth with this. 
i do have a couple more questions if possible please...... could those test results mean something else is wrong and what would the usual steps taken when my appointment comes through with the specialist clinic. 
oh and one more.... I’m freaking out about the extent of damage I could of done as I had no symptoms, I’m 50 years old but consider myself a young 50 😊 

thank you for helping me with all of this.

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Hi Ellawalls

I'm chiming in here as I am based in the UK and like you was referred to a consultant once my blood tests came through as positive. 

In my own case my consultant was very keen to do an endoscopy as he said it was considered to be the "Gold Standard" means of diagnosing coeliac disease.  I imagine this is because they can actually take samples and can see what grade on the Marsh scale you are at, which stages the damage done to the villi in your gut.  That said, I am wondering now if they are taking this approach in these strange times as where I live in England the waiting lists are now over a year long in the local NHS hospital for gastroenterology procedures, due to Covid-19, and I wonder if they might take blood tests as sufficient proof?  This is pure conjecture on my part, but it will be interesting to see what happens when you go for your appointment.

Try not to worry about the damage you may or may not have had.  I worried about that sort of thing but every coeliac is different -  I have friends of all ages with this disease and many of them are healthier than some of my non-coeliac friends.  My own consultant likes to tell me that he once diagnosed someone of 96 which I also find  reassuring!

The good thing is,  now you are on the coeliac radar you should get plenty of help with the NHS.  Also, have a look also at Coeliac UK's website.  Worth joining if you are diagnosed - they provide food and drink guides and all sorts of advice which will help you a lot.

Take care, I hope all goes well.

C

 

 

 

Diagnosed by blood test and endoscopy Spring 2013

Adopted a gluten-free diet in May 2013

 

BRITISH

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7 hours ago, Ellawells said:

Thanks Scott, I really appreciate you replying to me..... I’m a bit out of my depth with this. 
i do have a couple more questions if possible please...... could those test results mean something else is wrong and what would the usual steps taken when my appointment comes through with the specialist clinic. 
oh and one more.... I’m freaking out about the extent of damage I could of done as I had no symptoms, I’m 50 years old but consider myself a young 50 😊 

thank you for helping me with all of this.

The next step might by an endoscopy, and if you do this you need to eat gluten daily for at least two weeks before for the results to be accurate. I would not worry too much about how much damage there might be at this point, because that's why the endoscopy is done, to find this out. If you do have gut damage it will start healing immediately on a gluten-free diet, and not every celiac has serious gut damage.

Scott Adams

Celiac.com - Celiac Disease Board Moderator

Founder Celiac.com

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Wow, thank you both for all of that information 😊 mmm I wonder if they will bother as both are positive, I can’t lie I feel like I’m a bit of a fraud As I have no symptoms that would suggest celiac at all..... apart from my bloods I suppose. I’m putting the jigsaw together slowly, my mum is almost completely gluten-free as she suffers terribly with foods and my daughter does have some symptoms when she eats bread, we’re just have to wait and see now I suppose 

I will keep you updated of my progress etc and once again thank you for all the information, it’s been a massive help 😊 

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Wow, thank you both for all of that information 😊 mmm I wonder if they will bother as both are positive, I can’t lie I feel like I’m a bit of a fraud As I have no symptoms that would suggest celiac at all..... apart from my bloods I suppose. I’m putting the jigsaw together slowly, my mum is almost completely gluten-free as she suffers terribly with foods and my daughter does have some symptoms when she eats bread, we’re just have to wait and see now I suppose 

I will keep you updated of my progress etc and once again thank you for all the information, it’s been a massive help 😊 

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Thanks Scott.... I’ve spoken to my mum and she recommended I get a genetic test, don’t think there’s any point wasting money on one for me now but I’m definitely going to try and find one for her because out of anyone she is the one who I would of said is celiac..... it’s funny because she said she only started having problems in her 50s , I’m still going over my bloods worrying that That they mean something else, the only thing I found that could mean something else is liver disease but my liver function came back normal. I’m obviously thinking far too much about this right now 😊.

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On 4/4/2021 at 6:48 AM, Ellawells said:

Thanks Scott.... I’ve spoken to my mum and she recommended I get a genetic test, don’t think there’s any point wasting money on one for me now but I’m definitely going to try and find one for her because out of anyone she is the one who I would of said is celiac..... it’s funny because she said she only started having problems in her 50s , I’m still going over my bloods worrying that That they mean something else, the only thing I found that could mean something else is liver disease but my liver function came back normal. I’m obviously thinking far too much about this right now 😊.

Hey Ellawells,

I'm in the UK too (Scotland) - just diagnosed a couple of weeks ago. My doctor sent me for a test after we found out I had hypothyroidism and a bunch of nutrient deficiencies, then I was referred to gastro for the endoscopy but they said my levels were high enough (I don't know the actual number) that they would give me an official diagnosis without the biopsy if I tested positive again. The NHS are testing my brother now, just based on my test, so you should be able to get your mum tested for celiac's without a genetic test. 

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Welcome to the forum @acurry

It's great to hear that you have a doctor who is on top of this. The UK diagnostic criteria for blood tests only is fairly new, and more about that is here:

 

Scott Adams

Celiac.com - Celiac Disease Board Moderator

Founder Celiac.com

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That’s a really interesting read, thank you for posting it. I feel in limbo right now as haven’t heard anything at all and still eating normally, I’m not expecting to hear for a while, I’ll keep you posted of the journey 

thank you for all the help this site has given me. It’s been amazing 

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