Not sure what this means now

[Ellawells]

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.

[Scott Adams]

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?

[Ellawells]

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.

[Scott Adams]

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.

[Ellawells]

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.

[cristiana]

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

 

 

 

[Scott Adams]

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.

[Ellawells]

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 😊 

[Scott Adams]

Around 44% of first-degree relatives will also have or get celiac disease, so be sure to talk with your family about it and encourage them to get a blood test.

[Ellawells]

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 😊 

[Ellawells]

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 😊.

[Scott Adams]

A genetic test is a good way to go for your mom! If she has the genetic makeup she should follow up with a screening for celiac disease.

[acurry]

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. 

[Scott Adams]

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:

 

[Ellawells]

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 

[Ellawells]

good evening all, just thought I’ll give you all an update, I finally have my endoscopy booked for next week, I’m really nervous as still eating gluten with no symptoms, I’m still trying to find out if my positive blood work could mean something else, anyways I’ll update once I have the results, thanks for all the advice so far xx

[cristiana]

1 hour ago, Ellawells said:

good evening all, just thought I’ll give you all an update, I finally have my endoscopy booked for next week, I’m really nervous as still eating gluten with no symptoms, I’m still trying to find out if my positive blood work could mean something else, anyways I’ll update once I have the results, thanks for all the advice so far xx

Ellawells... thank you so much for the update.  I've just read my first post to you was back in April.  It's been quite a long wait for you but at least soon you will know for sure, one way or another.   I hope it all goes well.  Do come back to us when you have your results.   As you are still eating normally, make sure you eat something you might miss if you do have to give up gluten in the run up to the test.   I remember eating a lot of Weetabix and Penguin bars!

[Ellawells]

 

21 hours ago, cristiana said:

Ellawells... thank you so much for the update.  I've just read my first post to you was back in April.  It's been quite a long wait for you but at least soon you will know for sure, one way or another.   I hope it all goes well.  Do come back to us when you have your results.   As you are still eating normally, make sure you eat something you might miss if you do have to give up gluten in the run up to the test.   I remember eating a lot of Weetabix and Penguin bars!

Ahh thank you, I will definitely update 😊 haha funnily enough I went food shopping tonight and brought some bits that I absolutely love, I’m going to stuff my face with naughty food for the next 10 days.... just incase I can’t eat them again. I lingered on the gluten free area but thought to myself “ not yet “ 😀 I’m actually amazed that I got an appointment before Christmas considering COVID, not sure if I have to isolate 48 hours before as my friend is having a procedure and she was told this, hopefully not x

[cristiana]

Just now, Ellawells said:

 

Ahh thank you, I will definitely update 😊 haha funnily enough I went food shopping tonight and brought some bits that I absolutely love, I’m going to stuff my face with naughty food for the next 10 days.... just incase I can’t eat them again. I lingered on the gluten free area but thought to myself “ not yet “ 😀 I’m actually amazed that I got an appointment before Christmas considering COVID, not sure if I have to isolate 48 hours before as my friend is having a procedure and she was told this, hopefully not x

Good for you!  I definitely recommend that course of action if someone can tolerate it.  In my own case chocolate Penguins and Weetabix beat two pieces of wholemeal bread a day hands down!  (Mind you, make sure that the naughty food you have bought is packed with gluten!)

Funnily enough I've just had to have a hospital appointment which I just couldn't afford to miss.  I decided to really limit my socialising in the days prior to the tests although I was not asked to.  Doors and windows open, facemasks, hand sanitiser, social distancing on steroids!  I was a bit of a pain about it but  I just couldn't bear the thought of having had to wait six weeks for the tests only to get a cough or temperature the night before....

[Ellawells]

 

21 hours ago, cristiana said:

Good for you!  I definitely recommend that course of action if someone can tolerate it.  In my own case chocolate Penguins and Weetabix beat two pieces of wholemeal bread a day hands down!  (Mind you, make sure that the naughty food you have bought is packed with gluten!)

Funnily enough I've just had to have a hospital appointment which I just couldn't afford to miss.  I decided to really limit my socialising in the days prior to the tests although I was not asked to.  Doors and windows open, facemasks, hand sanitiser, social distancing on steroids!  I was a bit of a pain about it but  I just couldn't bear the thought of having had to wait six weeks for the tests only to get a cough or temperature the night before....

Ahh that’s good to know, I’ll be extra careful although I work in retail/pharmacy so I’ll try my best 😊 

I have another question..... I’ve been looking on here and alot of people are waiting for the biopsy results, do you think I’ll get an indication after the appointment or will they just send me on my way and also do you think my other half will be allowed in, even just the waiting room as they said I will need someone with me as I’m a big baby and asked for sedation, worried if they tell me something I’ll forget probably immediately . 
thanks Christina your alot of help x

[cristiana]

Hi Ella

A friend of mine was told during the endoscopy that her gut was so damaged the doctor could see she had celiac disease.   Now I've never heard anyone else say this - not even on the forum - so I don't know how typical this is?  What I do know is she didn't have a sedative so perhaps this is the sort of conversation one might overhear the staff making, if one is completely compos mentis!

I went to a private hospital for my endoscopy.   All I was told afterwards by my doctor who conducted the endoscopy was that he had taken a lot of samples.  I then got a letter a few days later saying, somewhat confusingly, that my endoscopy was normal.  You may be told that - but I've since learned that when they say that it looked normal they mean the stomach didn't look red or inflamed, there was no obvious damage, no ulcers etc etc.    What matters is the  results from the samples which the lab has to report back on. In my own case they came back a few days later saying I'd got damaged villi and the staging was Marked Atrophy (I think 3b from memory on the scale, which meant it was one stage off complete atrophy.)

So I guess what I am saying here is I expect you will need to wait to hear back from the lab and this could take a while.   I'd be surprised if anyone said anything on the day.  I would speak to the person who books you in, or the person who is going to give you the sedative, that you'd like feedback on the day and see what they say.  

I wish I could say whether your other half could be there.  My thoughts are probably not with Covid etc.   But try not to worry, once the sedative is administered I always feel so relaxed and when I come round, it feels like I've just had a lovely sleep, although I remember one or two things about the procedure it's almost as if it was all over in a flash.  My consultant says it's like having had a lot to drink without a hangover.  I'll just have to take his word for that as I can't stand the taste of alcohol so have never been there! 

Edited August 24, 2021 by cristiana

[Ellawells]

1 hour ago, cristiana said:

Hi Ella

A friend of mine was told during the endoscopy that her gut was so damaged the doctor could see she had celiac disease.   Now I've never heard anyone else say this - not even on the forum - so I don't know how typical this is?  What I do know is she didn't have a sedative so perhaps this is the sort of conversation one might overhear the staff making, if one is completely compos mentis!

I went to a private hospital for my endoscopy.   All I was told afterwards by my doctor who conducted the endoscopy was that he had taken a lot of samples.  I then got a letter a few days later saying, somewhat confusingly, that my endoscopy was normal.  You may be told that - but I've since learned that when they say that it looked normal they mean the stomach didn't look red or inflamed, there was no obvious damage, no ulcers etc etc.    What matters is the  results from the samples which the lab has to report back on. In my own case they came back a few days later saying I'd got damaged villi and the staging was Marked Atrophy (I think 3b from memory on the scale, which meant it was one stage off complete atrophy.)

So I guess what I am saying here is I expect you will need to wait to hear back from the lab and this could take a while.   I'd be surprised if anyone said anything on the day.  I would speak to the person who books you in, or the person who is going to give you the sedative, that you'd like feedback on the day and see what they say.  

I wish I could say whether your other half could be there.  My thoughts are probably not with Covid etc.   But try not to worry, once the sedative is administered I always feel so relaxed and when I come round, it feels like I've just had a lovely sleep, although I remember one or two things about the procedure it's almost as if it was all over in a flash.  My consultant says it's like having had a lot to drink without a hangover.  I'll just have to take his word for that as I can't stand the taste of alcohol so have never been there! 

That’s alot of very useful information, thank you very much for taking the time to pass it on. I suppose I’ll know when I know and in the meantime I’ll try not to overthink it. I guess if I had symptoms I absolutely wouldn’t mind going but I’m worried as I have no symptoms what might of caused me to be positive or highly suggestive of celiac, I’m thinking the worse case scenario, I’ll almost be relieved if it does come back positive, what I don’t want is that the initial bloods showing positive  meant that I had something else . 
I will definitely keep you posted whatever happens xx

[cristiana]

7 minutes ago, Ellawells said:

That’s alot of very useful information, thank you very much for taking the time to pass it on. I suppose I’ll know when I know and in the meantime I’ll try not to overthink it. I guess if I had symptoms I absolutely wouldn’t mind going but I’m worried as I have no symptoms what might of caused me to be positive or highly suggestive of celiac, I’m thinking the worse case scenario, I’ll almost be relieved if it does come back positive, what I don’t want is that the initial bloods showing positive  meant that I had something else . 
I will definitely keep you posted whatever happens xx

Thanks so much, it would be great to know how you got on.   My own blood test results were off the chart, but I was still concerned that I had something else and it would be a normal biopsy!  I don't think this is an unusual concern.   I hope that you won't be kept waiting too long for your results. I think things might get a bit held up with the Covid catch up, but don't be afraid to chase the results if they take longer than expected.  Sometimes it can just be an admin error that holds things up.  Take care and "speak" soon. ☺️

Cristiana  

Edited August 24, 2021 by cristiana

[notme]

On 8/24/2021 at 1:27 PM, cristiana said:

Hi Ella

A friend of mine was told during the endoscopy that her gut was so damaged the doctor could see she had celiac disease.   Now I've never heard anyone else say this - not even on the forum - so I don't know how typical this is?  What I do know is she didn't have a sedative so perhaps this is the sort of conversation one might overhear the staff making, if one is completely compos mentis!

I went to a private hospital for my endoscopy.   All I was told afterwards by my doctor who conducted the endoscopy was that he had taken a lot of samples.  I then got a letter a few days later saying, somewhat confusingly, that my endoscopy was normal.  You may be told that - but I've since learned that when they say that it looked normal they mean the stomach didn't look red or inflamed, there was no obvious damage, no ulcers etc etc.    What matters is the  results from the samples which the lab has to report back on. In my own case they came back a few days later saying I'd got damaged villi and the staging was Marked Atrophy (I think 3b from memory on the scale, which meant it was one stage off complete atrophy.)

! 

when i had my endoscopy, the doctor put in her report that she visually saw damage.  i was under sedation, so i wouldn't know this if she didn't include it.   i was surprised, because my blood tests had all came back negative.  so, 10 years later, i am feeling finer than frog hair split four ways   that's redneck for 'great' 

my brother, my daughter (also hypoglycemic and dx'd with r.a. at age 12), my son (also has type 1 diabetes), and my nephew are all gluten free.   so, my dx has actually helped the rest of my family who were suffering to try the diet and they're definitely all doing very well.  

my vitamin levels were all over the place before i got dx'd - my b12 and vit D was tanked, i had high selenium (?) and high iron.  also, my liver enzymes were elevated and a few other weird things.   i think my wbc was high??  can't recall - but - everything eventually got to running smoothly and back to normal, good levels.  your nutrients are not being absorbed.

personally, if your blood tests came back positive, that's a good indicator that you'll have a celiac diagnosis.  o, and, hey, i'm an old young lady, too.    allllll my strange fatigue, rashes, migraines, etc went away once i changed my diet!!  some of it took awhile, but i continue to improve.  also, my natural immunity is tremendously improved.  like almost bulletproof   i have only been ill once in 10 plus years that i had to take an antibiotic.  i used to catch every germ that came around, now the whole house gets it and i do not.  so, there's that to look forward to!!  good luck!!   

[Ellawells]

Thank you so much for the information, I’m having a really hard time in thinking I am celiac, I’ve just looked at my original bloods taken in March and my endoymysial antibodies were normal but my serum endoymysium antibodies were positive, surely both would be positive if I was celiac. Oh and also I’ve had an enormous amount of paperwork and seems I am to be contacted for a covid test otherwise it can’t go ahead and even worse ( for me anyways) they are going through my nose for the endoscopy, not sure why 🤔