Blood test results confusion!

[tashw96]

Hi,

I'm completely new to all of this! After feeling very tired, cold, sick in general etc I asked to have a blood test done for a bunch of things a couple of weeks ago. I hadn't even considered the possibility of having coeliac disease as I know people with it and I didn't have any symptoms similar to theirs like diarrhoea or constipation! However, my results came back today and the doctor seemed really shocked and said that my IgA tissue transglutaminase result was : 2530.1 u/ml
After he told me that a normal value is between 0-20 I was so shocked! Does this seem right to you all? It seems ridiculously high when anything over 30 u/ml is considered testing positive. I'm especially confused as he said it was strange that I didn't have any severe/serious symptoms. I will be getting a biopsy done in the next couple of months but have heard that it really is the blood test that matters the most. Wanted people's opinions on this? Is this a ridiculous figure? Does it sound false? 
Sorry if my question is silly or anything but until today I really didn't know anything about the disease and want to know what this means for my future!

Thanks
Tx

[cyclinglady]

33 minutes ago, tashw96 said:

Hi,

I'm completely new to all of this! After feeling very tired, cold, sick in general etc I asked to have a blood test done for a bunch of things a couple of weeks ago. I hadn't even considered the possibility of having coeliac disease as I know people with it and I didn't have any symptoms similar to theirs like diarrhoea or constipation! However, my results came back today and the doctor seemed really shocked and said that my IgA tissue transglutaminase result was : 2530.1 u/ml
After he told me that a normal value is between 0-20 I was so shocked! Does this seem right to you all? It seems ridiculously high when anything over 30 u/ml is considered testing positive. I'm especially confused as he said it was strange that I didn't have any severe/serious symptoms. I will be getting a biopsy done in the next couple of months but have heard that it really is the blood test that matters the most. Wanted people's opinions on this? Is this a ridiculous figure? Does it sound false? 
Sorry if my question is silly or anything but until today I really didn't know anything about the disease and want to know what this means for my future!

Thanks
Tx

I do not think it is false.  Some labs, like mine, cut off at 200 when anything over 20 is considered abnormal.  I have had thyroid antibodies test results that were measure at over 2,000 when anything over 30 was considered to be a positive.  It all depends on the lab.  But higher antibodies does not necessarily correlate with intestinal damage.  In other words, you might have GI damage, but it might not be severe.  

Even years later, my antibodies can become elevated (off the charts) after a gluten exposure.  They can remain elevated even after my gut has healed.  This was just confirmed by a repeat endoscopy last month (so following a gluten free diet can heal your gut!)  My non-medical theory is that my system is always on hyperalert.  I have lots of allergies and come from a family who carries many EPI pens.  

The celiac antibodies tests are good, but not perfect.  It is one of the reasons why the endoscopy to obtain biopsies is still the gold standard in diagnosing celiac disease.  

Like you, I had no GI issues at the time I was diagnosed.  I went in for a colonoscopy because I am over 50 and all my friends were getting them ?.  I was anemic, but doctors blamed a genetic anemia that I had as well.  I definitely needed the endoscopy to confirm my diagnosis, because I could not believe my tests results either.  

You can ask for the rest of the celiac panel, just as additional confirmation, but remember, it only takes ONE positive on the panel to move forward to an endoscopy. 

Keep eating gluten until you see your GI.  This is really important.  You can try to get an earlier appointment if there are any cancellations.  

Take care! 

[tashw96]

15 minutes ago, cyclinglady said:

I do not think it is false.  Some labs, like mine, cut off at 200 when anything over 20 is considered abnormal.  I have had thyroid antibodies test results that were measure at over 2,000 when anything over 30 was considered to be a positive.  It all depends on the lab.  But higher antibodies does not necessarily correlate with intestinal damage.  In other words, you might have GI damage, but it might not be severe.  

Even years later, my antibodies can become elevated (off the charts) after a gluten exposure.  They can remain elevated even after my gut has healed.  This was just confirmed by a repeat endoscopy last month (so following a gluten free diet can heal your gut!)  My non-medical theory is that my system is always on hyperalert.  I have lots of allergies and come from a family who carries many EPI pens.  

The celiac antibodies tests are good, but not perfect.  It is one of the reasons why the endoscopy to obtain biopsies is still the gold standard in diagnosing celiac disease.  

Like you, I had no GI issues at the time I was diagnosed.  I went in for a colonoscopy because I am over 50 and all my friends were getting them ?.  I was anemic, but doctors blamed a genetic anemia that I had as well.  I definitely needed the endoscopy to confirm my diagnosis, because I could not believe my tests results either.  

You can ask for the rest of the celiac panel, just as additional confirmation, but remember, it only takes ONE positive on the panel to move forward to an endoscopy. 

Keep eating gluten until you see your GI.  This is really important.  You can try to get an earlier appointment if there are any cancellations.  

Take care! 

Thank you so much for your reply!

I guess it's good to know that it probably isn't false so that I can diagnose it and sort it quicker. I'm also slightly anemic, and I'm 21 which I guess might explain my lack of symptoms if there isn't significant GI damage? I don't really have a clue though, like I said I'd never even thought of Coeliac disease until today. 

Thank you again for your reply and advice!

Tx

[cyclinglady]

Anemia is one of the more common symptoms of celiac disease as is osteoporosis.  The good news is that with a gluten free diet, everything should resolve as you are young.  In my case, I did not know I had osteoporosis (you might not have it), but I am old and it is really too late to build a lot of bone, but you can.  Make an extra effort to exercise and eat well over the next year!  

It is amazing how your body can adapt to something like anemia or celiac disease.  I blame my anemia on my failure to make it to the Olympics!  ?.  I have made it on the podium for some races, but that is because there is a lot less competition when you hit the over 40 club!  

[tashw96]

1 hour ago, cyclinglady said:

Anemia is one of the more common symptoms of celiac disease as is osteoporosis.  The good news is that with a gluten free diet, everything should resolve as you are young.  In my case, I did not know I had osteoporosis (you might not have it), but I am old and it is really too late to build a lot of bone, but you can.  Make an extra effort to exercise and eat well over the next year!  

It is amazing how your body can adapt to something like anemia or celiac disease.  I blame my anemia on my failure to make it to the Olympics!  ?.  I have made it on the podium for some races, but that is because there is a lot less competition when you hit the over 40 club!  

Ah I didn't know that! Okay brilliant, thank you for helping me out! Haha, that is very impressive, not too sure I'll be able to use that as my excuse though, maybe this will be my year to get super fit, turn it all around!