Blood Testing

[AJO21]

Hello, I am new here, thank you all in advance for the advice.

 

I just got the blood tests back from my doctor and he neglected to even mention the results from the celiac panel that he ran. After having the nurse print a copy of all of the results, I noticed 2 abnormalities in the findings and under the interpretation it is noted, "Serological evidence for celiac disease is present. Consider IgA deficiency. Here are the results from the 3 tests;

 

Tissue Transglutaminase: 1. 

Immunoglobulin A: <15

Tissue Transglutaminase AB IGG: 9

 

So from my understanding of these results, the IGG was positive, and the other 2 were negative but my IgA was well below normal limits. Why did my doctor fail to even mention these results and should I be concerned?

[nora-n]

The lab´s comment was right! Good they ran the total IgA.

[LauraTX]

Yep, the fact that your total IgA is so low, means the tissue transglutaminase IgA is not reliable.  The IgG one is positive.  It would be a good idea to look into getting an endoscopy done so you can get a biopsy and follow through with a proper diagnosis.  I would also follow up with your primary care doctor about the IgA deficiency to make sure it is just that, and not a full blown immunodeficiency,

[GeorgeDaniel]

the value of 9 for TTG IgG is that unit in U/mL? 

[AJO21]

Thank you all for the quick responses, sorry I did not put the units or anything for the tests results, yes George, it is in u/ml 

 

TTG IgA: 1 U/ml   

 

Immunoglobulin A: <15  reference range 81-463 mg/dl

 

TTG IgG: 9 U/ml   

[nvsmom]

the value of 9 for TTG IgG is that unit in U/mL? 

Reference ranges vary a great deal between labs, GeorgeDaniel so don't trust AJO21's numbers even if the units are the same.  My lab's reference ranges for the tTG tests were 0-20 so those results would all be negative at my lab.  Others go from 0-10, 0-4, or even 0-1.0,

 

AJO21 - 5% of celiacs are deficient in IgA, which is higher than the regular population. Because a low IgA will cause false negative IgA based tests (tTG IgA, EMA IgA, DGP IgA), a celiac will need to rely on IgG based tests (tTG IgG, DGP IgG) or the endoscopic biopsy, to get diagnosed.

 

That tTG IgG test has a notoriously low sensitivity (40%) so you're lucky it caught you!  Well, not really lucky, I guess.  

 

Welcome to the club and good luck with the gluten-free diet!  

[AJO21]

Okay so I will have to request more IgG related. blood tests then. 6 or higher was considered positive for the test my doctor ran, sorry i thought they all would have the same reference range. My doctor failed to even address these results and my symptoms still seem very mild for an extreme diagnosis such as this (Gas bloating, occasional diarrhea, as well as headaches fatigue and sinusitis which was diagnosed as a sinus infection, don't know if that is relevant but those were my symptoms when I first went to the doctor). Currently awaiting test results for h.Pylori as well. Thanks for the advice nvsmom. I have started keeping a food log of everything I eat and how I feel afterwards because I am not sure I am ready to believe this just yet. What are the chances this was a false positive? I am in denial, I know. lol 

[nvsmom]

No problem. Two years ago someone on this board gave me all the advice I passed on to you.  It's always good to hear from other people going through the same things.

 

Generally speaking, a positive celiac test is a positive and you have celiac disease.  False positive are rare. It's the tTG IgA which seems to have the most, and that's at about 5%. Those false positive are caused by something, usually a serious infection, thyroiditis, diabetes, crohn's, colitis, or liver disease; it's usually a very weak positive in those cases.  (Your result is not crazy high but it's not overly weak either.) Don't believe the doctor if he just tries to dismiss it - and some do - as a positive is caused by something and it is usually the obvious (celiac disease).  

 

Think of it like a pregnancy test.  Sometimes those double lines are faint (weak) and other times they are dark, but they both mean the same thing will happen in 9 months.  

 

Here's some info on the tTG IgG.  The specificity of the tTG IgG (how often a positive is caused by celiac disease is pretty high.  Open Original Shared Link

 

Pages 8-12 of this report has info on testing but does not include the tTG IgG - I presume it is because it has such a low sensitivity. Open Original Shared Link

 

And I completely understand about denial.    Most of us have been there. You are in good company here.

 

Good luck with the H.pylori!

[AJO21]

Thank you all so much for the information, thank nvsmom you are incredibly helpful! I'm sure you will be seeing a lot more of me here from now on, its great to have guidance and understanding from all of you!

[GeorgeDaniel]

Reference ranges vary a great deal between labs, GeorgeDaniel so don't trust AJO21's numbers even if the units are the same.  My lab's reference ranges for the tTG tests were 0-20 so those results would all be negative at my lab.  Others go from 0-10, 0-4, or even 0-1.0,

 

AJO21 - 5% of celiacs are deficient in IgA, which is higher than the regular population. Because a low IgA will cause false negative IgA based tests (tTG IgA, EMA IgA, DGP IgA), a celiac will need to rely on IgG based tests (tTG IgG, DGP IgG) or the endoscopic biopsy, to get diagnosed.

 

That tTG IgG test has a notoriously low sensitivity (40%) so you're lucky it caught you!  Well, not really lucky, I guess.

 

Welcome to the club and good luck with the gluten-free diet!  

 

 

Thank you nvs mom! Its just that I got mine and the result is 8.9. I did this after a year and 10 months of being gluten free. My range is 0-10. Is that a weak positive? I mean my result? Thanks

[AJO21]

Alright so my doctor has just referred me to a Gastroenterologist. My question is this; A few days ago I decided to attempt a gluten free diet, to see if it made any difference (after 2 days, it has not but I did not expect improvement quickly). Should I continue with the gluten free diet before following up with the GE doc, or will he want more blood tests/endoscopy and will this mess with the results? On one hand an official diagnosis would be nice and I don't want to ruin the other tests but on the other hand it seems stupid to have the treatment to feeling better right in front of me but force myself to suffer until I get an official diagnosis.  

[nvsmom]

Alright so my doctor has just referred me to a Gastroenterologist. My question is this; A few days ago I decided to attempt a gluten free diet, to see if it made any difference (after 2 days, it has not but I did not expect improvement quickly). Should I continue with the gluten free diet before following up with the GE doc, or will he want more blood tests/endoscopy and will this mess with the results? On one hand an official diagnosis would be nice and I don't want to ruin the other tests but on the other hand it seems stupid to have the treatment to feeling better right in front of me but force myself to suffer until I get an official diagnosis.

I think that depends on how long it will take to see the GI. In my city, it takes a year to see a GI for suspected celiac disease unless there are very severe symptoms. If it is going to take a long time you might want to go gluten-free while waiting, otherwise it might be simpler and more accurate to keep eating gluten.... I am pretty sure the GI will want to run more tests and do an endoscopy.

Best of luck with whatever you decide to do.

[GottaSki]

Alright so my doctor has just referred me to a Gastroenterologist. My question is this; A few days ago I decided to attempt a gluten free diet, to see if it made any difference (after 2 days, it has not but I did not expect improvement quickly). Should I continue with the gluten free diet before following up with the GE doc, or will he want more blood tests/endoscopy and will this mess with the results? On one hand an official diagnosis would be nice and I don't want to ruin the other tests but on the other hand it seems stupid to have the treatment to feeling better right in front of me but force myself to suffer until I get an official diagnosis.  

 

Welcome AJ!

 

I'd vote for continuing to eat at least one slide of glutenous bread per day until you see how long it will take to get in with GI...preferably one with Celiac knowledge or experience.  Not all GI's understand celiac disease equally.

 

Once you removal all gluten, you lose the most valuable starting data.  Even if you decide to complete a gluten challenge at some point in the future, that information will not be as accurate as what you can obtain right now.

 

Hang in there...I know how frustrating celiac testing is.

[GottaSki]

 

 

Thank you nvs mom! Its just that I got mine and the result is 8.9. I did this after a year and 10 months of being gluten free. My range is 0-10. Is that a weak positive? I mean my result? Thanks

 

Hi George.

 

That result at nearly two years gluten-free means one of two things:

 

Your starting value prior to gluten removal was very high.

 

or

 

Gluten is still getting into your body.  Have you checked all your supplements, any personal care items that can make it into your mouth, do you eat out often or live in a home with a shared kitchen?

 

Welcome

[AJO21]

Thanks again for the advice, but now I have another question;

After further testing I am not IgA deficient, so the two IgA tests were valid and were both negative but the IgG is still positive. Does anyone know If there another cause for a positive IgG other than celiac? I don't have all the symptoms of celiac, I am not anemic, the only vitamin deficiency (that I know of) is Vit D which is very common among the general population. I am following up with my GI guy the first week of August I am just trying to get as much info as I can before my appointment.

[AJO21]

So this is very last minute and any help would be fantastic, but I have my first appointment with a GI doc tomorrow morning and need some advice. Should I be fasting before this appointment or does it not matter? Please let me know, Thanks! 

[kareng]

So this is very last minute and any help would be fantastic, but I have my first appointment with a GI doc tomorrow morning and need some advice. Should I be fasting before this appointment or does it not matter? Please let me know, Thanks! 

 

 

For the Celiac blood test?  no.  fasting doesn't matter.

[SMRI]

Does he have the capability to do an endoscope in his office?  If so, might not hurt to fast just in case?

[GottaSki]

Does he have the capability to do an endoscope in his office?  If so, might not hurt to fast just in case?

Have you experienced this?

I have never heard of endo at an initial appt...although it would be great!

[SMRI]

Have you experienced this?

I have never heard of endo at an initial appt...although it would be great!

 

Yes....but at the Mayo Clinic

[GottaSki]

Yes....but at the Mayo Clinic

Wow...I've had friends go there ... Lots of testing over several days, but an endo wasn't done until later in the process.

Again, that would be a huge improvement in "modern" GI offices, yet sincerely doubt this poster needs to fast for their initial appointment.

[AJO21]

Thank you all for the quick responses, I don't think an endo is going to happen tomorrow but I don't know what other tests they may run so I was just curious. I know the celiac panel does not require fasting but didnt know if there would be tests for anemia or other vitamin deficiencies that did require fasting. The way I've felt for the last couple days I think I may just fast anyways lol

[SMRI]

Thank you all for the quick responses, I don't think an endo is going to happen tomorrow but I don't know what other tests they may run so I was just curious. I know the celiac panel does not require fasting but didnt know if there would be tests for anemia or other vitamin deficiencies that did require fasting. The way I've felt for the last couple days I think I may just fast anyways lol

 

I had to fast for my bloodwork, not just for the Celiac testing, but for other tests they were doing.  If they are checking cholesterol, you need to fast for that, and if they check glucose levels, you need to fast for that.  Fasting allows them to run more tests at one time so I would too.

[AJO21]

Just finished my endoscopy a few hours ago, doctor said that he noticed irritation to the lining of my stomach but not my small intestine, he advised me to start a gluten free diet and is waiting for results for the biopsies (4 from the stomach, 4 from the small intestines), is it normal to have irritation to my stomach lining and not actually in the small intestine like that and is that a sign of celiac? Thanks again for any advice, as I am too impatient to wait a week for biopsy results lol 

[LauraTX]

Unfortunately Celiac damage needs a microscope to be seen in most cases, so time to hurry up and wait!