high blood test, questionable doctors

[JamesW]

In one of my recent doctor's visits, I mentioned that I've had bloating problems that have persisted for some time.  I've occasionally had issues for years, even after I thought I figured out that lactose may be causing me problems and (partially) stopped eating some lactose products (still ate cheese, cream in coffee, etc).  My doctor then suggested that a blood test be done to see if there could be a celiac problem.  I was given the Tissue Transglutaminase IGA test, which claims that the standard range is <= 19.9 CU.  My number was 1040.4 CU.

Obviously, that number about made my eyes pop out of my head.  How in the world could it be that high?  I spoke with him about it, and he didn't seem panicked about it, which I found kind of odd.  He suggested that I see a specialist, which I scheduled and visited a couple of weeks later.

This is where I started to question the doctors and what they were doing/suggesting to me.  This specialist came in, looked over the questionnaire I give them, and without batting an eye suggested an endoscopy.  I got the impression that I could have looked completely normal, or been vomiting up blood, and he would have stoically given me the same advice.  It bothered me enough that I just cancelled that procedure and scheduled another appointment with my PCP.

Since that time, I've done some internet research (a doctor's favorite I'm sure) on the topic.  I'm seeing some useful info, from the fact that an endoscopic biopsy doesn't always reveal anything, to the battery of blood tests that may be worth having.

I'm not losing weight, I can still eat pretty normal (I have been cutting out gluten as a reaction to my sky high TT IGA number), and only encounter bloating and the occasional odd stool.  Here are my questions:

Does the TT IGA test of 1040.4 CU sound like a poorly done test?  Should I have it retaken?  Can that number ever even get that high?  Does it indicate possible celiac, or is it more of an indicator of autoimmune in general?

What is the IGA Endomysial AB test?  Deaminated Gliudin Peptide?  Total Serum IGA?  Should I have those done as well?

Should I have an endoscopy done?  What would it show beyond the blood tests that I could have?

What is the Array 4 test by Cyrex Labs?  Has anyone had that test done?  Is it worth considering?

I consider any procedure that requires me to be knocked out to be major, so I'd be reluctant to have a tube with a camera on the end stuck down my throat when I could just have a few more blood draws.

[Gemini]

Hello James.......I think the first thing I would do is ask for the whole Celiac panel to be done and not just the tTg.  The tTg should be repeated because it is so high, just to make sure it is correct.  As to whether it could be possible for it to be that high, it could.  When they test for tTg, they generally only test to a certain point because if you have a tTg that is really elevated, it only needs to be about 10 times the normal ranges for them to realize that you may really have Celiac.  A tTg of 100 is considered really high and usually they don't need to see beyond that to initiate further testing.  My testing went to the magic 100 number and it was given in a graph type result but the graph line went well beyond the 100 number and the numbers beyond 100 were not labeled on the graph or included.  Kind of annoyed me because, judging from the way the graph tracked, it could have been much, much higher and I kind of would have liked the actual number. You might be lucky that they give you the actual number.  But have them repeat the test, along with the others they should have included.  They would be as follows:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA 

Open Original Shared Link  This link will explain the testing for you.

The decision to have an endoscopy is a personal one, based on your ease or difficulty in obtaining a diagnosis in general. I understand your feelings about being under anesthesia.......not my favorite thing to do.  I did not have one as my blood work was all extremely positive and I was very sick with classic and obvious Celiac symptoms. My response to the gluten-free diet was nothing short of phenomenal.  However, you seem to have mild symptoms, which does happen with some people.  Would a very positive blood panel make you believe it to the point where you follow the diet religiously?  That is what you would have to do.  Having the endo might cement the fact further if it came back really positive also.  I have never regretted my decision to not have an endo.  I follow the diet as I should and have never cheated. I become so sick, I never want it to happen again, ever. My antibodies were all in the normal range 1 year later and all of my symptoms, including the ones I had no idea were linked to Celiac, were gone in 3 years.  I was 46 when diagnosed.

Forget Cyrex labs.  To be tested for Celiac properly, insist they do the above panel on you and make sure you gluten up for testing, although if that tTg level is real, that might not be necessary.    I hope this helps you to find out if you have Celiac and if so, don't sweat it.  We are here to help with the diet and you'll be just fine.  Good luck!

[JamesW]

Thank you Gemini for the info.  I've looked over the article, and understand a little better what tests are available.

I had the Tissue Transglutaminase antibody IGA test, which was over 1000 CU (normal 19.9 CU or less).

Quantitative Immunoglobulin A IGA test looks like it won't help, as it's only used when TTG is negative but celiac is suspected.

Deamidated Gliadin Peptide IGA/IGG also looks like its given when TTG is negative, so I shouldn't need it either.

Anti-Endomysial Antibodies (EMA) may be helpful, although I'm not sure it will be easy to talk my doctor into giving it to me.  It sounded more definitive than TTG, but the link claims it's more difficult to do and harder to read.

Anti-F-actin may be exactly what I'm looking for, as it tests for intestinal damage (without shoving a camera down my throat).

I'm guessing that Total Serum IGA you have above coincides with the chart in the link.  Something I should get?

Some of the others you reference weren't on that link.  What are Anti-Gliadin IGA/IGG?

Although I've been avoiding gluten, I was still eating some dairy (even though I know I'm lactose intolerant).  I recently went cold turkey on that and coffee (cross-reactivity is debatable, but better safe than sorry).  However, I did just accidentally eat gravy on my meal today, so I'm sure I won't have any problem detecting gluten on any immediate future tests.  And I did get bloated after eating dinner with that on it, so I think it's becoming clearer and clearer to me that I have celiac.

Here's hoping for a good doctor's visit nest week (and he's open to more testing).

[Sugarcube]

JamesW - ttg & Deamidated Gliadin Peptide measure different things. So its not correct to state that DGP is only required if ttg is negative. Actually the DGP test can be superior to ttg. 

DGP would be useful in confirming the Celiac, indicated by your ttg readings.  If your DGP levels are also elevated, then i think your celiac is almost certainly confirmed.

 

[Jmg]

James I don't think they would put you under for an endoscopy. Here in the UK they don't anyway, although you can have a calming sedative if you choose.  I didn't, although I think I probably would if I had another.  

Best of luck with finding an answer. 

[Gemini]

James.......the link I sent you explained each test for what they test for but I do not agree on their testing protocol.  I should have been more specific with that so sorry for any confusion.

The test panel I posted is the Celiac panel which is normally used in the US.  Tests may be called something different, depending on what country you live in.  All of the tests in that panel need to be done and should not be cherry picked. They each give valuable information, as Sugarcube noted. If your tTg is indeed that high, then you should absolutely have the whole panel done...and the tTg needs to be repeated because it is so high.  You may be able to receive a diagnosis on blood work alone if the other numbers in the panel track high like your tTg.  The EMA is a very good test to run because in all the literature I have read over 11 years, if you have a positive tTg and EMA, the probability of Celiac is something in the region of 98% certain.  Mine were both very positive and there was no doubt at all I had Celiac Disease.

When doctors use the excuse that the EMA costs too much, I can hardly believe that an endoscopy would be less expensive than the other, yet they all are eager to do invasive testing.  Something to keep in mind.

The Gliadin IgA/IgG is an older version of the newer DGP test...which tests for the reaction to the gluten you are ingesting.  The DGP is more sensitive.

As far as coffee and cross-reactivity, that is not quite true.  This article, although a bit involved, explains things fairly well.  Open Original Shared Link  There is just so much misinformation out there with regards to Celiac and that makes it harder for people to learn the correct way to do it.  Cyrex labs is not very reputable.  Cross reactivity is more aligned with allergies but Celiac is an intolerance......completely different animal.

If you wish to be tested properly for Celiac, then you have to eat more than a little gravy.  Try to eat a couple of slices of bread every day, or the equivalent.  You could probably be tested sooner, if your tTg result is correct. I hope you have a productive doctor's visit and he is willing to run the whole panel.  Personally, this is so important, I ended up paying cash for the panel myself, years ago, because I was so sick, I would have died if I had to wait for appointments and insurance.  It was worth every penny!