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Cannot Get Diagnosis From Blood Test Alone?

WinterSong

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WinterSong Community Regular
WinterSong
Posted

I was just listening to a podcast that said there is new research to say that you cannot get diagnosed with Celiac from a blood test alone. I know an endoscopy is the golden standard test, but I've always understood that there are rarely false positive where blood tests are concerned. Has anyone heard of this thought on blood tests? The person on the podcast said that you need to get four or five things done. I'd assume two are the endoscopy and gene test, but I have no idea what else she was talking about.

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kareng Grand Master
kareng
Posted

This is especially true for  someone with a slightly positive blood test.  In small children, they will sometimes forgo the endoscopy if there is a god response to the gluten-free diet, a really high ttg (over 100), and genes.  In adults, they still want to do the endoscopy.  Part if the reason for this is to make sure there aren't other issues like ulcers.

nvsmom Community Regular
nvsmom
Posted

I have found it depends on the doctor as well.  I had a high tTG IgA and a positive EMA test; those two are pretty specific for celiac disease so we stopped with that and skipped the endoscopy. I'm diagnosed as a celiac anyways.

 

Up here, doctors will only run the tTG IgA test. My kids were negative on that but had a great response to the gluten-free diet (well, 2/3 did). Without a positive tTG IgA, doctors will not do an endoscopy (I'm not an endoscopy fan anyways) so they will not have a diagnosis (can't retest if they are gluten-free). I tell them to consider themselves to be celiacs.

 

I don't believe they do any genetic testing up here either - could be wrong on that.

powerofpositivethinking Community Regular
powerofpositivethinking
Posted

the link below lists the info I think you're looking for right above the Dermatitis Herpetiformis section.  I copied and pasted it below.

 

Open Original Shared Link

 

The wide variability of celiac disease-related findings suggests that it is difficult to conceptualize the diagnostic process into rigid algorithms that can cover the clinical complexity of this disease. For this reason, a quantitative approach that can be defined as the 'four out of five rule' was proposed recently[Open Original Shared Link]. Using this method, the diagnosis of celiac disease is confirmed if at least four of the following five criteria are fulfilled:

 

1. Typical symptoms of celiac disease

2. Positivity of serum celiac disease IgA class autoantibodies at high titer

3. HLA-DQ2 and/or HLA-DQ8 genotypes

4. Celiac enteropathy found on small bowel biopsy

5. Response to a GFD

WinterSong Community Regular
WinterSong
Posted
  • Author

That's interesting. I had never hear of the 4 out of 5 method. I always thought it was just the blood test and endoscopy. I had a tTg that was off the charts, an endoscopy with blunted villi, symptoms of Celiac, and a positive response to the diet. My doctor had wanted to do a gene test, but I didn't feel the need to since he told me I already had the diagnosis. The paranoid part of me thinks that I should have gotten it done, lol. But I'm confident in my diagnosis.

powerofpositivethinking Community Regular
powerofpositivethinking
Posted

If you still want the gene test, it is the one test that results are valid regardless of gluten consumption because your genes do not change  :)

 

 

That's interesting. I had never hear of the 4 out of 5 method. I always thought it was just the blood test and endoscopy. I had a tTg that was off the charts, an endoscopy with blunted villi, symptoms of Celiac, and a positive response to the diet. My doctor had wanted to do a gene test, but I didn't feel the need to since he told me I already had the diagnosis. The paranoid part of me thinks that I should have gotten it done, lol. But I'm confident in my diagnosis.

WinterSong Community Regular
WinterSong
Posted
  • Author

Ok, humor me with this one (with my personality I'm prone to anxiety and I've been dealing with a lot of stressful events lately).

I'll probably go in for the gene test at some point, but it's silly of me to be worrying about my diagnosis now, right? I mean, I had four out of the five...

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GottaSki Mentor
GottaSki
Posted

Ok, humor me with this one (with my personality I'm prone to anxiety and I've been dealing with a lot of stressful events lately).

I'll probably go in for the gene test at some point, but it's silly of me to be worrying about my diagnosis now, right? I mean, I had four out of the five...

You were diagnosed correctly.

Most folks only have a gene test IF the other criteria are not clear OR they are looking for answers for their family. You clearly have the most important diagnostic criteria.

No question here...you have Celiac Disease.

Carry on :)

powerofpositivethinking Community Regular
powerofpositivethinking
Posted

You've got the 4/5, so I wouldn't bother  :)

 

Personally for myself, I would like to get the gene test at some point because I have

 

1. Typical symptoms of celiac disease *check

2. Positivity of serum celiac disease IgA class autoantibodies at high titer *I had IgG class only, but DGP IgG which is 99% specific to celiac.

3. HLA-DQ2 and/or HLA-DQ8 genotypes *hasn't been tested

4. Celiac enteropathy found on small bowel biopsy *no damage found

5. Response to a GFD *check

 

The GI I went to wouldn't order a gene test for me because I'd already gotten a positive DGP IgG score.  He said the gene test is not diagnostic alone, which is true, but I still wish he would have ordered it.  Eventually I'll pay out of pocket to get it tested, but that time isn't right now.  I need that money to pay for my food  :lol:

 

Ok, humor me with this one (with my personality I'm prone to anxiety and I've been dealing with a lot of stressful events lately).

I'll probably go in for the gene test at some point, but it's silly of me to be worrying about my diagnosis now, right? I mean, I had four out of the five...

WinterSong Community Regular
WinterSong
Posted
  • Author

Haha, thanks guys. I figured I have a solid diagnosis, which is why I didn't order the gene test in the first place. At the time, I actually thought that my doctor was getting a little test happy, and I don't like it when doctors run tests for no reason.

africanqueen99 Contributor
africanqueen99
Posted

It must be doctor specific, right? 

 

My one year old was DX on blood work alone.  Granted, her numbers were off the chart.  We even redid blood because they were so alarmingly high for such a young person.

 

Then my seven year old was DX based on blood, having a 1st degree relative and lack of growth in a year.  We did the scope, but she had her DX first.

 

I'd like to get the gene test on all of us.  Who knows if I'll get around to it, though?  I wonder if insurance will even pay for it if we've already done the DX process...

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