Correct Diagnosis?

[ThisGalsGlutenFree]

I recently had a blood test because my doctor suspects that I have celiac disease.  The results, in her words, suggest that I carry the antibody for celiac disease: The ANA screen is negative (no titer performed), the tTG-IgA is negative (<1.2U/mL), but the tTG-IgG is positive (10.5 U/mL).

 

My doctor did not recommend further testing, such as a biopsy, to confirm the celiac diagnosis, but did recommend that I eat completely gluten-free and see a dermatologist to diagnose the rash that I have, that seems to be consistent with pictures and descriptions of dermatitis herpetiformis. I am seeing another doctor to manage my new diet, and she thinks that the positive tTG-IgG test, along with the other symptoms I have described (skin rash and some GI issues) are conclusive enough that I shouldn’t go to the expense and trauma of a biopsy.

 

Am I wrong to not pursue further testing? Do other diseases closely mimic celiac? And I’ve read that the IgG test is less specific than the IgA test for diagnosing celiac – has anyone else had a negative IgA test and positive IgG test and found that they do have celiac disease? Thanks in advance for your comments.

[Doorknocker]

My diagnosis was based on the same.  My celiac panel was most definitely positive, and that with the rash and my symptoms was enough for my doctor to diagnose me as celiac.  He didn't think I needed the expense and trauma and time for the biopsy.  He's a good doctor and I really like him.  If he thinks this is what it is, I'm going with it.  I definitely believed him when several of my symptoms went away.  I'm still fighting the horrible rash and I am still having other issues, but the big D that I used to have just about every day is rare now, and the bloating went down and the headaches went away. 

[SMRI]

I recently had a blood test because my doctor suspects that I have celiac disease.  The results, in her words, suggest that I carry the antibody for celiac disease: The ANA screen is negative (no titer performed), the tTG-IgA is negative (<1.2U/mL), but the tTG-IgG is positive (10.5 U/mL).

 

My doctor did not recommend further testing, such as a biopsy, to confirm the celiac diagnosis, but did recommend that I eat completely gluten-free and see a dermatologist to diagnose the rash that I have, that seems to be consistent with pictures and descriptions of dermatitis herpetiformis. I am seeing another doctor to manage my new diet, and she thinks that the positive tTG-IgG test, along with the other symptoms I have described (skin rash and some GI issues) are conclusive enough that I shouldn’t go to the expense and trauma of a biopsy.

 

Am I wrong to not pursue further testing? Do other diseases closely mimic celiac? And I’ve read that the IgG test is less specific than the IgA test for diagnosing celiac – has anyone else had a negative IgA test and positive IgG test and found that they do have celiac disease? Thanks in advance for your comments.

 

Did they test your total IgA ?  It's very possible that is low and you won't get a positive ttIgA, but could still have celiac. Your IgG is barely positive so it could be that you just haven't had it long enough to really spike.  Do you have a listing of all of the tests they ran?

[ThisGalsGlutenFree]

Did they test your total IgA ?  It's very possible that is low and you won't get a positive ttIgA, but could still have celiac. Your IgG is barely positive so it could be that you just haven't had it long enough to really spike.  Do you have a listing of all of the tests they ran?

 

Thanks to both of you for your replies! SMRI, my doctor did not order a total IgA. She ordered tTG IgA & IgG, ANA, CBC & platelets, and a comprehensive metabolic panel. I believe that the CBC was run because she suspected that my weeping rash was a staph infection (it was not). I remember that when my doctor called with results, she said that I had a low positive, or something to that effect.

[Georgia-guy]

Thanks to both of you for your replies! SMRI, my doctor did not order a total IgA. She ordered tTG IgA & IgG, ANA, CBC & platelets, and a comprehensive metabolic panel. I believe that the CBC was run because she suspected that my weeping rash was a staph infection (it was not). I remember that when my doctor called with results, she said that I had a low positive, or something to that effect.

There is nothing requiring a biopsy for celiac diagnosis. The doctor can make a diagnosis based on a combination of factors including blood tests, symptoms, rash biopsy, intestinal biopsy, and/or improvement on a gluten free diet with one of the above.

However, if I'm not mistaking, ANA (or Anti Nucleic Antibodies) is not a celiac test, I have only seen that test in connection with diagnosis of SLE (Systemic Lupus).

[ThisGalsGlutenFree]

There is nothing requiring a biopsy for celiac diagnosis. The doctor can make a diagnosis based on a combination of factors including blood tests, symptoms, rash biopsy, intestinal biopsy, and/or improvement on a gluten free diet with one of the above.

However, if I'm not mistaking, ANA (or Anti Nucleic Antibodies) is not a celiac test, I have only seen that test in connection with diagnosis of SLE (Systemic Lupus).

 

Please forgive my ignorance in including the ANA result; it was on the same page of the lab report as the celiac tests, so I wondered if I should include it. Thanks to each of you for your comments. I think I may be a bit in denial about having celiac disease.

[Georgia-guy]

Please forgive my ignorance in including the ANA result; it was on the same page of the lab report as the celiac tests, so I wondered if I should include it. Thanks to each of you for your comments. I think I may be a bit in denial about having celiac disease.

I wasn't saying it was ignorance including it, I just wanted to make sure that you (and your doctor) were aware that it's not a celiac test. In my experience, there are doctors who don't even know what tests are for celiac and what are not.

[nora-n]

was by chance the DGP test ordered?

[SMRI]

Thanks to both of you for your replies! SMRI, my doctor did not order a total IgA. She ordered tTG IgA & IgG, ANA, CBC & platelets, and a comprehensive metabolic panel. I believe that the CBC was run because she suspected that my weeping rash was a staph infection (it was not). I remember that when my doctor called with results, she said that I had a low positive, or something to that effect.

 

It would be nice if dr's ordered complete tests to give the full picture of what is going on!!!  But, when all is said and done, a positive is a positive and the scope is just back up to the blood work.  Now, the actual scope and biopsy is pretty easy for you--but again, not really necessary.  I guess if I were your dr and got the lab results, I would have ordered a full IgG and IgA panel to see if those numbers were ok but I'm not your dr .  The next "test" is to see if you respond to a gluten-free diet.  Once your rash is looked at, start eating gluten-free.  If you see an improvement in symptoms, that will confirm your lab tests.

[nora-n]

there is  a DH folder here

[nvsmom]

If you want more blood tests, there are a few you could request: DGP IgA, DGP IgG, EMA IgA, and possibly the older (and less reliable) AGA IgA and AGA IgG.  You'll need to still be eating gluten for them to be the most accurate.

 

I don't know is you need more tests though. The tTG IgG is about 95% specific to celiac disease, so a false positive would only happen 5% of the time (approximately).  It is not the most sensitive test though; I think it was less than the tTG IgA which means it would miss quite a few celiacs with false negatives.  I'm afraid that I'm away from home and don't have the links to back that info up.  This report has some info you could use though: Open Original Shared Link

 

BTW, I skipped the biopsy with a positive tTG IgA and EMA IgA, and I have no regrets.

 

Best wishes to you.

[ThisGalsGlutenFree]

The tTG IgA and tTG IgG were the only celiac tests ordered. Since finding this forum, I see that there are several other tests that could or should have been ordered. I've been eating gluten free for over two weeks now, so any other blood tests (and DH diagnosis?) would be skewed. I'm terrified of a challenge period to test again because the rash has been so hard to live with, but I'll do it if I must. I've started to see some improvement in the rash and with other symptoms the last few days, so I'm cautiously hopeful that the diagnosis was correct and I can get on with life.

 

Thanks for the heads-up on the DH forum!