Only Ttg Igg Came Back Positive

[amy31]

Hello,

I am new here. Earlier this year I started having some digestive problems and when I read about celiac disease, I suspected it. After a great deal of research, I asked to be tested. Now before I got tested, I did a couple of gluten-free experiments. They were as follows (just in case it could have affected the testing, but I don't really think so).

1 week trying to be gluten-free

2 weeks back on gluten

2 weeks really gluten-free

4 weeks back on gluten

At the end of this I had my blood tests and here are the results:

DGP IGA was 5 (normal range 0-19)

DGP IGG was 3 (normal range 0-19)

TTG IGA was less than 2 (normal range 0-3)

TTG IGG was 11 (normal range 0-5) This is the only one that was positive.

Total IGA 188 (normal range 70-400)

EMA was negative

The doctor said that it is not a definitive diagnosis, but it points in the direction of celiac disease. She said I could go for the endoscopy, but realizes it would be quite expensive for me, so recommended I go gluten-free and see if that brings improvement.

I guess I would like to know if I have celiac, especially since I have two little girls and have some concerns about them too.

Does anyone know how specific the TTG IGG is for celiac disease, especially since I'm not IGA deficient? I really do not wish to pay the high cost for the endoscopy, especially since I am afraid I might not be a severe case and then it might come back normal anyway. I am wondering if I should tell my doctor I'd like to keep eating gluten a while longer so that I could repeat the blood tests in a few months.

Does anyone have any opinions on how likely (or unlikely) it is that I have celiac disease?

Thank you so much!

Amy

[mushroom]

Welcome to the board.

You have not been having symptoms for very long, and therefore may not have built up a lot of antibodies or done much damage to your small intestine to test positive. Add to that that you had been gluten free for three of the nine weeks prior to testing (and especially considering that two-week continuous period), and you could well have affected the outcome of your testing. It is normally recommended after a two-week gluten free period that you consume gluten for at least two months to rebuild the antibodies. Likewise, healing could have started in your intestine.

At this point you have the choice of continuing with the gluten and retesting, or, if you are noticing a big difference with being gluten free, sticking with the gluten free diet and foregoing diagnosis. Many of us have done this. How are you feeling back on gluten? Have you noticed a big difference in your symptoms?

As for your specific question about the tTG, there are other causes for an elevated tTG. Normally the DGP is considered to be the most specific celiac test. The EMA is also pretty specific - it is run after a positive tTG.

On the other hand, you may not have celiac disease, but just a gluten sensitivity - non-celiac gluten intolerance (NCGI), and with this condition you will never test positive for celiac and there is, in fact, no test for it except the symptom test.

I know I have left you with more questions than answers, but that is often the way this disease is.

[Cara in Boston]

My son tested negative on all tests except the IgG ones and he was found to have extensive damage even though he had very few symptoms. He was NOT IgA deficient.

While researching Celiac (before his endoscopy) I found a book that had a chart of all the blood tests and where they lead. If I remember correctly, a positive result on the TTG IgG lead to "gluten intolerant" with the next step being an endoscopy to look for celiac damage. At the very least, though, you could pretty much count on being gluten intolerant.

Did your symptoms go away when you were gluten free?

[beachbirdie]

I also tested positive only on the TtG IgG. My doc was willing to believe that it is celiac (I also have a genetic marker for celiac) and said so. We know it wasn't liver disease and we know it wasn't Crohn's, two of the main conditions that also raise the TtG IgG. No matter which condition you might have, the positive test IS an indicator of auto-immune activity. These particular antibodies are a sign your body is attacking itself. That is never a good thing!

I have Hashimoto's, which can also raise that antibody. So, my doc said that no matter what, I needed to be gluten free, and she didn't need to order an endoscopy to figure that out. She didn't care whether my antibodies were due to thyroiditis or celiac, it means my body is being damaged because of gluten.

That doesn't give you a definitive answer of course! To confuse the issue, I emailed the celiac center at University of Chicago, one of the premier celiac facilities in the country. Their doc said "patient does NOT have celiac but re-test every year".

The bottom line is whether you see your symptoms go away on a truly gluten-free diet.

[MitziG]

I tested as a weak positive on the ttg only. Level was 6, with below 4 being ok. My biopsy showed total villous atrophy. A low ttg level is still celiacm and I would consider yourself one.

Ttg can be elevated in instances of other autoimmune diseases, but if your symptoms are consistent with celiac, then you have your answer.

[amy31]

Thank you so much, everyone, for your replies. They have been very educational. After reading what everyone has shared, I realize that it's not possible to know whether or not I have celiac, but that I could. I think I will ask my doctor if I can wait a few months and test again. The only thing is that I do not look forward to keeping on with the fatigue for several more months!

Well, I did not have clear-cut improvement from the time going gluten free. It is hard to say. I felt like things got worse after I went back on gluten, but of course that doesn't prove that the gluten is implicated. I guess I would really like to know if I have celiac so I would know if I am at risk for the associated conditions, and if my close family members are at risk of having it. Otherwise, it's true, I could just start on the diet.

Thank you again, all!

[MitziG]

just so you know, improvement isn't always noticeable for many months. I was about 7 mos in before I realized, "hey, I think I don't feel quite so crappy anymore!" Had I not been dx, I would never have stuck with diet long enough to feel better.

Another thing to consider, if going gluten-free resulted in your ttg dropping- that too would be a clear indication that it was elevated due to celiac.

[beachbirdie]

The doctor said that it is not a definitive diagnosis, but it points in the direction of celiac disease. She said I could go for the endoscopy, but realizes it would be quite expensive for me, so recommended I go gluten-free and see if that brings improvement.

I guess I would like to know if I have celiac, especially since I have two little girls and have some concerns about them too.

Does anyone know how specific the TTG IGG is for celiac disease, especially since I'm not IGA deficient? I really do not wish to pay the high cost for the endoscopy, especially since I am afraid I might not be a severe case and then it might come back normal anyway. I am wondering if I should tell my doctor I'd like to keep eating gluten a while longer so that I could repeat the blood tests in a few months.

Does anyone have any opinions on how likely (or unlikely) it is that I have celiac disease?

Thank you so much!

Amy

Perhaps the opposite approach would be more fruitful? Since you aren't able to do the endoscopy, and probably not the genetic testing, you might go strictly gluten-free for 6 months; this means, seriously, NO cheating, and careful label reading. Ask the doctor to repeat the test at that point. It sounds like your doctor is not one to brush off the idea of celiac.

As another poster said, if your levels drop you know you have a gluten problem. And that would be a lot easier on you than eating gluten for a long time, if it makes you sick and fatigued.

[nora-n]

I was gluten free for 7 months befoere I woke up one morning and was not so terribly tired anymore. 4 weeks would be too short a time.

[amy31]

Thank you for those additional ideas. MitziG, I agree that it could take a while for me to see all the symptoms go away, and during that time, if I do not have a diagnosis, I'll be likely to worry that I'm not really celiac and that I am missing the real problem. I'll be seeing my doctor again and asking about retesting some time in the future.