Are Blood Tests Accurate After 6 Yrs gluten-free?

[erintigs]

Hi folks,

I have been eating a gluten-free diet for about 6 years. I originally discovered I was sensitive to it when I did an elimination diet years ago, but I've never been tested for celiac. Fast forward 6 years and I have a new doctor who wants to test me for celiac specifically. The other day she did blood tests for antibodies. My understanding, though, is that those tests aren't very accurate if you haven't had gluten in the last 6 months or so. Do y'all know? If I'm right, can anyone point me to studies or other info I can show my doctor?

Thanks,

Erin

[lizard00]

I am almost certain your blood tests will come back negative. You have to be currently eating gluten to hope for an accurate result. And it would take 3-6 months at that before they may show up in a blood test. I don't have a website specifically, but there are articles on this website, or you can google celiac disease and check those websites. They all say the same thing, you must be on a gluten diet to be diagnosed.

What about genetic testing? IMO, that would be a better way to go. It will tell you if you carry the Celiac gene, the gluten sensitivity gene, or both. Then your doctor would have a better answer without trying to put you through the horrors of going back on a gluten diet just for diagnostic purposes.

[erintigs]

Thanks, that's really helpful. I felt funny questioning her when she insisted that it would still be accurate, seeing as how she's the doctor. I'll search for that info and bring it to her the next time I go see her.

I think you're right about the genetic testing, too.

Erin

[Ursa Major]

I agree, there is absolutely NO WAY that any tests for celiac disease could be positive after being on the gluten-free diet for six years! Any damage you may have had will be long healed. And going back on gluten (four slices of bread a day for at least three to six months to even have a slight chance of accurate testing) is NOT a good idea as it could trigger other autoimmune diseases and could cause permanent damage, not to mention make you dreadfully ill again.

Just tell your doctor that you know you are gluten intolerant, and you have no intentions of ever eating gluten again, period. Your doctor is apparently woefully ignorant of celiac disease if she thinks that testing would be accurate at this point. Don't listen to her, she doesn't know what she is talking about.

[lizard00]

Thanks, that's really helpful. I felt funny questioning her when she insisted that it would still be accurate, seeing as how she's the doctor. I'll search for that info and bring it to her the next time I go see her.

I think you're right about the genetic testing, too.

Erin

I went through the same thing with mine. (she was the PA actually) She looked at me like I was crazy when I said Shouldn't I be eating gluten? She said no, we just look for antibodies... I realized then that she didn't know much about celiac disease at all, and that I was pretty much on my own at that point. Sometimes it's best not to argue until you actually have the proof in your hands. Go educate her!!

[MDRB]

I went gluten free for about 6 months before getting any tests done. My doctor told me that the tests should still be accurate, however they came back negative. I then went to see a gastroenteroligist who told me to eat at least one meal a day with gluten for at least a month before having an endoscopy (which came back positive).

Tests can be inaccurate even if you have never been gluten free, the best indicator is how you feel off the gluten.

Good luck

[erintigs]

Hi everyone,

Thanks for all your comments and for sharing your experiences. For those who had similar experiences, did you stay with your doctor? I really like this doctor otherwise, she is very responsive, involves me in my own care more than previous doctors, etc. Now I'm wondering, though, if I stick with her, will I be getting poorer care than if I found someone new who is more educated about gluten intolerance and celiac? What did y'all decide to do?

Thanks,

Erin

[Ursa Major]

Hi everyone,

Thanks for all your comments and for sharing your experiences. For those who had similar experiences, did you stay with your doctor? I really like this doctor otherwise, she is very responsive, involves me in my own care more than previous doctors, etc. Now I'm wondering, though, if I stick with her, will I be getting poorer care than if I found someone new who is more educated about gluten intolerance and celiac? What did y'all decide to do?

Thanks,

Erin

Erin, I am in a similar situation. My doctor knows precious little about celiac disease, and as a result I suffered for years with obvious celiac disease symptoms. My doctor thought that you can't have celiac disease if you are overweight, and so she never tested me for it (she knows better now, as I gave her a half hour lecture on celiac disease after figuring it out myself).

You managed to be on a gluten-free diet for years and feeling better for it, without the help of any doctor. I can't see what difference it makes now to have a doctor who is ignorant about celiac disease. You obviously know more about it than she does. If she is willing to learn and do a little research (my doctor is open to learning from me and admits that she doesn't know everything), then I would keep her. You could do worse for sure, at least she doesn't sound arrogant.

Just make it clear that you aren't interested in celiac disease testing, as it is useless at this point. Ask her to just put into your file that you are gluten intolerant and to take that into consideration in your care.

[horsesjapan]

Hi everyone,

Thanks for all your comments and for sharing your experiences. For those who had similar experiences, did you stay with your doctor? I really like this doctor otherwise, she is very responsive, involves me in my own care more than previous doctors, etc. Now I'm wondering, though, if I stick with her, will I be getting poorer care than if I found someone new who is more educated about gluten intolerance and celiac? What did y'all decide to do?

Thanks,

Erin

I agree, if your current doc is willing to educate herself about celiac disease and gluten intolerance then I'd keep seeing her if you like her! Also, is she willing to refer you to specialists who DO know more if you need one? Took me 6 years to get a referral to an allergist to get IgG testing done on my ds. The doc we were seeing was gracious enough to admit she didn't know everything and that I sounded like I had done my homework and then we lucked out with an awesome allergist (in another state, and down the toll road lol, but totally worth it!). THe allergist in our town was not taking any new patients, but I think that was a blessing in disguise. Anyway, good luck with the dr and I'd try for genetic testing.

Nancy

[hdc0008]

I have been gluten-free since October 2007. About 3 weeks ago I went in to see my Dr. about some routine blood work for my thyroid and while I was there she ordered labs for the Celiac panel of tests. I could have went my whole life not having the test and I would still know 100% that I had Celiac disease. My symptoms are pretty much completely gone and life could not be better. But she wanted to run them anyway even though I asked her about the accuracy of the test since I have been gluten free for about 6 months. She said that it didn't matter but I was sure it did. She said lots of people test negative a few times anyway. I couldn't figure out what the point of it would be then. As it turns out, the results came back positive which makes me wonder how this could be after reading so many people's posts about testing. I know when I've been accidentally "glutened" and I hadn't been for a while.

[gfp]

Hi folks,

I have been eating a gluten-free diet for about 6 years. I originally discovered I was sensitive to it when I did an elimination diet years ago, but I've never been tested for celiac. Fast forward 6 years and I have a new doctor who wants to test me for celiac specifically. The other day she did blood tests for antibodies. My understanding, though, is that those tests aren't very accurate if you haven't had gluten in the last 6 months or so. Do y'all know? If I'm right, can anyone point me to studies or other info I can show my doctor?

Thanks,

Erin

I doubt that will really help. Unfortunately.

The bottom line is celiac disease testing is not looking for an absolute but a cut-off. If you never had TB or immunisation you would be negative because the body has no antibodies BUT testing for IgG and IgA there will always be some and a positive or negative is an artificial cut-off.

Your MD's rational is like testing for an external disease, that the antibodies will persist even after 6 yrs... but it isn't that sort of test!

The first step should be your MD should read the testing procedure and rational! They obviously haven't (which is normal)...

IMHO you can get them to realise this by asking them to explain the testing.

Why will the test be positive?

What is it testing ....and what differentiates a positive from a negative.

So everyone has some and celiac disease is above a threshhold ... is this the same testing for an external disease antibodies?

So all people have some antibodies and only those above a cwertain level are considered positive?

So surely I'll get some antibodies but not so many as eating gluten daily? How do you know this is enough?

[Ursa Major]

I have been gluten-free since October 2007. About 3 weeks ago I went in to see my Dr. about some routine blood work for my thyroid and while I was there she ordered labs for the Celiac panel of tests. I could have went my whole life not having the test and I would still know 100% that I had Celiac disease. My symptoms are pretty much completely gone and life could not be better. But she wanted to run them anyway even though I asked her about the accuracy of the test since I have been gluten free for about 6 months. She said that it didn't matter but I was sure it did. She said lots of people test negative a few times anyway. I couldn't figure out what the point of it would be then. As it turns out, the results came back positive which makes me wonder how this could be after reading so many people's posts about testing. I know when I've been accidentally "glutened" and I hadn't been for a while.

There are two possibilities. One, you had such severe damage that for you it takes more than six months to heal enough to test negative. The second possibility is, that you are still getting gluten somewhere, like personal care products, or cross contamination in your house, so you keep having damage.