[Carol the Dabbler]

I'm currently in the middle of "glutening up" for my celiac blood tests. Before I have those tests done, I'd like to have my Total Serum IgA tested, just to make sure that I have enough IgA in my blood to get meaningful results from the celiac tests.

My question is, do I need to wait till I've been eating gluten for a certain length of time before having the Total Serum IgA test? Or is a person's IgA level independent of their diet?

[ravenwoodglass]

You should call your doctors office and see if they already ordered the test. Your total Serum IGA should be able to be drawn at any time, while the Total IGA is not going to be effected if you are not comsuming gluten if your total IGA is low it will cause a false negative on the tests.
You say you are consuming gluten for the blood test, how long have you been gluten free? Did you see good results from the diet? Have you reacted to adding gluten back in? If you have eliminated gluten and felt better and then gotten sick when you added it back in that is also a valid way of diagnosing us. It is called an elimination and was the way I was finally diagnosed by my allergist (MD) after years of negative blood tests, progressive pain and disability and no other doctors even telling me what the blood test was for, just that it was negative.

[Carol the Dabbler]

Thanks for the info! I was pretty sure the Total Serum IgA test could be done at any time, but figured it was better to ask a stupid question than to risk making a stupid assumption, considering what's at stake.

I was never actually gluten-free. You know how "they" say that it's good to eat a variety of different foods? Well, I was actually *doing* that when I found out that I'm probably celiac (I'll create a signature with that story right after I post this). Talk about rotten timing! I didn't keep track of what I was eating, but I was having gluten maybe only every-other day, and not usually a large serving even then. So I figured I'd better be sure that the tests will show up whatever there is to show, because I'm *not* having a biopsy.

I'll be having the celiac panel done in about a month. I figure I'll get my Total Serum IgA checked before that, so I'll know which celiac panel (IgA or IgG) to ask for. I've heard some people say they think that when a celiac eats gluten, it may actually lower their IgA levels, so I'll wait till I'm almost ready to have the celiac panel done, then get the IgA test, then go in for the panel as soon as I have the IgA result.

[Gemini]

Carol the Dabbler, on Oct 17 2007, 12:01 PM, said:

Thanks for the info! I was pretty sure the Total Serum IgA test could be done at any time, but figured it was better to ask a stupid question than to risk making a stupid assumption, considering what's at stake.

I was never actually gluten-free. You know how "they" say that it's good to eat a variety of different foods? Well, I was actually *doing* that when I found out that I'm probably celiac (I'll create a signature with that story right after I post this). Talk about rotten timing! I didn't keep track of what I was eating, but I was having gluten maybe only every-other day, and not usually a large serving even then. So I figured I'd better be sure that the tests will show up whatever there is to show, because I'm *not* having a biopsy.

I'll be having the celiac panel done in about a month. I figure I'll get my Total Serum IgA checked before that, so I'll know which celiac panel (IgA or IgG) to ask for. I've heard some people say they think that when a celiac eats gluten, it may actually lower their IgA levels, so I'll wait till I'm almost ready to have the celiac panel done, then get the IgA test, then go in for the panel as soon as I have the IgA result.

A proper Celiac panel of tests will include a total IGA test, so you do not have to have it done beforehand. If a doctor does not run this, then you have a doctor who does not know how to diagnose Celiac.

Eating gluten, if you have celiac disease, will definitely NOT lower your IGA....it will raise it. Depending on what stage of the disease you are in, IGA can go very high. Just remember that even if the test comes back negative, that does not mean you do not have celiac disease. A much better way of getting answers is whether or not your symptoms disappear with the gluten-free diet.

Good luck to you and I hope you find some answers!

[ravenwoodglass]

Gemini, on Oct 17 2007, 08:32 AM, said:

Eating gluten, if you have celiac disease, will definitely NOT lower your IGA....it will raise it. Depending on what stage of the disease you are in, IGA can go very high. Just remember that even if the test comes back negative, that does not mean you do not have celiac disease. A much better way of getting answers is whether or not your symptoms disappear with the gluten-free diet.

Good luck to you and I hope you find some answers!

If you are IGA deficient then that can skew the celiac panel and result in a false negative. Someone who is IGA deficient will not have those numbers go up in response to gluten. Hence the need to also test to make sure that the deficiency is not there. That would be the total IGA if I am not mistaken.

[ravenwoodglass]

Carol the Dabbler, on Oct 17 2007, 08:01 AM, said:

I'll be having the celiac panel done in about a month. I figure I'll get my Total Serum IgA checked before that, so I'll know which celiac panel (IgA or IgG) to ask for. I've heard some people say they think that when a celiac eats gluten, it may actually lower their IgA levels, so I'll wait till I'm almost ready to have the celiac panel done, then get the IgA test, then go in for the panel as soon as I have the IgA result.

Why have two draws? Two copays and a loss of a month out of your life. Your doctor can do both at the same time. Also a negative on the blood test even if not IGA deficient is not absolute conclusive evidence that you are not effected by gluten. The best test to tell IMHO before serious and irrepairable damage is done is your response to the diet. Get the blood draw then give the diet a strict try for at least a couple of months, that is the truest test of all.

[Carol the Dabbler]

Gemini -- I consider my doctor to be very up-to-date on celiac disease, but she's not a specialist, just a family-practice osteopathic internist. So I've been doing some Internet research, and will let her know what tests I want done.

I agree wholeheartedly that a proper celiac panel should start with a Total Serum IgA, and proceed from there, depending on the IgA level. However, labs don't seem to be doing it this way yet, at least not the lab that my doctor's clinic uses for celiac tests. (That's Specialty Laboratories, and I'd welcome any info about them.) Judging from their web site, they feel that they're covering possible IgA deficiency by including one IgG-based test in each of their celiac panels. Their top-of-the-line celiac panel does include a Total Serum IgA, but the rest of the tests are the same old IgA-based ones plus the one IgG-based test. So I figure I'll "roll my own" customized panel.

Ravenwoodglass -- I don't mind having two blood draws. My insurance doesn't require copays for preventative stuff, which seems to include celiac diagnosis -- at least, they covered the entire cost of my recent office visit. The month delay has nothing to do with IgA testing -- I hadn't been eating much gluten right before I found out that I'm probably a celiac, so I'm currently stoking up, just to give the blood tests the best chance of showing whatever there is to be shown. I'll have the IgA test and the celiac panel done just a few days apart.

And yes, I fully agree with both of you -- the most meaningful test of all is Try the Diet! In fact, when I presented my doctor with my family history, she said, "Why didn't you just go on a gluten-free diet?" I told her that A) I want some "official" evidence in case it's ever to my benefit to show proof that I'm a celiac, and B) I want some baseline numbers, in case I have more problems than just gluten. Believe me, I'm really looking forward to going gluten-free!

[Gemini]

ravenwoodglass, on Oct 17 2007, 01:31 PM, said:

If you are IGA deficient then that can skew the celiac panel and result in a false negative. Someone who is IGA deficient will not have those numbers go up in response to gluten. Hence the need to also test to make sure that the deficiency is not there. That would be the total IGA if I am not mistaken.

I figured that was a no brainer, so didn't go into IGA deficient people. On a proper Celiac panel, as I stated before, the total IGA should be included or the other tests aren't worth doing. If you have sufficient IGA, eating gluten would make your numbers go up.....depending upon at what stage of the disease you are in.

[Gemini]

Carol the Dabbler, on Oct 17 2007, 02:36 PM, said:

Gemini -- I consider my doctor to be very up-to-date on celiac disease, but she's not a specialist, just a family-practice osteopathic internist. So I've been doing some Internet research, and will let her know what tests I want done.

I agree wholeheartedly that a proper celiac panel should start with a Total Serum IgA, and proceed from there, depending on the IgA level. However, labs don't seem to be doing it this way yet, at least not the lab that my doctor's clinic uses for celiac tests. (That's Specialty Laboratories, and I'd welcome any info about them.) Judging from their web site, they feel that they're covering possible IgA deficiency by including one IgG-based test in each of their celiac panels. Their top-of-the-line celiac panel does include a Total Serum IgA, but the rest of the tests are the same old IgA-based ones plus the one IgG-based test. So I figure I'll "roll my own" customized panel.

Ravenwoodglass -- I don't mind having two blood draws. My insurance doesn't require copays for preventative stuff, which seems to include celiac diagnosis -- at least, they covered the entire cost of my recent office visit. The month delay has nothing to do with IgA testing -- I hadn't been eating much gluten right before I found out that I'm probably a celiac, so I'm currently stoking up, just to give the blood tests the best chance of showing whatever there is to be shown. I'll have the IgA test and the celiac panel done just a few days apart.

And yes, I fully agree with both of you -- the most meaningful test of all is Try the Diet! In fact, when I presented my doctor with my family history, she said, "Why didn't you just go on a gluten-free diet?" I told her that A) I want some "official" evidence in case it's ever to my benefit to show proof that I'm a celiac, and I want some baseline numbers, in case I have more problems than just gluten. Believe me, I'm really looking forward to going gluten-free!

Carol.....Many labs and doctors today routinely do not do the proper blood tests for celiac disease and that is not fair to the suffering patient. It's all about money. I am still confused as to why 2 blood draws would be done because a good celiac disease panel automatically includes the deficiency test anyway. I used Genova Labs and they are one of the leading laboratories for testing celiac disease in the country. They include all the proper tests.
Here's a link for you do take a look at for information on tests: Celiac Testing

The "old" IgA and IgG tests are extremely useful in diagnosing celiac disease and the EMA is very important. If this is detected, you have celiac disease. It is specific to Celiac Disease.

As far as having proof that you have celiac disease, most mainstream physicians get quite snotty about that and will only recognize that you have it if you have a pretty little picture of flattened villi. They apparently don't have the knowledge to diagnose based on blood work and symptoms anymore.
I have had this experience myself a couple of times, even though my blood work was through the roof and I was so sick I could not work. So, if you seek another doctor for any other problems you may have, they may give you a hard time. Those are the doctors you want to avoid!

Good luck with everything!

[ravenwoodglass]

Gemini, on Oct 18 2007, 09:31 AM, said:

I figured that was a no brainer, so didn't go into IGA deficient people. On a proper Celiac panel, as I stated before, the total IGA should be included or the other tests aren't worth doing. If you have sufficient IGA, eating gluten would make your numbers go up.....depending upon at what stage of the disease you are in.

You'd be surprised how many doctors don't check. At least that was the way it was when I was going through my 15 year diagnosis process. Many still need to be told what tests to order even for a celiac panel. It does seem to be improving though. I feel like getting a bumper sticker that says 'It is Celiac Disease Awareness Month - What did Your Doctor Learn Today?'

[Carol the Dabbler]

Gemini -- I had a look at the Genova web site, and according to the sample report, their celiac panel is basically the same as Specialty Labs' top-of-the-line panel with an added tTG-IgG. They apparently run three IgA-based tests and two IgG-based tests for *everyone* regardless of their Total IgA result, and the Total IgA is included only to aid in interpreting the results of the other tests. That means that IgA-deficient people are charged for three tests that are meaningless for them, and people with plenty of IgA are charge for two tests that are probably superfluous for them.

That's why I'm planning to be tested for Total Serum IgA separately. Yes, it's an extra blood draw -- a nuisance and a small extra expense. But -- barring a borderline IgA level -- that extra test should save me the expense of two or three unnecessary tests. And even though our insurance requires no copay for preventative-type stuff, there *is* a cap! If my IgA is well within the normal range, I'm planning to get the tTG-IgA, EmA-IgA, and AGA-IgA (the latter as a baseline for followup testing, rather than as a diagnostic test per se).

Yes, judging by what I've seen on the Internet, most doctors refuse to diagnose celiac disease without a biopsy -- right now. But I expect that to change fairly soon. Even if it doesn't, though, having blood-test results that strongly suggest celiac disease would give me good evidence, if not acceptable "proof."

Thanks for the good luck wishes!

[Matilda]

...

[Carol the Dabbler]

Hi, Matilda. You may be right about why they generally do the tests that way, but it still seems wasteful to me, which is why I'm planning to do the Total Serum IgA first.

I see that you're the voice of experience when it comes to celiacs with negative blood tests. I realize that it could come to that in my case as well -- but I suspect that it won't. I've had a spastic colon for around 25 years. Also, if it weren't for all of the supplements I take, I would have *much* worse deficiency symptoms by now. Every year, I have to take more, just to keep from going downhill much further -- a couple of years ago, I was taking 72 vitamin pills per day, and now I'm up to 85. So I suspect I do have a significant amount of intestinal damage -- hopefully not *too* much!

It's interesting that you were able to get positive results from Enterolabs' stool tests even though your blood tests were negative, and even after being gluten-free for a month or so. I've heard other celiacs mention them, too, so they may be a good Plan B for me to keep in mind.