Questions About Testing

[AlwaysHope]

What specifically should he ask his doctor for? What are the name of the

tests?

Also, I vaguely remember someone mentioning that there is a risk for

a false negative if you have been gluten-free yet Celiac, for any length of time. How long

would that be?

While we have reduced our gluten for the past about 3 weeks, we are

obviously newbies and couldn't have gotten rid of ALL sources.

In fact the protein drink he's been taking 3 times a day for a week now

we just found out HAS Gluten in it..although the company says it has "traces" obviously it HAS it in it, nuff said.

What do y'all suggest?

How long should he eat gluten again, for a better test result?

Thanks you people are great!!

AlwaysHope

[KaitiUSA]

Here are the tests to request:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

When you are off of gluten before testing your body may start to heal and therefore make the results come back negative. Blood tests are usually followed up on after being gluten free for a few months to measure the compliance.

You need to be on gluten eating equal to 2-3 pieces of bread a day for 3 months prior to testing.

Attempting to be gluten free for 3 weeks would still not have enough gluten in your diet so he really needs to get back on gluten for an extended period of time before testing.

[AlwaysHope]

Here are the tests to request:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

When you are off of gluten before testing your body may start to heal and therefore make the results come back negative. Blood tests are usually followed up on after being gluten free for a few months to measure the compliance.

You need to be on gluten eating equal to 2-3 pieces of bread a day for 3 months prior to testing.

Attempting to be gluten free for 3 weeks would still not have enough gluten in your diet so he really needs to get back on gluten for an extended period of time before testing.

<{POST_SNAPBACK}>

Ok thanks so much for your info. I will print this out.

I passed the info on to hubby and that really causes him/us some concern.

He doesn't really want to go back on gluten for the 3 months.. yet he wants

the test.

What to do? What to do?

He's considering just staying the course now.

He/we are pretty convinced he has it and to go back on gluten after even

just 3 weeks off it doesn't seem right.

I suppose if he just went on the diet he'd be pretty certain if he had it or not by the good results.

Can he get a test later to see where he's at?

Thanks again,

AlwaysHope

[VydorScope]

If you have the money, I believe Entrolab says thier tests will still work even if you were gluten-free for a while... Ive been considering hem. Only price is stopping me realy....

[AlwaysHope]

If you have the money, I believe Entrolab says thier tests will still work even if you were gluten-free for a while... Ive been considering hem. Only price is stopping me realy....

<{POST_SNAPBACK}>

Thanks VydorScope, I am Canadian and I haven't really

heard of that lab. Is it in the States?

Our medical system is different in Canada and I am not even

sure where I could FIND an independent lab.

Our tests here would be free.. or covered by our health care.

AlwaysHope

[Jnkmnky]

Villi damage certainly wouldn't be healed within 3 weeks being gluten free. How about a biopsy to prove Celiac? Also, he wasn't gluten free for those three weeks if he was getting gluten. I would have the test done after a a week or two of eating gluten. I think your doctor is a better person to consult over this issue of how long you need to have been consuming gluten. He may feel that the test is worth running. We're a good source of information, but we're not the definitive source!

[KaitiUSA]

Villi damage certainly wouldn't be healed within 3 weeks being gluten free.  How about a biopsy to prove Celiac?  Also, he wasn't gluten free for those three weeks if he was getting gluten.  I would have the test done after a a week or two of eating gluten.  I think your doctor is a better person to consult over this issue of how long you need to have been consuming gluten.  He may feel that the test is worth running.  We're a good source of information, but we're not the definitive source!

<{POST_SNAPBACK}>

Tests can be altered after 3 weeks gluten free. The results would not be accurate at this point. For blood tests or biopsies at this point they would both be inaccurate. Thats why they tell you to be on gluten 3 months before testing...even if he was attempting to be gluten free he would not be getting enough gluten in his system for testing.

If he wants to get the testing then you can get it now but beware that it may come back negative and he still could have it.

[AlwaysHope]

Tests can be altered after 3 weeks gluten free. The results would not be accurate at this point. For blood tests or biopsies at this point they would both be inaccurate. Thats why they tell you to be on gluten 3 months before testing...even if he was attempting to be gluten free he would not be getting enough gluten in his system for testing.

If he wants to get the testing then you can get it now but beware that it may come back negative and he still could have it.

<{POST_SNAPBACK}>

Thanks everyone.

Personally I think the test

WILL be altered. He's dramatically reduced his gluten

intake and the protein suppliment that we found out has gluten in it, has only traces, but who knows how much.

The manufactuer said: "we can't be 100 percent certain, so we say no"

So while he IS still getting gluten, it isn't much.

What we decided is that he will take the test but if it is negative not really put that much stock in it for now and just stay the course with the gluten-free diet.

The diet will show more than anything..

He IS going to get some vitamin deficiency tests and a thyroid test as well, to rule out other things.

IF those tests (the vitamin def. tests) show anything that will be a big indicator already because the man eats VERY well and has for 2 years and also takes suppliments.. that will show that malabsorption issues exist.

Anyway, that's what we have decided.

It would be "nice" (as in good to know) if the test would show positive but we realize now that there is a good chance it will not.

At this point he's trying to rule out every probable cause.

As well, I am doing the same. I was dignosed with Fm 15 years ago and I am going to go gluten-free as well. It will be easier than try to prepare two meals, etc. and I already gave up wheat myself, 2 months ago, before I knew anything of Celiac.

So for us, it's been a pretty easy transition.

At this point I am trying to eat mostly whole, organic foods anyway, so going gluten-free hasn't been much of an issue.

When I emailed most of the product lines we already use they are gluten-free..so no biggy.

AlwaysHope

[Rachel--24]

I was scheduled for biopsy but at the time I was 3 weeks gluten-free and the GI doc told me it would not be accurate so I didn't do it.

-Rachel

[AlwaysHope]

I was scheduled for biopsy but at the time I was 3 weeks gluten-free and the GI doc told me it would not be accurate so I didn't do it.

-Rachel

<{POST_SNAPBACK}>

Thanks Rachel,

That's good to know. What did you do then? Just go on the gluten-free diet,

or did you go back on gluten for 3 months?

AlwaysHope

[Rachel--24]

Hi,

No way...I'm not going back on gluten for 3 months. I'm still doing the gluten-free diet and just this week eliminated all other possible gluten sources (that I know of) shampoo, lotion, make-up..etc. I only weigh 95 lbs. and it would not be good for me at all to go back on gluten. I did Enterolab gene & stool testing and I'm waiting for the results.

-Rachel

[AlwaysHope]

Hi,

No way...I'm not going back on gluten for 3 months. I'm still doing the gluten-free diet and just this week eliminated all other possible gluten sources (that I know of) shampoo, lotion, make-up..etc. I only weigh 95 lbs. and it would not be good for me at all to go back on gluten. I did Enterolab gene & stool testing and I'm waiting for the results.

-Rachel

<{POST_SNAPBACK}>

Wow! Rachel..

I think you are doing the right thing by not going on gluten.

Hope you are feeling better now?

My husband is unconfirmed Celiac of course, but he says he

feels "different" (not better yet) already, even after 3 weeks.

AlwaysHope

[AlwaysHope]

Wow! Rachel..

I think you are doing the right thing by not going on gluten.

Hope you are feeling better now?

My husband is unconfirmed Celiac of course, but he says he

feels "different" (not better yet) already, even after 3 weeks.

AlwaysHope

<{POST_SNAPBACK}>

Everyone keeps mentioning this lab Rachel.. is it only in the States?

I am in Canada and wouldn't know where to find this test..

is it a stool sample?

AlwaysHope

[KaitiUSA]

I believe you can order it from Canada. The stool test will test for tTG, malabsorption, and gluten sensitivity. You can also order a gene test from there and that is a mouth swab. The gene test they offer not only tests for the celiac genes but for gluten intolerance genes too.

It is not widely accepted by the medical community but it becoming more accepted and is a great test.

It is called an Enterolab and you can visit their site at www.enterolab.com

Also, if you look in their FAQ they say you do not have to get back on gluten if you have been on it in the past year.

[Rachel--24]

Wow! Rachel..

I think you are doing the right thing by not going on gluten.

Hope you are feeling better now?

My husband is unconfirmed Celiac of course, but he says he

feels "different" (not better yet) already, even after 3 weeks.

AlwaysHope

<{POST_SNAPBACK}>

Yes, I did feel a whole lot better after about 1-2 weeks. I was pretty much in bed all day before that...not functioning at all. I still have a long way to go I think. I also don't have the diagnosis yet but I've tried everything in the past 2 1/2 years and the diet's the only thing that has helped me.

-Rachel

[Rachel--24]

Everyone keeps mentioning this lab Rachel.. is it only in the States?

I am in Canada and wouldn't know where to find this test..

is it a stool sample?

AlwaysHope

<{POST_SNAPBACK}>

Katie already answered this question

I'm not sure about Canada either though. The tests are a little pricey. If you order everything at once its a little cheaper I think. I did the gene testing along with the stool tests and there was a milk test included. My doctor has tested me in the past for malabsorption and it showed nothing. I'm curious to know whether this test will show something different. Its beyond me that my tests could come back normal when I was clearly disappearing right before my own eyes

-Rachel

[BabySnooks]

Here are the tests to request:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

When you are off of gluten before testing your body may start to heal and therefore make the results come back negative. Blood tests are usually followed up on after being gluten free for a few months to measure the compliance.

You need to be on gluten eating equal to 2-3 pieces of bread a day for 3 months prior to testing.

Attempting to be gluten free for 3 weeks would still not have enough gluten in your diet so he really needs to get back on gluten for an extended period of time before testing.

<{POST_SNAPBACK}>

Thank you kaiti--you answered my question before I could ask it.....Today I received a letter from the doctor that did my colonoscopy and diagnosed me as Celiac. He indicated my celiac disease antibodies show normal range in 2 out of 4 antibody tests and elevated range in the other two. I was perplexed by this, as I thought there was one test/number which diagnoses celiac. Now I realize the one blood draw is used for 4 different tests. Thanks again.

[Jnkmnky]

Villi damage certainly wouldn't be healed within 3 weeks being gluten free.  How about a biopsy to prove Celiac?  Also, he wasn't gluten free for those three weeks if he was getting gluten.  I would have the test done after a a week or two of eating gluten.  I think your doctor is a better person to consult over this issue of how long you need to have been consuming gluten.  He may feel that the test is worth running.  We're a good source of information, but we're not the definitive source!

<{POST_SNAPBACK}>

[Jnkmnky]

Whoops! Sorry for the quote thingy above. I didn't say that the tests would all be conclusive at this point. I said I think the biopsy could be ok to do and the reason I THINK it would be ok is that villi damage takes so many months to heal. If those villi grew back quickly, that would be one thing. But from what I know, they take a loooooong time to grow back. SO, I think a biopsy is something to consider with your doctor if you've been gluten freeish for three weeks, not with a bunch of people on a web site. That's all I was saying. And as for the blood tests, I think a consult with a doctor is still the ultimate way to make the decision considering there was the implication of gluten still being in the diet to some small degree. I like the web/chat/support/ideas/opinions/etc...but ultimately, I think a person who is asking for medical advice on a chat room, should be steered to her doctor. Kaiti, you are a wealth of information...actually, ACCURATE information. You are great for the technical end of this disease as well as the daily grind info....but I still think the original poster should consult with her doctor about her question before making a decision. It certainly wasn't a life or death question, but it WAS a question for a doctor to answer with a patient.

[KaitiUSA]

Whoops!  Sorry for the quote thingy above.  I didn't say that the tests would all be conclusive at this point.   I said I think the biopsy could be ok to do and the reason I THINK it would be ok is that villi damage takes so many months to heal.  If those villi grew back quickly, that would be one thing.  But from what I know, they take a loooooong time to grow back.  SO, I think a biopsy is something to consider with your doctor if you've been gluten freeish for three weeks, not with a bunch of people on a web site.  That's all I was saying.  And as for the blood tests, I think a consult with a doctor is still the ultimate way to make the decision considering there was the implication of gluten still being in the diet to some small degree.  I like the web/chat/support/ideas/opinions/etc...but ultimately, I think a person who is asking for medical advice on a chat room, should be steered to her doctor.  Kaiti, you are a wealth of information...actually, ACCURATE information.  You are great for the technical end of this disease as well as the daily grind info....but I still think the original poster should consult with her doctor about her question before making a decision.  It certainly wasn't a life or death question, but it WAS a question for a doctor to answer with a patient.

<{POST_SNAPBACK}>

Yep, I agree. These kind of decisions about your health that really impact you should always be discussed with your doctor. Just make sure the doctor knows about celiac very well. I lost alot of faith in doctors and am not very trusting of many of them so make sure you are well informed.

Also, the thing about biopsies that would concern me is that a positive one can rule it in but a negative one can't rule it out. He could have sporadic damage that they miss or no damage yet.

All damage completely heals usually within 3-6 months(depends on the amount of damage and so forth) but the process starts as soon as someone goes gluten free.

[Guest nini]

I have very little faith in the medical community at this point and I agree with Kaiti. If you do go the biopsy route, keep in mind that it can ONLY rule it in, NOT rule it out... it can ONLY confirm damage. BUT WHAT IF THERE ISN'T ANY DAMAGE YET????? YET is the key word here. Many people have gluten intolerance/celiac, and are in beginning stages and don't have damage yet, but doesn't mean that they don't have celiac just because they don't have damage. To me the idea that you have to wait until damage is confirmed to positively dx celiac is just absurd. If you have symptoms and you improve on a gluten-free diet, that is a much better indicator than waiting for damage to appear in the intestines or getting confirmation that there is already significant damage.

I do agree that you should consult with a medical professional, but educate yourself. AND do NOT let the Dr. try to dismiss your very valid concerns with a "I AM A DR. THEREFORE I KNOW EVERYTHING ATTITUDE"... they do not know everything, they are human. Some people are more informed than other's and everyone's got their own opinion. Opinions are like buttholes, everyone has one.

[Rachel--24]

I think doctors who are actually knowledgeable about Celiac Disease are a dime a dozen so it is best to educate yourself as much as you can. If you are fortunate enough to have a doctor who will listen and give you accurate information then consider yourself extremely lucky. Most will ACT as if they know what they're talking about and if you don't know any better you can easily be convinced. I had to request to be tested for celiac disease as it was never even considered by my doctor. He then was not able to order the tests at that time because he was obviously not familiar with them and had to look them up. By the time all of this was taken care of I was already gluten-free for 2 weeks because I had never been to this message board and therefore didn't know any better. My doctor told me that it didn't matter if I was eating gluten or not. If he had truelly known about celiac disease and had given me the proper advice maybe I would have tested positive at that time and I would not be sitting here now weighing only 95 lbs. Now that I'm more knowledgeable I can clearly see that my doctor really knows NOTHING about celiac disease (I am teaching him) but they sure like to act as if they know it all! My opinion is EDUCATE YOURSELF...and if that means talking to a bunch of strangers on a website then so be it. Its only going to help you in the long run...at least you'll be able to weed out the bad doctors and hopefully not make the same mistake I did...trusting that they know it all.

-Rachel

[Jnkmnky]

Doctor's do know a lot and can be helpful with celiac disease. I know there's a lot of bad blood between Celiacs and doctors, I have issues with them as well, but ultimately, they are there to help and can do a lot for people with celiac disease. They do have access to the same information we do and more. I'm not ready to write off all doctors just because of some bad medicine in the past....though I hold a grudge against one guy in particular.

[AlwaysHope]

Doctor's do know a lot and can be helpful with celiac disease.  I know there's a lot of bad blood between Celiacs and doctors, I have issues with them as well, but ultimately, they are there to help and can do a lot for people with celiac disease.  They do have access to the same information we do and more.  I'm not ready to write off all doctors just because of some bad medicine in the past....though I hold a grudge against one guy in particular.

<{POST_SNAPBACK}>

Not to worry everyone. We are being wise. I am just asking the

questions "here" to get informed so that if he/we go the medical route

we are already armed with all the info.

I am sorry, I am will the others that have lost faith in doctors.

I have had FM for 15+ years and I haven't gotten ANY help from a doctor,

ever.

Everything I have learned, I have learned on my own from reading years and

years of research.

I have gone into doctors and requested different tests to rule out possibilities

and never once was anything suggested to me.

We have just moved to a new city a few months ago and there is a shortage of doctors in the city at this moment and it is difficult to even GET a doctor.. you mostly have to do a walk-in clinic so in our case it is necessary that we come educated and do our own research FIRST because we probably won't even be able to see the same doctor twice.

I would never make a decision based on what someone on the internet said without researching things first.

However, I am not naive enough to believe that EVERY doctor knows about this disease and would give the best advice.

For one, unless I had even thought about the fact that hubby and I have been more or less gluten free for 3 weeks, I might not have realized the significance of this had I not read here. And would the doctor have pointed this out? Would the doctor have thought to have even ASKED whether or not you have been relatively gluten-free for any length of time? I really doubt it, that is my experience.

Case-in-point. My husband JUST found out this week by reading on his own that a medication that he used to take orally was very dangerous and that the medical community has known for years that it should be taken by another method (this has nothing to do with celiac disease obviously). So when asked why HIS doctor did (and by the way ALSO in the wrong dosage) he had no answer.

So doctors aren't always up on the new research.

I personally think that people should read and research things first themselves and then present it all to a doctor and let him/her discuss options.

But sorry, ultimately I think that it is the patient that bears the heavier burden to become informed.

If I listened to every doctor and didn't follow my gut instinct that times, I would have been in much worse shape today than I am.

IMO

AlwaysHope

[KaitiUSA]

Doctors CAN be helpful but alot are there to help treat the symptoms and not really find out the underlying cause.

I know people like my grandma treat doctors as if they are God and know everything and this is what can lead to problems because doctors do not know everything.

Yes, they can help but knowledge is power so you should be informed to make sure the doctors not feeding a pile of crap to you. There are some exceptions of good doctors though.

Many things that are complained of when going to the doctor are attributed to the things like depression or anxiety and if they can't figure out what it is after some testing they they say it's all in your head.

There are things that I have read that really just make me skeptical of them too. For instance, they can get paid alot of money for prescribing certain drugs to people, etc.

Am I ready to write doctors off? No of course not..they can be very helpful. I still go to the doctor when needed and for follow ups and really like my doctors. However, there are only a few doctors I can truly recommend out of all the doctors I have been to which is sad.

Just how many doctors out there listen? My bet would be not too many of them..think about it..they have patients coming in all the time and spend very little time with you to really know what is going on.

Alot of people on here know more about celiac then the majority of doctors. The doctors have the info. available to them but I don't really think they are up on it.

Well I'll quit my rambling..as you all can tell, I am not too trusting in them.