My Initial Results

[dani nero]

I got a letter from the doc today. She stated that the antibody levels were normal as she expected, but that the metabolism test results are high, so she has ordered further blood tests. I have no idea what that means.. Does it mean that the test itself shows high values.. or my metabolism is? There is no way I would have a high metabolism since I'm generally always overweight.

Since I'm a positive person (and I'm saying this after throwing a small fit haha), I'm taking this as good news. My gluten-free diet has been effective.

What is bugging me though is that she didn't call herself to tell me of the developments, so I couldn't ask her about doing testing to see what supplements I'll be needing. I am still getting days where I feel sore, fatigued and bummed, and I want to have more energy. I deserve to have more energy. I don't want to spend most of my time sitting or lying down.

What confuses me is that some people without symptoms do tests every 6 months to make sure they're anti-body free while being on a gluten-free diet, and they can still test positive. Which type of test do they usually take?

I'm not going to do a gluten-challenge, because there is no guarantee I'll get positive results even if I do it.

I'm still a stubborn person however, and I don't know why, but I really desire proof that I do have a condition. I'm going to try talking them into taking a DH biopsy. I'll eat a little gluten just before the appointment so it shows up. If it's DH then I'll know for sure.

[Newtoitall]

I didn't know people tested to see if the antibodies were gone, is that the number they give when first diagnosing you? saying oh your number is 16-100 or w.e ?

Interested to see how this unfolds.

[MitziG]

I'm sorry Dani, how frustrating!

I have found I have to be pretty demanding with doctors. As in a pain in the butt that makes them roll their eyes when they see your name on the schedule....

I don't care. I am paying THEM, so they work for ME. I very specifically call and request the tests I want when I schedule the appt. And then the dr tries to tell me I don't need them. And I insist. And sometimes the dr is right and the tests are fine. But sometimes they are wrong and the tests show a problem. (This of course is validating and makes me want to wave it in their face and go 'ha, I told you so!"

But really, they don't care. And I have learned to stop caring if they care. I am in charge of my own health now, and I only need drs to sign the paperwork to gett the tests I need to doctor myself.

I have become much healthier and happier since doing so. If I had listened to my doctors I would still be fat, depressed, exhausted and zitty! And medicated.

You will get better. But it takes awhile. Hang in there!

[dani nero]

I didn't know people tested to see if the antibodies were gone, is that the number they give when first diagnosing you? saying oh your number is 16-100 or w.e ?

Interested to see how this unfolds.

Some people who don't experience any symptoms get tested every 6 months to make sure they're in the clear. I would say it's the same test when first diagnosed, but I'm only assuming :-)

[dani nero]

I'm sorry Dani, how frustrating!

I have found I have to be pretty demanding with doctors. As in a pain in the butt that makes them roll their eyes when they see your name on the schedule....

I don't care. I am paying THEM, so they work for ME. I very specifically call and request the tests I want when I schedule the appt. And then the dr tries to tell me I don't need them. And I insist. And sometimes the dr is right and the tests are fine. But sometimes they are wrong and the tests show a problem. (This of course is validating and makes me want to wave it in their face and go 'ha, I told you so!"

But really, they don't care. And I have learned to stop caring if they care. I am in charge of my own health now, and I only need drs to sign the paperwork to gett the tests I need to doctor myself.

I have become much healthier and happier since doing so. If I had listened to my doctors I would still be fat, depressed, exhausted and zitty! And medicated.

You will get better. But it takes awhile. Hang in there!

It seems that doctors here are a little more strict with patients because a lot of people try to get away from work by claiming they're sick. Medical care is also almost free here so I really can't treat the doc as someone who's being paid by me.. although in the end, their salaries do come from our tax-money, and taxes are really back-breaking here haha :-)

I don't know why I have an aching need to know for sure. I do feel better compared to how I was just two months ago, which is great :-) I don't mind being overweight really haha.. as long as I'm able to move as much as I want to.

[squirmingitch]

Dani dear, you have been gluten-free too long for a biopsy of the rash to be positive. And just eating some crackers to make the rash appear will not do it. You DO have to go full scale glutening yourself even for the dh biopsy. I'm sorry but just like your blood tests they will turn up neg. b/c you have been gluten-free.

Lord knows, I wish that were not the case. I have been gluten-free too long. I still get some blisters & some "bites" even low sal & had to go low iodine for the past 2 weeks just to have a few days relief. But I KNOW that a biopsy of the dh would turn up negative. Not only that, but there is a 37% false negative. We are beat before we even get to the starting gate. But I will tell you that if I had it to do all over again; I would do the same thing. I was far, far too miserable to go even one more day before going gluten-free. And I have been soooooo much better since. I have never, ever been a depressed person NEVER! Always found something good, always had a smile but I was extremely close to putting a bullet in my brain & it was ALL gluten. Now I can't even imagine how I could have entertained the notion of such!!!!!! It's like it was a bad nightmare & I awoke to find it wasn't really real. You know?

[dani nero]

Dani dear, you have been gluten-free too long for a biopsy of the rash to be positive. And just eating some crackers to make the rash appear will not do it. You DO have to go full scale glutening yourself even for the dh biopsy. I'm sorry but just like your blood tests they will turn up neg. b/c you have been gluten-free.

Lord knows, I wish that were not the case. I have been gluten-free too long. I still get some blisters & some "bites" even low sal & had to go low iodine for the past 2 weeks just to have a few days relief. But I KNOW that a biopsy of the dh would turn up negative. Not only that, but there is a 37% false negative. We are beat before we even get to the starting gate. But I will tell you that if I had it to do all over again; I would do the same thing. I was far, far too miserable to go even one more day before going gluten-free. And I have been soooooo much better since. I have never, ever been a depressed person NEVER! Always found something good, always had a smile but I was extremely close to putting a bullet in my brain & it was ALL gluten. Now I can't even imagine how I could have entertained the notion of such!!!!!! It's like it was a bad nightmare & I awoke to find it wasn't really real. You know?

So even if the blisters are surfaced doesn't mean they'll be any help? Goodness what kind of a disease is this. I'll say one thing, they're not studying it hard enough and I object ;-(

Yeah I really do know the feeling. I used to have these over-the-board panic attacks that would turn me into the hulk haha :-)

We both went gluten-free around the same time right? You're just one/ two months ahead of me.. Are you getting depressed or anxious at all lately? I find that I'm still getting some down-days .. a lot milder than before thankfully but I'm still not completely anxiety or even depression free.

Don't you wish there was magic-button that would take away all this :-)

[squirmingitch]

So even if the blisters are surfaced doesn't mean they'll be any help? Goodness what kind of a disease is this. I'll say one thing, they're not studying it hard enough and I object ;-(

Yeah I really do know the feeling. I used to have these over-the-board panic attacks that would turn me into the hulk haha :-)

We both went gluten-free around the same time right? You're just one/ two months ahead of me.. Are you getting depressed or anxious at all lately? I find that I'm still getting some down-days .. a lot milder than before thankfully but I'm still not completely anxiety or even depression free.

Don't you wish there was magic-button that would take away all this :-)

Yay for a magic button! Yeah boy!

Unfortunately even if the blisters are surfaced it doesn't mean they will be any help. It's a sucko disease is what it is. Yes! We need more studies!!!!!!! But I will say this Dani & I believe it is true. I believe that it won't be toooo many years down the road before they come up with a way to diagnose celiac disease without us having to glten ourselves so bad first. In fact, Nora, posted on one thread that in Norway they have been doing it in one hospital in particular for several years now where you only have to gluten yourself one time. I will try to find the info. & post it here. Here it is --- read the thread -- she even provides a link further down for the techno medical info.

https://www.celiac.com/forums/topic/93232-so-clueless/

And here is the techno stuff on it:

Open Original Shared Link

Maybe you could travel there & get it done! I'm serious! I don't know how doable that might be for you but you're a heck of a lot closer to Norway than we are here in the U.S.

Yes, we're close to gluten-free at the same time. I get a little depression or anxiety once in a while still but not to the depths that I was. It's like the difference between day & night. And I definitely feel like that will go away soon. I also get a little snappy once in a while still but I'm not trying to bite someone's head off anymore.

[1974girl]

You asked about people with no symptoms having the tests. I have to go back next month and have my daughter's blood work retested and she doesn't have any symptoms. They want to make sure her Ttg level has gone down. Maybe that will prove to them that the diet is working? Or that I am being compliant? I am not sure myself but we are going back.

I read a very disturbing thing on another message board today. (I was just lurking) A lady had an 11 year old like me with no symtoms. Her doctor told her after a year of gluten-free, that it was her call if she wanted to continue it. The child's vitamin and mineral levels were fine, she was growing and gaining weight, and no symptoms. So the mom is letting her eat what she wants now. They told her it was "her call". Although I have wondered the same thing outloud, I would be scared of the other diseases and infertility. I guess no one explained that to her.

[squirmingitch]

Yes, 1974, that's what I've read on this board is that you go back for testing to see the levels going down to make sure the subject is a) not eating gluten --- also assures no cc is happening

make sure the diet is working so to rule out other maladies being a factor.

That's so scary about the other board & the stupid doc saying it was the mom's call. What an idiot doc! And if the mom is on a message board & doesn't "get it"?????? Poor kid's got 2 strikes --- 3 & you're out.

[beachbirdie]

Yay for a magic button! Yeah boy!

Yes! We need more studies!!!!!!! But I will say this Dani & I believe it is true. I believe that it won't be toooo many years down the road before they come up with a way to diagnose celiac disease without us having to glten ourselves so bad first. In fact, Nora, posted on one thread that in Norway they have been doing it in one hospital in particular for several years now where you only have to gluten yourself one time. I will try to find the info. & post it here. Here it is --- read the thread -- she even provides a link further down for the techno medical info.

ravenwoodglass posted a link here to an article on testing that looks VERY promising, too bad its not in use yet! They can challenge the cells in a dish and get an accurate diagnosis! If they get this into production, no more gluten-loading!

[squirmingitch]

Woooooooooooo Hoooooooooooooooooooo!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Go In Vitro!

Thanks beachie!

[dani nero]

Yay for a magic button! Yeah boy!

Unfortunately even if the blisters are surfaced it doesn't mean they will be any help. It's a sucko disease is what it is. Yes! We need more studies!!!!!!! But I will say this Dani & I believe it is true. I believe that it won't be toooo many years down the road before they come up with a way to diagnose celiac disease without us having to glten ourselves so bad first. In fact, Nora, posted on one thread that in Norway they have been doing it in one hospital in particular for several years now where you only have to gluten yourself one time. I will try to find the info. & post it here. Here it is --- read the thread -- she even provides a link further down for the techno medical info.

https://www.celiac.com/forums/topic/93232-so-clueless/

And here is the techno stuff on it:

Open Original Shared Link

Maybe you could travel there & get it done! I'm serious! I don't know how doable that might be for you but you're a heck of a lot closer to Norway than we are here in the U.S.

Yes, we're close to gluten-free at the same time. I get a little depression or anxiety once in a while still but not to the depths that I was. It's like the difference between day & night. And I definitely feel like that will go away soon. I also get a little snappy once in a while still but I'm not trying to bite someone's head off anymore.

Omg! It's almost like you've just shown me the magic button :-O Yes of course I'll be going there if it's a sure bet and even if I have to pay a whole year's worth of salaries! I sadly can't seem to be able to focus reading in more than one board at a time so I do tend to stick around this one, and do miss a lot of posts :-) You're an angel Squirmingitch!

[dani nero]

You asked about people with no symptoms having the tests. I have to go back next month and have my daughter's blood work retested and she doesn't have any symptoms. They want to make sure her Ttg level has gone down. Maybe that will prove to them that the diet is working? Or that I am being compliant? I am not sure myself but we are going back.

I read a very disturbing thing on another message board today. (I was just lurking) A lady had an 11 year old like me with no symtoms. Her doctor told her after a year of gluten-free, that it was her call if she wanted to continue it. The child's vitamin and mineral levels were fine, she was growing and gaining weight, and no symptoms. So the mom is letting her eat what she wants now. They told her it was "her call". Although I have wondered the same thing outloud, I would be scared of the other diseases and infertility. I guess no one explained that to her.

No symptoms doesn't mean no celiac sadly :-( I hope your daughter's tests come out clean!

I'm guessing then that the ttg test is the one they do when they want to check. THanks for the info :-)

[dani nero]

ravenwoodglass posted a link here to an article on testing that looks VERY promising, too bad its not in use yet! They can challenge the cells in a dish and get an accurate diagnosis! If they get this into production, no more gluten-loading!

Yay! :-) More possible magic buttons!

[ravenwoodglass]

I have to add that if a little bit of gluten brings back the blisters you really do have a diagnosis even if the doctors won't give you one 'officially'.

Hopefully the in vitro method or the method where they use a gluten swab or rectal suppository and then biopsy 3 hours later will come into use here soon. But I wouldn't hold my breath. There is a lot of money made off us by testing us for everything under the sun but celiac while we suffer. In addition Big Pharm sure doesn't want us able to drop the hordes of meds that are given us for symptoms. Sorry if it seems like the cynic in me is coming out.

[squirmingitch]

I have to add that if a little bit of gluten brings back the blisters you really do have a diagnosis even if the doctors won't give you one 'officially'.

Hopefully the in vitro method or the method where they use a gluten swab or rectal suppository and then biopsy 3 hours later will come into use here soon. But I wouldn't hold my breath. There is a lot of money made off us by testing us for everything under the sun but celiac while we suffer. In addition Big Pharm sure doesn't want us able to drop the hordes of meds that are given us for symptoms. Sorry if it seems like the cynic in me is coming out.

I hear that Raven & agree wholeheartedly. I am rather jaded myself. $$$$$$$$ talks!