Jump to content





   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


Photo
- - - - -

My Prediction


  • Please log in to reply

21 replies to this topic

#1 sandsurfgirl

 
sandsurfgirl

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,355 posts
 

Posted 13 May 2012 - 09:43 PM

I think that one day they are going to find a missing link for celiac testing. I think there is another antibody or a whole different substance in the body that they haven't discovered yet that will point to celiac.

There are too many of us on this board who were deathly ill and debilitated yet we were either only positive on one or two of the tests in the panel or we were barely over the limit positive. Or negative which is just shameful. If someone is that sick, it's not logical that their antibodies will be that low. Something is missing.

Or there is some sort of inverse relationship that they are missing.

Celiac testing is one of my biggest sources of anger about this disease. I HATE seeing all the hell people go through on here who are clearly sicker than sick and yet their tests come up negative and they don't know what to do. I hate and loathe even more when they have a big reversal of symptoms when they try gluten free but they doubt themselves or feel like the celiac stepchild for not being "real" bonafide celiacs.

I hate the gluten intolerance label with a purple passion. It lowers people's expectations of what the disease can do to you. It makes them feel like it's not as serious even though in their heart they know it is. And I think the majority of intolerant people are celiacs who have been failed by the crap garbage that passes for testing. If you say you are intolerant there is not a waiter or restaurant manager in the world who is going to take you serious and good luck getting most docs to take that seriously too.

The most discouraging thing I have seen in a long time was that article about how bad endoscopies are. Dr. Green or whatever his name is (Is it Green? I forget)insists it's the "gold standard." He's not far from me and he refused to take me as a patient because I refused endo. I got a positive blood test and I wasn't consenting to invasive procedures and eating gluten any longer. I was going to die if I kept eating gluten as far as I could tell.

The stats on endo were abysmal. Most doctors not performing them correctly, reading the results wrong. People's lives are at stake.
  • 0
Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.
Ready to get well and get on with my life!

Celiac.com Sponsor:

#2 scaredblossom

 
scaredblossom

    Community Member

  • Advanced Members
  • PipPipPip
  • 47 posts
 

Posted 13 May 2012 - 09:54 PM

I for one hope you are right :l I know how I feel and it isn't good when I eat that crap!!
  • 0

#3 sandsurfgirl

 
sandsurfgirl

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,355 posts
 

Posted 13 May 2012 - 10:15 PM

I for one hope you are right :l I know how I feel and it isn't good when I eat that crap!!


I tell everybody if you are undiagnosed or think you are "intolerant" please save your sanity and tell people you have celiac. The last thing you need is to defend your health decision or have people not take you seriously. Tell family and friends you had a blood test.
  • 3
Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.
Ready to get well and get on with my life!

#4 scaredblossom

 
scaredblossom

    Community Member

  • Advanced Members
  • PipPipPip
  • 47 posts
 

Posted 13 May 2012 - 10:22 PM

The only problem with that one is my mom works at my family Doctor and knows what my tests said =( of course she is only a file clerk but still
  • 0

#5 anabananakins

 
anabananakins

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 438 posts
 

Posted 14 May 2012 - 12:55 AM

I tell people that I'm waiting for the testing to catch up. I agree that there's something major missing. Articles I'd read about gluten ataxia indicated that plenty of people who improved on a gluten free diet hadn't tested positive for celiac and I think I likely fall into that category. I don't mind being open about testing negative, people know that gluten makes me super ill. I'll say I have celiac disease to strangers, but if I want to make a point about testing failing to diagnose me, I think it's better that I'm honest about not getting a positive result, because maybe I can encourage someone else to go gluten free. But I live in Australia and awareness is much better here, so if I tell someone I can't eat gluten, I've never had anything but supportive responses (oh the occasional 'sucks to be you, I'd die without bread!' but they are supportive of me not eating it).
  • 0

#6 Greyhound

 
Greyhound

    Community Member

  • Advanced Members
  • PipPipPip
  • 28 posts
 

Posted 14 May 2012 - 02:35 AM

There's no way I'm going to eat gluten just for someone to tell me I'm ill, so I'm not going to get an official diagnosis either. Hope no one will ever require it of me for any reason - like a medical note for something.

I'm beginning to wonder whether I should tell people I have coeliac disease instead, but I'm afraid people will think 'DISEASE? Ewwwww keep away!'
  • 0
Blood test results normal. I refuse to eat gluten for a biopsy. Gluten-free since 15th April. Things slowly improving :-)

#7 sandsurfgirl

 
sandsurfgirl

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,355 posts
 

Posted 14 May 2012 - 06:23 AM

There's no way I'm going to eat gluten just for someone to tell me I'm ill, so I'm not going to get an official diagnosis either. Hope no one will ever require it of me for any reason - like a medical note for something.

I'm beginning to wonder whether I should tell people I have coeliac disease instead, but I'm afraid people will think 'DISEASE? Ewwwww keep away!'



I never say disease either. I just say celiac.

If your family is supportive then you of course don't have to lie about testing, but I've seen so many situations here where people told the truth to family and were treated like dirt. And there have been awful instances of family members glutening people on purpose, lying that something was gluten free to prove to them they don't really have a problem with gluten. One poor woman was glutened on purpose by a family member and then after she ate a whole meal that sad excuse for a human being gloated and said "See you just ate gluten and you're fine." The celiac person broke out in a horrible DH rash all over her body and was very sick from that.

So you have to know your audience.
  • 0
Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.
Ready to get well and get on with my life!

#8 tennisman

 
tennisman

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 271 posts
 

Posted 14 May 2012 - 06:36 AM

The biopsy results are 99.9 % accurate that's what I have been told by several nurses . I don't get how any celiac could have negative biopsy tests unless the doctor don't do the test right . Lately I read cross contamination or a coin sized amount of gluten can will cause damage to the villi for 6 months , so if people have eaten gluten there whole life the tests would see the damage .
  • 0
Diagnosed with Coeliac disease in 2003

#9 sandsurfgirl

 
sandsurfgirl

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,355 posts
 

Posted 14 May 2012 - 06:48 AM

The biopsy results are 99.9 % accurate that's what I have been told by several nurses . I don't get how any celiac could have negative biopsy tests unless the doctor don't do the test right . Lately I read cross contamination or a coin sized amount of gluten can will cause damage to the villi for 6 months , so if people have eaten gluten there whole life the tests would see the damage .



Doctors and nurses will tell you all sorts of things but they are sadly WRONG. I wish I had the link to that article. It was something like only 30% accuracy on the biopsy precisely because they don't do it right, and because the test is inherently easy to screw up. Your small intestine is so many feet long and they take 4 tiny teeny weeny samples. Very easy to miss the mark. They also don't go very deep. One woman on here was part of a study where they used a camera after negative biopsy and then they found her villi damage much lower than the biopsy goes.

Then there are those docs who just don't read it right. Any villi blunting or damage means celiac and some of them look for all out war in there before they will give a positive DX.

The anecdotal evidence is a nuclear bomb to the 99% accurate b.s. There are loads of people with positive blood tests and negative biopsies. Then they come here crying and losing their minds because they were told they don't have celiac yet they are so sick or they improved on gluten free.

The celiac biopsy is a medical travesty in America. It's the "gold standard" becuase it makes the doctors so much GOLD! Why do a simple blood test when you can charge my insurance for a surgery? It's despicable that after positive blood tests they insist on biopsy to "confirm." It's a dietary change! They torture patients by keeping them on gluten and putting them through an invasive procedure for what?

Yeah nurses and doctors "say" a lot of things about celiac but stick around here long enough and you'll find that they are sadly so misinformed.
  • 1
Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.
Ready to get well and get on with my life!

#10 tennisman

 
tennisman

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 271 posts
 

Posted 14 May 2012 - 07:21 AM

Doctors and nurses will tell you all sorts of things but they are sadly WRONG. I wish I had the link to that article. It was something like only 30% accuracy on the biopsy precisely because they don't do it right, and because the test is inherently easy to screw up. Your small intestine is so many feet long and they take 4 tiny teeny weeny samples. Very easy to miss the mark. They also don't go very deep. One woman on here was part of a study where they used a camera after negative biopsy and then they found her villi damage much lower than the biopsy goes.

Then there are those docs who just don't read it right. Any villi blunting or damage means celiac and some of them look for all out war in there before they will give a positive DX.

The anecdotal evidence is a nuclear bomb to the 99% accurate b.s. There are loads of people with positive blood tests and negative biopsies. Then they come here crying and losing their minds because they were told they don't have celiac yet they are so sick or they improved on gluten free.

The celiac biopsy is a medical travesty in America. It's the "gold standard" becuase it makes the doctors so much GOLD! Why do a simple blood test when you can charge my insurance for a surgery? It's despicable that after positive blood tests they insist on biopsy to "confirm." It's a dietary change! They torture patients by keeping them on gluten and putting them through an invasive procedure for what?

Yeah nurses and doctors "say" a lot of things about celiac but stick around here long enough and you'll find that they are sadly so misinformed.


So it's more the tests being done wrong than not being accurate . celiac disease causes inflammation and villi damage I just don't get how doctors could miss it . I'm from england maybe we have better testing over here my old doctor boasted about how he had performed over 5000 endoscopy's :o I also hear patients told to start a gluten-free diet before the endoscopy , I hear stories for example someone has been gluten-free for 2 weeks before the endoscopy and tests come back negative , how can the villi repair in 2 weeks if a small amount of gluten can do 6 months of damage it all seems confusing .
  • 0
Diagnosed with Coeliac disease in 2003

#11 Bubba's Mom

 
Bubba's Mom

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,457 posts
 

Posted 14 May 2012 - 07:26 AM

I tested negative on the blood tests. I'm furtunate though, because I had severe symptoms, along with with weight loss. When I went to the GI she said she was going to do blood tests, a stomach emptying study, and an endoscope, and said if those didn't give us answers there were other tests that could be done.

When my endoscope was done it was easily seen with the naked eye that I had severe damage and was DXed with Celiac.
There are a lot of suffering people out there that are shooed away if given the blood test and it comes back negative. A scope isn't done to double check. They're told they have IBS and sent on their way. :o

If the blood tests have a 20-30% false negative rate, you'd think they'd try real hard to come up with a better test? Even the genetic tests aren't very good. They can tell if you *might* get Celiac, but that's only if you have DQ2 and/or DQ8. They know there are more genes involved, but say it's rare to have them. Maybe it's not so rare? Maybe those without the two main ones are being mis-Dxed too?

I gave extra vials of blood to a research team at Mayo Clinic. They're looking hard at other genes as a way of DXing more people, or finding additional companion diseases to Celiac to watch for. Unfortunately, research seems to move at a snail's pace?

I wondered too, if there's a soy version of Celiac? So many of us can't tolerate soy along with gluten?
  • 0

#12 Greyhound

 
Greyhound

    Community Member

  • Advanced Members
  • PipPipPip
  • 28 posts
 

Posted 14 May 2012 - 07:40 AM

I never say disease either. I just say celiac.

If your family is supportive then you of course don't have to lie about testing, but I've seen so many situations here where people told the truth to family and were treated like dirt. And there have been awful instances of family members glutening people on purpose, lying that something was gluten free to prove to them they don't really have a problem with gluten. One poor woman was glutened on purpose by a family member and then after she ate a whole meal that sad excuse for a human being gloated and said "See you just ate gluten and you're fine." The celiac person broke out in a horrible DH rash all over her body and was very sick from that.

So you have to know your audience.

That's horrendous :o

Thankfully my family's been very supportive over it. I eat at my parents' house every Friday and my mum says she doesn't mind if I want to double check any of the ingredients. I was really relieved because I was so nervous about telling her. I thought she'd think I was making it up. I think she's relieved for me though - she partly knew how ill I'd become (although I don't think she realises quite how bad I'd got).

I was also very touched by the service I received at a pub recently - I go to a folk evening there every Thursday evening and at a certain time the landlord puts a large platter of free food like sandwiches and chips for everyone taking part. I've been going there for a couple of years now and last Thursday I plucked up the courage to ask whether I could have just a small lump of cheese because I was hungry and couldn't eat anything. He assured me that the chips were gluten free, but I was nervous and they'd been put next to the sandwiches. He said not to worry and brought me a big bowl of salad with two types of cheese!

I could have cried - I was so touched :-)
  • 0
Blood test results normal. I refuse to eat gluten for a biopsy. Gluten-free since 15th April. Things slowly improving :-)

#13 Googles

 
Googles

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 435 posts
 

Posted 14 May 2012 - 08:28 AM

The only problem with that one is my mom works at my family Doctor and knows what my tests said =( of course she is only a file clerk but still


Hi Sacredblossom,
Are you over 18? If so, no matter what position your mother has at your doctor's office, she should not have access to your files. If something needs to be done with your files, someone else should be doing it unless you have signed a release for your mother to have access to your file. Your mother should not have access to your file, especially if it is causing problems for you. Talk to your doctor about this.
  • 1

#14 chasbari

 
chasbari

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 391 posts
 

Posted 14 May 2012 - 05:42 PM

I think that one day they are going to find a missing link for celiac testing. I think there is another antibody or a whole different substance in the body that they haven't discovered yet that will point to celiac.

There are too many of us on this board who were deathly ill and debilitated yet we were either only positive on one or two of the tests in the panel or we were barely over the limit positive. Or negative which is just shameful. If someone is that sick, it's not logical that their antibodies will be that low. Something is missing.

Or there is some sort of inverse relationship that they are missing.

Celiac testing is one of my biggest sources of anger about this disease. I HATE seeing all the hell people go through on here who are clearly sicker than sick and yet their tests come up negative and they don't know what to do. I hate and loathe even more when they have a big reversal of symptoms when they try gluten free but they doubt themselves or feel like the celiac stepchild for not being "real" bonafide celiacs.

I hate the gluten intolerance label with a purple passion. It lowers people's expectations of what the disease can do to you. It makes them feel like it's not as serious even though in their heart they know it is. And I think the majority of intolerant people are celiacs who have been failed by the crap garbage that passes for testing. If you say you are intolerant there is not a waiter or restaurant manager in the world who is going to take you serious and good luck getting most docs to take that seriously too.

The most discouraging thing I have seen in a long time was that article about how bad endoscopies are. Dr. Green or whatever his name is (Is it Green? I forget)insists it's the "gold standard." He's not far from me and he refused to take me as a patient because I refused endo. I got a positive blood test and I wasn't consenting to invasive procedures and eating gluten any longer. I was going to die if I kept eating gluten as far as I could tell.

The stats on endo were abysmal. Most doctors not performing them correctly, reading the results wrong. People's lives are at stake.


Long time since I have been hanging around here. I miss everyone and all the passion and support that got me through the darkest times in all of this. I agree with so much of what you are saying. I hate to hear the old standby suggestion to "make sure you keep eating gluten (uh.. poison) until after all the testing is done" garbage. I tested negative but the evidence was so overwhelming that the doctor did the scope anyway. Thing is, I was fortunate to have a good gastro who did it right.. or maybe was lucky. The damage can be very spotty and the samples they take from random locations might miss it altogether thus giving the appearance of no atrophy. It didn't matter in the long run whether I got the ok from the doctors or not. There was no way anyone was going to get me to "challenge" by eating anymore poison. I was dying and when the light bulb went on, there was no turning back. I knew and that was all that really mattered. It's nobody elses' business as to what my official DX was (even though I did get a positive DX for celiac.) oOf course, that's a lot easier for me to say now than it was back then. It was brutal at first. All I know is that when I went rigorously gluten free that I went from dying to recovery and from recovery to living and from living to thriving. Granted, I still have a ways to go but just this past fall I was talking to some rheumatoid arthritis researchers about how, after my celiac diagnosis and switch to a very low carb gluten free diet and strategies to restore my gut flora, that my supposedly irreversible joint damage sort of kind of began to reverse. My hands, which used to be claws are almost completely back to normal. My elbows, which I could no longer fully straighten to within about 15 degrees of straight, are now capable of full range of motion. I have no gel time when it used to take two plus hours to get past shuffling. Thing is, according to the initial blood work, I shouldn't have received the scope. Even with all that Fasano is doing and that others have contributed to the field, I don't think we're anywhere close to putting it all together in a way that is truly helpful. I think that the commercialization of the celiac diet has messed things up so severely that many are no better off than pre diagnosis because of it. I live and eat on the lunatic fringe now but do so happily because I have my life back. The perfect storm, the confluence of so many food and environmental and medical (pharmaceutical) changes that have happened over the last fifty years are wreaking havoc with our genetic expression and we are the proverbial canaries in the cage.. but the cage is getting mighty crowded. Anyway... rant over. I have way too much catching up to do here and I hope I see some old friends.
CS
  • 1

#15 pricklypear1971

 
pricklypear1971

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,684 posts
 

Posted 14 May 2012 - 05:49 PM

Long time since I have been hanging around here. I miss everyone and all the passion and support that got me through the darkest times in all of this. I agree with so much of what you are saying. I hate to hear the old standby suggestion to "make sure you keep eating gluten (uh.. poison) until after all the testing is done" garbage. I tested negative but the evidence was so overwhelming that the doctor did the scope anyway. Thing is, I was fortunate to have a good gastro who did it right.. or maybe was lucky. The damage can be very spotty and the samples they take from random locations might miss it altogether thus giving the appearance of no atrophy. It didn't matter in the long run whether I got the ok from the doctors or not. There was no way anyone was going to get me to "challenge" by eating anymore poison. I was dying and when the light bulb went on, there was no turning back. I knew and that was all that really mattered. It's nobody elses' business as to what my official DX was (even though I did get a positive DX for celiac.) oOf course, that's a lot easier for me to say now than it was back then. It was brutal at first. All I know is that when I went rigorously gluten free that I went from dying to recovery and from recovery to living and from living to thriving. Granted, I still have a ways to go but just this past fall I was talking to some rheumatoid arthritis researchers about how, after my celiac diagnosis and switch to a very low carb gluten free diet and strategies to restore my gut flora, that my supposedly irreversible joint damage sort of kind of began to reverse. My hands, which used to be claws are almost completely back to normal. My elbows, which I could no longer fully straighten to within about 15 degrees of straight, are now capable of full range of motion. I have no gel time when it used to take two plus hours to get past shuffling. Thing is, according to the initial blood work, I shouldn't have received the scope. Even with all that Fasano is doing and that others have contributed to the field, I don't think we're anywhere close to putting it all together in a way that is truly helpful. I think that the commercialization of the celiac diet has messed things up so severely that many are no better off than pre diagnosis because of it. I live and eat on the lunatic fringe now but do so happily because I have my life back. The perfect storm, the confluence of so many food and environmental and medical (pharmaceutical) changes that have happened over the last fifty years are wreaking havoc with our genetic expression and we are the proverbial canaries in the cage.. but the cage is getting mighty crowded. Anyway... rant over. I have way too much catching up to do here and I hope I see some old friends.
CS


Thanks for sharing our success story. It gives lots of us hope.
  • 1
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: