Guest guest Posted May 5, 2005 Report Share Posted May 5, 2005 If you want a " gold " diagnosis for purposes of managing the " system " and not having to fight as hard when you are not competent to do so, or if you need outside verification in order to stay off the wheat then no. There are other (blood) tests that return many false negatives, there are saliva and stool tests that are not accepted by regular doctors, there are gene tests that tell you if you have the genes for gluten sensitivity, there are antibody tests and fat absorption tests and a couple of others. If you just want to know that is wheat, rye, barley and oats that are doing you in AND you have gut issues that you can personally identify, then just staying very, very clear of wheat, rye, barley and oats for 2 weeks will tell you. But stay on it until you get the biopsy if that is the test you want, because you can cause a false negative if you are not currently really tearing up your gut. The biopsy is not difficult, doesn't hurt and is done under anathesia. They take samples of your small intestine and look at it under the microscope to find the atrophied villi. And of course, your insurance pays and therefore knows. Connie -----Original Message----- From: [mailto: ] On Behalf Of s_setya Sent: Wednesday, May 04, 2005 5:55 PM Subject: [ ] diagnosis for cd Hi Guys, My Doctor is pretty confident that I have celiac's disease... he has referred me to a gastroenterologist to have a endoscopy/biopsy to confirm the same... my question is that teh only way for a confirmed diagnosis?? is there no other way? -S Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2005 Report Share Posted May 5, 2005 That's true--have you had the bloodwork done yet? ----- Original Message ----- From: s_setya Sent: Wednesday, May 04, 2005 5:55 PM Subject: [ ] diagnosis for cd Hi Guys,My Doctor is pretty confident that I have celiac's disease... he hasreferred me to a gastroenterologist to have a endoscopy/biopsy toconfirm the same... my question is that teh only way for a confirmeddiagnosis?? is there no other way? -S Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2005 Report Share Posted May 5, 2005 A positive biopsy finding is usually the most reliable diagnostic tool, but there are also blood antigen tests which often suffice for some doctors to make a diagnosis. Unfortunately the blood tests are often inaccurate, so the biopsy method is often considered most reliable. It is probably best if you do not start the gluten free diet until after all biopsy and blood samples have been taken. -- Steve Rider http://SensibleCeliac.com/ On 5/4/05, s_setya <s_setya@...> wrote: > Hi Guys, > > My Doctor is pretty confident that I have celiac's disease... he has > referred me to a gastroenterologist to have a endoscopy/biopsy to > confirm the same... my question is that teh only way for a confirmed > diagnosis?? is there no other way? -S > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2005 Report Share Posted May 5, 2005 I agree with most of what is written below EXCEPT that 2 weeks off of gluten will tell you anything. That is not long enough at all by my experience, and based on what I was told by my gastroentologist.Connie Hampton <connie@...> wrote: If you want a "gold" diagnosis for purposes of managing the "system" and nothaving to fight as hard when you are not competent to do so, or if you needoutside verification in order to stay off the wheat then no.There are other (blood) tests that return many false negatives, there aresaliva and stool tests that are not accepted by regular doctors, there aregene tests that tell you if you have the genes for gluten sensitivity, thereare antibody tests and fat absorption tests and a couple of others.If you just want to know that is wheat, rye, barley and oats that are doingyou in AND you have gut issues that you can personally identify, then juststaying very, very clear of wheat, rye, barley and oats for 2 weeks willtell you. But stay on it until you get the biopsy if that is the test youwant, because you can cause a false negative if you are not currently reallytearing up your gut.The biopsy is not difficult, doesn't hurt and is done under anathesia. Theytake samples of your small intestine and look at it under the microscope tofind the atrophied villi. And of course, your insurance pays and therefore knows.Connie -----Original Message-----From: [mailto: ]On Behalf Of s_setyaSent: Wednesday, May 04, 2005 5:55 PM Subject: [ ] diagnosis for cdHi Guys,My Doctor is pretty confident that I have celiac's disease... he hasreferred me to a gastroenterologist to have a endoscopy/biopsy toconfirm the same... my question is that teh only way for a confirmeddiagnosis?? is there no other way? -S Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2005 Report Share Posted May 5, 2005 Has a tissue transglutaminase (tTG) blood test been done? It seems to me this test is the most sensitive and specific out of the blood tests offered to test for celiac disease. Also, since the upper endoscopy / small bowel biopsy is considered the " gold standard " for diagnosing celiac disease, it may be a good idea to simply get this test done to know (almost) for sure whether or not you have the disease. That way you don't have to deal with staying off gluten for a test period. In particular, the biopsy works out well if your insurance covers the test (it should). Good luck! If you want a " gold " diagnosis for purposes of managing the " system " and not > having to fight as hard when you are not competent to do so, or if you need > outside verification in order to stay off the wheat then no. > > There are other (blood) tests that return many false negatives, there are > saliva and stool tests that are not accepted by regular doctors, there are > gene tests that tell you if you have the genes for gluten sensitivity, there > are antibody tests and fat absorption tests and a couple of others. > > If you just want to know that is wheat, rye, barley and oats that are doing > you in AND you have gut issues that you can personally identify, then just > staying very, very clear of wheat, rye, barley and oats for 2 weeks will > tell you. But stay on it until you get the biopsy if that is the test you > want, because you can cause a false negative if you are not currently really > tearing up your gut. > > The biopsy is not difficult, doesn't hurt and is done under anathesia. They > take samples of your small intestine and look at it under the microscope to > find the atrophied villi. > > And of course, your insurance pays and therefore knows. > > > > Connie > > > -----Original Message----- > From: [mailto: ] > On Behalf Of s_setya > Sent: Wednesday, May 04, 2005 5:55 PM > > Subject: [ ] diagnosis for cd > > Hi Guys, > > My Doctor is pretty confident that I have celiac's disease... he has > referred me to a gastroenterologist to have a endoscopy/biopsy to > confirm the same... my question is that teh only way for a confirmed > diagnosis?? is there no other way? -S > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2005 Report Share Posted May 5, 2005 Hey S_Setya –They do the endoscopy outpatient now, and with the drugs they use, you’ll likely not remember a thing about the procedure. You will want to take the whole day off and have family or friends take you there and home. I’m a celiac that had negative results on all the blood tests. My biopsy/endoscopy showed lots of inflammation and damage, hence the pain and diarrhea. It’s the way to get direct evidence of what’s going on in your intestines. Once you know, the diet changes can give you back your life. It’s as simple (or as hard) as not eating gluten anymore. To fight the inflammation, some doctors give prednisone. It’s a powerful drug that works, but with lots of un-fun side effects (says she who was on 60 mg/day). They now have entocort, and it has much fewer side effects. Of course, it costs more too. At the Stanford Celiac conference last October, they said this was one of the easier immune diseases in that we can stop the problems by avoiding gluten. I hadn’t thought of it in those terms before… Good luck whatever you choose to do. http://www.celiac.com/st_prod.html?p_prodid=946 - -----Original Message----- From: [mailto: ]On Behalf Of Naren Wadhwani Sent: Wednesday, May 04, 2005 11:03 PM Subject: RE: [ ] diagnosis for cd I agree with most of what is written below EXCEPT that 2 weeks off of gluten will tell you anything. That is not long enough at all by my experience, and based on what I was told by my gastroentologist. Connie Hampton <connie@...> wrote: If you want a " gold " diagnosis for purposes of managing the " system " and not having to fight as hard when you are not competent to do so, or if you need outside verification in order to stay off the wheat then no. There are other (blood) tests that return many false negatives, there are saliva and stool tests that are not accepted by regular doctors, there are gene tests that tell you if you have the genes for gluten sensitivity, there are antibody tests and fat absorption tests and a couple of others. If you just want to know that is wheat, rye, barley and oats that are doing you in AND you have gut issues that you can personally identify, then just staying very, very clear of wheat, rye, barley and oats for 2 weeks will tell you. But stay on it until you get the biopsy if that is the test you want, because you can cau! se a false negative if you are not currently really tearing up your gut. The biopsy is not difficult, doesn't hurt and is done under anathesia. They take samples of your small intestine and look at it under the microscope to find the atrophied villi. And of course, your insurance pays and therefore knows. Connie -----Original Message----- From: [mailto: ] On Behalf Of s_setya Sent: Wednesday, May 04, 2005 5:55 PM Subject: [ ] diagnosis for cd Hi Guys, My Doctor is pretty confident that I have celiac's disease... he has referred me to a gastroenterologist to have a endoscopy/biopsy to confirm the same... my question is that teh only way for a confirmed diagnosis?? is there no other way? -S Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2005 Report Share Posted May 5, 2005 , after your procedures showed damage, did they then finally give you a diagnosis of celiac disease? My daughter and I are both diagnosed celiacs. My 30-year old son was "allergic" to wheat when he was a baby and "grew out of it." Recently, they did four blood tests on him because of the unbelievable gas he has after eating (my big symptom before being diagnosed). All blood tests came back negative. I'm just wondering if he should go to his doctor and demand an endoscope procedure. Thanks. Hersom susan.hersom@... From: [mailto: ] On Behalf Of AvilesSent: Thursday, May 05, 2005 8:49 AM Subject: RE: [ ] diagnosis for cd Hey S_Setya –They do the endoscopy outpatient now, and with the drugs they use, you’ll likely not remember a thing about the procedure. You will want to take the whole day off and have family or friends take you there and home. I’m a celiac that had negative results on all the blood tests. My biopsy/endoscopy showed lots of inflammation and damage, hence the pain and diarrhea. It’s the way to get direct evidence of what’s going on in your intestines. Once you know, the diet changes can give you back your life. It’s as simple (or as hard) as not eating gluten anymore. To fight the inflammation, some doctors give prednisone. It’s a powerful drug that works, but with lots of un-fun side effects (says she who was on 60 mg/day). They now have entocort, and it has much fewer side effects. Of course, it costs more too. At the Stanford Celiac conference last October, they said this was one of the easier immune diseases in that we can stop the problems by avoiding gluten. I hadn’t thought of it in those terms before… Good luck whatever you choose to do. http://www.celiac.com/st_prod.html?p_prodid=946 - -----Original Message-----From: [mailto: ]On Behalf Of Naren WadhwaniSent: Wednesday, May 04, 2005 11:03 PM Subject: RE: [ ] diagnosis for cd I agree with most of what is written below EXCEPT that 2 weeks off of gluten will tell you anything. That is not long enough at all by my experience, and based on what I was told by my gastroentologist.Connie Hampton <connie@...> wrote: If you want a "gold" diagnosis for purposes of managing the "system" and nothaving to fight as hard when you are not competent to do so, or if you needoutside verification in order to stay off the wheat then no.There are other (blood) tests that return many false negatives, there aresaliva and stool tests that are not accepted by regular doctors, there aregene tests that tell you if you have the genes for gluten sensitivity, thereare antibody tests and fat absorption tests and a couple of others.If you just want to know that is wheat, rye, barley and oats that are doingyou in AND you have gut issues that you can personally identify, then juststaying very, very clear of wheat, rye, barley and oats for 2 weeks willtell you. But stay on it until you get the biopsy if that is the test youwant, because you can cau! se a false negative if you are not currently reallytearing up your gut.The biopsy is not difficult, doesn't hurt and is done under anathesia. Theytake samples of your small intestine and look at it under the microscope tofind the atrophied villi. And of course, your insurance pays and therefore knows.Connie -----Original Message-----From: [mailto: ]On Behalf Of s_setyaSent: Wednesday, May 04, 2005 5:55 PM Subject: [ ] diagnosis for cdHi Guys,My Doctor is pretty confident that I have celiac's disease... he hasreferred me to a gastroenterologist to have a endoscopy/biopsy toconfirm the same... my question is that teh only way for a confirmeddiagnosis?? is there no other way? -S Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2005 Report Share Posted May 5, 2005 It was once believed that CD was something of a pediatric disease, and that kids "grew out of it." It's now known that children with CD (as opposed to an allergy) do not get rid of the disease; the symptoms simply go away. The damage may continue, unobserved. If you have CD, you have it for life. As you probably know, CD, along with autoimmune diseases in general, is highl Blood tests are notorious for false negatives. Best wishes. Harper In a message dated 5/5/05 9:01:35 AM, susan.hersom@... writes: , after your procedures showed damage, did they then finally give you a diagnosis of celiac disease? My daughter and I are both diagnosed celiacs. My 30-year old son was "allergic" to wheat when he was a baby and "grew out of it." Recently, they did four blood tests on him because of the unbelievable gas he has after eating (my big symptom before being diagnosed). All blood tests came back negative. I'm just wondering if he should go to his doctor and demand an endoscope procedure. Thanks. Hersom susan.hersom@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2005 Report Share Posted May 5, 2005 An endoscopy is reasonable, since it’s in your family and he’s starting to have intestinal problems. Sadly, many doctors aren’t up on the latest research (it’s not just the young, it’s not just the thin, and it’s not just the anemic). Here’s a link with information your son can take to his doctor – both making his case and helping the doctor be better prepared for the next celiac. http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/ It was the pattern of intestinal damage and villi erosion in the biopsies that made it clear that I am a celiac. But it didn’t show up until my mid 30’s. I could cry when I think of the years I spent feeling sick, able to do less and less. Now that you mention it, lots of gas was the earliest sign (that I missed at the time). The test can show he’s fine (for now) or give him a chance to chose health instead of having him lose years of his life to not feeling quite right. Now that I’m feeling better, I have to constantly remind myself that a little bit will STILL cause damage, even if it doesn’t make me run to the bathroom like before. The Stanford conference opened my eyes at how much silent damage I could be causing myself by cheating and eating wheat. Good luck to you and your family – -----Original Message----- From: [mailto: ]On Behalf Of Hersom, A. Sent: Thursday, May 05, 2005 8:54 AM Subject: RE: [ ] diagnosis for cd , after your procedures showed damage, did they then finally give you a diagnosis of celiac disease? My daughter and I are both diagnosed celiacs. My 30-year old son was " allergic " to wheat when he was a baby and " grew out of it. " Recently, they did four blood tests on him because of the unbelievable gas he has after eating (my big symptom before being diagnosed). All blood tests came back negative. I'm just wondering if he should go to his doctor and demand an endoscope procedure. Thanks. Hersom susan.hersom@... From: [mailto: ] On Behalf Of Aviles Sent: Thursday, May 05, 2005 8:49 AM Subject: RE: [ ] diagnosis for cd Hey S_Setya –They do the endoscopy outpatient now, and with the drugs they use, you’ll likely not remember a thing about the procedure. You will want to take the whole day off and have family or friends take you there and home. I’m a celiac that had negative results on all the blood tests. My biopsy/endoscopy showed lots of inflammation and damage, hence the pain and diarrhea. It’s the way to get direct evidence of what’s going on in your intestines. Once you know, the diet changes can give you back your life. It’s as simple (or as hard) as not eating gluten anymore. To fight the inflammation, some doctors give prednisone. It’s a powerful drug that works, but with lots of un-fun side effects (says she who was on 60 mg/day). They now have entocort, and it has much fewer side effects. Of course, it costs more too. At the Stanford Celiac conference last October, they said this was one of the easier immune diseases in that we can stop the problems by avoiding gluten. I hadn’t thought of it in those terms before… Good luck whatever you choose to do. http://www.celiac.com/st_prod.html?p_prodid=946 - -----Original Message----- From: [mailto: ]On Behalf Of Naren Wadhwani Sent: Wednesday, May 04, 2005 11:03 PM Subject: RE: [ ] diagnosis for cd I agree with most of what is written below EXCEPT that 2 weeks off of gluten will tell you anything. That is not long enough at all by my experience, and based on what I was told by my gastroentologist. Connie Hampton <connie@...> wrote: If you want a " gold " diagnosis for purposes of managing the " system " and not having to fight as hard when you are not competent to do so, or if you need outside verification in order to stay off the wheat then no. There are other (blood) tests that return many false negatives, there are saliva and stool tests that are not accepted by regular doctors, there are gene tests that tell you if you have the genes for gluten sensitivity, there are antibody tests and fat absorption tests and a couple of others. If you just want to know that is wheat, rye, barley and oats that are doing you in AND you have gut issues that you can personally identify, then just staying very, very clear of wheat, rye, barley and oats for 2 weeks will tell you. But stay on it until you get the biopsy if that is the test you want, because you can cau! se a false negative if you are not currently really tearing up your gut. The biopsy is not difficult, doesn't hurt and is done under anathesia. They take samples of your small intestine and look at it under the microscope to find the atrophied villi. And of course, your insurance pays and therefore knows. Connie -----Original Message----- From: [mailto: ] On Behalf Of s_setya Sent: Wednesday, May 04, 2005 5:55 PM Subject: [ ] diagnosis for cd Hi Guys, My Doctor is pretty confident that I have celiac's disease... he has referred me to a gastroenterologist to have a endoscopy/biopsy to confirm the same... my question is that teh only way for a confirmed diagnosis?? is there no other way? -S Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.