Guest guest Posted August 7, 2004 Report Share Posted August 7, 2004 Dr. Fine's/Enterolab method is very new. It was only approved by the U.S. Government for patent on 12/23/03. http://www.pharmcast.com/Patents100/Yr2003/Dec2003/122303/6667160_Food122303.htm It is not the standard . . . yet. He is planning to publish his testing results soon--he has already published other articles in the New England Journal of the Medicine (probably the most respected journal in this country), and other journals. Because the technique Dr. Fine developed is now patented, other doctors are able to peer review his results--if they don't that says something about them. (Gastroenterologist surgeons and the wheat industry financially benefit by not have Dr. Fine's test become the standard.) Italian researchers have developed a similar technique to Dr. Fine's. http://www.celiac.com/st_prod.html?p_prodid=919The U.S. Patent Office has confirmed that his method is "novel"--that is he has created a new, more efficient (and cheaper) testing that works. The man is brilliant. These are his credentials. http://www.enterolab.com/CV/ The tests threshholds for celiac disease is too high. People who are tested for celiac by the blood and biopsy tests are sometimes found negative for celiac. Years later when they have suffered more harm and, sometimes, permanent damage, they are tested again and found positive. In fact, now some doctors are reporting that celiac disease begins in childhood. http://www.clanthompson.com/news_archives_story.php3?story_id=44 & category=Old%20News%20Stories & category_id=2 The whole present setup for diagnosing celiac disease is almost Alice in Wonderland. Positive blood tests don't prove that you have celiac. Negative blood tests don't prove you don't have celiac. Positive biopsies don't prove you have celiac. Negative biopsies don't prove that you don't have celiac. Positive gene tests for celiac don't prove that you have celiac. Negative gene tests don't prove you don't have celiac. What is really important about this is whether or not you have to stop eating gluten. Dr. Fine's/Enterolab's test tells you that with one simple stool test from your home that is much cheaper than the blood tests and the biopsy, and much less hullabaloo. My Yale-educated M.D. prescribed the Enterolab test for me. Rudert, M.D., one of the leaders in celiac disease supports Dr. Fine. I've only heard claims that only one celiac gastroenterologist does not support Dr. Fine--and his objection is that it has not been peer reviewed. (He could have started on this last December.) My gastroenterologist told me that Dr. Fine was a very good doctor. Many other doctors prescribe Enterolab. My insurance reimbursed me for it. Many other insurance companies reimburse for Enterolab. Jo Anne All the testing Since bringing up the subject about testing, I have come across a lot of different information, and opinions. EnteroLabs has their tests, yet I have heard that other well known celiac doctors disagree with them. It makes me wonder if something like what enteroLabs is doing hasnt become a standard. If it is so great as they claim, then why isnt everyone doing it? Of course I have worked around doctors alot, and I know just as any professional pride can get in the way. They may each have their own idea on how to do it.So, what am I to do, if I can I would do it all. Going to keep getting blood work done, and keep an eye on my numbers, and going to get the entero labs test if my insurance will pay for it. Definately going to get a celiac gene test nomatter what. Other than that, I trust my GI doctor knows what he is doing, and try to keep an eye on things.Since I have stopped the gluten free diet, its hard to think that I have celiacs, and am actually feeling better. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2004 Report Share Posted August 7, 2004 Just for a point of information, the people from Entro Labs were not at the NIH Conference. The people from Prometheus and all of the well known doctors were at the NIH Conference and participated in the panel. The well known doctors who disagree with the people at Entro Labs were the ones at the Conference and the ones who are world known for being experts in celiac. I have heard all of them speak at different times and some of them again at the NIH Conference, plus, I have heard the head of Entro Labs speak. I don't want to bad mouth them, but I hate to see people get false information when they are sick and it cost money. Since I have been sick alot before I was diagnosed, I am very careful to do my research about doctors and very particular about who I use. ita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2004 Report Share Posted August 7, 2004 Jo Anne More power to you if you believe in Dr. Fine, this is a free country. I just disagree and wanted to let you know my feelings, too. My husband has a Ph.D. in Immunology and Microbiology (worked at NIH and retired a few years ago) and had a talk with Dr. Fine with me there about his testings. Afterwards, my husband said the stool testing is hogwash based upon the questions he asked Dr. Fine and the answers or non answers he got. Another person there from NIH said the same thing. If you believe in his methods and research, that is fine for you. I just do not agree with it based upon some people that I trust besides my husband - other celiac researchers. They say more that half of the treatment is the faith that you have in it and the doctor, so go for it. ita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2004 Report Share Posted August 8, 2004 ita, all the facts you give are two people who disagree with Dr. Fine, and none who has bothered to test his results. I have pointed out a whole lot more positive authorities. Oh, yes, the United States medical establishment, including NIH, has a lot to answer for failing to catch the prevalence of celiac disease in the United States (although Europe already had) until Dr. Fasano, an Italian born and educated doctor, did the prevalence studies. Actually I do not agree with the present system of testing for celiac disease. It doesn't work if you have eaten gluten-free very long at all. Nothing--not the blood test, not the biopsy, not the gene test is definite, whether positive or negative. And, WORST of all, it does not catch people with a need to go gluten-free soon enough. Only Dr. Fine's test caught my gluten problem (my gastroenterologist ignored the inflammation in my intestines), and because I went gluten-free (which I did before Dr. Fine's report so it's not psychological from his treatment), I have-- much more mental energy, much more physical energy, end to 6+ years of sinus infections, faster healing, much less diarrhea, much more relaxed, greatly reduced heartburn, reduced peripheral neuropathy, much reduced skin eruptions, thickening of hair (many visibly growing short hairs), and sudden and much more healing of my spinal cord injury. I am going back to work after not being able to work for the past 6 years. I've been there, done that, and I personally know without a doubt that Dr. Fine is doing the best thing for people that need to go gluten-free. Jo Anne Re: All the testing Jo Anne More power to you if you believe in Dr. Fine, this is a free country. I just disagree and wanted to let you know my feelings, too. My husband has a Ph.D. in Immunology and Microbiology (worked at NIH and retired a few years ago) and had a talk with Dr. Fine with me there about his testings. Afterwards, my husband said the stool testing is hogwash based upon the questions he asked Dr. Fine and the answers or non answers he got. Another person there from NIH said the same thing. If you believe in his methods and research, that is fine for you. I just do not agree with it based upon some people that I trust besides my husband - other celiac researchers. They say more that half of the treatment is the faith that you have in it and the doctor, so go for it. ita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2004 Report Share Posted August 9, 2004 Clearly this is a "hot button" topic, and though I hesitate to get "in the middle" of anything my question is this: Who are the Drs. that support Dr. Fine??? I haven't heard of any, to date, so am curious who & where they are. I would be interested in seeing the research that supports his approach. A second question, who is the end-all authority on the "top doctors on celiac"? A great rule-of-thumb my husband & I were told when my son was born with Down Syndrome was that ANYBODY can put ANYTHING they want to on the internet, so tread carefully on the information you retrieve from that source. Ironically, it also provides the wonderful opportunity we all have to share in this group! Also, I have asked about these other labs and the opinion I received was that both of the most "advertised" labs that do these alternative tests are making plenty of $$ doing it, and almost always seem to find the same "Result" in everybody they test. Having a child with special needs, I have had plenty of opportunities to be "approached" about alternative therapies, etc. With lots of investigation, we have usually found that they are about making other folks rich because they are preying on our vulnerability. Just my personal words of caution based on our personal experience, and NOT passing judgement at all!! Everyone needs to do what works for them, especially for your health!!! Lastly, as far as I know, the "gene test" is absolutely accurate. If done correctly, the HLA test actually shows your DNA & as far as I know, you either have the gene markers or you don't - no gray area at all. Also, for the "blood test", I was told that it would show what had been happening in GI system 3 - 6 mos. ago, and that although the GI reaction to contamination was almost immediate in most people, the antibodies show the contamination at a slower rate. (We were concerned about some contamination that occurred a few weeks ago when our son had blood drawn last week.) I hope I have not offended anyone by offering my opinions or asking these questions. Fortunately or unfortunately, I am a "question person" and I know that can come across as confrontational, but that is not the intention at all. I am very interested in ANY testing that is easier & less invasive for my child, so I hope this conversation continues so we can all be exposed to as much information/education as possible!!! Thank you to everybody who continues to share in this group, especially to Melonie who manages to keep us all together!!!!! Re: All the testing Jo Anne More power to you if you believe in Dr. Fine, this is a free country. I just disagree and wanted to let you know my feelings, too. My husband has a Ph.D. in Immunology and Microbiology (worked at NIH and retired a few years ago) and had a talk with Dr. Fine with me there about his testings. Afterwards, my husband said the stool testing is hogwash based upon the questions he asked Dr. Fine and the answers or non answers he got. Another person there from NIH said the same thing. If you believe in his methods and research, that is fine for you. I just do not agree with it based upon some people that I trust besides my husband - other celiac researchers. They say more that half of the treatment is the faith that you have in it and the doctor, so go for it. ita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2004 Report Share Posted August 9, 2004 Clearly this is a "hot button" topic, and though I hesitate to get "in the middle" of anything my question is this: Who are the Drs. that support Dr. Fine??? I haven't heard of any, to date, so am curious who & where they are. I would be interested in seeing the research that supports his approach. A second question, who is the end-all authority on the "top doctors on celiac"? A great rule-of-thumb my husband & I were told when my son was born with Down Syndrome was that ANYBODY can put ANYTHING they want to on the internet, so tread carefully on the information you retrieve from that source. Ironically, it also provides the wonderful opportunity we all have to share in this group! Also, I have asked about these other labs and the opinion I received was that both of the most "advertised" labs that do these alternative tests are making plenty of $$ doing it, and almost always seem to find the same "Result" in everybody they test. Having a child with special needs, I have had plenty of opportunities to be "approached" about alternative therapies, etc. With lots of investigation, we have usually found that they are about making other folks rich because they are preying on our vulnerability. Just my personal words of caution based on our personal experience, and NOT passing judgement at all!! Everyone needs to do what works for them, especially for your health!!! Lastly, as far as I know, the "gene test" is absolutely accurate. If done correctly, the HLA test actually shows your DNA & as far as I know, you either have the gene markers or you don't - no gray area at all. Also, for the "blood test", I was told that it would show what had been happening in GI system 3 - 6 mos. ago, and that although the GI reaction to contamination was almost immediate in most people, the antibodies show the contamination at a slower rate. (We were concerned about some contamination that occurred a few weeks ago when our son had blood drawn last week.) I hope I have not offended anyone by offering my opinions or asking these questions. Fortunately or unfortunately, I am a "question person" and I know that can come across as confrontational, but that is not the intention at all. I am very interested in ANY testing that is easier & less invasive for my child, so I hope this conversation continues so we can all be exposed to as much information/education as possible!!! Thank you to everybody who continues to share in this group, especially to Melonie who manages to keep us all together!!!!! Re: All the testing Jo Anne More power to you if you believe in Dr. Fine, this is a free country. I just disagree and wanted to let you know my feelings, too. My husband has a Ph.D. in Immunology and Microbiology (worked at NIH and retired a few years ago) and had a talk with Dr. Fine with me there about his testings. Afterwards, my husband said the stool testing is hogwash based upon the questions he asked Dr. Fine and the answers or non answers he got. Another person there from NIH said the same thing. If you believe in his methods and research, that is fine for you. I just do not agree with it based upon some people that I trust besides my husband - other celiac researchers. They say more that half of the treatment is the faith that you have in it and the doctor, so go for it. ita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2004 Report Share Posted August 9, 2004 Clearly this is a "hot button" topic, and though I hesitate to get "in the middle" of anything my question is this: Who are the Drs. that support Dr. Fine??? I haven't heard of any, to date, so am curious who & where they are. I would be interested in seeing the research that supports his approach. A second question, who is the end-all authority on the "top doctors on celiac"? A great rule-of-thumb my husband & I were told when my son was born with Down Syndrome was that ANYBODY can put ANYTHING they want to on the internet, so tread carefully on the information you retrieve from that source. Ironically, it also provides the wonderful opportunity we all have to share in this group! Also, I have asked about these other labs and the opinion I received was that both of the most "advertised" labs that do these alternative tests are making plenty of $$ doing it, and almost always seem to find the same "Result" in everybody they test. Having a child with special needs, I have had plenty of opportunities to be "approached" about alternative therapies, etc. With lots of investigation, we have usually found that they are about making other folks rich because they are preying on our vulnerability. Just my personal words of caution based on our personal experience, and NOT passing judgement at all!! Everyone needs to do what works for them, especially for your health!!! Lastly, as far as I know, the "gene test" is absolutely accurate. If done correctly, the HLA test actually shows your DNA & as far as I know, you either have the gene markers or you don't - no gray area at all. Also, for the "blood test", I was told that it would show what had been happening in GI system 3 - 6 mos. ago, and that although the GI reaction to contamination was almost immediate in most people, the antibodies show the contamination at a slower rate. (We were concerned about some contamination that occurred a few weeks ago when our son had blood drawn last week.) I hope I have not offended anyone by offering my opinions or asking these questions. Fortunately or unfortunately, I am a "question person" and I know that can come across as confrontational, but that is not the intention at all. I am very interested in ANY testing that is easier & less invasive for my child, so I hope this conversation continues so we can all be exposed to as much information/education as possible!!! Thank you to everybody who continues to share in this group, especially to Melonie who manages to keep us all together!!!!! Re: All the testing Jo Anne More power to you if you believe in Dr. Fine, this is a free country. I just disagree and wanted to let you know my feelings, too. My husband has a Ph.D. in Immunology and Microbiology (worked at NIH and retired a few years ago) and had a talk with Dr. Fine with me there about his testings. Afterwards, my husband said the stool testing is hogwash based upon the questions he asked Dr. Fine and the answers or non answers he got. Another person there from NIH said the same thing. If you believe in his methods and research, that is fine for you. I just do not agree with it based upon some people that I trust besides my husband - other celiac researchers. They say more that half of the treatment is the faith that you have in it and the doctor, so go for it. ita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2004 Report Share Posted August 9, 2004 , you apparently have missed the e-mails on this subject that came before. Before giving personal words of caution assuming that a person such as Dr. Fine/Enterolab "could be preying on our vulnerability", it is better to ask the questions and wait for the answers. Some of the doctors who support Dr. Fine are stated as follows. Some of the research that supports his approach are as follows. The authority for quoting that Dr. Fine is one of the top five celiac doctors/researchers is as follows. I am taking Go-Lytely for testing tomorrow so I am no longer feeling well enough to answer your questions about the unreliability of celiac blood tests, biopsies and gene tests for determining whether a person has celiac disease or does not have celiac disease. I will probably do that late tomorrow. Another member asked why there is controversy about Dr. Fine/Enterolab, and my answer was as follows Re: All the testing Clearly this is a "hot button" topic, and though I hesitate to get "in the middle" of anything my question is this: Who are the Drs. that support Dr. Fine??? I haven't heard of any, to date, so am curious who & where they are. I would be interested in seeing the research that supports his approach. A second question, who is the end-all authority on the "top doctors on celiac"? A great rule-of-thumb my husband & I were told when my son was born with Down Syndrome was that ANYBODY can put ANYTHING they want to on the internet, so tread carefully on the information you retrieve from that source. Ironically, it also provides the wonderful opportunity we all have to share in this group! Also, I have asked about these other labs and the opinion I received was that both of the most "advertised" labs that do these alternative tests are making plenty of $$ doing it, and almost always seem to find the same "Result" in everybody they test. Having a child with special needs, I have had plenty of opportunities to be "approached" about alternative therapies, etc. With lots of investigation, we have usually found that they are about making other folks rich because they are preying on our vulnerability. Just my personal words of caution based on our personal experience, and NOT passing judgement at all!! Everyone needs to do what works for them, especially for your health!!! Lastly, as far as I know, the "gene test" is absolutely accurate. If done correctly, the HLA test actually shows your DNA & as far as I know, you either have the gene markers or you don't - no gray area at all. Also, for the "blood test", I was told that it would show what had been happening in GI system 3 - 6 mos. ago, and that although the GI reaction to contamination was almost immediate in most people, the antibodies show the contamination at a slower rate. (We were concerned about some contamination that occurred a few weeks ago when our son had blood drawn last week.) I hope I have not offended anyone by offering my opinions or asking these questions. Fortunately or unfortunately, I am a "question person" and I know that can come across as confrontational, but that is not the intention at all. I am very interested in ANY testing that is easier & less invasive for my child, so I hope this conversation continues so we can all be exposed to as much information/education as possible!!! Thank you to everybody who continues to share in this group, especially to Melonie who manages to keep us all together!!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2004 Report Share Posted August 9, 2004 Hi , As far as I know none of the top doctors in Celiac research have even bothered to check into Dr. Fine's tests, so they shouldn't really be saying that his tests aren't valid without checking them for themselves. But as for there not being any gray area as far as the gene test goes, there is a gray area. You see, if you are positive for the genes, then you know that you have or might get Celiac Disease in the future. But if you test negative that is where the gray area occurs. You see, they have not done enough research into the genetics of Celiac to know that they have isolated ALL of the genes responsible for the disease. So if you are negative, this does not mean that you will NEVER get Celiac Disease, or that you don't have a problem with gluten. I have two boys who are gluten intolerant, but do not have either of the CD genes. There are lesser genes that are known to cause gluten intolerance, yet are not considered Celiac, which my boys have. Most doctors never test for non-celiac gluten intolerance even though it is causing just as many health problems as CD. Maybe someday they might also consider them to cause CD. One of my boys is very ill with other things as well as the gluten intolerance. One of his doctors(an rheumotologist/infectious disease/immunologist specialist) will not dismiss CD in his case, despite the apparently negative gene test, since he has so many of the symptoms that improve so dramatically when he is on the diet. I still feel the medical field needs to put more weight into the diet, since that is the only test that can tell you how your body will react to being gluten free. God bless, nn Maslan wrote: Clearly this is a "hot button" topic, and though I hesitate to get "in the middle" of anything my question is this: Who are the Drs. that support Dr. Fine??? I haven't heard of any, to date, so am curious who & where they are. I would be interested in seeing the research that supports his approach. A second question, who is the end-all authority on the "top doctors on celiac"? A great rule-of-thumb my husband & I were told when my son was born with Down Syndrome was that ANYBODY can put ANYTHING they want to on the internet, so tread carefully on the information you retrieve from that source. Ironically, it also provides the wonderful opportunity we all have to share in this group! Also, I have asked about these other labs and the opinion I received was that both of the most "advertised" labs that do these alternative tests are making plenty of $$ doing it, and almost always seem to find the same "Result" in everybody they test. Having a child with special needs, I have had plenty of opportunities to be "approached" about alternative therapies, etc. With lots of investigation, we have usually found that they are about making other folks rich because they are preying on our vulnerability. Just my personal words of caution based on our personal experience, and NOT passing judgement at all!! Everyone needs to do what works for them, especially for your health!!! Lastly, as far as I know, the "gene test" is absolutely accurate. If done correctly, the HLA test actually shows your DNA & as far as I know, you either have the gene markers or you don't - no gray area at all. Also, for the "blood test", I was told that it would show what had been happening in GI system 3 - 6 mos. ago, and that although the GI reaction to contamination was almost immediate in most people, the antibodies show the contamination at a slower rate. (We were concerned about some contamination that occurred a few weeks ago when our son had blood drawn last week.) I hope I have not offended anyone by offering my opinions or asking these questions. Fortunately or unfortunately, I am a "question person" and I know that can come across as confrontational, but that is not the intention at all. I am very interested in ANY testing that is easier & less invasive for my child, so I hope this conversation continues so we can all be exposed to as much information/education as possible!!! Thank you to everybody who continues to share in this group, especially to Melonie who manages to keep us all together!!!!! ----- Original Message ----- From: J. To: SillyYaks Sent: Sunday, August 08, 2004 10:42 AM Subject: Re: All the testing ita, all the facts you give are two people who disagree with Dr. Fine, and none who has bothered to test his results. I have pointed out a whole lot more positive authorities. Oh, yes, the United States medical establishment, including NIH, has a lot to answer for failing to catch the prevalence of celiac disease in the United States (although Europe already had) until Dr. Fasano, an Italian born and educated doctor, did the prevalence studies. Actually I do not agree with the present system of testing for celiac disease. It doesn't work if you have eaten gluten-free very long at all. Nothing--not the blood test, not the biopsy, not the gene test is definite, whether positive or negative. And, WORST of all, it does not catch people with a need to go gluten-free soon enough. Only Dr. Fine's test caught my gluten problem (my gastroenterologist ignored the inflammation in my intestines), and because I went gluten-free (which I did before Dr. Fine's report so it's not psychological from his treatment), I have-- much more mental energy, much more physical energy, end to 6+ years of sinus infections, faster healing, much less diarrhea, much more relaxed, greatly reduced heartburn, reduced peripheral neuropathy, much reduced skin eruptions, thickening of hair (many visibly growing short hairs), and sudden and much more healing of my spinal cord injury. I am going back to work after not being able to work for the past 6 years. I've been there, done that, and I personally know without a doubt that Dr. Fine is doing the best thing for people that need to go gluten-free. Jo Anne ----- Original Message ----- From: jaonebel@... To: SillyYaks Sent: Saturday, August 07, 2004 10:43 PM Subject: Re: All the testing Jo Anne More power to you if you believe in Dr. Fine, this is a free country. I just disagree and wanted to let you know my feelings, too. My husband has a Ph.D. in Immunology and Microbiology (worked at NIH and retired a few years ago) and had a talk with Dr. Fine with me there about his testings. Afterwards, my husband said the stool testing is hogwash based upon the questions he asked Dr. Fine and the answers or non answers he got. Another person there from NIH said the same thing. If you believe in his methods and research, that is fine for you. I just do not agree with it based upon some people that I trust besides my husband - other celiac researchers. They say more that half of the treatment is the faith that you have in it and the doctor, so go for it. ita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 Maslan wrote: Lastly, as far as I know, the "gene test" is absolutely accurate. If done correctly, the HLA test actually shows your DNA & as far as I know, you either have the gene markers or you don't - no gray area at all. , I've been thinking about all this exciting news on gene testing, but am a little cautious. When I had an amnio while pregnant with my son that is now 11, we were told that at that time they did not know the gene markers for celiac disease. From that I conclude that this knowledge is relatively new. While in nursing school, I remember being taught how certain diseases (types of cancer is an example) were once thought to be the same and later were discovered to be altogether different diseases. From this information, I would conclude that it is possible that gluten intolerance may have more than one gene marker, because it may be more than one disease. So while a positive may truly be positive for carrying the gene even though the person may not be symptomatic, it may not conclusively say that the person doesn't have some type of gluten intolerance. Just my thoughts, Quote Link to comment Share on other sites More sharing options...
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