Guest guest Posted November 12, 2003 Report Share Posted November 12, 2003 I attended a lecture by Dr. Fasano <http://www.celiaccenter.org/> on Sunday and he was questioned about the stool test (without mentioning any names). He said that the doctor (Dr. Fine, but again, no names were mentioned) is the only person in the world claiming to get accurate results via the stool test and he has yet to publish any research results so that they can be reviewed and tested by other scientists in the standard way. Because of this lack of documentation and false results he has seen in his patients, he does not recommend the stool tests. I was wondering what your thoughts are on this. Dr. Fine's research and results may be statistically accurate, but if so, why not allow his research to be reviewed by his peers? Is he a quack out to make a quick buck or is he legitimate but financially selfish? If he is legitimate he is preventing millions of people outside the US from benefitting from his work. Legitimate research is subjected to review and testing with the main proving point being a " Yes. " to the question " Can the reported results be duplicated by another scientist? " So, thoughts anyone? julie --- IM/Yahoo/LJ: Maguire708 ICQ: 54035938 NCSSM '91 Antioch '95 IWG #708 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2004 Report Share Posted September 17, 2004 I had to use Enterolab to get a diagnosis because I had been off gluten a year before I being tested. Blood test and biopsy were negative, although I now know my GI only took one biopsy sample. They are supposed to take at least six. I am happy to have my gluten sensitivity diagnosis because it is better than nothing. It is bittersweet, though, because it is not generally recognized by medical professionals, and has led to many tears while leaving doctors' offices. I feel like a " second-class " celiac, if you will. I don't have a GI to consult, like other celiacs. I am basically a patient without a doctor. My current family doctor doesn't even know of my condition, because I refuse to be treated like I'm crazy again. It's insane that I'm afraid to tell my doctor I'm sick. I just see him for minor things. There are so many drawbacks to this diagnosis, but at least it's available, and maybe someday all the work Dr. Fine is doing will be recognized for what it is: PROOF of a life-threatening illness! The upside to my diagnosis is my family members now are slowly starting to get tested. You can't argue with a gene test. I could go on and on, but I honestly don't know if I should. I rarely see Enterolab come up in these posts, and when it does, it seems like very few people, if any, reply. I finally decided to add my two-cents worth today to see if there of others who used Enterolab. Anybody out there? Audrey > Hi, Everyone, > I have another question. Actually a few. Has anyone used the stool test from > Enterolabs to diagnose gluten sensitivity? Also, have you used any of the > other tests besides the gene test I hear about? From my thinking (and it > could be flawed) I would rather have a definite gliadin presence in the > stool than wonder if I am in the 81% of the population that might get > celiac. The real reason I am asking though is that my 2nd son tested > negative on the blood test but showed classic symptoms, i.e. B12 deficiency > anemia, malnutrition, lymphopenia, fell half of the growth chart in one > year, diarrhea, stomach aches, rash, it goes on. I don't need a formal > diagnosis for him to know that he is not doing gluten in any form. But now > my 15 month old is anemic, irritable and has never had a formed stool (but > doesn't have chronic diarrhea). He's slimmed down and dropped from 85% in > height to 60%. He's wheat free but not gluten free. He has also started the > night wakings. Wouldn't it be better to do a stool test on him? I also have > a 6 year old with no symptoms other than a very fine rash that looks like > goose bumps in a few places. I noticed that they clear up when he's been off > wheat for a while. If I do a gene test and he's potentially celiac and I > stop him from consuming gluten, and then he gets into it at a friend's house > or school is he more likely to have an autoimmune response? Am I being > paranoid? This is fairly new to us. (And to complicate things the biochemist > said food allergies-which my middle son has-- can mimic celiac > symptoms---AUGHHH!) > > > Marcie Concepcion Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2004 Report Share Posted September 17, 2004 I had to use Enterolab to get a diagnosis because I had been off gluten a year before I being tested. Blood test and biopsy were negative, although I now know my GI only took one biopsy sample. They are supposed to take at least six. I am happy to have my gluten sensitivity diagnosis because it is better than nothing. It is bittersweet, though, because it is not generally recognized by medical professionals, and has led to many tears while leaving doctors' offices. I feel like a " second-class " celiac, if you will. I don't have a GI to consult, like other celiacs. I am basically a patient without a doctor. My current family doctor doesn't even know of my condition, because I refuse to be treated like I'm crazy again. It's insane that I'm afraid to tell my doctor I'm sick. I just see him for minor things. There are so many drawbacks to this diagnosis, but at least it's available, and maybe someday all the work Dr. Fine is doing will be recognized for what it is: PROOF of a life-threatening illness! The upside to my diagnosis is my family members now are slowly starting to get tested. You can't argue with a gene test. I could go on and on, but I honestly don't know if I should. I rarely see Enterolab come up in these posts, and when it does, it seems like very few people, if any, reply. I finally decided to add my two-cents worth today to see if there of others who used Enterolab. Anybody out there? Audrey > Hi, Everyone, > I have another question. Actually a few. Has anyone used the stool test from > Enterolabs to diagnose gluten sensitivity? Also, have you used any of the > other tests besides the gene test I hear about? From my thinking (and it > could be flawed) I would rather have a definite gliadin presence in the > stool than wonder if I am in the 81% of the population that might get > celiac. The real reason I am asking though is that my 2nd son tested > negative on the blood test but showed classic symptoms, i.e. B12 deficiency > anemia, malnutrition, lymphopenia, fell half of the growth chart in one > year, diarrhea, stomach aches, rash, it goes on. I don't need a formal > diagnosis for him to know that he is not doing gluten in any form. But now > my 15 month old is anemic, irritable and has never had a formed stool (but > doesn't have chronic diarrhea). He's slimmed down and dropped from 85% in > height to 60%. He's wheat free but not gluten free. He has also started the > night wakings. Wouldn't it be better to do a stool test on him? I also have > a 6 year old with no symptoms other than a very fine rash that looks like > goose bumps in a few places. I noticed that they clear up when he's been off > wheat for a while. If I do a gene test and he's potentially celiac and I > stop him from consuming gluten, and then he gets into it at a friend's house > or school is he more likely to have an autoimmune response? Am I being > paranoid? This is fairly new to us. (And to complicate things the biochemist > said food allergies-which my middle son has-- can mimic celiac > symptoms---AUGHHH!) > > > Marcie Concepcion Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2004 Report Share Posted September 17, 2004 I was tested last year with Enterolab (the Stool and Gene Panel Complete) For many of the same reasons that Audrey stated. And I also am a Celiac without a doctor, so to speak. I would have liked to be able to have follow up care and testing for deficiencies, but it was not going to happen. I needed proof to feel confident that I needed the gf diet forever, and I got it. I also was able to get my children tested based on the results. When we had difficulties with the insurance and inconclusive blood tests for all three of the kids, we turned to Enterolab for them as well. They all have problems with gluten and dairy and have been on the diet for about 6 months now. They are so much healthier now and growing better. They DO have follow-up care. Their pediGI was willing to monitor their progress on the gf diet, even though he is not giving them a diagnosis of Celiac. He admits that if they are better on the diet, then keeping them on if won't hurt them. They only need to see him if the symptoms return and that has not happened, except for the occasional gluten accident. We keep in touch through e-mail and I don't mind that. It is something. I have a son that has multiple health issues and he sees a pediatric rheumotologist/immunologist. This doctor is great. He looked at the test results and the fact that he is growing so much better on the diet, than he was off of it. He said that regardless if the gene test shows he does not have the Celiac genes (DQ2 & 8), my son has DQ1 & 3 which Enterolab says can cause gluten sensitivity, and he is not willing to say my son is NOT celiac because they have not done enough celiac gene research to know that they have found ALL of the genes responsible for causing the disease. I trust Enterolab and I also hope that someday Dr. Fine's tests and research are accepted as not only a reliable way to test, but one of the best methods of testing. It is much easier and more sensitive than blood testing and biopsy. It is certainly better for children, who are often difficult to get blood from and are more likely to have false negative blood tests. I am glad we used them and I am very happy with the results and our good health on the diet. God bless, nn myhummingbird2002 wrote: I had to use Enterolab to get a diagnosis because I had been off gluten a year before I being tested. Blood test and biopsy were negative, although I now know my GI only took one biopsy sample. They are supposed to take at least six. I am happy to have my gluten sensitivity diagnosis because it is better than nothing. It is bittersweet, though, because it is not generally recognized by medical professionals, and has led to many tears while leaving doctors' offices. I feel like a "second-class" celiac, if you will. I don't have a GI to consult, like other celiacs. I am basically a patient without a doctor. My current family doctor doesn't even know of my condition, because I refuse to be treated like I'm crazy again. It's insane that I'm afraid to tell my doctor I'm sick. I just see him for minor things. There are so many drawbacks to this diagnosis, but at least it's available, and maybe someday all the work Dr. Fine is doing will be recognized for what it is: PROOF of a life-threatening illness! The upside to my diagnosis is my family members now are slowly starting to get tested. You can't argue with a gene test. I could go on and on, but I honestly don't know if I should. I rarely see Enterolab come up in these posts, and when it does, it seems like very few people, if any, reply. I finally decided to add my two-cents worth today to see if there of others who used Enterolab. Anybody out there? Audrey > Hi, Everyone, > I have another question. Actually a few. Has anyone used the stool test from > Enterolabs to diagnose gluten sensitivity? Also, have you used any of the > other tests besides the gene test I hear about? From my thinking (and it > could be flawed) I would rather have a definite gliadin presence in the > stool than wonder if I am in the 81% of the population that might get > celiac. The real reason I am asking though is that my 2nd son tested > negative on the blood test but showed classic symptoms, i.e. B12 deficiency > anemia, malnutrition, lymphopenia, fell half of the growth chart in one > year, diarrhea, stomach aches, rash, it goes on. I don't need a formal > diagnosis for him to know that he is not doing gluten in any form. But now > my 15 month old is anemic, irritable and has never had a formed stool (but > doesn't have chronic diarrhea). He's slimmed down and dropped from 85% in > height to 60%. He's wheat free but not gluten free. He has also started the > night wakings. Wouldn't it be better to do a stool test on him? I also have > a 6 year old with no symptoms other than a very fine rash that looks like > goose bumps in a few places. I noticed that they clear up when he's been off > wheat for a while. If I do a gene test and he's potentially celiac and I > stop him from consuming gluten, and then he gets into it at a friend's house > or school is he more likely to have an autoimmune response? Am I being > paranoid? This is fairly new to us. (And to complicate things the biochemist > said food allergies-which my middle son has-- can mimic celiac > symptoms---AUGHHH!) > > > Marcie Concepcion Quote Link to comment Share on other sites More sharing options...
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