Guest guest Posted August 8, 2004 Report Share Posted August 8, 2004 Holly, From what I have seen, many biopsies are inconclusive because the people reading them are not familiar with the nuances of celiac disease. You can always ask for your daughter's slides and send them to Dr. Fasano at University of land for a second opinion. That might put your mind at ease. The other part of diagnosis is that if your daughter improves on the GF diet and it sounds like she is improving. With high readings on the blood tests and improvement on the diet along with the inconclusive biopsies, sure sounds like she is celiac. I think I would send the biopsies for a second opinion if it were me. Good luck, Barbara Disclaimer --- I am a volunteer and not a medical expert, but I can share with you information that I have found helpful. Please contact your medical professional for medical advice regarding your situation. Please verify the gluten free status of products often for your own protection. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2004 Report Share Posted August 8, 2004 Holly, From what I have seen, many biopsies are inconclusive because the people reading them are not familiar with the nuances of celiac disease. You can always ask for your daughter's slides and send them to Dr. Fasano at University of land for a second opinion. That might put your mind at ease. The other part of diagnosis is that if your daughter improves on the GF diet and it sounds like she is improving. With high readings on the blood tests and improvement on the diet along with the inconclusive biopsies, sure sounds like she is celiac. I think I would send the biopsies for a second opinion if it were me. Good luck, Barbara Disclaimer --- I am a volunteer and not a medical expert, but I can share with you information that I have found helpful. Please contact your medical professional for medical advice regarding your situation. Please verify the gluten free status of products often for your own protection. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2004 Report Share Posted August 8, 2004 Holly, I'm puzzled why your daughter's biopsy is inconclusive when she had flattened villi. If you want a second opinion on the biopsy report, Green, M.D., Columbia University, is one of the top celiac specialists in the country. His celiac disease center will do a second/consultative opinion on celiac biopsy pathology reports. I think you call to set up one with Dr. Heidi Rotterdam of the Surgical Pathology Department of Columbia University. http://www.celiacdiseasecenter.columbia.edu/E_About/E02-pPurpose.htm Jo Anne Correct Diagnosis? I am new to the whole Celiac world since my daughter was diagnosedwith Celiac Disease in March 2004 and not sure if our diagnosis iscorrect.She was born with bladder reflux and a blockage in one kidney and wasput on daily antibiotics to prevent UTI. After going through twodoctors she finally had a two procedures that were to correct it thatdidn't work. Now she is off the antibiotics and started getting sickin October and never really got better until March and we got thediagnosis. She was on a very high dose of antibiotic for severalmonths before her first procedure and I have wondered if this hascaused the Celiac Disease?The reason I have questions on the diagnosis is that her blood testcame back very high and our Family Doctor was 80% convinced that itwas Celiac Disease so he sent us on to a GI who did the biopsies onher. The biopsies came back inconclusive but he saw her villi wereflattened. She has done better since being on the Glutten Free Dietand has grown. We have also added Pediasure into her diet at thattime as well until we get her up to her appropriate weight and gether diet on track.Is it possible her diagnosis is wrong and that we are treating thewrong problem or is this common to have the biopsies come backinconclusive?The GI we saw did not leave us with a whole lot of information andwith out giving us any notice has left the area. He wanted us tofollow up with him down the road to try to get a conclusive diagnosisbut never gave us any time frame.After reading some of the other testimonies we found our story beingrepeated over and over too with her not doing well and having thesymptoms. Our only concern is the inconclusive biopsies.Thank you for any help anyone can give us. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2004 Report Share Posted August 8, 2004 Barbara, I have read that Dr. Fasano is not doing second opinions on biopsies any more. Green, M.D., of Columbia University, is. I think you call to set up one with Dr. Heidi Rotterdam of the Surgical Pathology Department of Columbia University. http://www.celiacdiseasecenter.columbia.edu/E_About/E02-pPurpose.htm Jo Anne Re: Correct Diagnosis? Holly, From what I have seen, many biopsies are inconclusive because the people reading them are not familiar with the nuances of celiac disease. You can always ask for your daughter's slides and send them to Dr. Fasano at University of land for a second opinion. That might put your mind at ease. The other part of diagnosis is that if your daughter improves on the GF diet and it sounds like she is improving. With high readings on the blood tests and improvement on the diet along with the inconclusive biopsies, sure sounds like she is celiac. I think I would send the biopsies for a second opinion if it were me. Good luck, Barbara Disclaimer --- I am a volunteer and not a medical expert, but I can share with you information that I have found helpful. Please contact your medical professional for medical advice regarding your situation. Please verify the gluten free status of products often for your own protection. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2004 Report Share Posted August 9, 2004 Dr. Fasano is still doing second opinions. He was out of the country for a few weeks, so he was backed up, but he's still taking them. Unfortunatly, if the biopsy/ slides weren't done well, even he might not be able to help. Amy > Barbara, I have read that Dr. Fasano is not doing second opinions on biopsies any more. Green, M.D., of Columbia University, is. I think you call to set up one with Dr. Heidi Rotterdam of the Surgical Pathology Department of Columbia University. > http://www.celiacdiseasecenter.columbia.edu/E_About/E02-pPurpose.htm > > Jo Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2004 Report Share Posted August 9, 2004 Dr. Fasano is still doing second opinions. He was out of the country for a few weeks, so he was backed up, but he's still taking them. Unfortunatly, if the biopsy/ slides weren't done well, even he might not be able to help. Amy > Barbara, I have read that Dr. Fasano is not doing second opinions on biopsies any more. Green, M.D., of Columbia University, is. I think you call to set up one with Dr. Heidi Rotterdam of the Surgical Pathology Department of Columbia University. > http://www.celiacdiseasecenter.columbia.edu/E_About/E02-pPurpose.htm > > Jo Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2004 Report Share Posted August 9, 2004 Dr. Fasano is still doing second opinions. He was out of the country for a few weeks, so he was backed up, but he's still taking them. Unfortunatly, if the biopsy/ slides weren't done well, even he might not be able to help. Amy > Barbara, I have read that Dr. Fasano is not doing second opinions on biopsies any more. Green, M.D., of Columbia University, is. I think you call to set up one with Dr. Heidi Rotterdam of the Surgical Pathology Department of Columbia University. > http://www.celiacdiseasecenter.columbia.edu/E_About/E02-pPurpose.htm > > Jo Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2004 Report Share Posted August 9, 2004 Along these lines, I have a question for you. My son was diagnosed as having "high gluten and cassein sensitivity" about 4 weeks ago. The pediatrician ( a holistic dr I LOVE!!!!) thought that the gastro dr wouldn't want to do a biopsy because the numbers weren't freakishly high, but that they were high enough for the daignosis of sensitivity. Through lots of on-line research, it seems that sensitivity to gluten is only ever a celiac issue. A person can be wheat allergic, but not celiac. But a person can't just be intolerant to gluten without having CD. Is that the case? Furthermore, after removing gluten and milk COMPLETELY from his diet, he has soft skin for the first time in his life. He doesn't need the steroids anymore on his hands, arms, legs, etc. Also, he is off ritalin and behaving very calm. His stools are firming up, and his stomach is no longer hard and distended. He's gained 2 pounds already. I know this diet is helping him. Is there any need to ask for a biopsy anyway? And can they even do it now that he's been gluten free for 4 weeks? Any input would be great! Thanks, Becki in N Florida Correct Diagnosis? I am new to the whole Celiac world since my daughter was diagnosedwith Celiac Disease in March 2004 and not sure if our diagnosis iscorrect.She was born with bladder reflux and a blockage in one kidney and wasput on daily antibiotics to prevent UTI. After going through twodoctors she finally had a two procedures that were to correct it thatdidn't work. Now she is off the antibiotics and started getting sickin October and never really got better until March and we got thediagnosis. She was on a very high dose of antibiotic for severalmonths before her first procedure and I have wondered if this hascaused the Celiac Disease?The reason I have questions on the diagnosis is that her blood testcame back very high and our Family Doctor was 80% convinced that itwas Celiac Disease so he sent us on to a GI who did the biopsies onher. The biopsies came back inconclusive but he saw her villi wereflattened. She has done better since being on the Glutten Free Dietand has grown. We have also added Pediasure into her diet at thattime as well until we get her up to her appropriate weight and gether diet on track.Is it possible her diagnosis is wrong and that we are treating thewrong problem or is this common to have the biopsies come backinconclusive?The GI we saw did not leave us with a whole lot of information andwith out giving us any notice has left the area. He wanted us tofollow up with him down the road to try to get a conclusive diagnosisbut never gave us any time frame.After reading some of the other testimonies we found our story beingrepeated over and over too with her not doing well and having thesymptoms. Our only concern is the inconclusive biopsies.Thank you for any help anyone can give us. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 Hi Becki, My son had similar symptoms nine years ago. After his blood work was done, I stopped buying foods with gluten. As the amount of gluten in his diet went down, he began to improve. His blood tests came back only borderline but he had improved so much that the doctor considered it a diagnosis and opted not to do any further testing on him. After all, the symptoms we were trying to get rid of were gone. Why put a two year old through a biopsy when we had already found the treatment that worked? in S. Florida (Jupiter) Becki wrote: Along these lines, I have a question for you. My son was diagnosed as having "high gluten and cassein sensitivity" about 4 weeks ago. The pediatrician ( a holistic dr I LOVE!!!!) thought that the gastro dr wouldn't want to do a biopsy because the numbers weren't freakishly high, but that they were high enough for the daignosis of sensitivity. Through lots of on-line research, it seems that sensitivity to gluten is only ever a celiac issue. A person can be wheat allergic, but not celiac. But a person can't just be intolerant to gluten without having CD. Is that the case? Furthermore, after removing gluten and milk COMPLETELY from his diet, he has soft skin for the first time in his life. He doesn't need the steroids anymore on his hands, arms, legs, etc. Also, he is off ritalin and behaving very calm. His stools are firming up, and his stomach is no longer hard and distended. He's gained 2 pounds already. I know this diet is helping him. Is there any need to ask for a biopsy anyway? And can they even do it now that he's been gluten free for 4 weeks? Any input would be great! Thanks, Becki in N Florida Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 Hi Becki, My son had similar symptoms nine years ago. After his blood work was done, I stopped buying foods with gluten. As the amount of gluten in his diet went down, he began to improve. His blood tests came back only borderline but he had improved so much that the doctor considered it a diagnosis and opted not to do any further testing on him. After all, the symptoms we were trying to get rid of were gone. Why put a two year old through a biopsy when we had already found the treatment that worked? in S. Florida (Jupiter) Becki wrote: Along these lines, I have a question for you. My son was diagnosed as having "high gluten and cassein sensitivity" about 4 weeks ago. The pediatrician ( a holistic dr I LOVE!!!!) thought that the gastro dr wouldn't want to do a biopsy because the numbers weren't freakishly high, but that they were high enough for the daignosis of sensitivity. Through lots of on-line research, it seems that sensitivity to gluten is only ever a celiac issue. A person can be wheat allergic, but not celiac. But a person can't just be intolerant to gluten without having CD. Is that the case? Furthermore, after removing gluten and milk COMPLETELY from his diet, he has soft skin for the first time in his life. He doesn't need the steroids anymore on his hands, arms, legs, etc. Also, he is off ritalin and behaving very calm. His stools are firming up, and his stomach is no longer hard and distended. He's gained 2 pounds already. I know this diet is helping him. Is there any need to ask for a biopsy anyway? And can they even do it now that he's been gluten free for 4 weeks? Any input would be great! Thanks, Becki in N Florida Quote Link to comment Share on other sites More sharing options...
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