Guest guest Posted June 27, 2006 Report Share Posted June 27, 2006 We got the results of the biopsy today. He took 4 biopsies and she is negative for celiacs. Now we have to start all over to figure out what is causing her problems. He thinks it is IBS. He wants her to make a food and symptom diary so we can narrow it down. Thanks for all your help and support. Zanna http://groups.yahoo.com/group/Art_on_A_Budget/ My daily rantings! www.zannasstory.blogspot.com My picture trail: www.picturetrail.com/xanadoodles Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2006 Report Share Posted June 27, 2006 It's hard to believe that with only 4 samples he was able to get all three regions of the small intestine. Many docs only do the area right where the stomach attaches - which won't show damage until the disease is pretty well progressed. Did he do all four antibody tests? Were they positive? How does she respond to the GF diet? All of these should be considered in ruling in or out CD. Remember - " IBS " ONLY means that the cause has not yet been determined for the symptoms, it is NOT a disease or end-diagnosis (unless you are happy taking drugs and being miserable, in which case most docs are happy to stop there). > -----Original Message----- > > > We got the results of the biopsy today. He took 4 biopsies and > she is negative for celiacs. Now we have to start all over to > figure out what is causing her problems. He thinks it is IBS. --- [This E-mail scanned for viruses by Declude Virus] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2006 Report Share Posted June 27, 2006 It's hard to believe that with only 4 samples he was able to get all three regions of the small intestine. Many docs only do the area right where the stomach attaches - which won't show damage until the disease is pretty well progressed. Did he do all four antibody tests? Were they positive? How does she respond to the GF diet? All of these should be considered in ruling in or out CD. Remember - " IBS " ONLY means that the cause has not yet been determined for the symptoms, it is NOT a disease or end-diagnosis (unless you are happy taking drugs and being miserable, in which case most docs are happy to stop there). > -----Original Message----- > > > We got the results of the biopsy today. He took 4 biopsies and > she is negative for celiacs. Now we have to start all over to > figure out what is causing her problems. He thinks it is IBS. --- [This E-mail scanned for viruses by Declude Virus] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2006 Report Share Posted June 27, 2006 It's hard to believe that with only 4 samples he was able to get all three regions of the small intestine. Many docs only do the area right where the stomach attaches - which won't show damage until the disease is pretty well progressed. Did he do all four antibody tests? Were they positive? How does she respond to the GF diet? All of these should be considered in ruling in or out CD. Remember - " IBS " ONLY means that the cause has not yet been determined for the symptoms, it is NOT a disease or end-diagnosis (unless you are happy taking drugs and being miserable, in which case most docs are happy to stop there). > -----Original Message----- > > > We got the results of the biopsy today. He took 4 biopsies and > she is negative for celiacs. Now we have to start all over to > figure out what is causing her problems. He thinks it is IBS. --- [This E-mail scanned for viruses by Declude Virus] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2006 Report Share Posted June 27, 2006 Zanna, I'm with Esther on this one--our daughter also had a negative biopsy. She is one of the non-celiac gluten intolerant people. She has 1 gene marker FOR celiac...so she is " predisposed " to celiac & it's troubles. We were told the endoscopy was the gold standard but the gene testing was the platinum standard. Has your daughter had the gene testing done? Doesn't matter if you've already gone gluten free for this test. Hope you find the " trouble " & get a solution. Laurel > > May I bust your bubble? > A negative biopsy only means a negative biopsy. > It does not mean " no celiac " . > I had a negative biopsy. > Potential reasons for negative biopsy when there IS celiac: > - very beginning stages of celiac, very little atrophy > - patchy celiac, and the biopsy samples " missed " > - very low in the small intestine celiac, and endoscopy did not > reach it. > > Also, there is non-celiac gluten intolerance. > > > I was sick for SO long. When I started seeing lots of blood > where one should NEVER see blood, that is when I freaked and > finally succumbed to colonoscopy and endoscopy. Meanwhile, blood > tests revealed high transglutaminase. No other value on my panel > was high. > > Biopsy negative. Sent out for second opinion. Still negative. > > Suspect patchy or low celiac. > > Started GF diet. > > Endure Small Bowel Follow Through test to look for patchy or > low in the small intestine celiac. Found neither. The SBFT > was after 2 months of GF eating. (Could have been negative > because of that.) > > I am still diagnosed celiac, even though they can't " see " it. > > And, nowadays, I'm fine with that. I feel SO MUCH BETTER as > a GFer than as a glutenoid, words cannot compare. Words totally > fail me how much better I feel as a GFer. I can't believe how > much pain I lived with in the glutenoid days. Yikes. Just a > small glutening is enough of a reminder for me, thank you very > much! I was miserable ALL THE TIME, with no answers forthcoming. > > Oh, we tried donnatal, pepto bismol, high fiber, low fiber, > no nuts, no grease, no milk. Had Upper GI, Lower GI, sigmoidoscopy, > gall bladder ultrasound, gall bladder hormone test... All for > no improvement. I had been tested and cultured for every bacteria, > virus, and parasite known to human kind. NO IMPROVEMENT. > > And then finally - FINALLY! - the nurse practioner said " With > transglutaminase that high, why don't you just try GF eating > and see if it helps. " And so I did. And so it did! Wow. In DAYS, > DAYS (!! I TELL YOU !!), I was feeling WORLDS better. > > Can't imagine going back. > > An amount of gluten so small that I can't even tell you where it's > hidden, let alone enjoy it, is enough to make me way too sick. > I can't imagine willingly eating gluten these days. > > And believe me, for me, this is a BIG change. > > Esther > > ps - is she doing better on the GF diet? Or have you not tried it? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2006 Report Share Posted June 27, 2006 Her blood tests and stool samples were all normal except for the genetic marker for celiac. That was the only one that was positive. She ate gluten right up until her biopsy too. Zanna http://groups.yahoo.com/group/Art_on_A_Budget/ My daily rantings! www.zannasstory.blogspot.com My picture trail: www.picturetrail.com/xanadoodles Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2006 Report Share Posted June 27, 2006 Actually, I am not happy with this dx. I am still sure that this is what is causing her problems. She did test positive for the genetic marker for celiac. He said her villi were not only there, they were larger than normal. I am so confused. She has EVERY symptom. It would just make sense to me. Zanna http://groups.yahoo.com/group/Art_on_A_Budget/ My daily rantings! www.zannasstory.blogspot.com My picture trail: www.picturetrail.com/xanadoodles Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2006 Report Share Posted June 27, 2006 Actually, I am not happy with this dx. I am still sure that this is what is causing her problems. She did test positive for the genetic marker for celiac. He said her villi were not only there, they were larger than normal. I am so confused. She has EVERY symptom. It would just make sense to me. Zanna http://groups.yahoo.com/group/Art_on_A_Budget/ My daily rantings! www.zannasstory.blogspot.com My picture trail: www.picturetrail.com/xanadoodles Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2006 Report Share Posted June 27, 2006 Zanna, Get a copy of both the procedure note and the pathology report and read it for yourself. Do not just take their word for it. Especially if celiac makes sense to you. In our family.......... DD had a negative biopsy, but the dumb GI doc only took 3 samples and took them from where the stomach dumps into the small intestine. I didn't believe it. Celiac really made sense - not just for her, but for me, our son, and for several other family members. It turns out that it was not a good sampling. I know, because I hunted on the internet for how the biopsy SHOULD be done. First Principles of Gastroenterology states that a biopsy looking for celiac should be at least 6 samples, (preferably more like 12) and should be taken from the distal (distant) end of the duodenum or even into the jejunum. He didn't do that; I am sure in part because he didn't believe she could have it. He flat out told me it was impossible because I was overweight and that she needed to get the gene from both parents and therefore..... no way. According to pathology, she had chronic gastritis -- at 6 yrs old. When we went to GI#2 I was prepared. I questioned the # of samples and from where they were taken. I questioned why gastritis did not explain half of her symptoms. I questioned why so many people in our family had such similar problems if it was only gastritis. All excellent questions and I was correct in that the first GI did not answer them appropriately (actually not at all). Celiac was what made sense according to her symptoms and history. She also had a +IgG. He prescribed the GF diet. Within days she felt better and lost most of her symptoms. At the 6 week follow up, she had gained as much weight as she had in the previous 3 years. He labeled her celiac. I should add that lymphocytic gastritis has shown a link to celiac. With her brother, his biopsy read negative but again not very many samples taken. But the diet has helped him in several ways. He is labeled gluten intolerant. However, just a couple of months ago, I noticed something on the pictures of the biopsy that I had never noticed before. In a normal biopsy, there are supposed to be at least 3 skin folds in each visual field. His had not a one in any field. I found this right before our move, so I still need to ask about it. I am very curious about it. I do wonder if it will puch him across the line from " intolerant " to " celiac " . I have also read studies that show that the type of microscope used can make a big difference as to the outcome also. Biopsies that appeared normal under a regular scope showed obvious signs of damage when viewed under higher powered microscope. At any rate, there can be a great many places where testing can get screwed up. Look at the reports yourself and make certain that they did what should have been done and looked for what they should be looking for. If the pathologist was not well knowledgable in celiac, they could easily have missed it and read it as normal. Look for the clues that something was missed. Ask for a second or third opinion if you need to. You can also have the slides sent to another lab for reading if you are unsure if they read it correctly. And ask any questions to the group. There is a lot of knowledge and experience here! Hope it helps! Cheryl in MN Cheryl rxp_us@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2006 Report Share Posted June 27, 2006 Zanna, Get a copy of both the procedure note and the pathology report and read it for yourself. Do not just take their word for it. Especially if celiac makes sense to you. In our family.......... DD had a negative biopsy, but the dumb GI doc only took 3 samples and took them from where the stomach dumps into the small intestine. I didn't believe it. Celiac really made sense - not just for her, but for me, our son, and for several other family members. It turns out that it was not a good sampling. I know, because I hunted on the internet for how the biopsy SHOULD be done. First Principles of Gastroenterology states that a biopsy looking for celiac should be at least 6 samples, (preferably more like 12) and should be taken from the distal (distant) end of the duodenum or even into the jejunum. He didn't do that; I am sure in part because he didn't believe she could have it. He flat out told me it was impossible because I was overweight and that she needed to get the gene from both parents and therefore..... no way. According to pathology, she had chronic gastritis -- at 6 yrs old. When we went to GI#2 I was prepared. I questioned the # of samples and from where they were taken. I questioned why gastritis did not explain half of her symptoms. I questioned why so many people in our family had such similar problems if it was only gastritis. All excellent questions and I was correct in that the first GI did not answer them appropriately (actually not at all). Celiac was what made sense according to her symptoms and history. She also had a +IgG. He prescribed the GF diet. Within days she felt better and lost most of her symptoms. At the 6 week follow up, she had gained as much weight as she had in the previous 3 years. He labeled her celiac. I should add that lymphocytic gastritis has shown a link to celiac. With her brother, his biopsy read negative but again not very many samples taken. But the diet has helped him in several ways. He is labeled gluten intolerant. However, just a couple of months ago, I noticed something on the pictures of the biopsy that I had never noticed before. In a normal biopsy, there are supposed to be at least 3 skin folds in each visual field. His had not a one in any field. I found this right before our move, so I still need to ask about it. I am very curious about it. I do wonder if it will puch him across the line from " intolerant " to " celiac " . I have also read studies that show that the type of microscope used can make a big difference as to the outcome also. Biopsies that appeared normal under a regular scope showed obvious signs of damage when viewed under higher powered microscope. At any rate, there can be a great many places where testing can get screwed up. Look at the reports yourself and make certain that they did what should have been done and looked for what they should be looking for. If the pathologist was not well knowledgable in celiac, they could easily have missed it and read it as normal. Look for the clues that something was missed. Ask for a second or third opinion if you need to. You can also have the slides sent to another lab for reading if you are unsure if they read it correctly. And ask any questions to the group. There is a lot of knowledge and experience here! Hope it helps! Cheryl in MN Cheryl rxp_us@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2006 Report Share Posted June 27, 2006 Zanna, Get a copy of both the procedure note and the pathology report and read it for yourself. Do not just take their word for it. Especially if celiac makes sense to you. In our family.......... DD had a negative biopsy, but the dumb GI doc only took 3 samples and took them from where the stomach dumps into the small intestine. I didn't believe it. Celiac really made sense - not just for her, but for me, our son, and for several other family members. It turns out that it was not a good sampling. I know, because I hunted on the internet for how the biopsy SHOULD be done. First Principles of Gastroenterology states that a biopsy looking for celiac should be at least 6 samples, (preferably more like 12) and should be taken from the distal (distant) end of the duodenum or even into the jejunum. He didn't do that; I am sure in part because he didn't believe she could have it. He flat out told me it was impossible because I was overweight and that she needed to get the gene from both parents and therefore..... no way. According to pathology, she had chronic gastritis -- at 6 yrs old. When we went to GI#2 I was prepared. I questioned the # of samples and from where they were taken. I questioned why gastritis did not explain half of her symptoms. I questioned why so many people in our family had such similar problems if it was only gastritis. All excellent questions and I was correct in that the first GI did not answer them appropriately (actually not at all). Celiac was what made sense according to her symptoms and history. She also had a +IgG. He prescribed the GF diet. Within days she felt better and lost most of her symptoms. At the 6 week follow up, she had gained as much weight as she had in the previous 3 years. He labeled her celiac. I should add that lymphocytic gastritis has shown a link to celiac. With her brother, his biopsy read negative but again not very many samples taken. But the diet has helped him in several ways. He is labeled gluten intolerant. However, just a couple of months ago, I noticed something on the pictures of the biopsy that I had never noticed before. In a normal biopsy, there are supposed to be at least 3 skin folds in each visual field. His had not a one in any field. I found this right before our move, so I still need to ask about it. I am very curious about it. I do wonder if it will puch him across the line from " intolerant " to " celiac " . I have also read studies that show that the type of microscope used can make a big difference as to the outcome also. Biopsies that appeared normal under a regular scope showed obvious signs of damage when viewed under higher powered microscope. At any rate, there can be a great many places where testing can get screwed up. Look at the reports yourself and make certain that they did what should have been done and looked for what they should be looking for. If the pathologist was not well knowledgable in celiac, they could easily have missed it and read it as normal. Look for the clues that something was missed. Ask for a second or third opinion if you need to. You can also have the slides sent to another lab for reading if you are unsure if they read it correctly. And ask any questions to the group. There is a lot of knowledge and experience here! Hope it helps! Cheryl in MN Cheryl rxp_us@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2006 Report Share Posted June 28, 2006 Zanna, I agree 100% with Esther and the group. A neg biopsy or blood tests can be decieving. I had several negative bloods before hitting the positve for the TgG & HLA(?) Cant remember now.... Drs here have my records to see if I can get the food subsidy without having to glutaminate myself. (which I wont do) anyway... same happened to a friend who was undergoing testing same time I was. She was TERRIBLY sick, everything was negative. Went GF and end of problems. I was telling DH today, If I belived every diagnosis I have gotten from Drs, I would be dead long ago! cancer, Hepatitus, (my Hep is now 28 years old and an IT department head at Ford Motor company) kidney failure,(she is 23 and a design school student) acute heavy metal poisioning, you wouldnt believe some of the "diagnosis"! One Dr tried to put me on steroids, said that would help. Another said I was prone to chronic infections... all of it was crap. So, spent 30 years in varying states of illness. Now, only problems other than Celiac is the gratuitius seasonal allergies. Even my SUPPOSED "osteo arthritis" disapeared. If she feels good GF, then by all means stay GF! No sence in getting sicker. Dont jump the gun and belive everything the supposed good dr says... Best! Cassi Gluten free in downtown Imatra! Quote Link to comment Share on other sites More sharing options...
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