<<Disclaimer: Verify this information before applying it to your situation.>> Thanks to all who replied to my question about having a biopsy re-read. I included the whole text rather than snipping bits, as each says something a little different and it will all be of interest to someone questioning biopsy results. Carma in Phoenix ------------- THE QUESTION: ------------- I had a biopsy done by my HMO doc a couple of months ago and he reported to me that it was clean. What is the possibility of having it read a second time by someone who is more experienced in reading for CD? How could I find someone who would do that, and how much would it cost? Also, if it is possible, how would I go about getting a copy of the slides from my doc? --------------- THE REPSPONSES: --------------- just ask your dr for them either to borrow or a copy. THEY MUST GIVE IT TO YOU! --------------- I asked for a copy of the biopsy report from my doctor. He told me it was a low positive for celiac and to stay on a low gluten diet. I brought the report to a second doctor who said it was neg. He had me start eating foods with gluten and did a second biopsy. I was only back on gluten for less than a week (not enough time). Of course that biopsy came out neg. I then brought the original biopsy to a 3rd doctor and he said it was positive. Now for your question. You would want to go to a Gastroenterolgist in your HMO group. This way it should not cost you anything more than a co-payment. I would just call your doctors office and ask for a copy of your biopsy. You or your ins company paid for it so you have the right to have it. If you feel you need the slides you would have to get them from the hospital where it was done. I would wait on that until after you have brought the biopsy report to another doc. --------------- I agree that having a doctor more experienced in CD read the biopsy slides is a good idea. I'm about to make similar arrangements. Such readings are not just black and white, but often grade the condition of the intestine for celiac damage. Hence also good for follow-up biopsies after going GF. Doctors should be accustomed to requests for a "second opinion": I suspect they have to send the original slides and hence would want to do that themselves, doctor to doctor. --------------- Carma, as my gastroenterologist explained it to me, those biopsies are not hard to read, since either the cilia are flattened or they are not. But if you were on a gluten free, or partially gluten free, diet prior to the biopsy, it might fail to show any such damage. Also if the doc who did your taking and reading of the biopsy wasn't a gastroenterologist, I wouldn't hesitate to have a second reading, or even second test. I wonder why you are convinced that you have celiac in spite of the negative biopsy. You could easily have a WROB (wheat etc) intolerance, or any other intolerance, that can act very much like celiac, but simply doesn't damage the gut the way celiac does. The mild symptoms are irritable bowel syndrome and gas. Good luck. If you want the stuff sent to another doc, just have him or her ask your present doc to send it. I think they legally have to do so; your records belong to you. --------------- You can always get a second opinion. Unfortunately it doesn't mean that your insurance will pick it up, but you can always get one. If you just have them read the other doctor's results I don't have any idea what it will cost. But if you have the biopsy done over, I know that the Mayo Clinice will do it for around $1000, that includes the biopsy plus the doctor (at least 4 years ago) I know for a fact that they sent my bloodwork back to the original Mayo clinic rather than have it done here with any of the labs so that it would by done by a specialist. That cost around $400 and was not in the figure I just gave you. They may have changed this since they just recently opened their own hospital in Scottsdale. I know of another physician here in the Ahwatukee area, and she is familiar with celiac sprue. I am somewhat sure she would be cheaper, but I can't verify the quality of the hospital and lab that she uses. You can get into either place without references. My money is always on the Mayo Clinic because of the quality of their lab work and the expertise of the physicians. Everyone sticks to a generalized area, example the orthopedic doctors are divided into foot and ankles, legs, shoulder, spines, etc. You get the picture. In other words the work they confine themselves to being more of a specialist. Therefore more experienced than most doctors (not always true, but generally) Your physician by law is required to give you the x-rays or at least copies and copies of all records. I had this done a couple of times to take out to the Mayo Clinic with me. I tried for the original and promised to return them. This has always worked for me. --------------- the ususal proceedure in the US for a biopsy is for the doctor who obtains the specimen to send it to to a pathologist for interpretation. The pathologist then sends his report to your doctor who passes it on to you. The pathologist may be on the staff of the local hospital or he may be at a distant medical center. So you can ask your doctor's office for a copy of the report and that should be easy assuming you have paid your bills. Legally it is your report, not the doctor's. Specimens are kept for several years at the pathologist's lab. You or more likely your new doctor can get the specimen or slides made from it by making a formal (and legal) request- the pathologist being legally responsible for that bit of tissue in his safekeeping. Then the tissue can be re examined for independent confirmation, the cost being probably about $100 assuming no new slides need to be made. Good luck. Most likely your gut had healed itself by the time the biopsy was taken. --------------- My suggestion is to call Dr Fasano at the Celiac Research Center at the University of Maryland or Dr. Joseph Murray at Mayo Clinic. they are both very interested in Celiac Disease and would be able to tell you if your first test was done by a lab who is capable of reading the results. (have the results in front of you if possible). A good gastroenterologist should be able to send the specimen to whatever lab you designate. I hope this helps and good luck in you search for an answer. --------------- A couple of things to consider. Did the GI DR take sufficient number of samples and from the right places? I had my bx re read as I didn't believe it was positive. You simply ask the hospital to send it to the pathologist-often you need to sign a release. Dr. Murray suggested on this list that I send it to the University of Iowa where he used to be. The second reading cost me $100. He is now at the Mayo clinic in Minnesota. --------------- I have no idea, but my biopsy (hmo) was also negative. It was after 2 months gf, it's true, but I have to be as careful about gluten as any celiac. The doctor told me that a pathologist reads all slides. If they see anything even slightly questionable, they have it read by another pathologist. Still, (my opinion, not the doc) if they aren't particularly educated about the non- standard or less obvious effects of celiac, they could easily miss it from what I've read here. I didn't pursue it further because I figure I have celiac but it wasn't diagnosed for some reason. Perhaps it is to my advantage to have an official rule-out, in case I have to apply for insurance of any kind. They can't exclude from coverage all the possible related problems. (My son is biopsy- diagnosed, so I know the genetic element is in my make-up.) --------------- We had this done for our daughter, but it was at the request of our new dr. He asked us to obtain the slides from our daughter's first biopsy, which was a couple of years ago. I called the hospital where the first biopsy was done, asked for "medical records," and asked what the procedure was for obtaining the slides. They loaned them to me, and the new dr. told me where to send them, and I had him return them to the original facility. So, once you have located a new dr., you could initiate that procedure. I didn't pay anything, except I had to get the slides from the University of Chicago and pack and ship them to the Mayo Clinic. A pathologist is the dr. who actually "reads" the slides. They make a written report which you should also request every time you have a biopsy, so you can see exactly what they are saying. ---------------