<<Disclaimer: Verify this information before applying it to your situation.>> Dear listmates, Sorry, I didn't summarize earlier but I took a down turn this week trying to prepare for the Given capsule endoscopy; I was chosen to be one of 10 people in a study of malabsorption syndrome. The capsule was like a large vitamin which I took with water; it looked like space age technology because it had a tiny lens with four blinking lights. I had to wear eight sensors on my abdomen, a battery pack, and a recorder with a blinking light. The capsule took pictures at the rate of 2 per second over 8 hours of the study which my doctor, in elation, said that he now has over 56,000 pictures to look at like a video. The capsule passed my entire GI tract in 11 hours since I was able to see it still blinking. By the way, this time the doctor didn't ask me to eat gluten since the 12 endoscopic biopsies taken in Dec. already came out negative for "blunted villi" and H. pylori bacteria. I will await what he says about all the abnormalities he's seen including now, the capsule endoscopy. The capsule preparation was grueling because the doctor requested that I fast for 45 hours in order to maximize the study that required at a minimum to fast of only 8 hours. He said that if you want to maximize the yield, you have to take the magnesium citrate (laxative to clear bowels). He then could view not just my stomach and small intestines (duodenum and jejunum) but my colon as well. I figured that if I can avoid a colonoscopy, I would then "kill two birds with one stone." He compared the preparation I had to make to his description to taking the three gluten challenges as "maximizing the yield" or maximizing the results of the tests; When preparing for the tests, i.e., fecal fat and endoscopy over Nov. and Dec., he asked me to make the bad stools because he said that he needed "complete damage" in order to diagnose celiac. As you know, he saw many abnormalities but the pathologists didn't find the "blunted villi"; However, the doctor has been able to rule out many other diseases already with the tests thus far. My husband who is an immunologist / research doctor argued, Why does she have to eat gluten even if it is celiac disease because if you find it to be something else, she doesn't need to eat gluten for that purpose. If it is celiac and she does better off of gluten, then it is celiac if you don't find anything else to be responsible for the cause of her symptoms. Well, I believe now that my husband was right and that my quest to get celiacs diagnosed has been at the expense of my own health. I am taking even longer now to feel better and I've been having heart trouble since the last 3rd gluten challenge; my stamina can be fleeing. Yesterday, I took my echocardiogram to check my mitral valve and left ventricle; The examiner saw something wrong and called the cardiologist who asked her to continue the exam with some non-routine procedures. Since I'm low weight, the hard ball wand used on my chest to view my heart was painful on my ribs and I was shaking from the pain. Now, I have to think something else could be wrong with me. And in fact, I think I "might" even have a pancreatic problem as I've been reading about my newly chronic symptom of upper right side abdominal pain that can go around to my back. Whenever I eat fat or meat, I notice the pain flare up. I did some reading of the Merck Manual (www.Merck.com) and site for the NIDDK (National Digestive Diseases Information Clearinghouse), www.niddk.nih.gov., regarding pancreatitis and malabsorption. In a CSA Lifeline article dated Summer 2000, I read about the celiac story of Monica Shepherd who had an attack of pancreatitis a year after being diagnosed and her symptoms mirror mine. I coincidentally read that treatment can involve prescribed digestive enzymes and eating smaller meals which are high in carbohydrates and low in fat; Since the diet is further restricted, vitamin supplements may be added. I also read that this treatment can allow a patient to gain weight. After a symptomatic bout a day before fasting for the capsule endoscopy and losing 3 pounds but couldn't trace to any gluten since I mostly eat chicken rice porridge and all from scratch, I did more research and found that "weight loss occurs because the body does not secrete enough pancreatic enzymes to break down food, so nutrients are not absorbed. Poor digestion leads to excretion of fat, protein, and sugar..." (NIDDK). Well, doesn't this also sound like malabsorption. Yes, and I don't know if my symptoms are just from the malabsorption caused by the celiac disease and/or pancreatitis or pancreatic lipase deficiency caused by the malabsorption (www.merck.com under General Malabsorption). I'D BE INTERESTED IN KNOWING ANYONE WITH THE COMPLICATION OF PANCREATITIS OR PANCREATIC INSUFFICIENCY; My research doctor husband and I have a current plan to have me follow the diet above for a while and see if my pain and weight improve; I will also ask him to look for medical research literature on pancreatic problems if any one is interested also; In fact, it was my husband's stepped up research of medical literature for every symptom I've experienced since April 2001 that led us to celiac disease after going thru readings of IBS, lactose intolerances, food sensitivities to milk and soy, Chrohn's, etc. Afterall, the doctor's weren't taking my symptoms serious enough as the weight loss continued and the doctor's would say what's a couple of pounds here or there, until I realized they were adding up and had to find a doctor myself with my husband's help. Now finally on to the summary: First of all, someone was so kind to point me to pictures of scalloping of the folds as implicated in celiac disease - http://www.panix.com/~donwiss/gflinks/#pics; I also read "sometimes the endoscopist may note either a loss or scalloping of the normal duodenal folds..." in biopsies of celiac patients (Gastroenterology 2001, vol. 120, pg. 1526-1540). I was given the following contacts for 2nd opinions on negative encoscopic biopies: Check with Dr. Fasano at www.celiaccenter.org University of Maryland, Ctr. for Celiac Research (Ph. 410-706-3734 or FAX ext. 1669) Dr. Robert Zipser, Gastroenterologist, San Dimas, CA (Ph. 909-599-8421) Perhaps contact Dr Peter Green at Columbian Prespetarian Mediacl Ctr in NYC. He specializes celiac desease. I will give you the phone number for the University of Chicago Celiac Disease Program. They might have someone who could look at your biopsy slides. I don't know but it might be a shot. Phone # 773-702-7593. I sent my daughter's biopsies to mayo clinic Dr Murray. I asked my doctor to send it and he did. They confirmed it was negative. I was told that Joseph Murray at the Mayo clinic will do this. His number is on celiac.com, look under Doctors Recommended. He has to be called first and payment arrangements of course should be made. I have not done this myself, but I heard it is an option. good luck. Try Dr Peter green in NYC/COLUMBIA MEDICAL CENTER. He is really a celiac specialist & a kind & caring person. Go to www.finerhealth.com The lab site is connected to that site. Good health, Laura