<<Disclaimer: Verify this information before applying it to your situation.>> I would like to thank all the people (over 50 of them) who responded to my inquiry back in November. I would also like to apologize how long it has taken me to summarize. I would just like to summarize what everyone said and tell everyone what else has happened. Everyone did have one common thread in what was said - that my doctor was wrong and that even though my blood work came back positive and my biopsy came back negative that yes, indeed I am a Celiac. My doctor concluded I had irritable bowel syndrome and put me back on wheat products and took me off all fat filled products. My doctor is convinced that I am not a Celiac as my endoscopy cam back negative and I have no damaged villi I also had an allergy test (blood not skin) thanks to some people suggestions but they all came back negative. Another person recommended that I get a fat absorption test done since I had mentioned in a one on one email that my stool was floating. This test also came back negative. The test I took for this was where they took some blood and then I drank something and had to wait 3 or 4 hours and they took more blood. Then I had to collect my urine in a huge container throughout of the day. I originally did a skin allergy test but I have such sensitive skin that all 20 test came back positive including the test for water, my arm was so red and swollen for hours. I have been feeling a little better since I totally took the fiber out of my diet. I have noticed that whenever I eat oats (cereal) that I am so sick I can barely make it to the bathroom. When eating oats the cramping and diarrhea all come back. I am assuming it is the oats because the two times I ate cereals (Total Oats and Brown Sugar and Lucky Charms, first ingredients is oats) that the pain started. And I don't believe it is the milk as I had Fruity Pebbles (a rice based gluten free cereal) one morning and I was fine Most people also agreed that 3 weeks is NOT enough time to feel better, which I am being to believe also. It is difficult for me to fully believe that it is Celiac that I have, as I never lost a lot of weight as most people say though do. I did lose about 8-10 pounds but only because I stopped eating because I was so scared of getting sick. Someone did mention this "If you do not have weight lose then I would wonder more about IBS than Celiac and being on this diet would help or alleviate your symptoms of IBS as well as less milk in diet even if not Lactose intolerant." Since I have started eating gluten again I have actually gained about 15 pounds. Someone suggested "even after going gluten free, a CD may experience some symptoms because it takes maybe as long as a year for the gut to heal, so your cramping and bloating after eating steak and potato does not necessarily mean CD is not the problem. I couldn't eat apples for a year after my diagnosis w/o problems. Now I eat them all the time." This is one reason while I have decided to go gluten free for 6 months and then see how I feel. A lot of people suggested "some celiacs can help you more than some doctors" and I should get rid of my doctor Here is what other people said: 1. "Do more research. I suggest the following web site: http://www.fastlane.net/homepages/thodge/DIAG-TST.txt as it will explain to you the difference between IGG (very sensitive) and IGA (very specific to celiac). Consider a trial on gluten free foods for a longer period, 3 weeks isn't very long. Also, you may have still been getting gluten in your diet. It is in many vinegar's, cheeses, most processed foods, salad dressings marinades, soy sauce." 2. "So to summarize this rather verbose message I think that you do definitely have Celiac Disease. As to the continued problems... Are you still getting the bone pain? I find that I reliably get bone pain if I eat gluten after not for a while so I use it to measure my gluten-freeness... A diet overly high in starchy carbohydrates can give me the gas and the cramping and makes me somewhat constipated. Try eating green things--salads, steamed frozen veggies, etc-- instead of starchy things and see if that improves... also, it is important to eat a number of small meals throughout the day... like four or five... don't eat large meals." 3. A lot of people said "listen to your body" "The best piece of advice I ever heard was, remember, you are paying a doctor to guess what is wrong with you. You are entitled to use your own brain and guess yourself" most people said their own doctors were of no help and really only this list has helped" 4. "You could ask your doctor to do an HLA DR haplotype blood test on you and if you are a DR3 or DR5 or DR7 I believe, these indicate you have the genetic composition to develop Celiac. Otherwise, it is not likely. " 5. "Regarding the diet for CD. One it will take a lot longer than 3 weeks. Two, it would be best to avoid fat and lactose. If the intestine is trying to heal, then these will only put pressure on the liver. Three the intestine and body will need help to heal itself. I recommend natural medicine. I am currently using Nature's Sunshine UC3-J, especially for healing the intestine. Only use herbs under a registered naturopath, they should be able to tell you what your body needs." 6. Someone suggested Chron's disease - but I actually had tests taken for that and that came back negative 7. "Remember, unless your doctor has read hundreds of biopsies, he or she could easily misread it. You may want to do several things - Get a copy of your biopsy results - was there any indication at all of flattening or other mucous abnormalities? Perhaps another doctor might read the results differently. Try the diet - to the extreme. If you feel better (regardless of the 'label' - which doesn't open the door to any benefits, anyway) it's worth it." 8. "Make certain that your body ph is okay. The quick way is to have your urine checked with nitrazine paper. If the paper turns purple, you are in good shape. If it remains yellow, your alkaline reserve is depleted and causing gastrointestinal symptoms. Without an alkaline reserve, the intestinal mucous cannot stay healthy. If you can find some ph balancer from ecological formulas or bio terrain, it would probably be less expensive than the test to just try the ph balancer (less than $10). Lots of people have one leg that is about an inch shorter than the other. The spinal misalignment that this condition causes can pinch off the nerve trunks in the lower back, and cause intermittent functioning of the abdominal organs. I would recommend a trip to an osteopath to evacuate this possibility. CD has a nasty way of stunting growth, but not always evenly in some people. Every person that I know with CD also has one short leg (including myself). Persons with this condition frequently experience "intestinal blockages" or what feels like it. 3. Sometimes stress can compromise the intestinal lining to the point where bacteria prevents it from healing. A special diet can heal the gut when this happens. There is a book written by Elaine Gottschall called "the specific carbohydrate diet" that addresses this condition. The book costs less than $20.00, and the diet does work for those that need it. If your symptoms subside when you are fasting, and get really bad when you eat concentrated carbohydrates (sucrose), you are a candidate for this diet." 9. "The other problems what you have could cause "Candida Albicans" I asked my doctor about this and he laughed at me that it was impossible. 10. "Some parts of your story sound a little like mine. I would suggest you look into things like: - leaky gut; - Candida; - an elimination diet, with appropriate dietary challenges later on, to find out exactly what you react to; - chronic fatigue syndrome/fibromyalgia; - find a doctor who is also a nutritionist and forget the gastroenterologist; - vitamin and mineral supplements; probiotics and prebiotics (lactobacillus and fructo-oligosacharide (food for the lactobacillus). " 11. "If I were you I'd do a lactose and gluten challenge. The lactaid tablets may do nothing for many lactose intolerants, like me. Simply stop all gluten and all dairies, even the aged cheeses and yogurts they often tell you can eat for two weeks. Then eat normal helping of gluten for a day. If that doesn't bother you try normal helpings of lactose for a day. Any reaction after two weeks of abstinence will be much stronger than before, so it's unmistakable. This is the most reliable test available to most of us." A lot of people talked about how they had lots of test but were too "afraid' to get a biosopy. I had both a colonoscopy and an endoscopy and they put me 100% under, so I did not feel a thing. I would recommend to anyone getting a colonoscopy or endoscopy to make sure your doctor puts you asleep. Again I wish to thank everyone for all their advice and support. And again I do apologize for the delay in summarizing. Thank you so very much, Laura