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Everything posted by dagreen

  1. Hi everyone, Thank you so much for your writing me. I'm sorry I've been off this website for months. I've been in school and trying to figure out what's going wrong. My doctor sent to see an allergist in September and I was thinking that maybe my problems would go away. I was put on a special diet so I wouldn't have any oral allergy syndrome problems, and still the pain didn't go away. I've been keeping track now of my pain for months, and it seems some of it is very related to my period. In response to a few of your questions, no, i do not have lyme disease, so I don't think that's related for me. Catmcdon- I hope your son is okay, and that the tube down his throat helped. Anonymousgurl: When asked 'Do you mind if I ask what happens when you eat something that doesn't agree with you?' I have no problem telling you that however my pain isn't consistent. Sometimes I will get pain out of the blue not connected to my period and it almost feels like a hungry feeling, but I've already eaten enough. Sometimes that pain is accompanied by nausea and dry wretching so I don't really feel like eating, so I take a rapid release tylenol 500 mg and that eases some of the pain. Also, sorry if this grosses anyone out, but it might help, I use suppositories sometimes which eases the nausea. I have a bowel movement every day, but sometimes one suppository I think moves something in my intestine which helps the pain go away. The answer isn't always that easy. Sometimes the pain lasts for hours at a time. Its not consistent though. I have pain sometimes every 10 days, sometimes a few days in a row, but I do have to admit sometimes the worst pain is with my period so I am getting that checked out. I don't want to continually use suppositories since I don't want my bowels to rely on them, however, I am a university student and sometimes that's the only choice I have. In response to what someone else says I belch quite a bit when i think something is stuck or blocked, and then i get nausea and it almost feels like something is pushing up from my insides, which is why the suppository helps sometime. Also, a few times I have had food come up that i've already digested into my mouth, and it tastes really gross. Inahaze3- I'm so sorry for all you have suffered. I don't think I have nearly the same problems as you do, so I don't know that my writing will help that much. However, you shouldn't be having high fat diet because I saw a dietician at the hospital and low fat diets are key. From what I've learned, I saw a dietician who does believe in SMA a few weeks ago and I've learned LOW FAT DIETS ARE KEY. SMALLER MEALS ARE BETTER. The dietician told me do not go more than 4 hours without food. So 'Inahaze3' you might want to try that instead of having really fatty foods, have small, more frequent meals, because it will just cause you more pain. This is all I know right now. I'm not sure how much of my pain is related to my period or related to SMA. I think low fibre is better, because a lot of fibre I think causes more problems, I'm not sure though. I took the bloodtest again for celiac, and my levels are in the normal range, so I am not getting gluten in my diet and have been gluten free for over a year and a half. The allergist told me I have no allergies at all, except that certain foods if you look up ORAL ALLERGY SYNDROME have a cross contamination type thing going on, so when I eat certain foods, it's like i'm eating dust or trees, etc., which i'm allergic to and is separate from celiac. So since I'm not allergic to any foods from the testing, I assume having allergies to foods isn't related to my pain. However, I have found for some reason, maybe it's related to SMA that rice and corn seem to cause me problems. I've also switched to 1% milk, instead of 2% milk and the dietician told me I should not have more than 40g of fat a day. Guidelines she gave me on a low fat diet: Avoid fried and fatty foods Smaller more frequent meals Remove all skin and visible fat from poultry, meat and fish prior to cooking Commercial 'fat- reduced' and 'fat-free' products may be suitable for you, but the fat content should be checked Low fat foods she gave me: Eggs (1 a day, egg whites as desired) Dried peas, beans, lentils All fruits and juices EXCEPT avocado, coconut, olives, vegetables that have been fried or prepared with added fat (e.g. french fries are a BIG NO) Total of 3 tsp (15 ml) a day of butter, margarine, mayonnaise, peanut butter, salad dressing or oil Limit to 6 oz (150g) a day of lean meat, fish, or poultry that is baked, broiled, roasted, boiled, stewed, microwaved, or steamed. Cheese (7% MF or less) Yogurt (1% MF or less) Clear broth, bouillon, consomme, and commercial soups EXCEPT commercial or chunky soups or high-fat homemade soup made with whole milk, cream, and/or other added fats Herbs and spices, pickles, popcorn (with no added fat). Do NOT EAT the type in movie theatres Sherbet, water ices, skim milk, ice cream, puddings made with skim or 1% milk, angel cake, meringues Foods to AVOID: AVOID ALCOHOL, CASSEROLES, CREAMED, SAUTEED, FRIED, PAN-FRIED, THAT HAVE CREAM OR BUTTER SAUCE OR GRAVIES. AVOID FRENCH FRIES, ONION RINGS, MILKSHAKES, FRUIT PIES Anyway, this is the list I was given. Of course check to make sure everything is gluten free. Again, I apologize for taking so long to respond. Thank you so much for everyone responding. I don't have the ideal solution, since I'm still in pain, but eating smaller meals I think is helping a little, not much, but anything helps. I hope this information helps everyone.
  2. Thanks fiddle- faddle for searching. I appreciate it. peacenlove_girl17, I can't believe you have it too. I'm not anorexic either, but I am small. Researching it on the Internet, I have read that it mostly happens to leaner people. I have found out a lot of information from google and yahoo, but not that much information in relation to celiac disease. Also with the Internet, it is hard to tell what is true and what isn't. I'm dealing with it okay, but as you probably know, it is incredibly frustrating and painful when I eat. I only eat 10 or 11 foods. How long have you had it and how did you get diagnosed? I just found out about it recently from having a CT enterography, and I haven't got too much information from my doctor yet. Not all doctors really believe it exists. It's good to know that I'm not alone. How are you feeling?
  3. Hi, Has anyone ever heard of this? Apparently I have superior mesenteric artery syndrome. Also known as the nutcracker syndrome. I have celiac disease and I am on a completely gluten free diet. I've done some research on the Internet, and it says people get the nutcracker syndrome because of untreated celiac disease. However, I eat like 10 or 11 foods and I phone every company of every product I eat to check if there is gluten in it. I do eat out at restaurants however I talk to a manager usually and explain what I need. Has anyone heard of this? Thanks Danielle
  4. Hi, I'm 21 and have celiac disease. You might want to go get a bone density test as well. I was told that by other celiacs in May 2006 when I went to the Toronto Celiac Convention, before I knew for sure that I was celiac. In June 2006, found out for sure I had celiac disease, got a bone density scan, and I am missing bone in my lumbar spine. You might want to get a bone density test, because you can lay bone down until approximately 30 years old I've been told. Danielle
  5. Hi, I went to the Canadian Celiac convention in Toronto in May 06, and there is a drug for DH that stops the itch. I don't have DH, but phone the association at 1-800-363-7296. Ask your doctor or dermatologist, and they could give you something even before you see the gastroenterologist. Danielle
  6. Thanks for the information everyone and the support. I really appreciate people taking the time to write to me. RiceGuy, I used to eat plain, long grain white rice, which is what causes me problems now. I am going to try brown rice and basmati. Thanks for the suggestion to try different varieties. I'll try the other grains and legumes as well.
  7. Sorry, when I posted I only had read the first post. Therefore, I took my post out.
  8. How can you damage your intestines from casein? Thanks in advance.
  9. I get severe temperature swings when I'm anemic. I did not think it related to my having celiac disease, but I could be wrong. You might want to check to see if you're anemic, because I was iron deficient and folic acid deficient when my temperature swings were more severe.
  10. I've never done this before. Posted online. However, I wanted to get feedback. I'm 21 and it was confirmed that I had celiac disease about 7 months ago. I'm on a completely gluten free diet. I know that I feel better on this diet, and I used to feel wretched on gluten before I found out I was celiac, but I still feel very frustrated with the disease. Not only do I not eat wheat, barley, rye and oats, I have many digestive problems with other foods, so I am in the process of trying to figure out what's wrong. I don't eat vanilla ice cream, ketchup, corn, rice, and generally I avoid lots of other foods that are supposed to be gluten free, because they make me feel sick. I also phone every company of every product I eat and generally do not eat anything that has gluten on the line it is being produced on. My question is, how do people deal with celiac disease? I try to not feel sorry for myself when I'm out with friends who can eat what they want or go out with family, that can eat everything, but I do. I am really grateful that I found out I have celiac disease, however, I still catch myself feeling sorry for myself, and I would like to be able to appreciate what I have without pitying myself. I wish I was a better person that was just able to accept it without the frustration, and I really do try to, but I am so frustrated. I realize others are going through the same thing, so I would like people's thoughts on how to cope with this. Thanks in advance, I would appreciate any sort of advice.
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