Visit the Microscopic Colitis Foundation Website
I have now been on GF/DF for six weeks and have seen improvement. My major nausea has subsided to mild with little tummy grumbling and no D at all. I am grateful since I have had my first anniversary with this crappy disease. My test results are not the best, but at least I know where I stand; scored well over the 10 on casein, egg, soy and yeast (yeast being the lowest at 24). Took a few days to adjust; felt sorry for myself, but am ready to move on. I do fight depression and have not given into meds yet. One good thing I have managed to go from 2 Entocort to 1 a day over the Xmas week. Now that was really brave or stupid! I only have been on Entocort for 2 months but did take Prednisone (10mg) for 3 months prior. Also, since I am still suffering from nausea, I switched from taking the one pill in the morning to late afternoon and it seems to be helping.
I am wondering about the use of egg whites or is this taboo? I’ve read a little about the Paleo diet, BUT, I have already lost too much weight and not sure this is for me. If there was one book to read on this subject, what would you all suggest? Dee’s recipes have been an immense help. Occasionally I have to take clients to lunch and I foresee this as being a huge problem with all of my intolerances.
I still struggle with lack of confidence and worry about what else is going to happen and when it will happen. So my New Years Resolution is going to take the AA approach to life………..only one day at a time! This is a great website and thanks to all of you who respond time after time!
Wishing the healthiest New Year to all...............Ginny
Here are my test results:
Fecal Anti-gliadin IgA: 402 Units
Fecal Anti-tissue Transglutaminase IgA: 108 Units
HLA-DQB1 Molecular analysis, Allele 1: 0201
HLA-DQB1 Molecular analysis, Allele 2: 0602
Serologic equivalent: HLA-DQ 2,1 (Subtype 2,6)
PS Tex, I attempted to email these to you on my daughter’s email “Marney” and realized you wouldn’t have a clue who this was!
Update and Enterolab results
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Ginny,
It's great to see that you've had so much improvement in a relatively short period of time.
Sensitivity to the albumin, (the primary protein), in egg albumen, (egg whites), is exactly what the Enterolab egg tests were developed for. IOW, if your test results are positive, then you are definitely sensitive to egg whites. You might, however, be able to eat the yolks, if you are able to carefully separate them, without getting significant amounts of the egg white. The definition of "significant", varies by the individual, of course, and depends upon just how sensitive you might be to this protein. Most of us who are sensitive to egg albumen are afraid to try that trick, but I seem to recall someone who was going to try it. I can't recall who it was, though, and I don't know if it can be done on a practical level, or not.
If you're referring to a book on the paleo diet, the "bible" of paleo diet followers is The Paleo Diet, by Loren Cordain, PhD. http://www.thepaleodiet.com/paleo_books/paleodiet.shtml
More and more restaurants are providing gluten-free menus, as time goes on. You might do a little internet research to see what's available in the area where you are most likely to eat out.
Your resolution, "One day at a time", is definitely the way to go, when recovering from MC. For some of us, it's the only option.
Thank you so much for posting a progress report. Such information is very valuable for newbies, who are looking for a glimmer of hope, with a disease that can sometimes seem utterly hopeless.
I hope your improvement continues.
Tex
P S Thank you for posting your test results. I note that your anti-gliadin result is very high - higher than I've ever seen before, I believe. Those test results are always very enlightening. I trust that you won't mind me adding them to our list of other Enterolab test results.
P P S You only listed the anti-giadin, anti-TTG, and genetic test results. Would you mind posting the other test results, also? That is, egg, casein, soy, yeast, etc., and fecal fat score, if you ordered that test, also. Thanks.
It's great to see that you've had so much improvement in a relatively short period of time.
Sensitivity to the albumin, (the primary protein), in egg albumen, (egg whites), is exactly what the Enterolab egg tests were developed for. IOW, if your test results are positive, then you are definitely sensitive to egg whites. You might, however, be able to eat the yolks, if you are able to carefully separate them, without getting significant amounts of the egg white. The definition of "significant", varies by the individual, of course, and depends upon just how sensitive you might be to this protein. Most of us who are sensitive to egg albumen are afraid to try that trick, but I seem to recall someone who was going to try it. I can't recall who it was, though, and I don't know if it can be done on a practical level, or not.
If you're referring to a book on the paleo diet, the "bible" of paleo diet followers is The Paleo Diet, by Loren Cordain, PhD. http://www.thepaleodiet.com/paleo_books/paleodiet.shtml
More and more restaurants are providing gluten-free menus, as time goes on. You might do a little internet research to see what's available in the area where you are most likely to eat out.
Your resolution, "One day at a time", is definitely the way to go, when recovering from MC. For some of us, it's the only option.
Thank you so much for posting a progress report. Such information is very valuable for newbies, who are looking for a glimmer of hope, with a disease that can sometimes seem utterly hopeless.
I hope your improvement continues.
Tex
P S Thank you for posting your test results. I note that your anti-gliadin result is very high - higher than I've ever seen before, I believe. Those test results are always very enlightening. I trust that you won't mind me adding them to our list of other Enterolab test results.
P P S You only listed the anti-giadin, anti-TTG, and genetic test results. Would you mind posting the other test results, also? That is, egg, casein, soy, yeast, etc., and fecal fat score, if you ordered that test, also. Thanks.
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I have researched the restaurants in this area and although some of the chains are providing help with menu suggestions, their staff help is usually clueless. At this point I am able to eat salad, so grilled chicken or shrimp on a salad will have to do.
Absolutely Tex post the results. Here is the results for the egg, yeast, and Soy:
Casein: 40 Units
Egg: 83 Units
Yeast: 24 Units
Soy: 64 Units
Thanks again for your support and knowledge.
Absolutely Tex post the results. Here is the results for the egg, yeast, and Soy:
Casein: 40 Units
Egg: 83 Units
Yeast: 24 Units
Soy: 64 Units
Thanks again for your support and knowledge.
You're right on target - the wait staff in most restaurants are typically pretty much clueless, due to lack of adequate training on food sensitivity issues. Often, if you can possibly spare the time, it definitely helps to visit a "new" restaurant ahead of time, (during a slow part of the day), and discuss your needs with the chef, or at least a manager. Usually, they will be quite knowledgeable, and very helpful. Often, they can suggest ways to eliminate certain ingredients, or seasonings, so that other menu choices might work for you. For example, steaks, baked potatoes, etc., are usually safe, if the chef is aware that the grill needs to be carefully scraped clean, where your steak will be cooked, and no butter, (or other commercial seasoning mixes), can be used. Baked potatoes, of course, need to be prepared with no butter, cheese, croutons, etc. This is not possible at all restaurants, since some of them pre-coat all their spuds with butter, first thing in the morning, but if they are aware of your needs, they may be able to grab an untreated one out of the bin, and microwave it for you.
Anyway, with a little advance "scouting and coaching", you may be able to open up more menu options, and you can be confident, (hopefully), that when you go there for a meal, they will be able to accommodate your needs without any hitches, and without any issues that might adversely affect the tranquility of your meal with your client.
Thanks for posting the other results.
Tex
Anyway, with a little advance "scouting and coaching", you may be able to open up more menu options, and you can be confident, (hopefully), that when you go there for a meal, they will be able to accommodate your needs without any hitches, and without any issues that might adversely affect the tranquility of your meal with your client.
Thanks for posting the other results.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Dear Ginny,
To expand on Tex's advice. If you can't visit in person, call and ask for the manager or the chef. Explain the problem and ask if gluten-free options can be made for you or if you could bring gluten-free pasta, etc., which the restaurant will prepare for you. You may be surprised that they will try hard to accommodate you. I agree with you that for MC patients, it's one day at a time. One final thought, initially, I was ashamed to admit to friends, family and business associates that I had "special needs" when dining out. Finally decided not to hide the problem. Now I say I have an uncommon type of colitis and MUST adhere to strict diet, just as a diabetic or someone with food allergies. So far, I have had nothing but support. Good luck to you and improving health in 2010. Sheila
To expand on Tex's advice. If you can't visit in person, call and ask for the manager or the chef. Explain the problem and ask if gluten-free options can be made for you or if you could bring gluten-free pasta, etc., which the restaurant will prepare for you. You may be surprised that they will try hard to accommodate you. I agree with you that for MC patients, it's one day at a time. One final thought, initially, I was ashamed to admit to friends, family and business associates that I had "special needs" when dining out. Finally decided not to hide the problem. Now I say I have an uncommon type of colitis and MUST adhere to strict diet, just as a diabetic or someone with food allergies. So far, I have had nothing but support. Good luck to you and improving health in 2010. Sheila
Ginny,
It is initially depressing to learn that some of the foods we used to be able to eat are hurting our bodies. It's like saying goodbye to old friends. I've learned to tell myself that I am grateful that I was able to enjoy those foods for 60 years - I have fond memories of them, but I've had to let them go.
It's best to find a few restaurants that you trust and stick with them. I've had success with the following:
Arbys - GF bun and potato cakes
Mexican restaurant - corn tortilla/taco, rice, and guacamole, but no sour cream or cheese
PF Chang's - Philip's Better Lemon Chicken
Olive Garden - GF chicken/steak skewers
Breakfast - potato skillet w/sausage or ham and tomatoes; hopefully with fresh potatoes
German - grilled pork chops, fried potatoes, red cabbage
Outback Steakhouse, Applebee's - hamburger, bacon w/o bun, baked potato w/ghee, homemade mayo
Greek - pot roast and rice in tomato sauce (ask if it has flour)
Maggiano's (Italian) - corn pasta, flour-free tomato sauce, chicken breast, asparagus - made to order by chef
Brazillian Steakhouses - most meats, selected salad bar items
Gloria
It is initially depressing to learn that some of the foods we used to be able to eat are hurting our bodies. It's like saying goodbye to old friends. I've learned to tell myself that I am grateful that I was able to enjoy those foods for 60 years - I have fond memories of them, but I've had to let them go.
It's best to find a few restaurants that you trust and stick with them. I've had success with the following:
Arbys - GF bun and potato cakes
Mexican restaurant - corn tortilla/taco, rice, and guacamole, but no sour cream or cheese
PF Chang's - Philip's Better Lemon Chicken
Olive Garden - GF chicken/steak skewers
Breakfast - potato skillet w/sausage or ham and tomatoes; hopefully with fresh potatoes
German - grilled pork chops, fried potatoes, red cabbage
Outback Steakhouse, Applebee's - hamburger, bacon w/o bun, baked potato w/ghee, homemade mayo
Greek - pot roast and rice in tomato sauce (ask if it has flour)
Maggiano's (Italian) - corn pasta, flour-free tomato sauce, chicken breast, asparagus - made to order by chef
Brazillian Steakhouses - most meats, selected salad bar items
Gloria
You never know what you can do until you have to do it.
Tex, Gloria, Sheila, thanks for your input it is always beneficial. I have called ahead or I try to get there before others to talk to someone in charge (not always successful) and I have already started bringing items with me to eat at the table. You got to do what you got to do to stay well!
Tex, I just noticed that you had made a remark about my anti-gliaden being so high. Prior to finding this wonderful website, I was on a high carb diet with lots of breads, pasta, low fiber cereals etc., so I am wondering if this could be the main cause? It was amazing how much better I felt once I dropped the glutin.
Tex, I just noticed that you had made a remark about my anti-gliaden being so high. Prior to finding this wonderful website, I was on a high carb diet with lots of breads, pasta, low fiber cereals etc., so I am wondering if this could be the main cause? It was amazing how much better I felt once I dropped the glutin.
Ginny,
Congratulations on being so proactive when you eat out. Your body will definitely appreciate your efforts, in the long term.
Your previous diet could certainly be the reason for those high test results. Higher gluten ingestion rates for an extended period of time, could certainly cause your immune system to produce high levels of antibodies. Please be aware, though, that those higher scores do not generally translate to a state of higher sensitivity, and/or more intense symptoms, or more difficulty in achieving remission. We have found that for most of us, there is usually no correlation.
Tex
Congratulations on being so proactive when you eat out. Your body will definitely appreciate your efforts, in the long term.
Your previous diet could certainly be the reason for those high test results. Higher gluten ingestion rates for an extended period of time, could certainly cause your immune system to produce high levels of antibodies. Please be aware, though, that those higher scores do not generally translate to a state of higher sensitivity, and/or more intense symptoms, or more difficulty in achieving remission. We have found that for most of us, there is usually no correlation.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.