I am taking Entocort and Citracal with D. I have ordered Freedas Vitamins, the Geri ones, I am over 50. Those are the only supplements that go in my mouth.
I am eating only meats: fish, chicken, turkey. ( have discovered pork and beef make my stomach feel funny ) and rice, rice noodles, potatoes, and some vegetables. Is squash ok? I have had some applesauce ( no sugar, but does have ascorbic acid - is that ok?) and ripe bananas (jury is still out on bananas) When I can I will try to go completely Paleo. I think vegetables and fruit are still somewhat irritating.
I have also eaten some potato chips (Kettle brand with safflower oil and/or sunflower oil) and Rice Chex for something to crunch on.
I have had days with pudding to chunky pudding like BMs. ( sorry, that's gross ) And some days when it's liquidy. I think the latter has been after beef. Never close to Normans, but it is only 2 -3 a day, still somewhat urgent. I do think the Entocort helps with the frequency and volume but not really much help with consistency. I am starting a dietary diary.
I drink nothing but water.
Any suggestions? Am I being impatient? I have been on Entocort since the beginning of Nov. I really want to get off Entocort, it's over $500/month and even if it were $5 I don't like the steroid.
Personally, I believe that well-cooked squash are probably among the "safest" vegetables that we can eat, when we're reacting. Applesauce contains sorbitol also, (and malic acid, of course), but in moderation, it shouldn't be a problem. I agree that some veggies and fruits can be irritating, and they definitely need to be well-cooked. The pericarp, (the outer walls, or peeling) of fruit, is the part that is the most likely to cause irritation, since it often contains most of the fiber, so it's a good idea not to eat it, until your gut has healed sufficiently.
I've found that even Lay's potato chips are OK, but if I eat too much of any brand, I can get D, (presumably due to getting too much fat, (probably from the oil).
If you'll scroll down to the sixth post in the thread linked to below, you'll find that I've listed links there to seven previous threads where we listed daily menus, etc.:
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.
Hi Pat,
I know you've tried Entocort before without much success. It sounds like you have to pay for the prescription yourself, which makes it very expensive. I believe it took about 4 weeks after starting Entocort for me to finally start having formed BMs and then I was having them about 3x/day. I really have never gotten below 2x/day, though the urgency isn't there.
I also just ordered the Geri Freeda vitamins and their vitamin D pills. Like you, I thought I'd give the corn-free diet a full effort. I've greatly reduced my corn intake, but I'm finding it very difficult to completely eliminate it. For example, I haven't found any other multiple vitamin that is corn-free. At least most of the products with soy list it on the packaging - not so with corn. It's very difficult to determine if a bag of sugar is made from sugar cane or from corn, for example. I looked at Jean's list in the Diet section and it's pretty discouraging. It almost seems that if you want to be totally corn-free, you have to go Paleo. If a food is processed at all, it probably contains corn. There aren't many here that have eliminated corn - Polly, Karen, Maggie*, artteacher - maybe they can tell us how they did it.
Your present diet seems pretty simple. I wonder about bananas, too because I eat them almost every day. But when I've eliminated them, I haven't seen a difference.
Here are my typical meals:
Breakfast
Arrowhead buckwheat cereal or Rice Chex with a banana, strawberries, blueberries, or raspberries and homemade rice milk
Occasionally homemade EF waffles or pancakes
melon-in season
pineapple juice
apple juice
other fruit syrups mixed with water
Lunch
sandwich with homemade bread, homemade mayonnaise and Boar's Head or Hormel natural turkey or ham
potato chips
pickle
rice cake with sunflower spread, jelly
chicken broth soup with carrots and noodles or rice, sometimes cauliflower, natural turkey cubes
beef broth soup with carrots and noodles or rice, sometimes caulifower, ground beef
tomato soup with rice or rice noodles (rarely)
rice crackers with sunflower spread, jelly or olive tampenade (not sure if this is bothering me)
sometimes a banana or rhubarb muffin
canned pineapple, applesauce, apricots, peaches, tropical fruit
Dinner
Main Dishes
potato pancakes, sausage, applesauce
chili-mac
Spanish rice
spaghetti with rice spaghetti
hamburger, pork chops, GF chicken sausage
meat loaf
macaroni-beef-tomatoes
sloppy joes on homemade GF bun
turkey, pork roast, pot roast, round steak, gravy
beef steak
chicken breast, rice with chicken broth
chop suey with Dee's mock soy sauce
broccoli beef with rice
sweet/sour pork with rice
stuffed cabbage rolls w/tomato sauce
German potato salad with bacon
chicken casserole with carrots, chicken broth, rice noodles
Italian sausage, red/green peppers, tomato sauce (I think the green peppers are a problem)
Arby's roast beef with my own GF bun/potato cakes
Vegetables
mashed potatoes with rice milk, ghee or Mother's margarine
baked potato
tater tots (have corn flour)
broccoli
cauliflower
asparagus
brussel sprouts
beets (rarely)
sweet potatoes
squash
Desserts/Snacks - eat a couple of times a week
Enjoy Life chocolate chips
brownies
chocolate chip cookies or cake
banana cake
raspberry sorbet
chocolate coconut ice cream
frozen fruit bars
pistachios
Lära bars
I hope you can find some usable ideas from my list.
Gloria
You never know what you can do until you have to do it.
You're right - it is very hard. I just went back and reviewed parts of the food diary, (I kept it on a computer spreadsheet), that I logged for almost two years, from Aug 2002, (just before I began the GF diet), until July 2004, and while I can see indications of significant improvement after two or three months, I still can't see any clear connections with what I was eating, (on a day to day basis), and it took me a year and a half, before I was sure that I was actually going to get my life back. FWIW, I finally completely cut out all corn, sugar, and dairy products, in order to achieve remission, and I totally avoided them for at least two years, before slowly reintroducing them.
Maybe it won't take as long as you think, though, since you have already accrued so much experience in dealing with this disease. If we all put our heads together, and think positive thoughts, I know you can do it.
If you're really motivated, failure is not an option. Anytime you feel discouraged, please don't hesitate to log on, whether you need a shoulder to lean on, a pep-talk, an opinion, or whatever. Also, please don't hesitate to share any encouraging news with us, either. I'm very optimistic about this, because it's clear to me that you're going to see this through.
Tex
P S After reading Gloria's post, I thought that I would mention that I also cut out all but an occasional banana, and all fruit and veggies, other than potatoes, and occasional green beans or broccoli, during that two-year period, while my gut was healing.
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.
It was close to paleo, but I always ate a lot of potatoes, virtually every day, and rice, occasionally. IOW, I ate pork and chicken, (beef gave me symptoms), potatoes, rice, and occasionally green beans or broccoli. Virgil's Root Beer is just about the only soft drink that is totally free of corn, so I drank one of those now and then, otherwise water, or unsweetened tea. Occasionally, I tried Polly's recipe for a 50-50 blend of Welch's 100% grape juice and club soda, but I had to limit the amount to about 20 oz per day, or I would get D - I'm not sure if that was due to yeast, or the natural sugar in the grape juice. Grapes themselves, will give me big time D, every time, if I eat more than a few of them, or at least they did the last time I tried them, a little over a year ago.
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.
You've already gotten some great advice above, so I won't add any more at this time. I would be very happy to hold your hand. Just jump in and whine, rant and rave, and ask questions at any time. It is a HUGE lifestyle change to change one's diet, and I know that the support here helped me immensely. YOU GO GIRL!!!
Love,
Polly
P.S. Gloria, impressive list!
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
I just want this to work. The only sugar I am getting is from the Rice Chex and the natural from applesauce and bananas. I think I will cut out the fruit and if you think it might help I'll eliminate the Rice Chex. I am starving right now. We're having salmon, rice, and brocolli. I will keep you posted.
Pat
P.S. I have some very exciting family news. I'll post it on the main board.
Salmon, rice and broccoli sounds like a good, safe, GF meal.
I'm not sure what to think about Rice Chex. A few celiacs swear that it causes them to react, while others claim it's totally safe. I've tested it, and it seems to work fine for me. I believe it's probably as safe as any GF processed food on the market.
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.
I really really empathize. Sorry it's taking forever.
For me, it was best to go to the simplest diet possible. At first, it was canned pears, canned green beans, & cooked millet. Whenever my stomach was messed up, 2 or 3 days of this fixed me up. A nutritionist helped me pick these foods because he thought I was reacting to things I was eating, so we picked some foods that I didn't eat on a regular basis, and were thought to be non-reactive for most people. If you think about it, these foods have some plusses: they are non-allergenic, low acid, canning helps the fiber be non-irritating, there are no artificial colors, no gluten, no dairy, no corn, low sulfite, low fat. (Millet is actually a grain, but a relatively safe one, and I don't eat it anymore. Now I eat potatoes, and tapioca starch flour as a grain substitute)
As it turns out, I can't eat dairy, grains (including rice and corn), or highly sulfited foods. You can see how much the dietary picture would be complicated by eating refined foods (which have more than one ingredient).
I also learned about Caltrate 600 Plus (in the purple box). I take it religiously before breakfast and dinner. No other brand of calcium works, there is a dedicated group of people who take it. Research says about 20% of people with irritable bowel are helped by it, as well as people with no gall bladders.
Some of the Rx's doctors gave me to help the D had dairy or sulfites in them either as active or inactive ingredients. You might look at the ingredient list of yours. For example, I can take liquid Pepto, but not the tablets. I can take cod liver oil, but the same product in a gel cap gives me horrible D. (the caps are highly sulfited). Some of the B vitamins are highly sulfited and not tolerated either. Even Vit. C gives me D (it's made from corn) unless I take the type made from sago palm.
So, if you are one of those people who have multiple food problems, it might make sense for you to go the most simple diet for a few days until you have some success, and also look at your vitamins, and even the ingredients of the Entocort.
AND take my advise with a grain of salt! We are all so different.
All my best wishes for the holidays and 2009 - Love, Marsha
Thanks so much for the advice! It helps to hear how others have battled this situation. Finding a nutritionist who can give you some usable advice is rare. One that I talked to just suggested that I get an anti-anxiety med. And maybe I need that, but I don't think so. Another suggested I eat more fats, she was just concerned with my weight. Where do you get millet and how do you fix it?
The early stages of doing this diet are pretty anxiety producing, that's for sure, but it's worth it in the end. Anxiety's really a good thing -- it's what gets you up in the morning! Think positive! You WILL get through this.
Yours, Luce
You should be able to get it in a regular grocery store, esp if it has a little healthy grain section: Bob's Red Mill products, for instance. Or a health food store. I soak it overnight on the counter, or the fridge, in tapwater. Then in the morning, scoop out a little with a strainer and simmer it in water (with a pinch of salt) for 10-15 minutes. Use 1/4 cup to one cup water approx.
Merry Christmas! Let me know if you try it . . Marsha
Thanks, Marsha, for the instructions for Millet. Also, Thank you for reminding me about the Caltrate in the purple box. I decided to take it again (didn't work when I was not treating MC). I think it is helping. May be too soon to tell, but I think it is. It does have corn starch in it but I really don't know that corn is a problem. Thanks again.
Those are the only supplements that go in my mouth.
And maybe I need that, but I don't think so. Another suggested I eat more fats, she was just concerned with my weight. Where do you get millet and how do you fix it?