Well, I woke up this morning and Norman appeared. There's still hope!!
I'm hoping that's because I did something right yesterday. I compared what I ate yesterday with the day before. The main difference seemed to be that I ate strawberries in my cereal the day before.
I looked over my food diary for the past week and compared it to the past month. I noticed that I didn't eat strawberries much during the month I had nearly all Normans, but I have eaten them nearly every day this past week. Maybe they are the problem.
I'll see what tomorrow brings.
Gloria
You never know what you can do until you have to do it.
Well how about that? That's some surprisingly good news. You may well be right about the strawberries, but if so, you will prove once again how different we are, and how conventional medical knowledge so often does not apply to us. Believe it or not, some "experts" recommend strawberries to control diarrhea.
If all else fails, she tries strawberries when they're in season. Yep, strawberries, a remedy from one of her former professors. "They're very good for controlling diarrhea," says Dr. Feldman.
Of course, they also recommend fiber, for controlling D.
About 12 years ago, here was an outbreak of sickness, with D as one of the main symptoms, in many areas of this country. It was tracked down to strawberries contaminated with a single-celled protozoa, Cyclospora.
The symptoms of Cyclospora are diarrhea, fatigue, loss of appetite, abdominal cramps and low-grade fever within one to fourteen days after ingestion of contaminated food. I'm guessing that's probably not the problem, in your case, though, since you didn't mention having any of the symptoms, other than D.
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.
Eliminating the strawberries didn't do the job. I had explosive D on Sunday and Monday. After the D on Monday I decided to eliminate the following foods to see what would happen:
Corn & its derivatives - I still don't think this is a problem, but just in case...
chocolate
strawberries-continuing to eliminate
bananas - because I eat them every day
all other fruits and fruit juices except blueberries and pineapple
buckwheat cereal - because I eat it every other day
Rice Dream milk - have had one glass every day
rhubarb muffins - rhubarb is in the same food family as buckwheat
sugar-flour-based snacks like brownies or chocolate chip bars
Yesterday (Tuesday) I had a solid BM and today (Wednesday) Norman appeared.
I think I'm getting very close to getting this figured out, at least at the 1 pill per day dosage. I fear that I will have to go through the trial again if and when I completely eliminate the Entocort. But I'll take it one step at a time. My list of suspect foods is getting smaller and smaller, as you can see. I'm going to start adding one food back a day at a time and see what happens the next day.
Gloria
You never know what you can do until you have to do it.
Most people want to cut out one item at a time, but the trouble with that method is that if you still have D, you have no way of detecting whether any individual food makes a difference. With Norman close at hand, it's easy to tell what's what, when you add an item.
I'm betting that the buckwheat, rhubarb, and strawberries are OK. In fact, unless the problem is a cumulative effect from fiber and/or sugar, I'll stick my neck out and guess that the culprit will prove to be the chocolate, (due to soy).
See - you were a lot closer than you thought. LOL. Good luck weeding out the final problem item, (or items). It will soon be time for celebrating.
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.
A month has passed since I last posted on this thread, so I thought I'd give a report.
I eliminated all of the foods mentioned in my previous post and saw some improvement. Then I noticed that the vitamin E supplement I was taking had soy in it. Once I stopped taking that supplement, Norman began appearing regularly, with an occasional softer BM.
I began taking Cipro two weeks ago and decided to begin taking one Entocort pill every other day. I also was taking Tylenol. Once I stopped taking Tylenol, Norman has been my only visitor. I had one day where Norman's softer cousin visited. I ate mixed nuts the day before and also ate at a buffet restaurant, so I think it was due to one of those two. I'm starting to suspect I have problems with cashews, since I reacted to a cashew Lara bar a couple of weeks ago.
I've noticed problems after eating plain nuts, so I'm avoiding mixed nuts and any nuts other than finely ground almonds or walnuts. I've resumed eating all of the foods listed in my last post with some moderation. I made some chocolate-frosted donuts the other day and haven't had a problem. I haven't tried to eat any chocolate bars, but I did eat some Enjoy Life chips without a reaction.
I'm going to reduce the Entocort to one pill twice a week. I know that Cipro helps alleviate symptoms and I've only been off of it for 3 days, but I'm optimistic that I might finally be close to getting off Entocort and being in remission with diet alone. The end seems to be in sight!!
You never know what you can do until you have to do it.
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 think I may react to the Enjoy Life chocolate chips (I was so happy to find them that I only bought 4 bags) but I'm not sure. I know they tick me off because the are so micro mini....I even wrote the company. I also told them that their bars didn't taste very good. (They look like what they taste like..........poop.)
DISCLAIMER: I am not a doctor and don't play one on TV.
Gloria, I have been following your posts because I seem to have many of the same food intolerances as you. I am glad you are experiencing some success at last. I had to switch my vitamin E supplement to synthetic because I could not find a natural supplement that was soy free. My probiotic also contained soy but I have not replaced it yet due to the fact that there are so many to choose from, and from what I am reading, most do little or nothing to augment the good bacteria anyway.
It's been a couple of weeks since I've posted, but what a wonderful two weeks!
I stopped taking Entocort entirely on my birthday, October 1. What a great birthday present!
Since that time, I have seen Norman, and only Norman each day, sometimes twice a day. I am always apprehensive when I go to the bathroom, but there he is - I can hardly believe it when I see him. My DH is probably getting tired of hearing my excitement. It's certainly not normal to get excited over a BM, but you will all understand.
I have begun to reintroduce foods that I hadn't eaten in a long time because I wasn't sure if they were causing a problem. Some I've added recently are:
ham
orange juice
pistachios
corn
safe chocolate
I'm going to try eating a small salad with dinner tonight. It's been sooo long since I've eaten one. I know Tex will probably scold me. If you do, Tex, I'll reconsider, but I'm just doing so great and it's the end of the fresh tomatoes season. I've been eating small amounts of lettuce on sandwiches, so I think I'll be OK.
I keep thinking that I will react, but I haven't. It actually seems that I'm having better BMs than I was before my Dx. As I think back, I realize that MC may have been building for a longer time than I realized. I thought I got it overnight, but I think I'm wrong. I remember leaving "evidence" in the bathrooms at school and being embarrassed. I'd also soil my underwear a little afterward, even though I thoroughly wiped. I had really upped the fiber in my diet in an attempt to get looser stools so that I wouldn't get another diverticulitis attack. The fiber I used was whole wheat and oats. Duh!
I wonder if I'm healing quickly because I've been off gluten for 16 months and dairy and eggs for 14 months. My main irritants have been very small amounts of soy and a steady stream of legumes, mostly green beans. I've come to believe that I'm extremely sensitive to legumes, which include soybeans. It seems that I've found all of my triggers. If I stick to my list of safe foods, I feel that I'll remain in remission. Time will tell, but I'm very optimistic. I'm still keeping a food diary as a precaution.
I want to publicly thank Tex for not letting me give up. I was only a day away from remission. I appreciate everyone else's help and encouragement.
Gloria
You never know what you can do until you have to do it.
Thank you for writing a very inspiring post. In fact, this entire thread is an excellent record of what it takes to beat this disease, when the odds seem insurmountable. IMO, it should be required reading for any new members with double DQ1 genes, and it should be very beneficial for anyone who is considering "giving up", due to lack of any noticeable improvement.
I'm certainly not going to criticize you for trying a salad tonight. You've earned the right to experiment, now that you know your intolerances. You may still have to determine your "limits", with some foods, (since your gut is probably not completely healed, yet), but hopefully, if you should accidentally trigger a reaction, it will be short-lived. If you can handle orange juice, you're doing pretty good. I'm still afraid to try that stuff. LOL.
Concerning the onset of symptoms, my symptoms started the same way, with an episode here, and another one there, often a month or so apart. Then one day the D started, and wouldn't stop. I have no idea when mine really started, either, because some of those symptoms were present on an erratic basis, for years, before it ever dawned on me that something was wrong. Duh! I did finally realize that something was definitely amiss, several months before the chronic D started, but the realization did me no good, since I didn't have the foggiest idea what to do about it.
An odd thought just crossed my mind - you know that diarrhea is listed as a side effect for budesonide, of course. Hmmmmmmmmm, you don't suppose that the Entocort might have helped to prolong your recovery process, do you? That might explain why you are able to tolerate things now that you couldn't, just a month or so ago. Of course, it took me about a year and a half to achieve remission, also, but I wasn't taking any meds, and I was slow to remove dairy, corn, and sugar from my diet.
Your last paragraph brought a lump to my throat, and a tear to my eye, (seriously), because I knew how hard you were working, and how frustrating the lack of success, after so many months, can be. I knew that you didn't really want to give up, though, because you kept posting. Most people who give up, stop posting, and then, of course, all hope is lost. I'm so glad that you kept posting, because that made it easy to convince you to keep trying. It's easy to miss clues, when the D just goes on and on, so all I did was to point out the obvious. You did all the hard work, so you deserve the kudos.
And last, but not least, we obviously missed your birthday, due to ignorance. Now that we know, that won't happen again, (I hope). At any rate, Happy belated birthday! I have to agree that it would be a pretty tough project, to have to come up with a better birthday gift, than terminating the use of Entocort, while maintaining remission. That, in itself, is a good reason to celebrate that day.
I'm more than optimistic - I'm confident that you've got it licked.
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.
Thank you for the kudos and the belated birthday message. I am pretty euphoric about finally conquering this problem. It's taken 16 months of constant vigilance, but I did it!
It's interesting that you should mention that diarrhea is a side effect of using Entocort. I'll always be grateful that Entocort allowed me to live a reasonably normal life while figuring out my intolerances. That said, there has been a noticeable improvement in my BMs since I've gone off of it. It may sound silly, but they are almost "picture perfect." Very normal, solid, and well-shaped. I seldom had that before. That's probably why I haven't been reluctant to resume eating some of my suspect foods. I just feel so normal now.
I guess the message I want to leave to others is Don't give up!! If I can do it, you can too. We are all here to help and encourage you.
Gloria
You never know what you can do until you have to do it.
Gloria, Congrads, way to go. 16 months is a long time, you deserve to celebrate for sure.
If you have the time maybe you could update us on the foods that you are able to add back into your diet. Those of us who have the same or similar intolerances, would benefit greatly.
Success stories like yours motivate me to keep going!
Joan,
Thank you for the birthday wishes. I've posted this thread with the hope that others can see my struggles and successes. Little did I know that when I started it, a year would pass before I would be in remission. I thought it would just be a few months at the most.
Hotrod,
The list of the foods I've elimininated and reintroduced when possible is on page 6 of this thread. I've just updated it so that it's easier to read. I will continue to update it as I test suspect foods. So far, I'm not having any problems with the few foods I've tried.
Gloria
You never know what you can do until you have to do it.
I suppose I should start a new thread called "Maintaining Remission." It's been 5 weeks since I've gone off the Entocort. I think the timeline for testing if your remission strategy is working is 8 weeks.
The first 2 1/2 weeks brought perfect Normans every day. Then I went to visit my daughter and we ate out a few times. I was careful, but I did eat french fries a couple of times. One hamburger arrived on a bun with mayonaisse and my Arby's roast beef came on a bun, which I replaced. My beautiful Norman started losing his sterling look, but was still solid. One day, my daughter informed me that she put a regular bouillon cube (soy in it) in the sauce of a meal she prepared.
I thought I would get back to Norman once I returned home, but it's been a bit up and down, though I've continued to have solid BMs. Yesterday I had D for the first time since I went off Entocort, so now I'm back to sleuthing. I've continued to maintain my food journal, so I have a record of what I've been eating. The day before yesterday I ate these suspect foods: orange juice, mayo made with corn oil, and homemade ghee. Yesterday I ate vegetable-coated rice crackers with jelly (homemade with Clear Jell) and chocolate chip cake.
Here are some of the foods I've reintroduced since my remission. I've placed an "S" next to the ones that are suspicious.
ham
orange juice - S
pistachios
corn & derivatives - S
capers - a completely new food for me - S
rice crackers with a powdered vegetable coating - S
homemade ghee - S
fresh pear - S
mandarin oranges - S
Enjoy Life chocolate chips - S
Coconut chocolate ice cream - S
lemonade - S
blood orange sorbet
mango sorbet
sunflower butter
jelly - homemade with Clear Jell (corn derivative) - S
frozen strawberry fruit bars
I highly suspect the capers, which I used as an ingredient in the olive tampenade recipe. However, I've learned that the first thing I need to do after a reaction is immediately eliminate all suspect foods until I'm stabilized, so that's what I'm going to do. I will add the foods back slowly and hope that I remain D-free.
Half my lunch foods are in the list, so I guess I will be eating rice yogurt for a few days.
Gloria
You never know what you can do until you have to do it.
I had explosive D on Sunday and Monday. After the D on Monday I decided to eliminate the following foods to see what would happen:
