Dear Crystal,
So very sorry to hear about the agony you're suffering through - this is truly a cruel and unforgiving disease. I know the idea of giving up your favorite foods is excruciating when you're already down and out. I have just gone through one of the hardest years of my life, while treating my MC with diet, but have achieved amazing results and feel I have gotten my life back. Perhaps I'm better than I've ever been, since it seems I have suffered stomach issues all my life and now rarely feel ill.
Anyhow, because my suffering was so intense, and I found out that I have 2 celiac genes through testing at Enterolab, I decided to have my son and 3 grand children tested for gluten sensitivity. I knew that my son would have inherited one of my celiac genes, which is why he so readily went along with the testing. Well, it turned out that all 4 of them were highly gluten intolerant. Because my son and DIL had witnessed how I suffered, they immediately made their household gluten free to protect the health of themselves and their children. It has now been several months since this happened, and they are all noticing health improvements on many different levels.
It is actually not so difficult to have a gluten free household once you wrap your mind around it and get into a new routine. The transition, like any transition, is of cause hard, but when it comes to safe guarding ones health, any sacrifice is worth it in my book. I know you feel you can't afford the testing at Enterolab, but it certainly would settle some very important questions in your mind. Including the genes testing for the sake of your kids would of course be ideal. Some insurance companies cover the expense if the test is ordered by your doctor, but this is a hard struggle to win as most doctors do not know about the food connection and MC, and will not recommend the tests.
Don't know if any of this has helped, but want you to know that my heart goes out to you in your struggle. This is a great place to come for advise and support, so please keep posting here, we all want you to win this battle.
Wishing you all the best on your path to reclaiming your rightful health.
Love,
Kari
latest prep for colonoscopy possible imuran treatment
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Crystal, I so agree with Sara here. We've all been where you are. And believe it or not, the kids probably don't need the gluten either. My daughter is already discovering healing by eliminating it and I hope my grands are enlightened before they develop such serious symptoms.I have to tell you one more little secret... we ALL love food. You aren't the only one who has favorite foods, special temptations, guilty pleasures, and foods that evoke memories. That's the human condition. Gluten is particularly addictive, unfortunately (like sugar for many people). Plenty of us are still enjoying fried chicken, once we find a way to make it that doesn't endanger our health
P.S. I have made some pretty good buttermilk fried chicken with rice flour (gravy too). Things may be a bit different but they can still be enjoyable.
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crystal552000
- Little Blue Penguin
- Posts: 38
- Joined: Sat May 08, 2010 8:14 am
- Location: kansas city Mo
ok so from the things that i have read since I have went gluten free fo several months that should have been enough time to determine wether im not gluten sensitive however if I have more than one, it would be indeterminate. So if I want to try this again exactly what should I avoid and for say how long. I mean are eggs safe, cheese, milk, potatos etc. All of which i love lol. Any help would be appreciated. Also at one time the doctor suggested entocort and lialda, i mean that has to better than the imuran or am I way off base
Crystal,
Yes, either one of those drugs would be a much better choice to start with. Not only are they safer for your immune system, but they will work faster, especially the Entocort.
Most of us are sensitive to gluten and all dairy products. About half of us are also sensitive to soy. Probably less than a fourth to a third of us are sensitive to eggs, and fewer still are sensitive to yeast, and various other proteins. The Enterolab tests, of course, would make pinpointing all of this a simple task, but you can certainly do this without those tests.
Remember that it takes much longer for the damage caused by gluten to heal, than it takes for the damage caused by any of the other food sensitivities to heal, so it's important to cut out gluten, right off the bat, and avoid it meticulously, even trace amounts. (Believe it or not, it takes years for the gut to completely heal from gluten damage, but you can achieve remission much sooner than that, of course).
Here is how I would go about it: I would start by cutting out all gluten and all dairy products from my diet. If I didn't see any results after 3 or 4 months, I would also cut out soy, at that point. If that didn't make any noticeable difference after a week, I would also cut out eggs. I certainly wouldn't give up before at least 6 months, even if I weren't seeing any improvement at all. In fact, it took me a year and a half to reach remission, but that was because I didn't cut out all of my food sensitivities at the same time, (I only cut out gluten, the whole time). I finally got tired of playing games, and cut out all of that other stuff, and within a couple of weeks, I was in remission.
If you take Entocort, it will allow you to reach remission much sooner than using diet changes alone. Many members who are using Entocort, in addition to the diet, see improvement in 2 or 3 weeks, (some see even faster results), but it can take 6 or 8 weeks for many people, and sometimes longer, in a few cases. We are all different in the way that we respond to treatment, and the more damage that we have accumulated in our intestines, the longer it takes to heal.
Fiber is not our friend, with this disease, so we have minimize it, while we are recovering. It doesn't cause MC, but it can keep us from recovering. That means that all fruits and vegetables should be peeled, and well-cooked, except for bananas, of course - bananas can be eaten raw, (peel them though,
). Most of us react to all citrus fruits, so they should be avoided while healing. In fact, most people do better if they avoid all fruits, while recovering, and vegetables should be overcooked, because they are easier to digest that way. Iceberg lettuce should always be avoided, but if you simply have to try a salad, use romaine lettuce, or one of the other types that is easier to digest. Sugar should be minimized, and all artificial sweeteners should be avoided, because most of us react to them while we are healing.
Good luck with this, and never hesitate to ask any questions, anytime you're not sure about anything. There's no point in taking a chance on getting sick, just because you're not sure about some ingredient, or something else. Please keep us updated.
Tex
Yes, either one of those drugs would be a much better choice to start with. Not only are they safer for your immune system, but they will work faster, especially the Entocort.
Most of us are sensitive to gluten and all dairy products. About half of us are also sensitive to soy. Probably less than a fourth to a third of us are sensitive to eggs, and fewer still are sensitive to yeast, and various other proteins. The Enterolab tests, of course, would make pinpointing all of this a simple task, but you can certainly do this without those tests.
Remember that it takes much longer for the damage caused by gluten to heal, than it takes for the damage caused by any of the other food sensitivities to heal, so it's important to cut out gluten, right off the bat, and avoid it meticulously, even trace amounts. (Believe it or not, it takes years for the gut to completely heal from gluten damage, but you can achieve remission much sooner than that, of course).
Here is how I would go about it: I would start by cutting out all gluten and all dairy products from my diet. If I didn't see any results after 3 or 4 months, I would also cut out soy, at that point. If that didn't make any noticeable difference after a week, I would also cut out eggs. I certainly wouldn't give up before at least 6 months, even if I weren't seeing any improvement at all. In fact, it took me a year and a half to reach remission, but that was because I didn't cut out all of my food sensitivities at the same time, (I only cut out gluten, the whole time). I finally got tired of playing games, and cut out all of that other stuff, and within a couple of weeks, I was in remission.
If you take Entocort, it will allow you to reach remission much sooner than using diet changes alone. Many members who are using Entocort, in addition to the diet, see improvement in 2 or 3 weeks, (some see even faster results), but it can take 6 or 8 weeks for many people, and sometimes longer, in a few cases. We are all different in the way that we respond to treatment, and the more damage that we have accumulated in our intestines, the longer it takes to heal.
Fiber is not our friend, with this disease, so we have minimize it, while we are recovering. It doesn't cause MC, but it can keep us from recovering. That means that all fruits and vegetables should be peeled, and well-cooked, except for bananas, of course - bananas can be eaten raw, (peel them though,
). Most of us react to all citrus fruits, so they should be avoided while healing. In fact, most people do better if they avoid all fruits, while recovering, and vegetables should be overcooked, because they are easier to digest that way. Iceberg lettuce should always be avoided, but if you simply have to try a salad, use romaine lettuce, or one of the other types that is easier to digest. Sugar should be minimized, and all artificial sweeteners should be avoided, because most of us react to them while we are healing.Good luck with this, and never hesitate to ask any questions, anytime you're not sure about anything. There's no point in taking a chance on getting sick, just because you're not sure about some ingredient, or something else. Please keep us updated.
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 gather from this quote that you are still taking Entocort and still having problems. I initially responded very well to Entocort, though it did take 3-4 weeks for it to kick in. However, after trying an elimination diet eating food to which I was very intolerant (unbeknownst to me at the time), my gut was extremely inflamed. It took 6 months of eliminating even more foods than the ones I'd already identified before I began to see normal BMs again.Crystal wrote:Still taking 9mg a day of entocort been doing that for over a year can't come off or lower dosage.
It really is too bad that you can't get the Enterolab testing done because it would answer a lot of questions. The next best thing is to follow Tex's suggested food elimination guide. It sounds like you are multiply intolerant, and ferreting out your food problems is more complicated for those of us with multiple intolerances.
Remember that we are here to help you. We have a great deal of experience amongst us and have likely been there, done that.
Good luck with your decision.
Gloria
You never know what you can do until you have to do it.
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crystal552000
- Little Blue Penguin
- Posts: 38
- Joined: Sat May 08, 2010 8:14 am
- Location: kansas city Mo
gloria you are exactly right I have been on enotocort 9 mg a day for over a year now and still having problems. I think my GI was even shocked to see that I am still having issues which is why he ordered that last colonoscopy just to make for sure, because I should have responded to the medication especially after this long. I am going to try the diet that tex has put above but I think I may just do it all at once. I don't eat much of those things as it is, except the gluten i eat it all the time just not so much in the form of bread mainly on things like batters and what not. So i will try to eliminate all this for 6 months like he said then if I still don't have any resolve i will consider the imuran but only as a last resort. That drug is scary I think the entocort is bad enough just because of the duration that I have been on it. Thanks for the information and I will let you know how things are turning out for me.
Tex I love and eat salad all the time however I usually buy either romaine lettuce or the spring mix, are both of these ok. I haven't ate iceburg in years that was one of the first things i noticed that went undigested, so I immediately quit eating it took me a couple of months to figure out I could just eat a different kind of lettuce I think i was scared to even try something. Undigested food doesnt make for a very happy back side
Tex I love and eat salad all the time however I usually buy either romaine lettuce or the spring mix, are both of these ok. I haven't ate iceburg in years that was one of the first things i noticed that went undigested, so I immediately quit eating it took me a couple of months to figure out I could just eat a different kind of lettuce I think i was scared to even try something. Undigested food doesnt make for a very happy back side
Crystal,
I am a big fan of the "all at once" approach (because it really helped me), and you sound like you're ready to feel better, so - good for you. You clearly have what it takes (figuring out about iceberg vs. romaine was good thinking), and please keep us posted and let us know how we can help you.
Good luck, and here's hoping you feel better soon,
Sara
I am a big fan of the "all at once" approach (because it really helped me), and you sound like you're ready to feel better, so - good for you. You clearly have what it takes (figuring out about iceberg vs. romaine was good thinking), and please keep us posted and let us know how we can help you.
Good luck, and here's hoping you feel better soon,
Sara
Crystal,
Yes, you are correct - cutting all suspect foods out of the diet at once, is by far the best method. I was afraid to recommend that, because so many people seem to feel overwhelmed at the prospect of cutting out more than one or two foods from their diet. They always ask, "but what will I eat?", as if there are no options left, and they're afraid to even try. Definitely, if you are willing, that's the best way to go - it's the fastest way to reach remission. Going that route, you can fine tune your diet if it seems necessary, and once you achieve remission, and stabilize for a while, then you can test some of the foods that you have been avoiding, by adding them back one at a time, to see if you are actually sensitive to them.
Some of us can tolerate salads, and some cannot, both because of the high fiber content, and the irritating nature of raw vegetables when our intestines are inflamed, so you will have to figure out if salads are a problem for you or not. It's even possible that fiber may be the reason why you have been unable to achieve remission on a GF diet, because fiber is very, very irritating to intestines that are already highly inflamed. Fiber works to promote improved motility by actually tearing cells in the mucosa of the colon. The damaged cells trigger the release of additional mucus, (which acts as a protective coating), and the mucus improves motility.
If you do find that you can tolerate salads, (of course, you may have to fine tune the ingredients), as you have already discovered, just about any type of lettuce is better than iceberg. Beyond that, I don't know much about this topic. We haven't really done any careful testing of things such as that, but we have found that romaine, and one or two others, do seem to work OK for some members here.
Once you get to the point of stable remission with Entocort and diet, then after a while, you can try reducing the Entocort, to see if there are any other undetected food sensitivities in your diet, that the Entocort has been masking.
Tex
Yes, you are correct - cutting all suspect foods out of the diet at once, is by far the best method. I was afraid to recommend that, because so many people seem to feel overwhelmed at the prospect of cutting out more than one or two foods from their diet. They always ask, "but what will I eat?", as if there are no options left, and they're afraid to even try. Definitely, if you are willing, that's the best way to go - it's the fastest way to reach remission. Going that route, you can fine tune your diet if it seems necessary, and once you achieve remission, and stabilize for a while, then you can test some of the foods that you have been avoiding, by adding them back one at a time, to see if you are actually sensitive to them.
Some of us can tolerate salads, and some cannot, both because of the high fiber content, and the irritating nature of raw vegetables when our intestines are inflamed, so you will have to figure out if salads are a problem for you or not. It's even possible that fiber may be the reason why you have been unable to achieve remission on a GF diet, because fiber is very, very irritating to intestines that are already highly inflamed. Fiber works to promote improved motility by actually tearing cells in the mucosa of the colon. The damaged cells trigger the release of additional mucus, (which acts as a protective coating), and the mucus improves motility.
http://www.sciencedaily.com/releases/20 ... 093156.htmIf you ever wondered just how a high-fiber diet helps keep you, well, "regular," scientists may have the answer.
Their results suggest that as these bulky foods make their way down the gastrointestinal tract, they run into cells, tearing them and freeing lubricating mucus within.
If you do find that you can tolerate salads, (of course, you may have to fine tune the ingredients), as you have already discovered, just about any type of lettuce is better than iceberg. Beyond that, I don't know much about this topic. We haven't really done any careful testing of things such as that, but we have found that romaine, and one or two others, do seem to work OK for some members here.
That's for sure. And it doesn't provide much nutrition, either.Crystal wrote:Undigested food doesnt make for a very happy back side
Once you get to the point of stable remission with Entocort and diet, then after a while, you can try reducing the Entocort, to see if there are any other undetected food sensitivities in your diet, that the Entocort has been masking.
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.