I am in week 3 of my elimination diet. Overall I feel really good - it has helped me to identify some of the food chemicals I am sensitive to. I have started to have some formed stools, but not consistently. I truly do feel like my immune system is finally calming down.
Here's the breakdown for foods I am reactive to:
Highly reactive: salicylic acid, lecithin, lettuce and tapioca
Moderately reactive: Wheat, amaranth, grapes, oranges, strawberries, cantaloupe, apple, blueberry, apricot, broccoli, green peppers, sweet potato, asparagus, tomato, cabbage, caluiflower, beef, turkey, yeast, cashew, pistachio, almond, lima bean, sesame, cane sugar, lemon, paprika, black pepper, cayenne, and the food chemicals are: capsaicin, solanine, FD&C blue #2, sorbic acid, MSG, sodium sulfite, saccharin. For each of these foods I need to test my response with an oral challenge. I am still working my way through my safe foods, so I am still a few weeks off. I did cheat and had a burger one night and felt very bloated for a few hours. Other than that I have stayed on the diet.
The foods I react to don't necessarily cause diarrhea. In some cases it just means digestive upset or GERD or some other symptom. For example, I always knew almonds gave me heartburn. I have not experienced GERD with any of my safe foods.
I was not reactive to corn, so I added it back this week - in a big way. It tasted so good to have corn tortillas that I went a little crazy. Corn has lecithin and I noticed that my skin felt really oily, like it did when I was eating alot of soy. Lecithin comes from grains, peanuts, legumes and eggs. My reaction wasn't as intense as it was with soy or peanuts but my D acted up a bit and I do believe it's the lecithin as it's a dose response. I am very afraid to try legumes but I will challenge lentils this week as it is on my safe list. If I react to it, it will either be due to fiber or lecithin. I really miss beans. I have noticed that I have a bit of a problem with most fats and I really have to watch the amounts. Chips of any kind make me feel awful and certainly make my D worse.
I was also not reactive to potatoes but I am reactive to solanine, which is also a dose response food chemical. I had potatoes several meals in a row about 10 days ago and I did notice achiness in my fingers. So I can eat potatoes and eggplant, but in small quantities. Solanine is associated with achiness and arthritis.
I was already aware of my salicylate problem and have learned to cycle high and low foods. Salicylates are also dose response. My body clearly likes to hang onto chemicals - I don't clear them easily. From reading old threads it appears that many people on this site have the same issue with various food chemicals.
I ate some salmon out in a restaurant and had a huge sulfite reaction - it must have been coated in a sulfiting agent. I am certain I had sulfite reactions in the past but didn't know what they were. First I felt nasal stuffiness, then I felt very hot and got a headache and tachy. And then I got explosive D. For several days after I was very sensitive to foods with natural sulfites, which normally don't bother me. That was right at the beginning and all of those symptoms are now gone. Of all of my food reactions the sulfites scare me the most.
I always knew I had trouble with spicy foods . . .capsaicin, cayenne. I also knew too many tomato products didn't agree with me (but I love them). I also love cabbage family vegetables but they did cause a big gas and bloating problem. I hardly fart at all on the elimination diet.
The test would have worked to eliminate gluten and soy. Because I was moderately reactive to wheat and highly reactive to lecithin, my elimination diet would have helped get rid of my major symptoms. I am off of dairy, mostly by choice. I was right on the borderline with my Enterolab test but my son was highly reactive, so we all got off dairy - added benefit was it got rid of my mild headaches.
Overall I am pleased with the elimination diet and think the test is very accurate. I really beleive my immune system is calming down. I am really fine tuning my diet based on the results. By starting out with ony safe foods and adding back one food at a time, it is easy to track responses. Dietitians who are proponents of this test are using it for a wide variety of symptoms and disorders, in both children and adults. Time will tell if it helps to calm my immune system and can help in the healing process. I am very motivted to use diet as an anti-inflammatory instead of meds.
Gloria and Polly, I am curious to know if you have some of the same food intolerances. We are all double DQ1.
Take care,
Mary Beth
MRT update
Moderators: Rosie, JFR, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh, mbeezie
That sounds pretty encouraging, (and very enlightening). You've been mighty busy.
Thanks for the update.
Tex
Thanks for the update.
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.
Mary Beth,
I just spent over 15 minutes writing a response, but must have pressed the left arrow key by mistake. I lost my entire response and can't seem to get it back. It's too late tonight to recreate it, so I'll try another time. I don't think my response will be too helpful, but I'll do my best when I can.
Gloria
I just spent over 15 minutes writing a response, but must have pressed the left arrow key by mistake. I lost my entire response and can't seem to get it back. It's too late tonight to recreate it, so I'll try another time. I don't think my response will be too helpful, but I'll do my best when I can.
Gloria
You never know what you can do until you have to do it.
Luce,
Everyone who takes the test will have a list of sensitivities. My guess is those of us still not in remission will have more, but one should gain tolerance over time. Many peopel with MC know that they couldn't tolerate many foods initially but gained tolerance over time. I will re-test at some point to see if my sensitivites have changed.
Most people would say they are not intolerant to foods because they learn to accept certain symptoms as normal, or part of the aging process. For example, when I started having joint pain and went to my doctor, he just dismissed it as a normal age related development. I no longer have joint pain despite the fact that I continue to age! Also, I beleive many people know certain foods cause digestive upset, but eat them anyway. Food sensitivities cause symptoms both inside and outside the GI tract. All of these symptoms are immune responses and if you want to calm your immune system you need to avoid these foods. For obvious reasons this group only focuses on foods that cause diarrhea, but my beleif is that the best diet for remission is one that causes the least amount of inflammation, regardless of the symptom. The whole purpose of taking drugs like Entocort is to decrease inflammation, but I think it's important to not add fuel to the fire by eating foods that cause inflammation.
I am only in week 3 and it should take about 6 weeks for my immune system to relax . . .at least that's what others report who use this test. I do have numerous intolerances at the moment but am hopeful that this will change over time. I'll keep everyone posted on my progress.
Mary Beth
Everyone who takes the test will have a list of sensitivities. My guess is those of us still not in remission will have more, but one should gain tolerance over time. Many peopel with MC know that they couldn't tolerate many foods initially but gained tolerance over time. I will re-test at some point to see if my sensitivites have changed.
Most people would say they are not intolerant to foods because they learn to accept certain symptoms as normal, or part of the aging process. For example, when I started having joint pain and went to my doctor, he just dismissed it as a normal age related development. I no longer have joint pain despite the fact that I continue to age! Also, I beleive many people know certain foods cause digestive upset, but eat them anyway. Food sensitivities cause symptoms both inside and outside the GI tract. All of these symptoms are immune responses and if you want to calm your immune system you need to avoid these foods. For obvious reasons this group only focuses on foods that cause diarrhea, but my beleif is that the best diet for remission is one that causes the least amount of inflammation, regardless of the symptom. The whole purpose of taking drugs like Entocort is to decrease inflammation, but I think it's important to not add fuel to the fire by eating foods that cause inflammation.
I am only in week 3 and it should take about 6 weeks for my immune system to relax . . .at least that's what others report who use this test. I do have numerous intolerances at the moment but am hopeful that this will change over time. I'll keep everyone posted on my progress.
Mary Beth
Mary Beth, fellow double DQ1-er,
This is so interesting!
I'm sure I would have had many similar reactions back when I had active MC. Now that I eat like a cavewomen, I do so much better and suspect that I am able to tolerate many more foods because my gut has calmed down. A question - could you let us know a sample day's menu?
Thanks.
Polly
This is so interesting!
I'm sure I would have had many similar reactions back when I had active MC. Now that I eat like a cavewomen, I do so much better and suspect that I am able to tolerate many more foods because my gut has calmed down. A question - could you let us know a sample day's menu?
Thanks.
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
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RUBYREDDOG
- Adélie Penguin
- Posts: 158
- Joined: Tue Jun 10, 2008 4:45 pm
- Location: Glendale, Ca.
Mary Beth,
Congratulations on your progress. Its a huge step from constant D to the formation of a normal bm. Even if you are still having some problems, your progress is remarkable and it shows that you are very proactive with this disease. I like your approach, as far as your diet is concerned.
Don't be surprised if you hit a few bumps in the road. Many of us have, and it seems that just about the time we think we have this figured out, a new food irritant shows up. But you should be very proud of your progress to date and we are all pulling for your complete success.
Hotrod
P.S. One final note, In our discussions about Entocort, I don't believe it has been documented that it actually reduces inflammation of the gut. It is my understanding that it suppresses the production of Cortisol, which is produced by the Adrenal gland. I don't know how this reduces/eliminates the symptoms of MC but I know it works great for me. I hope I am giving you correct information here and if anyone can shed more light on this subject I welcome your response.
Congratulations on your progress. Its a huge step from constant D to the formation of a normal bm. Even if you are still having some problems, your progress is remarkable and it shows that you are very proactive with this disease. I like your approach, as far as your diet is concerned.
Don't be surprised if you hit a few bumps in the road. Many of us have, and it seems that just about the time we think we have this figured out, a new food irritant shows up. But you should be very proud of your progress to date and we are all pulling for your complete success.
Hotrod
P.S. One final note, In our discussions about Entocort, I don't believe it has been documented that it actually reduces inflammation of the gut. It is my understanding that it suppresses the production of Cortisol, which is produced by the Adrenal gland. I don't know how this reduces/eliminates the symptoms of MC but I know it works great for me. I hope I am giving you correct information here and if anyone can shed more light on this subject I welcome your response.
Hotrod,
You've raised a very good point. Dr. Fine himself points out that the corticosteroids will not totally eliminate intestinal inflammation. With budesonide, in particular, the effect seems to be topical, (rather than systemic), and the effect is dose-dependent, of course. (All of the other corticosteroids apparently work by means of a systemic effect).
Note the results of this research project, in which plain budesonide, at 200 μg/kg/day, significantly reduced plasma cortisol levels, but it did not significantly reduce inflammation. At a dosage rate of 800 μg/kg/day, however, it did significantly suppress intestinal inflammation, and, of course, it also further suppressed blood cortisol levels. Controlled-Ileal-Release, (CIR), budesonide, (IOW, Entocort EC), at 200 μg/kg/day was as effective at suppressing inflammation, as plain, (no enteric coating), budesonide at 800 μg/kg/day. IOW, it has to be applied in the correct location, since it has little systemic action.
To put those numbers into perspective, (provided my math is correct), a 200 μg/kg/day dosage rate would be the equivalent of 13.6 mg per day, for a person who weighs 150 lbs. The 800 μg/kg/day dose would amount to 54.4 mg per day - a pretty hefty dose, to say the least, (the normal label dose is 9 mg per day, of course). 54.4 mg per day would be almost 6 times the recommended label dose.
The bottom line is that Entocort EC works, primarily because of it's enteric coating. When properly delivered, it does significantly suppress inflammation, but it obviously will not totally control inflammation for most patients, unless they happen to be fortunate enough that their inflammation happens to lie in the areas where Entocort EC is able to deliver the budesonide. IOW, for most of us, it will definitely help, but some areas of inflammation will almost surely lie outside of the area of treatment. Most likely, those with inflammation in their duodenum and jejunum, and/or the terminal colon, (the Sigmoid colon, and below), may have inflammation that cannot be effectively controlled by Entocort EC. At least that's the way I see it. Of course, the GI docs insist that MC is a disease of the colon, (only), but that is only partially correct, for many of us.
http://cat.inist.fr/?aModele=afficheN&cpsidt=3694097
Tex
You've raised a very good point. Dr. Fine himself points out that the corticosteroids will not totally eliminate intestinal inflammation. With budesonide, in particular, the effect seems to be topical, (rather than systemic), and the effect is dose-dependent, of course. (All of the other corticosteroids apparently work by means of a systemic effect).
Note the results of this research project, in which plain budesonide, at 200 μg/kg/day, significantly reduced plasma cortisol levels, but it did not significantly reduce inflammation. At a dosage rate of 800 μg/kg/day, however, it did significantly suppress intestinal inflammation, and, of course, it also further suppressed blood cortisol levels. Controlled-Ileal-Release, (CIR), budesonide, (IOW, Entocort EC), at 200 μg/kg/day was as effective at suppressing inflammation, as plain, (no enteric coating), budesonide at 800 μg/kg/day. IOW, it has to be applied in the correct location, since it has little systemic action.
To put those numbers into perspective, (provided my math is correct), a 200 μg/kg/day dosage rate would be the equivalent of 13.6 mg per day, for a person who weighs 150 lbs. The 800 μg/kg/day dose would amount to 54.4 mg per day - a pretty hefty dose, to say the least, (the normal label dose is 9 mg per day, of course). 54.4 mg per day would be almost 6 times the recommended label dose.
The bottom line is that Entocort EC works, primarily because of it's enteric coating. When properly delivered, it does significantly suppress inflammation, but it obviously will not totally control inflammation for most patients, unless they happen to be fortunate enough that their inflammation happens to lie in the areas where Entocort EC is able to deliver the budesonide. IOW, for most of us, it will definitely help, but some areas of inflammation will almost surely lie outside of the area of treatment. Most likely, those with inflammation in their duodenum and jejunum, and/or the terminal colon, (the Sigmoid colon, and below), may have inflammation that cannot be effectively controlled by Entocort EC. At least that's the way I see it. Of course, the GI docs insist that MC is a disease of the colon, (only), but that is only partially correct, for many of us.
http://cat.inist.fr/?aModele=afficheN&cpsidt=3694097
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.
Hey all
Thought I would chime in hear since it is a subject close to my heart.
Yoga, meditation, stretching and exercise have all been proven to reduce cortisol levels. Ha Ha Ha! How easy is that ?
Not knowing the connection I just found that Yoga, meditation, stretching and exercise made me feel much better and often times great.
Wasn’t till later that I found studies that found a connection with all those things to suppressing the production of Cortisol
Google yoga cortisol and find lots of interesting reading.
The nicest thing is that it is cheap, you don’t need a prescription and the side effect are only good.
And it is really fun!
To your continued recover-
Love
Matthew
Thought I would chime in hear since it is a subject close to my heart.
Yoga, meditation, stretching and exercise have all been proven to reduce cortisol levels. Ha Ha Ha! How easy is that ?
Not knowing the connection I just found that Yoga, meditation, stretching and exercise made me feel much better and often times great.
Wasn’t till later that I found studies that found a connection with all those things to suppressing the production of Cortisol
Google yoga cortisol and find lots of interesting reading.
The nicest thing is that it is cheap, you don’t need a prescription and the side effect are only good.
And it is really fun!
To your continued recover-
Love
Matthew
Tex,
I am curious about the dosages for Budesonide that you worked out.
The Pulmicort Turbohaler I am supposed to take twice daily (asthma) gives 200mg of Budesonide - so 400mg a day. Are you saying that 54mg of 'regular' Budesonide would be the equivalent of 9mg of EC? If that is the case my 400mg should theoretically control my MC.
Or does the inhaled form means less of it gets into the system?
My MC is better controlled than many here, but eating the wrong thing still involves a cost. I wonder if I would have more problems if I stopped the Pulmicort.
Lyn
I am curious about the dosages for Budesonide that you worked out.
The Pulmicort Turbohaler I am supposed to take twice daily (asthma) gives 200mg of Budesonide - so 400mg a day. Are you saying that 54mg of 'regular' Budesonide would be the equivalent of 9mg of EC? If that is the case my 400mg should theoretically control my MC.
Or does the inhaled form means less of it gets into the system?
My MC is better controlled than many here, but eating the wrong thing still involves a cost. I wonder if I would have more problems if I stopped the Pulmicort.
Lyn
Lyn, are you sure it's not 200 mcg (micrograms), instead of 200 mg (milligrams)? The reason I ask is that I take a steroid inhaler (Flovent, containing fluticasosone as it's steroid) and the dosage is 220 mcg twice per day, or 440 mcg. A milligram is 1000 times more than a microgram.
The lower dose is because the inhaled steroid is delivered directly to the bronchial tubes, and very little supposedly escapes into the general circulation, kind of analaglous to Enterocort.
I only use the Flovent when I am recovering from a respiratory infection and have bronchitis. Otherwise my asthma isn't too bad. Before I really developed severe diarrhea about 4 months ago and was diagnosed with LC, I had periodic digestive problems. I noticed that when I happened to be using my Flovent inhaler, the symptoms would get much better. However, once I developed severe problems, the Flovent didn't seem to do much, no doubt because the amount of steroid getting into the general circulation was so tiny.
Rosie
The lower dose is because the inhaled steroid is delivered directly to the bronchial tubes, and very little supposedly escapes into the general circulation, kind of analaglous to Enterocort.
I only use the Flovent when I am recovering from a respiratory infection and have bronchitis. Otherwise my asthma isn't too bad. Before I really developed severe diarrhea about 4 months ago and was diagnosed with LC, I had periodic digestive problems. I noticed that when I happened to be using my Flovent inhaler, the symptoms would get much better. However, once I developed severe problems, the Flovent didn't seem to do much, no doubt because the amount of steroid getting into the general circulation was so tiny.
Rosie
Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time………Thomas Edison
Polly,
Today I had coffee with rice milk and oatmeal with pecans and a touch of cinnamon and maple syrup for breakfast. For lunch I had some chicken and rice soup (had carrots, celery, onions and parsley). I had a mango smoothie (frozen mango, touch of honey, rice milk) and some walnuts for a snack. For dinner I had grilled salmon and yellow squash. I'll have a cup of tea later
Other foods I have been able to tolerate: Rice pasta, chicken, pesto (basil, walnuts, garlic and EVOO), lamb chops, potato (no skin), Whole Foods nitrite free bacon and maple pork sausage, pork tenderloin, tilapia, cooked spinach,mushrooms, watermelon, sunflower seeds, banana, quinoa, raspberries, pineapple, eggplant, canned pears, rice cakes, banana and avocado. Everyday I add a new food and test my response. I have alot of foods left to test, so I am hopeful that I will continue to add more variety. Once my immune system is calmed down then I can test some of my reactive foods and possibly tolerate them on a rotational basis.
Matthew,
I couldn't agree more. Exercise is very important to bring stress under control. Also, it's a natural anti-depressant. I have been feeling alot of sadness about my illness - missing my former carefree life and obsessing about how things have changed. I don't think these feelings can be avoided with this or any chronic illness. Spending too much time on the computer wasn't helping either. I made a conscious effort to get off of the computer and get back to the gym and it is really helping - possibly also contributing to me having some better days.
Hotrod,
I fully expect some bumps in the road. In fact, from what I am learning, sensitivities change over time. The nice thing about the program I am following is that it teaches you the process of discerning and managing food sensitivities. For example, some people may get more symptomatic seasonally or when under stress, and they may react to foods they never reacted to in the past. By learning how to test and rotate foods, you can manage food sensitivity symptoms no matter what they are. Just because you don't tolerate a food one day, doesn't mean you never will. Often times it is the amount of food and how often you are eating particular foods that seems to be the critical factor. I am not referring to gluten, dairy, soy etc, but the other "irritants".
Thanks for all your positive comments!
Mary Beth
Today I had coffee with rice milk and oatmeal with pecans and a touch of cinnamon and maple syrup for breakfast. For lunch I had some chicken and rice soup (had carrots, celery, onions and parsley). I had a mango smoothie (frozen mango, touch of honey, rice milk) and some walnuts for a snack. For dinner I had grilled salmon and yellow squash. I'll have a cup of tea later
Other foods I have been able to tolerate: Rice pasta, chicken, pesto (basil, walnuts, garlic and EVOO), lamb chops, potato (no skin), Whole Foods nitrite free bacon and maple pork sausage, pork tenderloin, tilapia, cooked spinach,mushrooms, watermelon, sunflower seeds, banana, quinoa, raspberries, pineapple, eggplant, canned pears, rice cakes, banana and avocado. Everyday I add a new food and test my response. I have alot of foods left to test, so I am hopeful that I will continue to add more variety. Once my immune system is calmed down then I can test some of my reactive foods and possibly tolerate them on a rotational basis.
Matthew,
I couldn't agree more. Exercise is very important to bring stress under control. Also, it's a natural anti-depressant. I have been feeling alot of sadness about my illness - missing my former carefree life and obsessing about how things have changed. I don't think these feelings can be avoided with this or any chronic illness. Spending too much time on the computer wasn't helping either. I made a conscious effort to get off of the computer and get back to the gym and it is really helping - possibly also contributing to me having some better days.
Hotrod,
I fully expect some bumps in the road. In fact, from what I am learning, sensitivities change over time. The nice thing about the program I am following is that it teaches you the process of discerning and managing food sensitivities. For example, some people may get more symptomatic seasonally or when under stress, and they may react to foods they never reacted to in the past. By learning how to test and rotate foods, you can manage food sensitivity symptoms no matter what they are. Just because you don't tolerate a food one day, doesn't mean you never will. Often times it is the amount of food and how often you are eating particular foods that seems to be the critical factor. I am not referring to gluten, dairy, soy etc, but the other "irritants".
Thanks for all your positive comments!
Mary Beth
Lyn,
I didn't look up the dosage rate of those inhalers, but I suspect that Rosie is quite correct. 200 mg of budesonide would be an extremely large dose. I apparently confused the issue with my previous post, when I used the Greek symbol μ. When I said, " 54.4 mg per day would be almost 6 times the recommended label dose", I meant that 54.4 mg would be almost 6 times the normal dose of 9 mg per day.
The recommended dose of budesonide for intestinal inflammation is approximately 200 μg/kg/day. The μ, (mu is the 12th letter in the Greek alphabet), does indeed mean micro, or one one-thousandth of a milligram. IOW, 200 μg/kg/day, means 200 micrograms, per kilogram of body weight, per day.
200 mcg, (the inhaler dose), would therefore be only a small fraction of the normal dose for treating an IBD, (it would be equivalent to roughly a normal 9 mg dose of Entocort EC, divided by your body weight in kilograms, IOW).
Remember, also, that budesonide has to be applied topically to the target area. Because of that, as Rosie pointed out, since inhaled budesonide is applied to the respiratory system, there is very little possibility that any significant amount of it could migrate to the GI tract, even if a much larger dose were inhaled.
At least that's the way I see it.
Tex
I didn't look up the dosage rate of those inhalers, but I suspect that Rosie is quite correct. 200 mg of budesonide would be an extremely large dose. I apparently confused the issue with my previous post, when I used the Greek symbol μ. When I said, " 54.4 mg per day would be almost 6 times the recommended label dose", I meant that 54.4 mg would be almost 6 times the normal dose of 9 mg per day.
The recommended dose of budesonide for intestinal inflammation is approximately 200 μg/kg/day. The μ, (mu is the 12th letter in the Greek alphabet), does indeed mean micro, or one one-thousandth of a milligram. IOW, 200 μg/kg/day, means 200 micrograms, per kilogram of body weight, per day.
200 mcg, (the inhaler dose), would therefore be only a small fraction of the normal dose for treating an IBD, (it would be equivalent to roughly a normal 9 mg dose of Entocort EC, divided by your body weight in kilograms, IOW).
Remember, also, that budesonide has to be applied topically to the target area. Because of that, as Rosie pointed out, since inhaled budesonide is applied to the respiratory system, there is very little possibility that any significant amount of it could migrate to the GI tract, even if a much larger dose were inhaled.
At least that's the way I see it.
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.
-
RUBYREDDOG
- Adélie Penguin
- Posts: 158
- Joined: Tue Jun 10, 2008 4:45 pm
- Location: Glendale, Ca.
Tex,
Thankyou for clearing up the Entocort/inflammation relationship. ("When properly delivered, it does significantly suppress inflammation") Your explanation, as always, was well presented. Some day if you have some time to kill, I would like to get your take on the Cortisol reducing effect of Entocort, and how this helps to reduce our symptoms. Just something I have thought about lately. (an engineers curiosity of how things work)
I feel fortunate that Entocort works so well for me. I tried to reach remission through diet alone for 9 months. With the help of Imodium several times a week, I was having mixed results. When I finally decided to try Entocort, it worked within a few days to bring about formed bm's. I'm now alternating between 3mg and 6mg dosages per day. So far so good. I would like to some day eliminate it all together but something Gloria posted a few days ago has me rethinking that position. She asked why we should be so intent on eliminating Entocort as a maintenance drug, if we have no side effects? If we have high blood pressure or cholesterol most of us accept that we must take prescription drugs to control those conditions. Does Entocort fall into that category as well? Maybe the "steroid" label scares us a little. Just thinking out loud here, these questions and more, are things we all must work out for ourselves.
Hotrod
Thankyou for clearing up the Entocort/inflammation relationship. ("When properly delivered, it does significantly suppress inflammation") Your explanation, as always, was well presented. Some day if you have some time to kill, I would like to get your take on the Cortisol reducing effect of Entocort, and how this helps to reduce our symptoms. Just something I have thought about lately. (an engineers curiosity of how things work)
I feel fortunate that Entocort works so well for me. I tried to reach remission through diet alone for 9 months. With the help of Imodium several times a week, I was having mixed results. When I finally decided to try Entocort, it worked within a few days to bring about formed bm's. I'm now alternating between 3mg and 6mg dosages per day. So far so good. I would like to some day eliminate it all together but something Gloria posted a few days ago has me rethinking that position. She asked why we should be so intent on eliminating Entocort as a maintenance drug, if we have no side effects? If we have high blood pressure or cholesterol most of us accept that we must take prescription drugs to control those conditions. Does Entocort fall into that category as well? Maybe the "steroid" label scares us a little. Just thinking out loud here, these questions and more, are things we all must work out for ourselves.
Hotrod
Hi Hotrod,
The reason that most of us prefer to control things with diet alone is because most people only want to take medication when absolutely necessary. Obviously, if medication is the only way one can control symptoms of anything, they should not feel there is anything wrong with that as in the examples you mentioned.
For example, I have been in remission for M.C. and other autoimmune conditions for years with just diet, but a related condition, osteoporosis may NOT get better if I don't start on medication to build up my bones soon.
Of course, I'm putting it off, thinking that some day my body will begin to absorb all the nutrients from the good, healthy food I'm eating, but it just appears I'm going to have to cave on this one before it's too late, and take the medications, despite possible side effects that I wouldn't want to have. My sister has already done her initial doses, and seems to be handling that fine, which is easing my concerns about it a bit.
Besides the long term concerns about taking any medications longer than absolutely necessary, there is the cost and convenience factor as this particular medication isn't cheap, and it requires more frequent doctor visits. For some that means loss of income from missed time at work, and for me, it means additional hours for a paid caregiver to stay with my mother while I'm gone to the doctor. I NEVER see a doctor for the M.C., but just for my replacement hormones with the endo, and then, he evaluates my bone situation along with the radiologist. That's only once a year for the endochrinologist, so I can handle that.
Early on among our group members, the reason people starting the diet were starting to take Entocort in the first place was to try to control the diarrhea while they were learning the enormous amount of things one has to learn to completely remove just the gluten part alone from the diet. That way, they could have some quality of life while spending a couple of hours in the grocery store reading labels! Ha! Their intention was never to remain on Entocort in the first place, but rather, once they felt they had a good handle on how to remain on the diet, to slowly wean themselves off of it so that they could tell if they were still getting gluten somewhere in the diet that still needed to be found and the source eliminated. There was no other way to judge that without being completely off the masking medication.
Many of those who were able to successfully wean off the medications were able to control their symptoms with diet alone, and we don't hear from them all that often anymore, most likely because the diet has become a way of life for them now, and they are just busy doing other things. One example comes to mind, Karen, better know around here as "more muscles." When we hear from here, she's usually just run a marathon of some type or is preparing for one. That is encouraging to me, but I'm sure I'll never run one of those!
I would never recommend to anyone that they continue eating things for which they have abnormally high levels of stool antibodies to according to E.Lab, regardless of how well controlled they were from medications. That does not mean I don't recognize that when all these efforts fail, a person will sometimes need the lowest possible maintenance drug of the safest medication out there that works for them as an adjunct to the appropriate dietary measures.
I'm sure I'm not the only one here to be alive because of the advent of antibiotics, so even if the antibiotics had long term consequences leading to some of my later-in-life problems, I've had a pretty good quality of life in the interim, prior to M.C. et al, so I think taking those antibiotics was a pretty good idea. It's nice to have things like that to fall back on when everything else fails.
If I were insulin dependent, I would certainly take insulin, but if ever I have trouble with my blood sugars, I will certainly try immediately to adjust my diet in hopes of returning my blood levels to normal without medications, although I don't believe my diet would encourage type II diabetes as it stands as I eat a healthier diet than those who eat out alot, just because I eat home cooked foods made with high quality ingredients since going free of my sensitivities.
That is one of the fringe benefits of watching what we eat -- we tend to read more about nutrition and food preparation in general. We also tend to get more variety than other people as we try more things to keep from getting bored with our meals.
Off so much of the processed foods, we tend to build back up our ability to taste things, so foods begin to actually taste better, opening up more possibilities for meals. I've discovered I actually like some of the vegetables I didn't think I liked growing up, but then it could be I'm buying better products now that may also help.
I feel as though my M.C. diet not only keeps me in remission, but a nutritious version of my antigen-free diet will likely keep me from having to take medications for other serious conditions and illnesses down the road.
As they say, "No one gets out alive." At least I want to optimize what life I have left, and postpone all the unnecessary medical intervention I safely can until I have to do otherwise. I think that's a pretty good philosophy to have.
Medications are fine when you need them, so don't feel bad if you really need them. That's why this site provides so much information from the experience of group members who've been on them -- to help those who need them.
I hope this will help you to understand why many of us strongly advocate doing as much as possible by eliminating the usual antigen foods typical of M.C.
as a first course of management of this condition, and not just the G.I. symptoms.
I'm sure that Tex will be along shortly with more words of wisdom.
Sincerely,
Luce
The reason that most of us prefer to control things with diet alone is because most people only want to take medication when absolutely necessary. Obviously, if medication is the only way one can control symptoms of anything, they should not feel there is anything wrong with that as in the examples you mentioned.
For example, I have been in remission for M.C. and other autoimmune conditions for years with just diet, but a related condition, osteoporosis may NOT get better if I don't start on medication to build up my bones soon.
Of course, I'm putting it off, thinking that some day my body will begin to absorb all the nutrients from the good, healthy food I'm eating, but it just appears I'm going to have to cave on this one before it's too late, and take the medications, despite possible side effects that I wouldn't want to have. My sister has already done her initial doses, and seems to be handling that fine, which is easing my concerns about it a bit.
Besides the long term concerns about taking any medications longer than absolutely necessary, there is the cost and convenience factor as this particular medication isn't cheap, and it requires more frequent doctor visits. For some that means loss of income from missed time at work, and for me, it means additional hours for a paid caregiver to stay with my mother while I'm gone to the doctor. I NEVER see a doctor for the M.C., but just for my replacement hormones with the endo, and then, he evaluates my bone situation along with the radiologist. That's only once a year for the endochrinologist, so I can handle that.
Early on among our group members, the reason people starting the diet were starting to take Entocort in the first place was to try to control the diarrhea while they were learning the enormous amount of things one has to learn to completely remove just the gluten part alone from the diet. That way, they could have some quality of life while spending a couple of hours in the grocery store reading labels! Ha! Their intention was never to remain on Entocort in the first place, but rather, once they felt they had a good handle on how to remain on the diet, to slowly wean themselves off of it so that they could tell if they were still getting gluten somewhere in the diet that still needed to be found and the source eliminated. There was no other way to judge that without being completely off the masking medication.
Many of those who were able to successfully wean off the medications were able to control their symptoms with diet alone, and we don't hear from them all that often anymore, most likely because the diet has become a way of life for them now, and they are just busy doing other things. One example comes to mind, Karen, better know around here as "more muscles." When we hear from here, she's usually just run a marathon of some type or is preparing for one. That is encouraging to me, but I'm sure I'll never run one of those!
I would never recommend to anyone that they continue eating things for which they have abnormally high levels of stool antibodies to according to E.Lab, regardless of how well controlled they were from medications. That does not mean I don't recognize that when all these efforts fail, a person will sometimes need the lowest possible maintenance drug of the safest medication out there that works for them as an adjunct to the appropriate dietary measures.
I'm sure I'm not the only one here to be alive because of the advent of antibiotics, so even if the antibiotics had long term consequences leading to some of my later-in-life problems, I've had a pretty good quality of life in the interim, prior to M.C. et al, so I think taking those antibiotics was a pretty good idea. It's nice to have things like that to fall back on when everything else fails.
If I were insulin dependent, I would certainly take insulin, but if ever I have trouble with my blood sugars, I will certainly try immediately to adjust my diet in hopes of returning my blood levels to normal without medications, although I don't believe my diet would encourage type II diabetes as it stands as I eat a healthier diet than those who eat out alot, just because I eat home cooked foods made with high quality ingredients since going free of my sensitivities.
That is one of the fringe benefits of watching what we eat -- we tend to read more about nutrition and food preparation in general. We also tend to get more variety than other people as we try more things to keep from getting bored with our meals.
Off so much of the processed foods, we tend to build back up our ability to taste things, so foods begin to actually taste better, opening up more possibilities for meals. I've discovered I actually like some of the vegetables I didn't think I liked growing up, but then it could be I'm buying better products now that may also help.
I feel as though my M.C. diet not only keeps me in remission, but a nutritious version of my antigen-free diet will likely keep me from having to take medications for other serious conditions and illnesses down the road.
As they say, "No one gets out alive." At least I want to optimize what life I have left, and postpone all the unnecessary medical intervention I safely can until I have to do otherwise. I think that's a pretty good philosophy to have.
Medications are fine when you need them, so don't feel bad if you really need them. That's why this site provides so much information from the experience of group members who've been on them -- to help those who need them.
I hope this will help you to understand why many of us strongly advocate doing as much as possible by eliminating the usual antigen foods typical of M.C.
as a first course of management of this condition, and not just the G.I. symptoms.
I'm sure that Tex will be along shortly with more words of wisdom.
Sincerely,
Luce