Gloria,
I've eliminated Rice Dream as it contains carrageenan, which can be a trigger for a lot of people. I hope you see results from this.
Courtney
Weaning Off Entocort
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Gloria,
Regarding your post, here are my thoughts, FWIW:
1. Onions are a known irritant, for many of us. Why not make your own soup stock, in large batches, (the way the best restaurants do), and freeze it in appropriate serving size containers, so that you can thaw out what you need, whenever you want to make soup? Onions bothered me so much before my gut healed, that I haven't had the urge to even try them again, in the five years that I've been in remission, since then.
2. Rice Dream is labeled for a maximum of 25 ppm of gluten. That is the legal threshold for gluten-free labeling, according to the Codex Alimentarius standard, followed today by most food manufacturers in the developed nations. That means that in a best case scenario, most celiacs will be able to handle it, but a certain small percentage of the more sensitive ones, will probably react to it. Also, please bear in mind that over the past few years, several highly esteemed brands of gluten-free products have been determined by independent testing services, to be way out of compliance with the Codex Alimentarius standard, and have been forced to discontinue their gluten-free label. For example, one of the more prominent examples, is McCann's Irish Oats, which was found to have roughly 10 times the allowable limit of gluten, on the average, in the lots that were tested. Even McDonald's has been forced to drop their highly-touted gluten-free label for their French fries. IOW, using products with a known "tiny" amount of gluten, may amount to flirting with disaster, because of the cumulative effect of gluten - even if they are in compliance, (which obviously is not true in many cases), the cumulative effect of several of these products together, may be sufficient to exceed the personal threshold for many of us, especially those of us who are ultra-sensitive. Why tempt fate?
I realize that eliminating Rice Dream from your diet at this point is a big step, because, (if I recall correctly), you have found that you react to Hempmilk. Have you tried Almond milk? (I'm thinking there is one brand on the market that does not contain soy, but if that's not the case, maybe you could make your own.) Also, what about cashew milk? Coconut milk can be used for many purposes, (hopefully, you're not also intolerant of coconut milk). As much effort as you have put into the fine-tuning of your diet, if there is any justice at all in this world, surely you are close to a workable solution.
Tex
P S Courtney has an excellent point - Polly is intolerant of carrageenan, (and I'm thinking that at least one or two others here are, also).
Regarding your post, here are my thoughts, FWIW:
1. Onions are a known irritant, for many of us. Why not make your own soup stock, in large batches, (the way the best restaurants do), and freeze it in appropriate serving size containers, so that you can thaw out what you need, whenever you want to make soup? Onions bothered me so much before my gut healed, that I haven't had the urge to even try them again, in the five years that I've been in remission, since then.
2. Rice Dream is labeled for a maximum of 25 ppm of gluten. That is the legal threshold for gluten-free labeling, according to the Codex Alimentarius standard, followed today by most food manufacturers in the developed nations. That means that in a best case scenario, most celiacs will be able to handle it, but a certain small percentage of the more sensitive ones, will probably react to it. Also, please bear in mind that over the past few years, several highly esteemed brands of gluten-free products have been determined by independent testing services, to be way out of compliance with the Codex Alimentarius standard, and have been forced to discontinue their gluten-free label. For example, one of the more prominent examples, is McCann's Irish Oats, which was found to have roughly 10 times the allowable limit of gluten, on the average, in the lots that were tested. Even McDonald's has been forced to drop their highly-touted gluten-free label for their French fries. IOW, using products with a known "tiny" amount of gluten, may amount to flirting with disaster, because of the cumulative effect of gluten - even if they are in compliance, (which obviously is not true in many cases), the cumulative effect of several of these products together, may be sufficient to exceed the personal threshold for many of us, especially those of us who are ultra-sensitive. Why tempt fate?
I realize that eliminating Rice Dream from your diet at this point is a big step, because, (if I recall correctly), you have found that you react to Hempmilk. Have you tried Almond milk? (I'm thinking there is one brand on the market that does not contain soy, but if that's not the case, maybe you could make your own.) Also, what about cashew milk? Coconut milk can be used for many purposes, (hopefully, you're not also intolerant of coconut milk). As much effort as you have put into the fine-tuning of your diet, if there is any justice at all in this world, surely you are close to a workable solution.
Tex
P S Courtney has an excellent point - Polly is intolerant of carrageenan, (and I'm thinking that at least one or two others here are, also).
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 Gloria,
Osteoporosis is a long term problem. If you give up your Rice Dream for a few weeks I'd be surprised if it had a noticeable impact on your bones. But it will answer the question properly.
Making your own stock base is very easy, and cheap. I made a big batch of chicken stock last weekend. Into big stock pot went 4 organic chicken carcases (the butcher sells them as carcases), the leafy tops off half a bunch of celery, half a dozen mushrooms that were a day past their best, a roughly chopped carrot,an onion, some peppercorns and a couple of bay leaves and about 5 litres of water (enough to cover). Bring to boil, cover and simmer for at least three hours, but longer if it suits. Let cool enough to handle, then strain into some big bowls, or pots. I use a doubled cotton teatowel in a sieve to strain it, and ladle the stock as it is too heavy to lift the pot. Refrigerate overnight, then skim off the congealed fat and ladle into small containers to freeze. The stock should be slightly jelled, but this depends on how many bones you use. If you want a richer stock, reboil the stock after you have strained it until reduced as desired. You can also add other flavours - for asian try star anise, cinnamon, coriander; for european try oregano, basil etc. I only add salt at the end, if at all, as it concentrates as it cooks.
Obviously you can leave out the onion and add more of whatever vegies you have at hand (not potatoes as they disintegrate). This method is easy because there is no complicated browning. Just chuck it all in and come back later. If you can't get chicken carcases or want to do a smaller quantity, I have also used necks. And it has absolutely no 'flavour enhancers', 'thickeners' or other unknowns.
Lyn
Osteoporosis is a long term problem. If you give up your Rice Dream for a few weeks I'd be surprised if it had a noticeable impact on your bones. But it will answer the question properly.
Making your own stock base is very easy, and cheap. I made a big batch of chicken stock last weekend. Into big stock pot went 4 organic chicken carcases (the butcher sells them as carcases), the leafy tops off half a bunch of celery, half a dozen mushrooms that were a day past their best, a roughly chopped carrot,an onion, some peppercorns and a couple of bay leaves and about 5 litres of water (enough to cover). Bring to boil, cover and simmer for at least three hours, but longer if it suits. Let cool enough to handle, then strain into some big bowls, or pots. I use a doubled cotton teatowel in a sieve to strain it, and ladle the stock as it is too heavy to lift the pot. Refrigerate overnight, then skim off the congealed fat and ladle into small containers to freeze. The stock should be slightly jelled, but this depends on how many bones you use. If you want a richer stock, reboil the stock after you have strained it until reduced as desired. You can also add other flavours - for asian try star anise, cinnamon, coriander; for european try oregano, basil etc. I only add salt at the end, if at all, as it concentrates as it cooks.
Obviously you can leave out the onion and add more of whatever vegies you have at hand (not potatoes as they disintegrate). This method is easy because there is no complicated browning. Just chuck it all in and come back later. If you can't get chicken carcases or want to do a smaller quantity, I have also used necks. And it has absolutely no 'flavour enhancers', 'thickeners' or other unknowns.
Lyn
Thank you for the suggestions.
Courtney - I've been somewhat aware of the carrageenan because of Polly's intolerance for it - we both have the same double DQ1 genes, but I haven't tried to consciously avoid it. If eliminating the Rice Dream does the trick, I'll have to consider that carrageenan could be the problem.
Tex and Lyn - I have considered making my own soup stock. I've made it in the past, but I didn't think it was very flavorful. I think I'll give it another try using Lyn's ideas and see if I can find room in my freezer. I know how to can and could can the stock, too. Now that I'm no longer working, I should have time to make it. Lyn, have you ever made beef stock?
Tex - The main reason I drink Rice Dream is to get the calcium. I already make my own rice milk and use it in my cereal and in baking/cooking. The homemade milk doesn't taste as good to drink. I got an email a couple of weeks ago from Rice Dream about a new almond milk. If eliminating Rice Dream resolves my issues, I could consider using another type, but didn't you say that they all use barley in the processing?
Gloria
Courtney - I've been somewhat aware of the carrageenan because of Polly's intolerance for it - we both have the same double DQ1 genes, but I haven't tried to consciously avoid it. If eliminating the Rice Dream does the trick, I'll have to consider that carrageenan could be the problem.
Tex and Lyn - I have considered making my own soup stock. I've made it in the past, but I didn't think it was very flavorful. I think I'll give it another try using Lyn's ideas and see if I can find room in my freezer. I know how to can and could can the stock, too. Now that I'm no longer working, I should have time to make it. Lyn, have you ever made beef stock?
Tex - The main reason I drink Rice Dream is to get the calcium. I already make my own rice milk and use it in my cereal and in baking/cooking. The homemade milk doesn't taste as good to drink. I got an email a couple of weeks ago from Rice Dream about a new almond milk. If eliminating Rice Dream resolves my issues, I could consider using another type, but didn't you say that they all use barley in the processing?
Gloria
You never know what you can do until you have to do it.
I believe that all the rice milks use barley to initiate the malting process, but some of the other commercial milk products, (nut milks, etc.), don't use any malting process. Unfortunately, the only commercial almond milk that I ever came across in the HF stores, was Blue Diamond Almond Milk, and it contains both carrageenan and soy lecithin, so I've never tried an almond milk product. 
The Almond Dream, however, looks like a sure winner, with no suspicious ingredients, that I can see.
http://www.tastethedream.com/products/p ... 38/360.php
http://www.tastethedream.com/products/p ... 39/360.php
The Hemp Dream also looks like a winner:
http://www.tastethedream.com/products/p ... 24/428.php
http://www.tastethedream.com/products/p ... 25/428.php
I may have to order some of these, to try them. They look great.
Tex
The Almond Dream, however, looks like a sure winner, with no suspicious ingredients, that I can see.
http://www.tastethedream.com/products/p ... 38/360.php
http://www.tastethedream.com/products/p ... 39/360.php
The Hemp Dream also looks like a winner:
http://www.tastethedream.com/products/p ... 24/428.php
http://www.tastethedream.com/products/p ... 25/428.php
I may have to order some of these, to try them. They look great.
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.
Tex,
I'm glad I mentioned the Almond milk. If the Rice Dream is the problem, I can try the Almond milk. As far as I know, I don't have problems with almonds. I'm hesitant to try the Hemp milk until all my issues are resolved. Thank you for checking into it.
Gloria
I'm glad I mentioned the Almond milk. If the Rice Dream is the problem, I can try the Almond milk. As far as I know, I don't have problems with almonds. I'm hesitant to try the Hemp milk until all my issues are resolved. Thank you for checking into it.
Gloria
You never know what you can do until you have to do it.
Hi Gloria,
The big differences between homemade and bought stock IMHO, are strength and salt. The commercial ones tend to be more concentrated than those you make at home. This can be fixed by boiling down. They also tend to have a lot more salt. That one is personal choice, just don't salt before reducing or it ends up too salty.
I do make beef stock, and am due to make a new batch soon. It is more work as you really need to brown the meat well, being careful not to burn it, in order to get a good colour and flavour. Otherwise it turns out grey. Beef usually does end up with a stronger flavour, so if that is what you crave it is worth the effort.
Use whatever lower cost beef with lots of bones you can get. I like to use the cut they sell for Osso Bucco. Or if they are selling soup bones, I use them and add some stewing beef so I have vaguely equal quantities of meat and bones. Avoid big bones that don't brown well, and big chunks of fat. 2 methods:
1) Put meat into roasting pan with a little oil and coarsely chopped carrot and onion, and roast at high high heat, turning occasionally, till it is nicely browned. Forget how long I leave it. half an hour?
Tip into stock pot, add remaining vegies (mushroom, celery) and herbs (peppercorns, bay, parsley, a small spoonful of tomato paste) and cover with water. Rinse baking pan with water if it has good brown juices and add to stock - a quick boil on the stove may help loosen stuck on brown bits. Simmer at least 3 hours, strain and refrigerate overnight before removing fat and packing into containers for freezing.
2) Brown meat and onion, carrot in stock pot - takes more watching, but less washing up! Brown meat and vegies in small batches that don't cover the bottom of the pot, until well coloured. If you add too much meat at one time it will stew and not brown. Watch carefully and stir frequently to avoid burning as too many burnt bits do affect the flavour. When all browned return it to the pot, add water, extra flavourings and continue to cook for a few hours as above.
I use the oven method in winter as I think it browns best, and the stove top method in summer!
Enjoy.
Lyn
The big differences between homemade and bought stock IMHO, are strength and salt. The commercial ones tend to be more concentrated than those you make at home. This can be fixed by boiling down. They also tend to have a lot more salt. That one is personal choice, just don't salt before reducing or it ends up too salty.
I do make beef stock, and am due to make a new batch soon. It is more work as you really need to brown the meat well, being careful not to burn it, in order to get a good colour and flavour. Otherwise it turns out grey. Beef usually does end up with a stronger flavour, so if that is what you crave it is worth the effort.
Use whatever lower cost beef with lots of bones you can get. I like to use the cut they sell for Osso Bucco. Or if they are selling soup bones, I use them and add some stewing beef so I have vaguely equal quantities of meat and bones. Avoid big bones that don't brown well, and big chunks of fat. 2 methods:
1) Put meat into roasting pan with a little oil and coarsely chopped carrot and onion, and roast at high high heat, turning occasionally, till it is nicely browned. Forget how long I leave it. half an hour?
Tip into stock pot, add remaining vegies (mushroom, celery) and herbs (peppercorns, bay, parsley, a small spoonful of tomato paste) and cover with water. Rinse baking pan with water if it has good brown juices and add to stock - a quick boil on the stove may help loosen stuck on brown bits. Simmer at least 3 hours, strain and refrigerate overnight before removing fat and packing into containers for freezing.2) Brown meat and onion, carrot in stock pot - takes more watching, but less washing up! Brown meat and vegies in small batches that don't cover the bottom of the pot, until well coloured. If you add too much meat at one time it will stew and not brown. Watch carefully and stir frequently to avoid burning as too many burnt bits do affect the flavour. When all browned return it to the pot, add water, extra flavourings and continue to cook for a few hours as above.
I use the oven method in winter as I think it browns best, and the stove top method in summer!
Enjoy.
Lyn
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Hi Gloria,
I read this entire post. It's very educational, and I SO admire what you're doing.
How are you doing now? I think you're still taking a minimal amount of Entocort?
I wanted to suggest that you look at sulfites in foods. You react to Vit E pills, and onions, so do I. The final item on my "foods to avoid" list is sulfites.
If you have a problem with any of the following foods, you might suspect sulfites: frozen or dehydrated onions, dehydrated garlic, dried fruits (bananas, trail mixes), white wine, shredded coconut, frozen shrimp, marachino cherries, some frozen potatoes, most frozen or dehydrated potatoes, white grape juice, B vitamins, or corn products like corn syrup or nacho chips or vitamin C. Some people who have a problem with sulfites also have a problem with sulfates, which are topical and used in shampoos and toothpastes. A person might get sores in their mouth, or the lining of your mouth might peel from toothpastes that use sulfates.
I think that I'm not so much reactive to corn as to the sulfite residue still in corn products. Sulfites are used to "wash" and break down the exterior of the corn nuggets so the sugars and good stuff can be extracted. It's also used as a preservative, and to keep things like potatoes from darkening. It doesn't have to be listed on the label over a certain mg. And, it's a naturally occurring substance, so a food can be labeled "all natural".
Didn't mean to write a book. All my best,
Marsha
I read this entire post. It's very educational, and I SO admire what you're doing.
How are you doing now? I think you're still taking a minimal amount of Entocort?
I wanted to suggest that you look at sulfites in foods. You react to Vit E pills, and onions, so do I. The final item on my "foods to avoid" list is sulfites.
If you have a problem with any of the following foods, you might suspect sulfites: frozen or dehydrated onions, dehydrated garlic, dried fruits (bananas, trail mixes), white wine, shredded coconut, frozen shrimp, marachino cherries, some frozen potatoes, most frozen or dehydrated potatoes, white grape juice, B vitamins, or corn products like corn syrup or nacho chips or vitamin C. Some people who have a problem with sulfites also have a problem with sulfates, which are topical and used in shampoos and toothpastes. A person might get sores in their mouth, or the lining of your mouth might peel from toothpastes that use sulfates.
I think that I'm not so much reactive to corn as to the sulfite residue still in corn products. Sulfites are used to "wash" and break down the exterior of the corn nuggets so the sugars and good stuff can be extracted. It's also used as a preservative, and to keep things like potatoes from darkening. It doesn't have to be listed on the label over a certain mg. And, it's a naturally occurring substance, so a food can be labeled "all natural".
Didn't mean to write a book. All my best,
Marsha
Hi Marsha,
I know you've been at this for longer than me and I appreciate your suggestions. I frequently get mouth sores, though I'm getting them less now that I've switched toothpaste. I'm going to look for a connection between my reactions and sulfites in foods.
I am doing much better and feel like I'm very close to remission or at least am able to manage my MC. I have reduced my Entocort to 1 3mg pill every three days, which is about 2 pills per week. I'm not having any increased problems because of the reduced dosage. I'm not sure at this point if I should just stop using Entocort altogether or reduce to only 1 pill per week. That dosage almost seems pointless.
I'm drinking Almond Dream instead of Rice Dream and am still not sure if I can handle onions or red peppers just yet. I feel like my gut is finally healing. When Tex said it takes 2 years to heal, I thought it was too long to wait at my age, but here it is, almost 2 years later and I'm knocking at remission's door. What a great feeling!
I'm hoping that many of the foods I've eliminated will end up being irritants, not intolerances, and that I'll be able to slowly reintroduce them as my gut completely heals. I would love to eat salads again - it would open up a whole new world. I could eat away from home without worrying so much.
When I began this thread 17 months ago, I thought I'd be posting for about 6-8 weeks on the topic. I've always hoped that my posts would help others realize that remission isn't always a slam-dunk, especially for those of us that are multiply-intolerant. My other desire has been to help others see that they're not alone in their struggles, and with perseverance, it is possible to heal and manage this disease. I'm probably sounding like I've arrived. If you read this entire thread, I've sounded that way before. It's not over until it's over, so I'm not declaring victory just yet. If I'm doing OK eight weeks after being off the Entocort, then I'll declare victory.
Gloria
I know you've been at this for longer than me and I appreciate your suggestions. I frequently get mouth sores, though I'm getting them less now that I've switched toothpaste. I'm going to look for a connection between my reactions and sulfites in foods.
I am doing much better and feel like I'm very close to remission or at least am able to manage my MC. I have reduced my Entocort to 1 3mg pill every three days, which is about 2 pills per week. I'm not having any increased problems because of the reduced dosage. I'm not sure at this point if I should just stop using Entocort altogether or reduce to only 1 pill per week. That dosage almost seems pointless.
I'm drinking Almond Dream instead of Rice Dream and am still not sure if I can handle onions or red peppers just yet. I feel like my gut is finally healing. When Tex said it takes 2 years to heal, I thought it was too long to wait at my age, but here it is, almost 2 years later and I'm knocking at remission's door. What a great feeling!
I'm hoping that many of the foods I've eliminated will end up being irritants, not intolerances, and that I'll be able to slowly reintroduce them as my gut completely heals. I would love to eat salads again - it would open up a whole new world. I could eat away from home without worrying so much.
When I began this thread 17 months ago, I thought I'd be posting for about 6-8 weeks on the topic. I've always hoped that my posts would help others realize that remission isn't always a slam-dunk, especially for those of us that are multiply-intolerant. My other desire has been to help others see that they're not alone in their struggles, and with perseverance, it is possible to heal and manage this disease. I'm probably sounding like I've arrived. If you read this entire thread, I've sounded that way before. It's not over until it's over, so I'm not declaring victory just yet. If I'm doing OK eight weeks after being off the Entocort, then I'll declare victory.
Gloria
You never know what you can do until you have to do it.
Wow, Gloria
I am pretty much in awe of the road you have traveled. I'm glad to hear that you are finally seeing a good deal of improvement. You have really been persistant.
All I could think of when I read about you thinking about not taking the Entocort at all was the time Peg was down to 1 asacol a day. Who would have thought that small dose could do that much for her.... but it did. Just something to think about. I believe I'd wait until I felt I was completely in remission before reducing it further. Just my opinion. I'm obviously a chicken. HaHa
Love, Shirley
I am pretty much in awe of the road you have traveled. I'm glad to hear that you are finally seeing a good deal of improvement. You have really been persistant.
All I could think of when I read about you thinking about not taking the Entocort at all was the time Peg was down to 1 asacol a day. Who would have thought that small dose could do that much for her.... but it did. Just something to think about. I believe I'd wait until I felt I was completely in remission before reducing it further. Just my opinion. I'm obviously a chicken. HaHa
Love, Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
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Gloria, did Entocort have side effects that made you want to get off it? Is it true that it is time released cortisone/prednisone that is released in the lower GI tract, so only 25% of the dosage gets into the general bloodstream? If I understand it correctly, that means it has all the negatives of prednisone taken orally (weight gain, reduced resistance to infection, etc).
Marsha
Marsha
Marsha,
I haven't had any side effects from using Entocort, no weight gain, no lowered immunity, etc. It's been a great medication for me.
I want to get off of it because I don't like taking medicine in general, and I worry that when I subscribe to Medicare's prescription coverage in a few years, Entocort will be expensive. Also, it's unknown how much of an impact Entocort has on my spinal osteoporosis. Although it's probably minimal because such a small percentage gets in the bloodstream, I hope every little bit that I can do to improve the osteoporosis will help.
Gloria
I haven't had any side effects from using Entocort, no weight gain, no lowered immunity, etc. It's been a great medication for me.
I want to get off of it because I don't like taking medicine in general, and I worry that when I subscribe to Medicare's prescription coverage in a few years, Entocort will be expensive. Also, it's unknown how much of an impact Entocort has on my spinal osteoporosis. Although it's probably minimal because such a small percentage gets in the bloodstream, I hope every little bit that I can do to improve the osteoporosis will help.
Gloria
You never know what you can do until you have to do it.
Marsha,
The active ingredient in Entocort EC is budesonide, and since it is encapsulated, so that it does not begin to become activated until it reaches the ilium and the colon, only about 10 to 15 % of it enters the bloodstream. In test trials, patients taking Entocort EC report only a small fraction of the side effects so common to Prednisone and the other conventional corticosteroids.
Tex
The active ingredient in Entocort EC is budesonide, and since it is encapsulated, so that it does not begin to become activated until it reaches the ilium and the colon, only about 10 to 15 % of it enters the bloodstream. In test trials, patients taking Entocort EC report only a small fraction of the side effects so common to Prednisone and the other conventional corticosteroids.
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.