scd diet
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scd diet
I was just wondering if anyone has tried the specific carbohydrate diet for CC and has had any luck. They say if you stick to it for at least a year it may be able to cure you. Does anyone think that can be true?
Belle
Hi Belle,
There is no cure for MC, unfortunately, but many members here have tried the specific carbohydrate diet. It helps, but it's downfall is that it allows dairy products, (yogurt), and almost all of us are sensitive to casein, (in addition to gluten). Casein is the primary protein in all dairy products, including yogurt. If you eliminate the dairy products, though, the SCD works fairly well for many people. Of course, if you eliminate dairy products from the SCD, you end up with the paleo diet, which is the best diet for treating MC. Some of us are sensitive to a few paleo foods, and those individuals have to avoid those foods, as well, which means that they have to follow a modified paleo diet.
Tex
There is no cure for MC, unfortunately, but many members here have tried the specific carbohydrate diet. It helps, but it's downfall is that it allows dairy products, (yogurt), and almost all of us are sensitive to casein, (in addition to gluten). Casein is the primary protein in all dairy products, including yogurt. If you eliminate the dairy products, though, the SCD works fairly well for many people. Of course, if you eliminate dairy products from the SCD, you end up with the paleo diet, which is the best diet for treating MC. Some of us are sensitive to a few paleo foods, and those individuals have to avoid those foods, as well, which means that they have to follow a modified paleo diet.
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.
Hi Belle,
I'm not on the SCD diet for CC but I bought the book--Breaking the Vicious Cycle. I thought it was worth reading and gave me some things to think about it. I agree with Tex's comments above. Interestingly my Uncle (mother's brother) was on the SCD diet for schizophrenia for about 9-10 years before he died. He stuck with it so I think it helped him stay off/reduce medications. It is pretty low cal, i.e. he had to eat a lot to maintain his weight. I remember him eating large amounts of yogurt, large salads, a lot of olive oil and a lot of wild caught salmon. I'm sure he ate other things but this was mostly what I saw him eat. From the book it seemed probably too complicated for me personally to follow. I work full time and travel on the job. I'm basically eating a lot of protein and a lot of cooked veggies, coconut oil as much as possible, extra virgin olive oil and some fruit and a little bit of carbs. Brandy PS. I have not read the paleo books yet but they are on my list.
I'm not on the SCD diet for CC but I bought the book--Breaking the Vicious Cycle. I thought it was worth reading and gave me some things to think about it. I agree with Tex's comments above. Interestingly my Uncle (mother's brother) was on the SCD diet for schizophrenia for about 9-10 years before he died. He stuck with it so I think it helped him stay off/reduce medications. It is pretty low cal, i.e. he had to eat a lot to maintain his weight. I remember him eating large amounts of yogurt, large salads, a lot of olive oil and a lot of wild caught salmon. I'm sure he ate other things but this was mostly what I saw him eat. From the book it seemed probably too complicated for me personally to follow. I work full time and travel on the job. I'm basically eating a lot of protein and a lot of cooked veggies, coconut oil as much as possible, extra virgin olive oil and some fruit and a little bit of carbs. Brandy PS. I have not read the paleo books yet but they are on my list.
Hi Belle,
I was Dx in June 2011 with MC. I started doing research on it and everything I read was on the SCDiet. I started it immediately thinking it was going to be my miracle worker. However like Tex pointed out most of us are lactose intolerant (including me). I tried very hard to make the yogurt work for me. But every time I had yogurt I got sick, even when baking with it I got ill. So then I found PP I have probably read 90% of the post regarding Paleo. I started to do research on the Pale diet and like Tex said its basically the same diet except there is no dairy of any kind on Paleo. I probably have the largest library on the SCD and Paleo books! With All the books I have bought I kind of go towards Paleo 99% of the time. I do use some of the SCD recipes from time to time. But most of the time there are from a Paleo cookbooks. I find that Paleo keeps recipes very simple. In the beginning you want to keep things simple so you can figure out what bothers you. I hope you find what works for you. For everyone here what works for one might not work for someone else. So take things very slow!
Good Luck
Robin
I was Dx in June 2011 with MC. I started doing research on it and everything I read was on the SCDiet. I started it immediately thinking it was going to be my miracle worker. However like Tex pointed out most of us are lactose intolerant (including me). I tried very hard to make the yogurt work for me. But every time I had yogurt I got sick, even when baking with it I got ill. So then I found PP I have probably read 90% of the post regarding Paleo. I started to do research on the Pale diet and like Tex said its basically the same diet except there is no dairy of any kind on Paleo. I probably have the largest library on the SCD and Paleo books! With All the books I have bought I kind of go towards Paleo 99% of the time. I do use some of the SCD recipes from time to time. But most of the time there are from a Paleo cookbooks. I find that Paleo keeps recipes very simple. In the beginning you want to keep things simple so you can figure out what bothers you. I hope you find what works for you. For everyone here what works for one might not work for someone else. So take things very slow!
Good Luck
Robin
I am also doing a kind of modified paleo diet (wish I could do the full paleo food palet, but there is still a lot I can not digest very well). I have also read books about the SC and paleo diet. Personally I was not so impressed by the scientific explanation of the SC diet. On the other hand I was very impressed by the books of Loren Cordain. All he writes makes sense to me. But in the end, as said before, if you leave the yoghurt out, the SC diet becomes a paleo diet.
So whatever road you choose, they will lead to a similar destination.
So whatever road you choose, they will lead to a similar destination.
I actually did not test as being sensitive to casein. I only had slightly high antibodies for gluten and nothing else. Do you think the CC could have come about because of an undiagnosed gluten sensitivity all these years? Although just for the record, I have been off gluten for a month and have been feeling progressively worse so I don't know what to believe any more.
Belle
Hi Belle,
Unless those tests were stool tests at Enterolab, they are unreliable for determining the type of food-sensitivities that we have with MC. If a blood test showed that you had "slightly high antibodies for gluten", then a stool test would show very high results, because the stool tests are several orders of magnitude more sensitive than the standard blood tests.
Unfortunately just avoiding gluten probably won't help you much, unless you also avoid all dairy products. You also will eventually have to eliminate any other food-sensitivities that you have, before you will be able to reach complete remission, but avoiding gluten and dairy should help. And, a month is not nearly long enough. Without Entocort, it usually takes 6 months or more to achieve remission by diet alone. There is a very good chance that your pregnancy is also affecting the way that you feel, so you have to allow for that, as well. For women with MC, pregnancy either brings temporary remission, or it makes their symptoms worse. No one knows why, but we know that's what happens.
It's not easy to control this disease. If it were, there would be no reason for the existence of this discussion board - the doctors could control it, if it were easy. It takes patience and perseverance. Hang in there with the diet. It will eventually begin to help - it just takes time, and dedication.
Tex
Unless those tests were stool tests at Enterolab, they are unreliable for determining the type of food-sensitivities that we have with MC. If a blood test showed that you had "slightly high antibodies for gluten", then a stool test would show very high results, because the stool tests are several orders of magnitude more sensitive than the standard blood tests.
Unfortunately just avoiding gluten probably won't help you much, unless you also avoid all dairy products. You also will eventually have to eliminate any other food-sensitivities that you have, before you will be able to reach complete remission, but avoiding gluten and dairy should help. And, a month is not nearly long enough. Without Entocort, it usually takes 6 months or more to achieve remission by diet alone. There is a very good chance that your pregnancy is also affecting the way that you feel, so you have to allow for that, as well. For women with MC, pregnancy either brings temporary remission, or it makes their symptoms worse. No one knows why, but we know that's what happens.
It's not easy to control this disease. If it were, there would be no reason for the existence of this discussion board - the doctors could control it, if it were easy. It takes patience and perseverance. Hang in there with the diet. It will eventually begin to help - it just takes time, and dedication.
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.
Hi Belle.....MC takes patience, patience and more patience! And just when you think you have everything under control, its not so you have to find more patience!!! LOL I have learned that in this fast pace world we live in and everyone wants things yesterday this disease does not exist in that world! The harder you push for everything to work in your favor just comes back to kick you in the butt and stomach literally. So my biggest advice to you is make things simple and take things VERY slow!!!
Good Luck
Robin
Good Luck
Robin
stool test
Thanks,
The results were from enterolabs stool test. I had a 14 for gluten sensitivity and everything else was under 6. I am not pregnant now as I miscarried. For some reason though since I went off gluten and dairy I have been feeling much worse. I started having joint pain which I never had before. I have tons of stiffness in my back and neck and am in general very uncomfortable. Also for some reason I am urinating more frequently at night. I am trying to keep to the SCD diet but adding things only very slowly. I have not added any dairy yet. I am starting to lose my mind over this. I am 30 and feel like an old lady. I still have to manage my family as my husband and kids need me besides that I work and can't lose my job. This is just too much to deal with. I just need to get better. I recently went to a top rhemotologist and am awaiting his results and we'll see what he says. I hope I can keep hanging in there but it is becoming harder and harder.
The results were from enterolabs stool test. I had a 14 for gluten sensitivity and everything else was under 6. I am not pregnant now as I miscarried. For some reason though since I went off gluten and dairy I have been feeling much worse. I started having joint pain which I never had before. I have tons of stiffness in my back and neck and am in general very uncomfortable. Also for some reason I am urinating more frequently at night. I am trying to keep to the SCD diet but adding things only very slowly. I have not added any dairy yet. I am starting to lose my mind over this. I am 30 and feel like an old lady. I still have to manage my family as my husband and kids need me besides that I work and can't lose my job. This is just too much to deal with. I just need to get better. I recently went to a top rhemotologist and am awaiting his results and we'll see what he says. I hope I can keep hanging in there but it is becoming harder and harder.
Belle
Belle,
If those were EnteroLab test results, then as Dr. Fine says, there's still a remote chance that you might be sensitive to a different protein in dairy products, (such as whey), but the odds are pretty good that lactose-free dairy products, (and the SCD), should be safe for you. You still need to avoid lactose, until you reach remission, because the small intestine can't produce adequate amounts of the lactase enzyme as long as it is inflamed. After the inflammation is gone, you should be able to digest lactose, also.
I understand exactly how you feel - when I was reacting, I felt like I had the worst case of the flu in the world - every thing ached. It kept me from sleeping at night. You seem to be reacting pretty severely, and you apparently have a very leaky gut, (leaky gut syndrome). The leaky gut syndrome is what causes those joint pains, and general body aches and pains. I wonder if there might be something else in your diet that you are very sensitive to. A yeast overgrowth is a possibility. Does your tongue have thrush?
Some doctors may approve taking Entocort just prior to, or during pregnancy, or when nursing a baby, but that seems to me to be a rather risky endeavor, at least at a maximum dosage rate. Entocort crosses the placental barrier, and it almost certainly is transmitted in mother's milk. Research studies show that it can cause teratogenic effects in rodent species, but, of course, no studies have been done in humans. That certainly doesn't mean that it is absolutely dangerous to take Entocort during pregnancy - it just means that we don't really know what the risks might be. For all I know, the risk might be very low.
It might be possible to minimize the risk by using Entocort far enough in advance of pregnancy so that you would be able to taper the dose down to only one capsule per day, (or every other day), in combination with the diet, before becoming pregnant. With such a low dose, careful monitoring of fetal development should allow you and your doctor to recognize any problems, and stop using it, before the fetal developmental problems became serious. And, there is always a chance that after the diet has enough time to allow your intestines to heal, you might be able to wean completely off the Entocort, anyway, and still maintain remission by diet alone. Everyone's situation is different, so we each have to carefully work out the details of our treatment program.
I'm not sure that it would do much good to see a rheumatologist, because once you get your MC under control, your aches and pains will disappear. Also, the drugs that he or she would prescribe to treat arthritis would be much more potent, (and, therefore, (IMO), much riskier), than Entocort. Some of those drugs are classified as category "B", (in regard to pregnancy), but these drugs haven't been around long enough to have established a long-term track record. As time goes on, more and more problems are showing up. For example, the Anti-TNF drugs that I'm referring to, have now been shown to significantly increase the risk of cancer, and other major issues, in young people. IMO, they are to be used only in extreme situations, and not on a routine basis, and yet, rheumatologists are handing out prescriptions like candy, as if these drugs are the best thing since sliced bread. They can bring dramatic results in severe cases of RA, and while the risks of adverse events is low, the events that they are known to cause, are often fatal, or at least life-threatening.
But that's just my unprofessional opinion.
Tex
If those were EnteroLab test results, then as Dr. Fine says, there's still a remote chance that you might be sensitive to a different protein in dairy products, (such as whey), but the odds are pretty good that lactose-free dairy products, (and the SCD), should be safe for you. You still need to avoid lactose, until you reach remission, because the small intestine can't produce adequate amounts of the lactase enzyme as long as it is inflamed. After the inflammation is gone, you should be able to digest lactose, also.
I understand exactly how you feel - when I was reacting, I felt like I had the worst case of the flu in the world - every thing ached. It kept me from sleeping at night. You seem to be reacting pretty severely, and you apparently have a very leaky gut, (leaky gut syndrome). The leaky gut syndrome is what causes those joint pains, and general body aches and pains. I wonder if there might be something else in your diet that you are very sensitive to. A yeast overgrowth is a possibility. Does your tongue have thrush?
Some doctors may approve taking Entocort just prior to, or during pregnancy, or when nursing a baby, but that seems to me to be a rather risky endeavor, at least at a maximum dosage rate. Entocort crosses the placental barrier, and it almost certainly is transmitted in mother's milk. Research studies show that it can cause teratogenic effects in rodent species, but, of course, no studies have been done in humans. That certainly doesn't mean that it is absolutely dangerous to take Entocort during pregnancy - it just means that we don't really know what the risks might be. For all I know, the risk might be very low.
It might be possible to minimize the risk by using Entocort far enough in advance of pregnancy so that you would be able to taper the dose down to only one capsule per day, (or every other day), in combination with the diet, before becoming pregnant. With such a low dose, careful monitoring of fetal development should allow you and your doctor to recognize any problems, and stop using it, before the fetal developmental problems became serious. And, there is always a chance that after the diet has enough time to allow your intestines to heal, you might be able to wean completely off the Entocort, anyway, and still maintain remission by diet alone. Everyone's situation is different, so we each have to carefully work out the details of our treatment program.
I'm not sure that it would do much good to see a rheumatologist, because once you get your MC under control, your aches and pains will disappear. Also, the drugs that he or she would prescribe to treat arthritis would be much more potent, (and, therefore, (IMO), much riskier), than Entocort. Some of those drugs are classified as category "B", (in regard to pregnancy), but these drugs haven't been around long enough to have established a long-term track record. As time goes on, more and more problems are showing up. For example, the Anti-TNF drugs that I'm referring to, have now been shown to significantly increase the risk of cancer, and other major issues, in young people. IMO, they are to be used only in extreme situations, and not on a routine basis, and yet, rheumatologists are handing out prescriptions like candy, as if these drugs are the best thing since sliced bread. They can bring dramatic results in severe cases of RA, and while the risks of adverse events is low, the events that they are known to cause, are often fatal, or at least life-threatening.
But that's just my unprofessional opinion.
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.
Hi Belle,
I can't comment re: Entocourt and pregnancy that would be between you and your Doctor. I can comment on side effects as I just got off Entocort after 4.5 month stint. Common side effects for women mentioned fairly frequently on this forum: hair loss. Other side effects for women: bone loss and heavier periods.
Less common side effects--what I had--7% of users according to the drug info: extreme dizziness, problems with mental accuity, etc. That being said a lot of users on this forum seem to have no side effects. The GI docs typically prescribe it for 3months. I stayed on it for 4.5months and was trying to stay on it for 6 months with an extremely long taper off at recommendation of this board but I could no longer take the dizziness.
re: Joint pain--mine was bad....I'm age 50 and could not walk around the grocery store for about an 8 week period.....prior to MC I was walking 7 miles a week so in good health. My joint pain was gone after 8 weeks of being GF.
I know it has got to be tough with young children and a job. I broke down one day due to the heavy cooking/cleanup required. The boyfriend had me switch over to using paper plates, bowls and plastic cups for all meals, pricey and not eco friendly but made a huge difference in cleanup.
I found a lot of rest helpful during the heavy joint pain period.
I'm not sure if you are aware of the pepto option. Go GF and 9 pepto tablets per day for around 8 weeks. I believe the John Hopkins website talks about it. I wasn't aware that it was a bona fide medical option until I was on Ento for about 8 weeks or would have probably tried pepto first.
Best wishes and hope some of this helps, Brandy
I can't comment re: Entocourt and pregnancy that would be between you and your Doctor. I can comment on side effects as I just got off Entocort after 4.5 month stint. Common side effects for women mentioned fairly frequently on this forum: hair loss. Other side effects for women: bone loss and heavier periods.
Less common side effects--what I had--7% of users according to the drug info: extreme dizziness, problems with mental accuity, etc. That being said a lot of users on this forum seem to have no side effects. The GI docs typically prescribe it for 3months. I stayed on it for 4.5months and was trying to stay on it for 6 months with an extremely long taper off at recommendation of this board but I could no longer take the dizziness.
re: Joint pain--mine was bad....I'm age 50 and could not walk around the grocery store for about an 8 week period.....prior to MC I was walking 7 miles a week so in good health. My joint pain was gone after 8 weeks of being GF.
I know it has got to be tough with young children and a job. I broke down one day due to the heavy cooking/cleanup required. The boyfriend had me switch over to using paper plates, bowls and plastic cups for all meals, pricey and not eco friendly but made a huge difference in cleanup.
I found a lot of rest helpful during the heavy joint pain period.
I'm not sure if you are aware of the pepto option. Go GF and 9 pepto tablets per day for around 8 weeks. I believe the John Hopkins website talks about it. I wasn't aware that it was a bona fide medical option until I was on Ento for about 8 weeks or would have probably tried pepto first.
Best wishes and hope some of this helps, Brandy
Belle, have you had your thyroid hormone levels checked recently? Thyroid problems are common along with MC, and can cause some of the same muscle aches, pains, and fatigue that gluten and other food intolerances can.
I have been in remission for 2 1/2 years with eliminating gluten, dairy and soy, but last year started feeling very tired and achy, and having more frequent BMs. I thought there must be some other food intolerance cropping up, but it turned out to be hyperthroidism (Graves Disease). Once I got that stabilized i felt back to normal.
Rosie
I have been in remission for 2 1/2 years with eliminating gluten, dairy and soy, but last year started feeling very tired and achy, and having more frequent BMs. I thought there must be some other food intolerance cropping up, but it turned out to be hyperthroidism (Graves Disease). Once I got that stabilized i felt back to normal.
Rosie
Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time………Thomas Edison