Specific Carbohydrate Diet
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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KarenSmith
- Posts: 4
- Joined: Sun Dec 04, 2011 8:16 am
Specific Carbohydrate Diet
Hi, I am new to the message board. I have had CC for over 20 years now but only got a diagnosis about 8 years ago after a colonoscopy (my first) and it showed on the biopsy. I have been having a bad flare since the spring of this year. I tried Entocort for the first time and had an adverse reaction (severe migraine & muscle aching) so could not stay on it. So it is back to Asacol which is of some help but still have D every day with severe gas and bloating. I am doing my best to be gluten free but am noticing that other foods will cause symptoms. Has anyone tried the Specific Carbohydrate Diet? There is a book out that claims this is the cure for anyone with IBD. I am desperate to get relief from this flare. At times it feels like I react to everything I eat.
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draperygoddess
- Rockhopper Penguin
- Posts: 558
- Joined: Mon Aug 29, 2011 6:49 am
- Location: Tennessee
Karen,
Hi and welcome to the forum!
I'm sure many here will tell you the same thing, but if you're already GF and still having symptoms, you're definitely reacting to something else. The best way to figure out what it is, is to keep a food diary. You write down everything you eat or drink, plus any meds you take, and the time. Also write down any symptoms you have (gastrointestinal or not). You should start to see a pattern. Then you can eliminate the likely suspects. When you're feeling better, you can try adding them back in, one at a time, and see how you react.
Many of us here are sensitive to more than one food, and dairy seems to be a biggie for a lot of us. Have you tried going DF for awhile? That was a big piece of the MC puzzle for me.
Hoping you find out what's bothering you so you can feel better soon!
Hi and welcome to the forum!
I'm sure many here will tell you the same thing, but if you're already GF and still having symptoms, you're definitely reacting to something else. The best way to figure out what it is, is to keep a food diary. You write down everything you eat or drink, plus any meds you take, and the time. Also write down any symptoms you have (gastrointestinal or not). You should start to see a pattern. Then you can eliminate the likely suspects. When you're feeling better, you can try adding them back in, one at a time, and see how you react.
Many of us here are sensitive to more than one food, and dairy seems to be a biggie for a lot of us. Have you tried going DF for awhile? That was a big piece of the MC puzzle for me.
Hoping you find out what's bothering you so you can feel better soon!
Cynthia
"Can we fix it? YES WE CAN!" -Bob the Builder
"Can we fix it? YES WE CAN!" -Bob the Builder
Hi Karen,
Welcome to our internet family. Yes, many members here have tried the SCD. The biggest problem with the SCD is that it allows casein, (in yogurt), and as Cynthia pointed out, most of us are sensitive to casein. If you cut all dairy products out of our diet, also, then the SCD should work for MC. Of course, if you cut all dairy out of the SCD, in effect, you end up with the paleo diet, which is the diet that the human digestive system evolved on, over hundreds of thousands of years.
Also, if you are going to use dietary changes to achieve remission, "doing your best to be gluten free", may not be sufficient - we have to avoid all gluten, 100% of the time, if we hope to stop the autoimmune reaction that causes the inflammation that perpetuates MC. I realize that's not a simple thing to do, and none of us are perfect, but picture the treatment of this disease as climbing up a ladder to get out of the miserable pit that we find ourselves in. Every time we slip up on our diet, it knocks us back down the ladder by a rung or two. If that happens rarely, it's no big deal, because we will eventually successfully reach the top, to get our life back. If we slip up on our diet regularly, though, we will never be able to climb out of that pit, because our gut will never have a chance to heal, if we continue to damage it on a regular basis. Like any physical injury, it takes much longer for the gut to heal, that it does for the damage to develop.
Most of us are sensitive to gluten, all dairy products, and at least half of us are also sensitive to all forms of soy. Meticulously avoiding those 3 foods will get most of us to remission, (with or without meds). Some of us, though, have other food sensitivities, (such as egg, yeast, etc.), that we have to avoid, as well.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family. Yes, many members here have tried the SCD. The biggest problem with the SCD is that it allows casein, (in yogurt), and as Cynthia pointed out, most of us are sensitive to casein. If you cut all dairy products out of our diet, also, then the SCD should work for MC. Of course, if you cut all dairy out of the SCD, in effect, you end up with the paleo diet, which is the diet that the human digestive system evolved on, over hundreds of thousands of years.
Also, if you are going to use dietary changes to achieve remission, "doing your best to be gluten free", may not be sufficient - we have to avoid all gluten, 100% of the time, if we hope to stop the autoimmune reaction that causes the inflammation that perpetuates MC. I realize that's not a simple thing to do, and none of us are perfect, but picture the treatment of this disease as climbing up a ladder to get out of the miserable pit that we find ourselves in. Every time we slip up on our diet, it knocks us back down the ladder by a rung or two. If that happens rarely, it's no big deal, because we will eventually successfully reach the top, to get our life back. If we slip up on our diet regularly, though, we will never be able to climb out of that pit, because our gut will never have a chance to heal, if we continue to damage it on a regular basis. Like any physical injury, it takes much longer for the gut to heal, that it does for the damage to develop.
Most of us are sensitive to gluten, all dairy products, and at least half of us are also sensitive to all forms of soy. Meticulously avoiding those 3 foods will get most of us to remission, (with or without meds). Some of us, though, have other food sensitivities, (such as egg, yeast, etc.), that we have to avoid, as well.
I felt the same way, until I cut out gluten, 100%. After that, by keeping a food diary, as Cynthia suggests, I was able to track down my other food-sensitivities.Karen wrote:At times it feels like I react to everything I eat.
Again, welcome aboard, and please feel free to ask anything.
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.
Welcome, Karen.
If you can tolerate Asacol, you might be able to tolerate Pepto Bismol as well - that was a helpful tool for me, when things are at their worst. But diet change is the most important key. Medications can help, but only turning off the source of the problem will bring lasting relief, and ongoing healing. I'm eating Paleo, probably above 99% of the time these days. I had a small serving of GF/DF cornbread at Thanksgiving, and recently ate a few chickpeas, but otherwise am grain- and legume-free. (This was my choice, and you may choose differently; many members of this forum do eat non-gluten grains such as rice or corn.)
Please keep us posted, and let us know how we can help you along this road,
Sara
If you can tolerate Asacol, you might be able to tolerate Pepto Bismol as well - that was a helpful tool for me, when things are at their worst. But diet change is the most important key. Medications can help, but only turning off the source of the problem will bring lasting relief, and ongoing healing. I'm eating Paleo, probably above 99% of the time these days. I had a small serving of GF/DF cornbread at Thanksgiving, and recently ate a few chickpeas, but otherwise am grain- and legume-free. (This was my choice, and you may choose differently; many members of this forum do eat non-gluten grains such as rice or corn.)
Please keep us posted, and let us know how we can help you along this road,
Sara
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KarenSmith
- Posts: 4
- Joined: Sun Dec 04, 2011 8:16 am
Thanks to Cynthia, Tex & Sara for your replies. I am going to go GF & DF and keep the food diary as was suggested. Will let you know of my progress. How long does it take to expect results with the diet changes? Also I didn't know that Asacol had lactose. What medication in this class would not have lactose? I have tried the Pepto Bismol in years past with no results but think I will try it again. I am so glad to have to support as it seems most people out there have never even heard of MC. I noticed there is a gastroenterologist not to far from me in Vancouver, Wa. that is on the "good Dr" list. May try a new Dr. also.
Karen
Karen
Karen,
As far as I am aware, (IOW, unless the manufacturers have changed the ingredients lately), all of the other brands of mesalamine are free of lactose. Asacol and Asacol HD both contain lactose, but Lialda, Apriso, Colazal, Pentasa, Salofalk, etc. are lactose-free. Lialda contains the most mesalamine per tablet.
Please be aware, though, that mesalamine is based on 5-aminosalicylic acid, which means that it is related to aspirin and other NSAIDs. Therefore, most people who are sensitive to NSAIDs, are also sensitive to mesalamine. IOW, for those individuals, mesalamine will typically cause the immune system to produce leukotrienes, which can trigger an MC reaction. Most doctors seem to be unaware of that risk, and they almost always act surprised when a patient tells them that the drug makes them sicker than they were to begin with. As long as you're not sensitive to NSAIDs, though, it should work OK.
http://www.nejm.org/doi/full/10.1056/NE ... 3263381320
The bad news is that when the damage to the intestines has been accumulating for years, it usually takes a long time for the intestines to heal. You may see improvements within a few weeks, but for those of us who have had MC for years, it usually takes 6 months or longer, to actually reach stable remission. We're all different, though, on how we actually respond. Presumably, genetics, and environmental factors also make a difference, but patience and perseverance will eventually get results, (unless additional food-sensitivities turn up, which will need to be avoided, also).
Of course, if you're taking a med, as well as changing your diet, you should see results much sooner, and the med should help to control the symptoms, while the diet changes allow the gut to heal.
Tex
As far as I am aware, (IOW, unless the manufacturers have changed the ingredients lately), all of the other brands of mesalamine are free of lactose. Asacol and Asacol HD both contain lactose, but Lialda, Apriso, Colazal, Pentasa, Salofalk, etc. are lactose-free. Lialda contains the most mesalamine per tablet.
Please be aware, though, that mesalamine is based on 5-aminosalicylic acid, which means that it is related to aspirin and other NSAIDs. Therefore, most people who are sensitive to NSAIDs, are also sensitive to mesalamine. IOW, for those individuals, mesalamine will typically cause the immune system to produce leukotrienes, which can trigger an MC reaction. Most doctors seem to be unaware of that risk, and they almost always act surprised when a patient tells them that the drug makes them sicker than they were to begin with. As long as you're not sensitive to NSAIDs, though, it should work OK.
http://www.nejm.org/doi/full/10.1056/NE ... 3263381320
The bad news is that when the damage to the intestines has been accumulating for years, it usually takes a long time for the intestines to heal. You may see improvements within a few weeks, but for those of us who have had MC for years, it usually takes 6 months or longer, to actually reach stable remission. We're all different, though, on how we actually respond. Presumably, genetics, and environmental factors also make a difference, but patience and perseverance will eventually get results, (unless additional food-sensitivities turn up, which will need to be avoided, also).
Of course, if you're taking a med, as well as changing your diet, you should see results much sooner, and the med should help to control the symptoms, while the diet changes allow the gut to heal.
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.