Guest guest Posted September 28, 2009 Report Share Posted September 28, 2009 There are forums for Crohn's Disease like Crohnnies Chat. It used to be on ezboard, now it's on yuku.com but just do a search on it. I had heavy symptoms for the last eight years which hit me out of the blue. When they did the scopes (and I agree totally on being put under...) they did biopsies, said something about skipped disease patches, some other stuff and finally a blood test (Prometheus Labs) which determined for sure it was CD and not UC or Celiac. They first said Crohn's Colitis. Crohn's is from mouth to anus, UC is colon only. CCFA has a lot of information also. Have you had anything really stressful going on? That seems to set me off in some form or another. I don't think that's the only thing, seems like a mixture of things that trigger it. If you look up the intro diet and start SCD over, maybe that can help stop it in it's tracks. There's people on SCD and with CD here a lot longer that can help you also. Pecanbread.com is for the kids but has a great intro diet (more open than SCD) if you can't tolerate very much. Debbie 40 cd dx'd 3.17.02 scd originally 12.05 Hi everyone, I posted once before-new to the list. Has anyone experienced a remission from their disease for 5-10 years without doing anything really? I'm just mystified that after 8 years of having no symptoms suddenly they are back. What gives? I wasn't on SCD for the eight years or anything. I did the diet for maybe 3 months back in the mid nineties and took sulfasalazine and cortisone enemas (I think). Any one else on this drug now? Granted, I don't think I experienced the gravest form of Crohn's-- I never needed any surgery nor lost more than 15 pounds. Also, how is Crohn's diagnosed vs. Ulcerative Colitis? Do biopsies show different things? Is it where the disease is located (colon vs. small intestine?) Is it the kind of symptoms experienced? Is there a website or another list where the topic is these diseases and not the diet? I don't want to be too off topic here with my questions. So in one week I have my first appointment in 8 years with a gastroenterologist. I'm sure a colonoscopy will be the next step. I hope they put me under--- I had six of these in the past and was only given twilight sleep once. The rest were no meds and they were NO FUN. Thanks, Alli Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2009 Report Share Posted September 28, 2009 There are forums for Crohn's Disease like Crohnnies Chat. It used to be on ezboard, now it's on yuku.com but just do a search on it. I had heavy symptoms for the last eight years which hit me out of the blue. When they did the scopes (and I agree totally on being put under...) they did biopsies, said something about skipped disease patches, some other stuff and finally a blood test (Prometheus Labs) which determined for sure it was CD and not UC or Celiac. They first said Crohn's Colitis. Crohn's is from mouth to anus, UC is colon only. CCFA has a lot of information also. Have you had anything really stressful going on? That seems to set me off in some form or another. I don't think that's the only thing, seems like a mixture of things that trigger it. If you look up the intro diet and start SCD over, maybe that can help stop it in it's tracks. There's people on SCD and with CD here a lot longer that can help you also. Pecanbread.com is for the kids but has a great intro diet (more open than SCD) if you can't tolerate very much. Debbie 40 cd dx'd 3.17.02 scd originally 12.05 Hi everyone, I posted once before-new to the list. Has anyone experienced a remission from their disease for 5-10 years without doing anything really? I'm just mystified that after 8 years of having no symptoms suddenly they are back. What gives? I wasn't on SCD for the eight years or anything. I did the diet for maybe 3 months back in the mid nineties and took sulfasalazine and cortisone enemas (I think). Any one else on this drug now? Granted, I don't think I experienced the gravest form of Crohn's-- I never needed any surgery nor lost more than 15 pounds. Also, how is Crohn's diagnosed vs. Ulcerative Colitis? Do biopsies show different things? Is it where the disease is located (colon vs. small intestine?) Is it the kind of symptoms experienced? Is there a website or another list where the topic is these diseases and not the diet? I don't want to be too off topic here with my questions. So in one week I have my first appointment in 8 years with a gastroenterologist. I'm sure a colonoscopy will be the next step. I hope they put me under--- I had six of these in the past and was only given twilight sleep once. The rest were no meds and they were NO FUN. Thanks, Alli Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2009 Report Share Posted September 28, 2009 Is there a website or another list where the topic is these diseases and not the diet? I don't want to be too off topic here with my questions.Search yahoo groups. I think there's a crohns/colitis list. I hope you'll decide to try the diet and stay here though! Pour Dieu, pour terre,Alyssa 15UC April 2008, diagnosed Sept 2008SCD June 2009 (restarted)No meds except for the stupid iron pill I have to take that is SO illegal Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2009 Report Share Posted September 28, 2009 At 11:46 AM 9/28/2009, you wrote: Is there a website or another list where the topic is these diseases and not the diet? I don't want to be too off topic here with my questions. There are folks here who can answer questions about IBD. Be aware that almost all other sites relating to gut issues will tell you absolutely and totally that diet has nothing to do with your disease. That just isn't so. We hope you'll continue with us, learn to eat great and healthy food, and how to take control of your health. — Marilyn New Orleans, Louisiana, USA Undiagnosed IBS since 1976, SCD since 2001 Darn Good SCD Cook No Human Children Shadow & Sunny Longhair Dachshund Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2009 Report Share Posted September 28, 2009 I only mentioned Crohnnies Chat because that's one of the first online groups I joined. I post there sometimes and the mods/other posters are open to food questions. I did not mention any forums where I *know* it would be a problem. Most are happy to answer just about anything regarding CD because they have had to deal with it for years. Nobody really mentions food unless you specfically go to the recipe section which is not really active. It's not huge like it used to be but you'll get responses. I hope you stay with this group also. It has really helped me. Debbie 40 cd Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2009 Report Share Posted September 28, 2009 I only mentioned Crohnnies Chat because that's one of the first online groups I joined. I post there sometimes and the mods/other posters are open to food questions. I did not mention any forums where I *know* it would be a problem. Most are happy to answer just about anything regarding CD because they have had to deal with it for years. Nobody really mentions food unless you specfically go to the recipe section which is not really active. It's not huge like it used to be but you'll get responses. I hope you stay with this group also. It has really helped me. Debbie 40 cd Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2009 Report Share Posted September 28, 2009 I only mentioned Crohnnies Chat because that's one of the first online groups I joined. I post there sometimes and the mods/other posters are open to food questions. I did not mention any forums where I *know* it would be a problem. Most are happy to answer just about anything regarding CD because they have had to deal with it for years. Nobody really mentions food unless you specfically go to the recipe section which is not really active. It's not huge like it used to be but you'll get responses. I hope you stay with this group also. It has really helped me. Debbie 40 cd Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2009 Report Share Posted September 28, 2009 I want to thank all those who so kindly responded to my questions! I've been kind of dancing around the SCD diet for two weeks now. Doing it imperfectly. For example I told myself my symptoms weren't bad enough to really necessitate doing the intro diet, so I just jumped right into the middle of it. I have a four month old boy and a 2.5 year old boy and it's all I can do to get them fed let alone myself... I ask myself, " how bad do your symptoms need to get before you go for it 100%? " I'll stick around and keep at it hopefully reaching a point of total commitment. IF you do the diet imperfectly, does it just take longer for the bad bacteria to die off, or do they somehow thrive and overpopulate even on a meager diet in there? It seems like the diet really requires a leap of faith to go 100% because there are so many things that are easy to question about it, which can fuel doubts and slips. For now, I'm at least enjoying experimenting in the kitchen with cool almond flour recipes, and I swear that SCD yogurt and honey makes a frozen yogurt that tastes just like Pinkberry! Alli Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2009 Report Share Posted September 28, 2009 I want to thank all those who so kindly responded to my questions! I've been kind of dancing around the SCD diet for two weeks now. Doing it imperfectly. For example I told myself my symptoms weren't bad enough to really necessitate doing the intro diet, so I just jumped right into the middle of it. I have a four month old boy and a 2.5 year old boy and it's all I can do to get them fed let alone myself... I ask myself, " how bad do your symptoms need to get before you go for it 100%? " I'll stick around and keep at it hopefully reaching a point of total commitment. IF you do the diet imperfectly, does it just take longer for the bad bacteria to die off, or do they somehow thrive and overpopulate even on a meager diet in there? It seems like the diet really requires a leap of faith to go 100% because there are so many things that are easy to question about it, which can fuel doubts and slips. For now, I'm at least enjoying experimenting in the kitchen with cool almond flour recipes, and I swear that SCD yogurt and honey makes a frozen yogurt that tastes just like Pinkberry! Alli Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2009 Report Share Posted September 28, 2009 I want to thank all those who so kindly responded to my questions! I've been kind of dancing around the SCD diet for two weeks now. Doing it imperfectly. For example I told myself my symptoms weren't bad enough to really necessitate doing the intro diet, so I just jumped right into the middle of it. I have a four month old boy and a 2.5 year old boy and it's all I can do to get them fed let alone myself... I ask myself, " how bad do your symptoms need to get before you go for it 100%? " I'll stick around and keep at it hopefully reaching a point of total commitment. IF you do the diet imperfectly, does it just take longer for the bad bacteria to die off, or do they somehow thrive and overpopulate even on a meager diet in there? It seems like the diet really requires a leap of faith to go 100% because there are so many things that are easy to question about it, which can fuel doubts and slips. For now, I'm at least enjoying experimenting in the kitchen with cool almond flour recipes, and I swear that SCD yogurt and honey makes a frozen yogurt that tastes just like Pinkberry! Alli Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2009 Report Share Posted September 29, 2009 At 10:49 PM 9/28/2009, you wrote: It seems like the diet really requires a leap of faith to go 100% because there are so many things that are easy to question about it, which can fuel doubts and slips. Alli, One of the easiest ways to handle SCD is to put the whole family on it. My parents, for instance, are decidedly not SCD, but the meals I take over for Sunday lunch are SCD... and then I'll add something from Whole Food's hot bar that isn't, if something appeals to my husband. (He has a " thing " for WF mac-n-cheese, but since I just got 'round to making some SCD mock mac-n-cheese, he thinks he may switch to that. Which tells me that for him, it's the cheese sauce, not the macaroni.) Trust me, I understand questioning -- I did a LOT of it in my first year. I mean, all I had was a soft, mushy stool and urgency. I could cope with that a couple times a day, if I was careful. I really wasn't that sick, not compared to all the folks with Crohn's and UC, who were living in the loo. Uh-huh. I found out my obesity was linked to my gut issues. I found out my tiredness wasn't just because " I kept stuffing my face and wouldn't bother to control myself and lose some weight. " I found out a LOT of things were linked to my gut issues, including mood, and a tendency to fly off the handle at the least thing. I joke about " Marilyn Did It Again, " because I tested just about every one of Elaine's parameters. I tried to find ways around some of the restrictions. And, over and over, I was forced, by my own experiments, to acknowledge that Elaine knew what she was talking about. You're where I was, just about eight years ago. So... come on it! The water's fine. You won't be sorry you took the plunge. — Marilyn New Orleans, Louisiana, USA Undiagnosed IBS since 1976, SCD since 2001 Darn Good SCD Cook No Human Children Shadow & Sunny Longhair Dachshund Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2009 Report Share Posted September 29, 2009 At 10:49 PM 9/28/2009, you wrote: It seems like the diet really requires a leap of faith to go 100% because there are so many things that are easy to question about it, which can fuel doubts and slips. Alli, One of the easiest ways to handle SCD is to put the whole family on it. My parents, for instance, are decidedly not SCD, but the meals I take over for Sunday lunch are SCD... and then I'll add something from Whole Food's hot bar that isn't, if something appeals to my husband. (He has a " thing " for WF mac-n-cheese, but since I just got 'round to making some SCD mock mac-n-cheese, he thinks he may switch to that. Which tells me that for him, it's the cheese sauce, not the macaroni.) Trust me, I understand questioning -- I did a LOT of it in my first year. I mean, all I had was a soft, mushy stool and urgency. I could cope with that a couple times a day, if I was careful. I really wasn't that sick, not compared to all the folks with Crohn's and UC, who were living in the loo. Uh-huh. I found out my obesity was linked to my gut issues. I found out my tiredness wasn't just because " I kept stuffing my face and wouldn't bother to control myself and lose some weight. " I found out a LOT of things were linked to my gut issues, including mood, and a tendency to fly off the handle at the least thing. I joke about " Marilyn Did It Again, " because I tested just about every one of Elaine's parameters. I tried to find ways around some of the restrictions. And, over and over, I was forced, by my own experiments, to acknowledge that Elaine knew what she was talking about. You're where I was, just about eight years ago. So... come on it! The water's fine. You won't be sorry you took the plunge. — Marilyn New Orleans, Louisiana, USA Undiagnosed IBS since 1976, SCD since 2001 Darn Good SCD Cook No Human Children Shadow & Sunny Longhair Dachshund Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2009 Report Share Posted September 29, 2009 At 10:49 PM 9/28/2009, you wrote: It seems like the diet really requires a leap of faith to go 100% because there are so many things that are easy to question about it, which can fuel doubts and slips. Alli, One of the easiest ways to handle SCD is to put the whole family on it. My parents, for instance, are decidedly not SCD, but the meals I take over for Sunday lunch are SCD... and then I'll add something from Whole Food's hot bar that isn't, if something appeals to my husband. (He has a " thing " for WF mac-n-cheese, but since I just got 'round to making some SCD mock mac-n-cheese, he thinks he may switch to that. Which tells me that for him, it's the cheese sauce, not the macaroni.) Trust me, I understand questioning -- I did a LOT of it in my first year. I mean, all I had was a soft, mushy stool and urgency. I could cope with that a couple times a day, if I was careful. I really wasn't that sick, not compared to all the folks with Crohn's and UC, who were living in the loo. Uh-huh. I found out my obesity was linked to my gut issues. I found out my tiredness wasn't just because " I kept stuffing my face and wouldn't bother to control myself and lose some weight. " I found out a LOT of things were linked to my gut issues, including mood, and a tendency to fly off the handle at the least thing. I joke about " Marilyn Did It Again, " because I tested just about every one of Elaine's parameters. I tried to find ways around some of the restrictions. And, over and over, I was forced, by my own experiments, to acknowledge that Elaine knew what she was talking about. You're where I was, just about eight years ago. So... come on it! The water's fine. You won't be sorry you took the plunge. — Marilyn New Orleans, Louisiana, USA Undiagnosed IBS since 1976, SCD since 2001 Darn Good SCD Cook No Human Children Shadow & Sunny Longhair Dachshund Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2009 Report Share Posted September 29, 2009 Alli, Pecanbread.com has some kid friendly SCD recipes that you may enjoy too. My kids are older- and not on SCD. I've found that if I make an SCD legal main dish and vegetable dish, and also some illegal sides like rice or pasta, it makes a nice dinner. I just eat the legal food and let them eat what they like. I don't think SCD works half way. Elaine said it needs to be strictly adhered to. This is because even a small amount of illegal food is a feast for bacterial flora in the colon. Once you start to feel better, the sacrifice is well worth it. PJ > > I want to thank all those who so kindly responded to my questions! > > I've been kind of dancing around the SCD diet for two weeks now. Doing it imperfectly. For example I told myself my symptoms weren't bad enough to really necessitate doing the intro diet, so I just jumped right into the middle of it. I have a four month old boy and a 2.5 year old boy and it's all I can do to get them fed let alone myself... I ask myself, " how bad do your symptoms need to get before you go for it 100%? " I'll stick around and keep at it hopefully reaching a point of total commitment. IF you do the diet imperfectly, does it just take longer for the bad bacteria to die off, or do they somehow thrive and overpopulate even on a meager diet in there? It seems like the diet really requires a leap of faith to go 100% because there are so many things that are easy to question about it, which can fuel doubts and slips. > > For now, I'm at least enjoying experimenting in the kitchen with cool almond flour recipes, and I swear that SCD yogurt and honey makes a frozen yogurt that tastes just like Pinkberry! > > Alli > Quote Link to comment Share on other sites More sharing options...
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