Re: Re:Re: NEW MEMBER (Celiac patient) - Laboratory results and more

[Guest guest]

This is so interesting. Has anyone had any experience with 6mp? I was on it for 7 years (along with colozal...still am) and it worked like a dream and then I got a lower GI bug and it turned into colitis. The drugs now seems not to be working. I started Prednisone which got me somewhat better but I could hardly function on them so I'm tapering and really sticking to the diet, herbs and acupuncture. These are the only things that seem to be making it better. My doctor said perhaps 6mp isn't working anymore. How does one find this out? I also heard if you go off 6mp and then went back on it it won't work. I'm wondering if I can do the SCD diet and get off the medications. My fear is that it is helping a little but when you have inflammation you seem to need more than your maintenance medicine. I have Ulcerative Colitis and have had it for 12 years. Different medications work with different people- so it would be hard to say that one that works for someone else would be best for you. My doctor explained to me that there were 2 schools of thought on this: one is to go with the one that is mildest with the least side effects, the other is to use the most powerful one to kick the inflammation. This is something you and your doctor can discuss.So, of course, the questions about how the drugs work and what side effects are good ones. Some drugs work better on different areas of the GI tract as well, so it would depend on where you would need them.Labs vary according to your age and symptoms and condition. It would be important to tell your doctor about anything you are worried about.I guess the only wrong question is the one you don't ask!! I hope that you have a doctor who is willing to listen and answer them.The GI tract produces mucous as a protective barrier when it is inflamed. This process is explained in BTVC. Anything can irritate it, including foods that you are sensitive to, or poorly digested food, bacterial overgrowth, infection, and so on. Reducing this irritation is one of the goals of SCD and also medication.LDN works with the body to regulate the immune system. It is still in the experimental stage because there is not much interest in funding it, but the few studies suggest it has a good effect.Despite the discussions here on labs and medications, if you want to be on SCD, the main point of this board is to understand SCD and do it correctly. I hope you find it helpful, and that you feel better soon.PJ> > >> > > > > > > > > > > > > > > As others have mentioned, Dr. Haas worked with children, and they are more> > > likely to be able to successfully resume eating polysaccharides after their> > > gut dysbiosis has restabilized. Adults usually have other health issues> > > that play a role in "cure," not to mention having to deal with long-term> > > damage to their gut ecology, so for many adults remission is what they're> > > looking for, and it takes time. Many stay on SCD even after remission> > > because their digestions just don't work quite the same way again so there> > > is a risk of developing symptoms. Individual variation is tremendous among> > > people, not just in the SCD foods they can tolerate, but in their healing> > > time and what they continue to eat after they've reached their healing> > > point.> > > > > > > > > > > > I've been on SCD for more than six years; I hit my healing point during my> > > 3rd year. I stay on SCD because it is the only method I've found that helps> > > me keep my chronic symptoms under management. I was diagnosed with a> > > somewhat uncommon digestive disorder, Sphincter of Oddi dysfunction. Unlike> > > many others on SCD I have to be extremely careful with fiber, fat, spices> > > and carbohydrates. There are no medications that can help specifically with> > > this disorder, just alleviate some of the symptoms. I have symptoms every> > > time I eat (and drink) but thanks to SCD I've learned to keep the symptoms> > > minimal most of the time. I don't eat many of the permitted foods, but that> > > is OK. > > > > > > > > > > > > There's a neurological component with my digestive disorder, and I've gone> > > on to develop additional neuropathies and neurological conditions. So while> > > my digestion is under management, my body has continued to deteriorate,> > > albeit slowly. This happens. [shrug] I don't blame SCD or diet; it is just> > > the way my body is deteriorating. I can cope with the ongoing deterioration> > > better now that my digestive symptoms are minimal most of the time. Of> > > course I go through regular cycles of more severe digestive symptoms,> > > regardless of what I'm eating, because the disorder is neurological in> > > cause. Body systems never work alone; there are always interconnections.> > > > > > > > > > > > I've amazed my doctors, particularly my gastroenterologist, by my not> > > needing pain medication 24/7, as most patients with my disorder do. I have> > > continued to work full-time, unlike others with my digestive disorder. I> > > haven't needed to return for another ERCP and sphincterotomy, haven't needed> > > a biliary stent, which is something that most patients with Sphincter of> > > Oddi dysfunction require every few years. My Sphincter of Oddi has been> > > recovering from the occasional (once or twice a year) severe spasm on its> > > own. I might just be lucky, but I do give my diet (SCD foods) a lot of> > > credit, as they don't stress my digestion too much. My liver and pancreatic> > > functions are tested twice a year; my enzyme levels fluctuate slightly but> > > haven't yet returned to pre-sphincterotomy levels, nor has my bilirubin or> > > other markers. My routine blood work (also twice a year) continues to> > > remain better than expected (my cholesterol levels are excellent, especially> > > for someone my age), although some of my mineral levels are reaching> > > deficiency status, so I have to supplement some things and boost my> > > electrolytes regularly. I was diagnosed with pernicious anemia (B12> > > deficiency) 3 years ago, so I give myself regular injections. > > > > > > > > > > > > Two of the symptoms connected with Sphincter of Oddi dysfunction is> > > gastroparesis (slowly emptying stomach) and dysphagia (difficulty> > > swallowing). I have "failed" two gastric emptying studies, one before my> > > diagnosis, and another 2 years ago. My gastroenterologist wanted to see if> > > my stomach emptying levels had improved; they hadn't. I've had several> > > endoscopies, before and after diagnosis, checking for problems, trying to> > > improve my dysphagia. Although I have a narrower esophagus than most> > > people, the problem appears to be neuromuscular, so no improvement. I just> > > live with both conditions, and the pain and nausea and the impact on my> > > nervous system and vice versa. > > > > > > > > > > > > You do learn to cope with chronic symptoms. And you learn to deal with> > > deterioration in other body systems. SCD helps me remain as healthy as I> > > can be. I can live a fairly normal life. If I hadn't found discovered SCD> > > and changed my food choices, I'd be in seriously bad shape by now.> > > > > > > > > > > > Kim M.> > > > > > SCD 6 years> > > > > > Sphincter of Oddi dysfunction 6+ years> > > > > > neurological & spinal deterioration 3+ years> > > > > > > > > > > > >>>>>>>>>>>>>>>>>>>>>>> > > > > > > 3) Is there anyone out there who can verify subjective improvement with> > > objective (labs) improvement after adoption of the SCD? Please elaborate on> > > blood/diagnostic imaging improvements.> > >> >>

[Guest guest]

I was on 6 MP for several years - God knows why, because I don't think it ever did anything for me. At most, it perhapsmade it so I didn't get worse, but I can't be sure about that. It certainly didn't improve me. Plus I took first Azulfadine and then colazal for a number of years. I think I did better with the azulfadine, but only marginally and in retrospect and now that I know a lot more about it. Neither of them did that much for me. I was also on remicade - didn't help me at all. What did help me more than anything was the combo of SCD and LDN. You should check out LDN. after about 6 months with that combo - I stopped all other medication (except vitamins and probiotics, etc.) I've definitely had ups and downs along the way - it hasn't been perfect, but the trajectory is toward wellness,not increasing illness, I know much more about what is going on now - and knowledge is power - http://health.groups.yahoo.com/group/lowdosenaltrexone/MaraOn Aug 11, 2010, at 8:28 PM, tte Hohnen wrote:This is so interesting. Has anyone had any experience with 6mp? I was on it for 7 years (along with colozal...still am) and it worked like a dream and then I got a lower GI bug and it turned into colitis. The drugs now seems not to be working. I started Prednisone which got me somewhat better but I could hardly function on them so I'm tapering and really sticking to the diet, herbs and acupuncture. These are the only things that seem to be making it better. My doctor said perhaps 6mp isn't working anymore. How does one find this out? I also heard if you go off 6mp and then went back on it it won't work. I'm wondering if I can do the SCD diet and get off the medications. My fear is that it is helping a little but when you have inflammation you seem to need more than your maintenance medicine. I have Ulcerative Colitis and have had it for 12 years. <hohnen_esig_B_60red.png> Different medications work with different people- so it would be hard to say that one that works for someone else would be best for you. My doctor explained to me that there were 2 schools of thought on this: one is to go with the one that is mildest with the least side effects, the other is to use the most powerful one to kick the inflammation. This is something you and your doctor can discuss.So, of course, the questions about how the drugs work and what side effects are good ones. Some drugs work better on different areas of the GI tract as well, so it would depend on where you would need them.Labs vary according to your age and symptoms and condition. It would be important to tell your doctor about anything you are worried about.I guess the only wrong question is the one you don't ask!! I hope that you have a doctor who is willing to listen and answer them.The GI tract produces mucous as a protective barrier when it is inflamed. This process is explained in BTVC. Anything can irritate it, including foods that you are sensitive to, or poorly digested food, bacterial overgrowth, infection, and so on. Reducing this irritation is one of the goals of SCD and also medication.LDN works with the body to regulate the immune system. It is still in the experimental stage because there is not much interest in funding it, but the few studies suggest it has a good effect.Despite the discussions here on labs and medications, if you want to be on SCD, the main point of this board is to understand SCD and do it correctly. I hope you find it helpful, and that you feel better soon.PJ> > >> > > > > > > > > > > > > > > As others have mentioned, Dr. Haas worked with children, and they are more> > > likely to be able to successfully resume eating polysaccharides after their> > > gut dysbiosis has restabilized. Adults usually have other health issues> > > that play a role in "cure," not to mention having to deal with long-term> > > damage to their gut ecology, so for many adults remission is what they're> > > looking for, and it takes time. Many stay on SCD even after remission> > > because their digestions just don't work quite the same way again so there> > > is a risk of developing symptoms. Individual variation is tremendous among> > > people, not just in the SCD foods they can tolerate, but in their healing> > > time and what they continue to eat after they've reached their healing> > > point.> > > > > > > > > > > > I've been on SCD for more than six years; I hit my healing point during my> > > 3rd year. I stay on SCD because it is the only method I've found that helps> > > me keep my chronic symptoms under management. I was diagnosed with a> > > somewhat uncommon digestive disorder, Sphincter of Oddi dysfunction. Unlike> > > many others on SCD I have to be extremely careful with fiber, fat, spices> > > and carbohydrates. There are no medications that can help specifically with> > > this disorder, just alleviate some of the symptoms. I have symptoms every> > > time I eat (and drink) but thanks to SCD I've learned to keep the symptoms> > > minimal most of the time. I don't eat many of the permitted foods, but that> > > is OK. > > > > > > > > > > > > There's a neurological component with my digestive disorder, and I've gone> > > on to develop additional neuropathies and neurological conditions. So while> > > my digestion is under management, my body has continued to deteriorate,> > > albeit slowly. This happens. [shrug] I don't blame SCD or diet; it is just> > > the way my body is deteriorating. I can cope with the ongoing deterioration> > > better now that my digestive symptoms are minimal most of the time. Of> > > course I go through regular cycles of more severe digestive symptoms,> > > regardless of what I'm eating, because the disorder is neurological in> > > cause. Body systems never work alone; there are always interconnections.> > > > > > > > > > > > I've amazed my doctors, particularly my gastroenterologist, by my not> > > needing pain medication 24/7, as most patients with my disorder do. I have> > > continued to work full-time, unlike others with my digestive disorder. I> > > haven't needed to return for another ERCP and sphincterotomy, haven't needed> > > a biliary stent, which is something that most patients with Sphincter of> > > Oddi dysfunction require every few years. My Sphincter of Oddi has been> > > recovering from the occasional (once or twice a year) severe spasm on its> > > own. I might just be lucky, but I do give my diet (SCD foods) a lot of> > > credit, as they don't stress my digestion too much. My liver and pancreatic> > > functions are tested twice a year; my enzyme levels fluctuate slightly but> > > haven't yet returned to pre-sphincterotomy levels, nor has my bilirubin or> > > other markers. My routine blood work (also twice a year) continues to> > > remain better than expected (my cholesterol levels are excellent, especially> > > for someone my age), although some of my mineral levels are reaching> > > deficiency status, so I have to supplement some things and boost my> > > electrolytes regularly. I was diagnosed with pernicious anemia (B12> > > deficiency) 3 years ago, so I give myself regular injections. > > > > > > > > > > > > Two of the symptoms connected with Sphincter of Oddi dysfunction is> > > gastroparesis (slowly emptying stomach) and dysphagia (difficulty> > > swallowing). I have "failed" two gastric emptying studies, one before my> > > diagnosis, and another 2 years ago. My gastroenterologist wanted to see if> > > my stomach emptying levels had improved; they hadn't. I've had several> > > endoscopies, before and after diagnosis, checking for problems, trying to> > > improve my dysphagia. Although I have a narrower esophagus than most> > > people, the problem appears to be neuromuscular, so no improvement. I just> > > live with both conditions, and the pain and nausea and the impact on my> > > nervous system and vice versa. > > > > > > > > > > > > You do learn to cope with chronic symptoms. And you learn to deal with> > > deterioration in other body systems. SCD helps me remain as healthy as I> > > can be. I can live a fairly normal life. If I hadn't found discovered SCD> > > and changed my food choices, I'd be in seriously bad shape by now.> > > > > > > > > > > > Kim M.> > > > > > SCD 6 years> > > > > > Sphincter of Oddi dysfunction 6+ years> > > > > > neurological & spinal deterioration 3+ years> > > > > > > > > > > > >>>>>>>>>>>>>>>>>>>>>>> > > > > > > 3) Is there anyone out there who can verify subjective improvement with> > > objective (labs) improvement after adoption of the SCD? Please elaborate on> > > blood/diagnostic imaging improvements.> > >> >>

[Guest guest]

Thank you. I will check it out.XXXX I was on 6 MP for several years - God knows why, because I don't think it ever did anything for me. At most, it perhapsmade it so I didn't get worse, but I can't be sure about that. It certainly didn't improve me. Plus I took first Azulfadine and then colazal for a number of years. I think I did better with the azulfadine, but only marginally and in retrospect and now that I know a lot more about it. Neither of them did that much for me. I was also on remicade - didn't help me at all. What did help me more than anything was the combo of SCD and LDN. You should check out LDN. after about 6 months with that combo - I stopped all other medication (except vitamins and probiotics, etc.) I've definitely had ups and downs along the way - it hasn't been perfect, but the trajectory is toward wellness,not increasing illness, I know much more about what is going on now - and knowledge is power - http://health.groups.yahoo.com/group/lowdosenaltrexone/MaraOn Aug 11, 2010, at 8:28 PM, tte Hohnen wrote:This is so interesting. Has anyone had any experience with 6mp? I was on it for 7 years (along with colozal...still am) and it worked like a dream and then I got a lower GI bug and it turned into colitis. The drugs now seems not to be working. I started Prednisone which got me somewhat better but I could hardly function on them so I'm tapering and really sticking to the diet, herbs and acupuncture. These are the only things that seem to be making it better. My doctor said perhaps 6mp isn't working anymore. How does one find this out? I also heard if you go off 6mp and then went back on it it won't work. I'm wondering if I can do the SCD diet and get off the medications. My fear is that it is helping a little but when you have inflammation you seem to need more than your maintenance medicine. I have Ulcerative Colitis and have had it for 12 years.<hohnen_esig_B_60red.png>Different medications work with different people- so it would be hard to say that one that works for someone else would be best for you. My doctor explained to me that there were 2 schools of thought on this: one is to go with the one that is mildest with the least side effects, the other is to use the most powerful one to kick the inflammation. This is something you and your doctor can discuss.So, of course, the questions about how the drugs work and what side effects are good ones. Some drugs work better on different areas of the GI tract as well, so it would depend on where you would need them.Labs vary according to your age and symptoms and condition. It would be important to tell your doctor about anything you are worried about.I guess the only wrong question is the one you don't ask!! I hope that you have a doctor who is willing to listen and answer them.The GI tract produces mucous as a protective barrier when it is inflamed. This process is explained in BTVC. Anything can irritate it, including foods that you are sensitive to, or poorly digested food, bacterial overgrowth, infection, and so on. Reducing this irritation is one of the goals of SCD and also medication.LDN works with the body to regulate the immune system. It is still in the experimental stage because there is not much interest in funding it, but the few studies suggest it has a good effect.Despite the discussions here on labs and medications, if you want to be on SCD, the main point of this board is to understand SCD and do it correctly. I hope you find it helpful, and that you feel better soon.PJ> > >> > > > > > > > > > > > > > > As others have mentioned, Dr. Haas worked with children, and they are more> > > likely to be able to successfully resume eating polysaccharides after their> > > gut dysbiosis has restabilized. Adults usually have other health issues> > > that play a role in "cure," not to mention having to deal with long-term> > > damage to their gut ecology, so for many adults remission is what they're> > > looking for, and it takes time. Many stay on SCD even after remission> > > because their digestions just don't work quite the same way again so there> > > is a risk of developing symptoms. Individual variation is tremendous among> > > people, not just in the SCD foods they can tolerate, but in their healing> > > time and what they continue to eat after they've reached their healing> > > point.> > > > > > > > > > > > I've been on SCD for more than six years; I hit my healing point during my> > > 3rd year. I stay on SCD because it is the only method I've found that helps> > > me keep my chronic symptoms under management. I was diagnosed with a> > > somewhat uncommon digestive disorder, Sphincter of Oddi dysfunction. Unlike> > > many others on SCD I have to be extremely careful with fiber, fat, spices> > > and carbohydrates. There are no medications that can help specifically with> > > this disorder, just alleviate some of the symptoms. I have symptoms every> > > time I eat (and drink) but thanks to SCD I've learned to keep the symptoms> > > minimal most of the time. I don't eat many of the permitted foods, but that> > > is OK. > > > > > > > > > > > > There's a neurological component with my digestive disorder, and I've gone> > > on to develop additional neuropathies and neurological conditions. So while> > > my digestion is under management, my body has continued to deteriorate,> > > albeit slowly. This happens. [shrug] I don't blame SCD or diet; it is just> > > the way my body is deteriorating. I can cope with the ongoing deterioration> > > better now that my digestive symptoms are minimal most of the time. Of> > > course I go through regular cycles of more severe digestive symptoms,> > > regardless of what I'm eating, because the disorder is neurological in> > > cause. Body systems never work alone; there are always interconnections.> > > > > > > > > > > > I've amazed my doctors, particularly my gastroenterologist, by my not> > > needing pain medication 24/7, as most patients with my disorder do. I have> > > continued to work full-time, unlike others with my digestive disorder. I> > > haven't needed to return for another ERCP and sphincterotomy, haven't needed> > > a biliary stent, which is something that most patients with Sphincter of> > > Oddi dysfunction require every few years. My Sphincter of Oddi has been> > > recovering from the occasional (once or twice a year) severe spasm on its> > > own. I might just be lucky, but I do give my diet (SCD foods) a lot of> > > credit, as they don't stress my digestion too much. My liver and pancreatic> > > functions are tested twice a year; my enzyme levels fluctuate slightly but> > > haven't yet returned to pre-sphincterotomy levels, nor has my bilirubin or> > > other markers. My routine blood work (also twice a year) continues to> > > remain better than expected (my cholesterol levels are excellent, especially> > > for someone my age), although some of my mineral levels are reaching> > > deficiency status, so I have to supplement some things and boost my> > > electrolytes regularly. I was diagnosed with pernicious anemia (B12> > > deficiency) 3 years ago, so I give myself regular injections. > > > > > > > > > > > > Two of the symptoms connected with Sphincter of Oddi dysfunction is> > > gastroparesis (slowly emptying stomach) and dysphagia (difficulty> > > swallowing). I have "failed" two gastric emptying studies, one before my> > > diagnosis, and another 2 years ago. My gastroenterologist wanted to see if> > > my stomach emptying levels had improved; they hadn't. I've had several> > > endoscopies, before and after diagnosis, checking for problems, trying to> > > improve my dysphagia. Although I have a narrower esophagus than most> > > people, the problem appears to be neuromuscular, so no improvement. I just> > > live with both conditions, and the pain and nausea and the impact on my> > > nervous system and vice versa. > > > > > > > > > > > > You do learn to cope with chronic symptoms. And you learn to deal with> > > deterioration in other body systems. SCD helps me remain as healthy as I> > > can be. I can live a fairly normal life. If I hadn't found discovered SCD> > > and changed my food choices, I'd be in seriously bad shape by now.> > > > > > > > > > > > Kim M.> > > > > > SCD 6 years> > > > > > Sphincter of Oddi dysfunction 6+ years> > > > > > neurological & spinal deterioration 3+ years> > > > > > > > > > > > >>>>>>>>>>>>>>>>>>>>>>> > > > > > > 3) Is there anyone out there who can verify subjective improvement with> > > objective (labs) improvement after adoption of the SCD? Please elaborate on> > > blood/diagnostic imaging improvements.> > >> >>

[Guest guest]

> I was on 6 MP for several years - God knows why, because I don't think > it ever did anything for me. At most, it perhaps> made it so I didn't get worse, but I can't be sure about that. It > certainly didn't improve me. Plus I took first Azulfadine and then > colazal for a number of years. I think I did better with the > azulfadine, but only marginally and in retrospect and now that I know a > lot more about it. Neither of them did that much for me.>> I was also on remicade - didn't help me at all.>> What did help me more than anything was the combo of SCD and LDN. You > should check out LDN.> after about 6 months with that combo - I stopped all other medication > (except vitamins and probiotics, etc.)> I've definitely had ups and downs along the way - it hasn't been > perfect, but the trajectory is toward wellness,> not increasing illness, I know much more about what is going on now - > and knowledge is power ->> http://health.groups.yahoo.com/group/lowdosenaltrexone/>> MaraI've had a similar reaction with SCD and LDN.  I'm healthier than I've ever been in my life, and have started to be able to eat some non-diet stuff. (I definitely needed LDN along with the diet to get the level of healing I'm at now. And LDN has also drastically reduced my asthma symptoms (I take a quarter of the asthma med. I used to) and joint pain. n, Crohn's 30+ years>> >>> This is so interesting. Has anyone had any experience with 6mp? I was >> on it for 7 years (along with colozal...still am) and it worked like a >> dream and then I got a lower GI bug and it turned into colitis. The >> drugs now seems not to be working. I started Prednisone which got me >> somewhat better but I could hardly function on them so I'm tapering and >> really sticking to the diet, herbs and acupuncture. These are the only >> things that seem to be making it better. My doctor said perhaps 6mp >> isn't working anymore. How does one find this out? I also heard if you >> go off 6mp and then went back on it it won't work. I'm wondering if I >> can do the SCD diet and get off the medications. My fear is that it is >> helping a little but when you have inflammation you seem to need more >> than your maintenance medicine.>> I have Ulcerative Colitis and have had it for 12 years.>> <hohnen_esig_B_60red.png>>>>> >>>>>>>> Different medications work with different people- so it would be hard >>> to say that one that works for someone else would be best for you. My >>> doctor explained to me that there were 2 schools of thought on this: >>> one is to go with the one that is mildest with the least side effects, >>> the other is to use the most powerful one to kick the inflammation. >>> This is something you and your doctor can discuss.>>> So, of course, the questions about how the drugs work and what side >>> effects are good ones. Some drugs work better on different areas of >>> the GI tract as well, so it would depend on where you would need them.>>>>>> Labs vary according to your age and symptoms and condition. It would >>> be important to tell your doctor about anything you are worried about.>>> I guess the only wrong question is the one you don't ask!! I hope that >>> you have a doctor who is willing to listen and answer them.>>>>>> The GI tract produces mucous as a protective barrier when it is >>> inflamed. This process is explained in BTVC. Anything can irritate it, >>> including foods that you are sensitive to, or poorly digested food, >>> bacterial overgrowth, infection, and so on. Reducing this irritation >>> is one of the goals of SCD and also medication.>>>>>> LDN works with the body to regulate the immune system. It is still in >>> the experimental stage because there is not much interest in funding >>> it, but the few studies suggest it has a good effect.>>>>>> Despite the discussions here on labs and medications, if you want to >>> be on SCD, the main point of this board is to understand SCD and do it >>> correctly. I hope you find it helpful, and that you feel better soon.>>>>>> PJ>>>>>> >>> > > >>>> > > > >>> > > >>>> > > >>>> > > >>>> > > > As others have mentioned, Dr. Haas worked with children, and >>> they are more>>> > > > likely to be able to successfully resume eating polysaccharides >>> after their>>> > > > gut dysbiosis has restabilized. Adults usually have other health >>> issues>>> > > > that play a role in "cure," not to mention having to deal with >>> long-term>>> > > > damage to their gut ecology, so for many adults remission is >>> what they're>>> > > > looking for, and it takes time. Many stay on SCD even after >>> remission>>> > > > because their digestions just don't work quite the same way >>> again so there>>> > > > is a risk of developing symptoms. Individual variation is >>> tremendous among>>> > > > people, not just in the SCD foods they can tolerate, but in >>> their healing>>> > > > time and what they continue to eat after they've reached their >>> healing>>> > > > point.>>> > > >>>> > > >>>> > > >>>> > > > I've been on SCD for more than six years; I hit my healing point >>> during my>>> > > > 3rd year. I stay on SCD because it is the only method I've found >>> that helps>>> > > > me keep my chronic symptoms under management. I was diagnosed >>> with a>>> > > > somewhat uncommon digestive disorder, Sphincter of Oddi >>> dysfunction. Unlike>>> > > > many others on SCD I have to be extremely careful with fiber, >>> fat, spices>>> > > > and carbohydrates. There are no medications that can help >>> specifically with>>> > > > this disorder, just alleviate some of the symptoms. I have >>> symptoms every>>> > > > time I eat (and drink) but thanks to SCD I've learned to keep >>> the symptoms>>> > > > minimal most of the time. I don't eat many of the permitted >>> foods, but that>>> > > > is OK.>>> > > >>>> > > >>>> > > >>>> > > > There's a neurological component with my digestive disorder, and >>> I've gone>>> > > > on to develop additional neuropathies and neurological >>> conditions. So while>>> > > > my digestion is under management, my body has continued to >>> deteriorate,>>> > > > albeit slowly. This happens. [shrug] I don't blame SCD or diet; >>> it is just>>> > > > the way my body is deteriorating. I can cope with the ongoing >>> deterioration>>> > > > better now that my digestive symptoms are minimal most of the >>> time. Of>>> > > > course I go through regular cycles of more severe digestive >>> symptoms,>>> > > > regardless of what I'm eating, because the disorder is >>> neurological in>>> > > > cause. Body systems never work alone; there are always >>> interconnections.>>> > > >>>> > > >>>> > > >>>> > > > I've amazed my doctors, particularly my gastroenterologist, by >>> my not>>> > > > needing pain medication 24/7, as most patients with my disorder >>> do. I have>>> > > > continued to work full-time, unlike others with my digestive >>> disorder. I>>> > > > haven't needed to return for another ERCP and sphincterotomy, >>> haven't needed>>> > > > a biliary stent, which is something that most patients with >>> Sphincter of>>> > > > Oddi dysfunction require every few years. My Sphincter of Oddi >>> has been>>> > > > recovering from the occasional (once or twice a year) severe >>> spasm on its>>> > > > own. I might just be lucky, but I do give my diet (SCD foods) a >>> lot of>>> > > > credit, as they don't stress my digestion too much. My liver and >>> pancreatic>>> > > > functions are tested twice a year; my enzyme levels fluctuate >>> slightly but>>> > > > haven't yet returned to pre-sphincterotomy levels, nor has my >>> bilirubin or>>> > > > other markers. My routine blood work (also twice a year) >>> continues to>>> > > > remain better than expected (my cholesterol levels are >>> excellent, especially>>> > > > for someone my age), although some of my mineral levels are >>> reaching>>> > > > deficiency status, so I have to supplement some things and boost >>> my>>> > > > electrolytes regularly. I was diagnosed with pernicious anemia >>> (B12>>> > > > deficiency) 3 years ago, so I give myself regular injections.>>> > > >>>> > > >>>> > > >>>> > > > Two of the symptoms connected with Sphincter of Oddi dysfunction >>> is>>> > > > gastroparesis (slowly emptying stomach) and dysphagia (difficulty>>> > > > swallowing). I have "failed" two gastric emptying studies, one >>> before my>>> > > > diagnosis, and another 2 years ago. My gastroenterologist wanted >>> to see if>>> > > > my stomach emptying levels had improved; they hadn't. I've had >>> several>>> > > > endoscopies, before and after diagnosis, checking for problems, >>> trying to>>> > > > improve my dysphagia. Although I have a narrower esophagus than >>> most>>> > > > people, the problem appears to be neuromuscular, so no >>> improvement. I just>>> > > > live with both conditions, and the pain and nausea and the >>> impact on my>>> > > > nervous system and vice versa.>>> > > >>>> > > >>>> > > >>>> > > > You do learn to cope with chronic symptoms. And you learn to >>> deal with>>> > > > deterioration in other body systems. SCD helps me remain as >>> healthy as I>>> > > > can be. I can live a fairly normal life. If I hadn't found >>> discovered SCD>>> > > > and changed my food choices, I'd be in seriously bad shape by >>> now.>>> > > >>>> > > >>>> > > >>>> > > > Kim M.>>> > > >>>> > > > SCD 6 years>>> > > >>>> > > > Sphincter of Oddi dysfunction 6+ years>>> > > >>>> > > > neurological & spinal deterioration 3+ years>>> > > >>>> > > >>>> > > >>>> > > > >>>>>>>>>>>>>>>>>>>>>>>>>> > > >>>> > > > 3) Is there anyone out there who can verify subjective >>> improvement with>>> > > > objective (labs) improvement after adoption of the SCD? Please >>> elaborate on>>> > > > blood/diagnostic imaging improvements.>>> > > >>>> > >>>> >>>>>>>>>>-- Now available. A fine gift for cat lovers:Confessions of a Cataholic: My Life With the 10 Cats Who Caused My Addictionby n Van Tilwww.wordpowerpublishing.com ; signed copies; free shipping in U.S., reduced shipping elsewhere