Guest guest Posted August 8, 2004 Report Share Posted August 8, 2004 From the moderator of the LI list: Only you can judge how poorly you feel, or if you need to see a Dr. immediately. Being on the SCD certainly can't hurt you, and if your flare is mild, a couple of days on the intro may make the difference. It seems that in recent times, even the docs who have said for years that diet has no impact on IBD, have come around to some extent. Even the CCFA now acknowledges (for the 1st time ever), that food could impact symptoms. So I think that if you go to any GI, and state that you are on a healthy diet, they are not going to tell you to begin eating sugar and carbs. I wish there was a way however, to convince them not to dismiss azulphadine as a drug for IBD. Based on a lot of feedback that Elaine (and the list) has gotten over the years, unless there is an allergy to sulphur, it seems to work better than Asacol. Another thing for you to consider (although you've only been on the SCD for 2 months) is the dreaded 3 month flare. Even Elaine doesn't know exactly why it happens, but unfortunately it does happen to some people. Keep us posted on your progress. Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2004 Report Share Posted August 8, 2004 Robbie, I am so sorry to hear about your child's flare. I sent 2 posts from the LI list about flares. Here are more ideas: *Test for clostridia http://www.breakingtheviciouscycle.info/knowledge_base/kb/clostridium_difficile.\ htm http://www.breakingtheviciouscycle.info/knowledge_base/kb/clostridium_difficile_\ antibiotics.htm http://www.breakingtheviciouscycle.info/knowledge_base/kb/clostridium_difficile_\ testing.htm *Mash the food in a blender *Use enzymes *Go back to the intro diet My best wishes for a speedy recovery! Mimi > I'm trying to not get discouraged as I know this happens a lot, but we are now (approx) 3 months SCD. is 4 yrs old and has UC. He was unresponsive to meds, so we tried SCD. He was on 15 mg prednisone and 1000 mg sulfasalazine and 3 wks in to the diet he started having completely normaly BM's! This was amazing! He was also on custom probiotics - the acidophilus only version. After 2 wks of normal bm's, his GI said we could go to 10mg prednisone. After about a week, I started seeing a slow regression and it's continued for several weeks now. We're now at 1500 mg sulfasalazine, 10mg prednisone still (gi hasn't recommended we go up at this point) and I quit doing the yogurt just in case and went back to probiotics (we started goat yogurt while was non symptomatic). > > I have asked the GI about a slower weaning schedule, but he hasn't responded - of course, I'm going through his nurse, but he didn't recommend that we up the prednisone at this point. > > If this is the 2-3 month flare I hear about, how long does it usually last? Is there something else I should or could be doing? Elaine doesn't go in to detail about the flare in the book that I remember, just that it happens sometimes. If anyone with UC has gone through this, can you share your experience with me? I'm also seriously trying to convince a friend who's daughter has UC to try SCD, but it's hard to justify it when my son is flaring while on it. I'm not doubting, but it's hard to explain, you know? Thank you in advance! > > Robbie > 4 yrs UC, 16 mos (gluten sensitive) SCD 3 months > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2004 Report Share Posted August 8, 2004 Thank you for the replies. I agree - I'm not willing to take off SCD just to start giving him starch and sugar again. He's eating healthier than he ever has and is happy on the diet. He loves so many fruits and veggies he was not willing to even try before, that I can't justify stopping just because he's no longer symptom free. He is on the sulfa drug, fortunately. I have to give his GI doc credit for that one. I don't know if his gi doc will acknowledge the impact of diet on symptoms, but I guess we'll see. We haven't actually seen him since we started SCD - but will see him in a week. As for the dreaded 3 month flare - about how long does that usually last? Do you know by chance? Thanks again! Robbie RE: UC flare - need help! >From the moderator of the LI list: Only you can judge how poorly you feel, or if you need to see a Dr. immediately. Being on the SCD certainly can't hurt you, and if your flare is mild, a couple of days on the intro may make the difference. It seems that in recent times, even the docs who have said for years that diet has no impact on IBD, have come around to some extent. Even the CCFA now acknowledges (for the 1st time ever), that food could impact symptoms. So I think that if you go to any GI, and state that you are on a healthy diet, they are not going to tell you to begin eating sugar and carbs. I wish there was a way however, to convince them not to dismiss azulphadine as a drug for IBD. Based on a lot of feedback that Elaine (and the list) has gotten over the years, unless there is an allergy to sulphur, it seems to work better than Asacol. Another thing for you to consider (although you've only been on the SCD for 2 months) is the dreaded 3 month flare. Even Elaine doesn't know exactly why it happens, but unfortunately it does happen to some people. Keep us posted on your progress. Love, For information on the Specific Carbohydrate Diet, please read the book _Breaking the Vicious Cycle_ by Elaine Gottschall and read the following websites: http://www.breakingtheviciouscycle.info and http://www.pecanbread.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2004 Report Share Posted August 8, 2004 had the UC blood panel done and it came out inconclusive - but definitely negative for C.Diff. And the strange thing is that Zithromax induced this colitis - I thought for sure he would be positive for C.diff. I may get the oat panel done just to satisfy my uncertainty. And the other suggestions are good, too - we aren't doing enzymes at the moment, but I think the No Fenol might be a good idea - and we tried the intro diet again, but he hates that yummy soup so I can't seem to do it more than a day, but maybe a no soup version might work. I'll keep everyone posted - and thank you! Robbie Re: UC flare - need help! Robbie, I am so sorry to hear about your child's flare. I sent 2 posts from the LI list about flares. Here are more ideas: *Test for clostridia http://www.breakingtheviciouscycle.info/knowledge_base/kb/clostridium_difficile.\ htm http://www.breakingtheviciouscycle.info/knowledge_base/kb/clostridium_difficile_\ antibiotics.htm http://www.breakingtheviciouscycle.info/knowledge_base/kb/clostridium_difficile_\ testing.htm *Mash the food in a blender *Use enzymes *Go back to the intro diet My best wishes for a speedy recovery! Mimi > I'm trying to not get discouraged as I know this happens a lot, but we are now (approx) 3 months SCD. is 4 yrs old and has UC. He was unresponsive to meds, so we tried SCD. He was on 15 mg prednisone and 1000 mg sulfasalazine and 3 wks in to the diet he started having completely normaly BM's! This was amazing! He was also on custom probiotics - the acidophilus only version. After 2 wks of normal bm's, his GI said we could go to 10mg prednisone. After about a week, I started seeing a slow regression and it's continued for several weeks now. We're now at 1500 mg sulfasalazine, 10mg prednisone still (gi hasn't recommended we go up at this point) and I quit doing the yogurt just in case and went back to probiotics (we started goat yogurt while was non symptomatic). > > I have asked the GI about a slower weaning schedule, but he hasn't responded - of course, I'm going through his nurse, but he didn't recommend that we up the prednisone at this point. > > If this is the 2-3 month flare I hear about, how long does it usually last? Is there something else I should or could be doing? Elaine doesn't go in to detail about the flare in the book that I remember, just that it happens sometimes. If anyone with UC has gone through this, can you share your experience with me? I'm also seriously trying to convince a friend who's daughter has UC to try SCD, but it's hard to justify it when my son is flaring while on it. I'm not doubting, but it's hard to explain, you know? Thank you in advance! > > Robbie > 4 yrs UC, 16 mos (gluten sensitive) SCD 3 months > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2004 Report Share Posted August 8, 2004 Here is Elaine's response about " flares " . ------------------ I will address some of your questions but I do believe the following information was taken from a website and is something I wrote: <<Another concern that is sort of related is that bacteria can go dormant if they sense they are in a nutrient limiting environment. So if someone goes SCD, they attempt to starve out the bacteria. The bacteria would then attempt to go dormant in such an environment (that ones that weren't killed off initially). The flares might follow a cycle where some bacteria might try to re-emerge.particularly if new foods were introduced. If bacteria go dormant, that means you would really not totally eradicate them and they would be a persistent threat. You would have to stay SCD just to break even.>> This was my supposition when I wrote the above and still is but only G knows! Furthermore, the bacteria that go dormant most often form spores which, to which you allude, are not killed by most antibiotics. Since hundreds of SCD successes have remained well for many years - over ten years as I have been keeping score - as time goes on and people watch their diet as I advise them in my book, it has been TOTALLY PROVEN that eventually the microflora return to a harmonious balance. We both know that what I mean by " watch their diet " is that they do not return to french fries and ketchup or another rendition of the standard American diet. There is one exception to this long term symptom-free recovery and I have noted this a few times and this has to do with Clostridium difficile raising it sugly head. I have followed two patients carefully and am now observing another. When they are given vancomysin/or flagyl, they get rid of the Clostridium and go on for years as healthy, cured people. I will quote you a bit from Dr. Haas's textbook which anyone interested in this subject should acquire from used books on the internet: " Our hypothesis is that there is some mechanism in the intestinal tract of celiac suffers which converts polysaccharides into substances that are irritating to the intestinal tract. These irritants cause such rapid motility of the gut that absroption is interferred with an malnutrition results. We base this view on facts which we have observed in treating over 600 cases of celiac disease. When all carbohydrates except those that are found in fruits, vegetables and protein milk (yogurt) are withdrawn from the diet, the diarrhea disappears and nutrition improves. If, however, during the period of normal intestinal activity and nutrition that follows soon after the institution of the proper diet, the patient INGESTS A SMALL AMOUNT OF BREAD, COOKIE, CAKE, CANDY, SUGAR, PLAIN MILK, POTATO, OR ANY OTHER FOOD CONTAINING POLYSACCHARIDES, a loose or watery stool will occur within from 6 - 18 hours. The patient will return to normalcy in intestinal activity and nutrition if no more of the offending foods are fed. We have observed, furthermore, tha tthis cycle may be repeated many times in the same individuals, although if DONE FREQUENTLY AND PERSISTENLY ENOUGH IT WILL RESULT in a more prolonged period of diarrhea until intestinal activity and nutrition can be restored to normalcy by the use of " carbohydrate specific " diet. Elaine -------------------------- Jody mom to -5 and -7 SCD 18 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2004 Report Share Posted August 8, 2004 Robbie, Although my child does have the severe kind of UC she was diagnosed last Jan. by Dr. Krigsman, but it's more at the cellular level. We did Sulfasalazine for almost 6 months. I had to take her off it due to side effects and she is doing well with only SCD. We are also in the dreaded 3 month flare but for us it starts at 2 months. This exact same thing happened our last go round. She is tired, whiney, behavior regression, urinates a lot, very dark circles. I cannot tell you how long it lasts but we have been in it about a week and a half. You are not alone in this. I know how difficult it is because I have been seeing behaviors that were long since gone. Just hang in there. I am sure it won't last too long past the 3rd month. SCD has really helped us get off the meds and she is doing so much better with her GI issues. Kathy mom to Hannah-13, NT and Abby-9, ASD, UC and SCD restarted 9 weeks ago > > " As for the dreaded 3 month flare - about how long does that usually last? Do you know by chance? Thanks again! " > > > > > > > For information on the Specific Carbohydrate Diet, please read the book _Breaking the Vicious Cycle_ by Elaine Gottschall and read the following websites: > http://www.breakingtheviciouscycle.info > and > http://www.pecanbread.com > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2004 Report Share Posted August 9, 2004 Hi Robbie, > I'm trying to not get discouraged as I know this happens a lot, but we are now (approx) 3 months SCD. is 4 yrs old and has UC. He was unresponsive to meds, so we tried SCD. He was on 15 mg prednisone and 1000 mg sulfasalazine and 3 wks in to the diet he started having completely normaly BM's! This was amazing! He was also on custom probiotics - the acidophilus only version. After 2 wks of normal bm's, his GI said we could go to 10mg prednisone. After about a week, I started seeing a slow regression and it's continued for several weeks now. We're now at 1500 mg sulfasalazine, 10mg prednisone still (gi hasn't recommended we go up at this point) and I quit doing the yogurt just in case and went back to probiotics (we started goat yogurt while was non symptomatic). > > I have asked the GI about a slower weaning schedule, but he hasn't responded - of course, I'm going through his nurse, but he didn't recommend that we up the prednisone at this point. > > If this is the 2-3 month flare I hear about, how long does it usually last? It depends. I went through the three month flare and had to go to the ER. The doctors put me on a short course of prednisone which I managed to get off relatively quickly. My flare was set off by a number of things. This flare was over pretty quickly once I had the prednisone and being on the diet. (As a side note the ER docs were amazed at my bloodwork. They someone who was as sick as I was and who had been as sick as I was in the previous two years had amazing lab results, all my iron, potassium etc. were at perfect levels. Far from the norm for people with bowel disease.) > Is there something else I should or could be doing? Elaine >doesn't go in to detail about the flare in the book that I remember, just that it happens sometimes. If anyone with UC has gone through this, can you share your experience with me? Most people who go through the three month flare usually cut back what they are eating to more basic foods and/or increase their meds to get over the hump. What is eating these days? What are his bm's like, frequency etc.? All supplements and meds? If you like you can write me off- list: sheilatrenholm@... Sheila 42 mos SCD, 20 yrs UC mom of SCD 27 mos Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.