Life Without Bread or SCD, more questions

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Artzichic882
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Date Joined Dec 2007
Total Posts : 29
   Posted 10/12/2008 6:43 AM (GMT -7)   
I thought I posted this message last night but it must have not gone through. I have heard from several people recently about trying one of these diets in combination with the medication my doctors have and I did a lot of research last night but I still have a few questions I was wondering if people could help me with:

1) I have been on a low-residue diets basically since I was diagnosed. I know that fiber is a trigger for me. When others started this diet did they know that the carbs & sugar were a trigger for them, or did you figure that out after starting the diet.

2) How did you slowly start introducing fiber back into your diet, did you stick with pureed or cooked vegetables?

3) How long on the Life Without Bread diet do you have to stick strictly to the rules?

I am planning on ordering both books today to read them and think more about it, but I just had some general questions that I was curious about.

TIA!

______________________________________________________

You posted it in the UC forum, which duplicate posting is not allowed.  But obviously you are new, and so please just don't do it in the future. 

Post Edited By Moderator (MMMNAVY) : 10/12/2008 9:35:14 PM (GMT-6)


EMom
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Date Joined Aug 2007
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   Posted 10/12/2008 8:23 AM (GMT -7)   
When you say you're ordering both books, are you including "Breaking the Vicious Cycle" in that? Just curious. It will help explain why carbs and sugar are triggers. "Life Without Bread" probably does, too.

My understanding (correct me if I'm wrong, please someone) is that a low residue diet is completely in conflict with what the SCD or the LWB diet says. It is *possible* that once you have removed the bad carbs from your diet you will discover that fiber is not truly the "trigger" for you, but rather the *combination* of those bad carbs sitting in your intestines fermenting (wreaking havoc) along with the good carbs trying to pass through. Osprey101 can explain this far better that I...

As for question #3, it seems to me this is a life-style, permanent change if one wants to keep their condition under control, but hopefully Osprey and Crohnsboy will jump in here and answer.

Good luck to you!!!!!
Mom to 16 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium w/D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Gradually learning/using more SCD recipes, too! (cooking challenged)


Artzichic882
Regular Member


Date Joined Dec 2007
Total Posts : 29
   Posted 10/12/2008 10:19 AM (GMT -7)   
I meant to say I am going to get the "breaking the vicious cycle" book as well. EMom, I have the same understanding as you in terms of the triggers vs the bad carbs sitting in the intestines, I just wanted to make sure that my thinking was in line with what these books are trying to teach.
Diagnosed with Crohn's Disease at ileum 2.5 years ago.
Currently on: Prednisone & Pentasa


Keeper
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Date Joined Jun 2008
Total Posts : 1058
   Posted 10/12/2008 10:30 AM (GMT -7)   
The SCD and LWB both are based on the idea that carbs are not being digested and are feeding bad gut bacteria. Fiber is much more slowly digested by gut bacteria and the specific bacteria that digest fiber are probably different from the ones that digest starches best. The aim of LWB is to reduce the amount of carbs to a level that you are more able to digest and is a refinement on the SCD. This corresponds to the observation that in Crohn's, your digestive ability is greatly reduced and so you are not making the enzymes and acid needed to digest a lot of starch. The undigested starch causes a lot of the trouble. Low residue diets are good for IBS, which may accompany Crohn's.

I really don't see that you would go off a diet that works unless you have a complete remission of all symptoms - including not just D and C, but also skin and reflux and sinus and throat symptoms that almost certainly originate from Crohn's.

Margie11
Regular Member


Date Joined Aug 2008
Total Posts : 467
   Posted 10/12/2008 12:08 PM (GMT -7)   
Tia,
 
   I have to tell you first, I am in the Natural Products industry, but this came about after the Illness and the SCD. My MD who DX'd me was an OB/GYN who's job included training Mid-Wives in a large medical school envrioment, and was Pro-nutrition. All the cards were stacked my favor, and it took the diet and Western Medicine to help me. This was no easy task, I spent the two years prior to my diagnosis praying to die. Worse than the pain, after teaching myself to read at a young age, I could not understand what I read, had horrable fatigue and had major depression at 42 years old. This REALLY STINKS for a optimistic, workaholic geek. Thank God a man in a local health food store turned me on to some B Vitamins that I could absorb, so I began to think again.
   This can be a slow process, sometimes it takes quite a bit of time on these diets to heal enough to begin to ingest fiber.  I think I would be dead by now, if the GI doc that did my scope or my OB/GYN when I was dx'd had put me on a "low residue" diet. Any white enriched flour or white sugar in my diet still stops my healing progress and causes me huge pain. The only advise he offered me was "don't take NSAID's or narcotic pain killers". It was the last thing I wanted to hear. The arthritis pain was terrable at that time.
 
  #1  No, I did not know sugars and starches were an issue, but it made sense when I read it. The only trigger's I had I.D.'d at that point was Dairy and fiber like popcorn and seeds, but my pain level was so high, I had almost stopped eating, and thinking.(LOL)
 
  #2  I started with  Brasco Broth from Restoring Your Digestive Health book made with SCD legal items. I left out the chicken feet. then slowly added pureed veges from the soup, then added very ripe organic bananas to control D, but I had fewer GI symptoms than most who begin the diet. You  would likely do better with the Intro Diet, if you have more advanced disease. Much of my pain is due to Crohn's Arthritis, and subsided 7-10 days into the diet. This link may help you get started. I feel fiber is important, when my gut heals I want it full, to heal with as few narrowings as possible, but fiber is a problem until inflamation subsides.So goes the vicious cycle.
 
 
  #3 This varies according to a persons condition. My nephew who has had 2 surgeries prior to finding the SCD may never vary from the SCD, he just feels so much better, he may not chance adding more things. I was able to add some things after a year. I did this one new thing at a time, 10 days apart, as arthritic reactions tend to be quite delayed. So much time has passed, I barely remember reading the Life Without Bread Book, and cannot lay my hands on it right now due to a recent move, but you will recieve your copy before you need to make those decisions, and hopefully you will be feeling better and thinking more clearly too, if that is a issue for you. You sound very clear headed to me, so I am not trying to imply anything. 
 
   I hope this diet helps you as much as it did me. It is sometimes very overwhelming, but has given many people back thier lives.
 
Here are some links with some young peoples stories, hope you enjoy thier sites. Please remember we are all different, and somethings they eat may never work for you.
 
 


Crohn's for life, symptoms included terrible joint and soft tissue pain, just met first cousin who suffers from Reactive Arthritis-explains sooo much. Great control on SCD (when I'm good) and I get by with a lotta help from my friends!
 
                                              Margie11

Post Edited (Margie11) : 10/12/2008 1:40:26 PM (GMT-6)


Margie11
Regular Member


Date Joined Aug 2008
Total Posts : 467
   Posted 10/12/2008 12:36 PM (GMT -7)   

Opps Tia,

 I just found another web page that is really cool. It seems that this young man is not so strict, and his progress may be slowed as a result, but most of us made mistakes, and are still better off than before the diet. He too uses Western meds, surgery and diet to maintain a great quality of life.

http://www.incend.net/fanatical/index.php


Crohn's for life, symptoms included terrible joint and soft tissue pain, just met first cousin who suffers from Reactive Arthritis-explains sooo much. Great control on SCD (when I'm good) and I get by with a lotta help from my friends!
 
                                              Margie11


Artzichic882
Regular Member


Date Joined Dec 2007
Total Posts : 29
   Posted 10/12/2008 3:24 PM (GMT -7)   
Margie - Thank you for sharing your experience and websites. I ordered the books and can not wait for them to arrive. I am a little scared about all of the food I am going to miss but my health is more important. I am also scared because my husband has a sever nut allergy and we can not keep or cook with nuts in house so that is certainly going to be a challenge!
Diagnosed with Crohn's Disease at ileum 2.5 years ago.
Currently on: Prednisone & Pentasa


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 10/12/2008 4:04 PM (GMT -7)   
Hello,

I've been lurking around for awhile and decided I should join :). I think I'm ready to try the SC diet. My crohn's has actually been doing reasonably well since mid-August, but I have terrible fatigue. I would really miss my sweets, but I guess you gotta do what you gotta do. One of the things I find odd is that aloe juice isn't allowed. I had pain everyday from May through August, and tried a variety of things to help. When I started drinking 2 ounces of aloe juice a day (as well as quit eating meat), the pain stopped.



Holly

Osprey101
Regular Member


Date Joined Apr 2008
Total Posts : 227
   Posted 10/12/2008 4:12 PM (GMT -7)   
Artzi! Others have answered your questions very well. I've just skimmed them, and would comment thusly:

1) I have been on a low-residue diets basically since I was diagnosed. I know that fiber is a trigger for me. When others started this diet did they know that the carbs & sugar were a trigger for them, or did you figure that out after starting the diet.

I first thought I had celiac sprue, in which all wheat (and related- barley, rye, spelt- and oats) must be removed from the diet. I felt better, but not 100%. A few months later, I started the SCD, which is rooted in eliminating the wheat and oats, and that led to the slow decline in symptoms. It was startling how effective it was.

Fiber is part of it, yes; for example, orange juice itself is not bad from a sugars perspective, but the fiber in it is. This is to say, yes- the sugar is a problem, but the fiber is the bigger problem. Ever take fiber supplements have have symptoms get *worse*? There's the paradox.

2) How did you slowly start introducing fiber back into your diet, did you stick with pureed or cooked vegetables?

Stick with low-sugar veggies; I find cauliflower roasted under chicken (to absorb the fat and nutrients) is best. Carrots give me problems. Also note that fiber isn't essential for health, believe it or not. Read "Good Calories, Bad Calories." Much of human nutrition has been turned upside-down (and not in a good way) in the past century.

3) How long on the Life Without Bread diet do you have to stick strictly to the rules?

The rule of thumb is for at least 1 year after symptoms stop, as per BTVC. LWB presents it is a new paradigm for eating- the stuff that made you sick (starch and sugars) isn't a natural part of the human diet- not in the quantities that are consumed by the average American, anyway.

It also depends upon many factors, such as how long you have had the disease, the severity of your disease, and (presumably) the type of organisms responsible for your disease. I believe there is a mish-mash of organisms responsible- maybe Klebsiella, possibly "enteroadherent" E. coli, maybe mixed in with some MAP, possibly complicated in some people with T. whipplei- whatever imbalance in your gut flora has happened, it will take time to clear. Look for signs of improvement within 2 weeks. Look for dramatic improvement within 6-7 months, particularly if your disease is mild and/or have not had it for very long. At the 7-month point (of being on "pure" SCD, or 12 months of having given up wheat in my own mistaken self-diagnosis), I took a caving trip that entailed an 11-hour drive (each way), including a technical rope entry and egress both days, with hard digging underground. I packed all my food on dry ice, and I had not a single complaint.

Compare that with the same trip just a year and a half earlier, about 3 months before the D started and 10 months before I was formally diagnosed. It darn near killed me.

Now, at 9-1/2 months on a combination of SCD and LWB, I am eating Chipotle (in a bol- no wrapper!). No beans, but I have a small amount of rice with absolutely no discomfort or fallout. No pain, no meds, and I exercise 40-60 minutes at least 5-6 days a week.

Good luck!

yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 10/12/2008 4:20 PM (GMT -7)   
I gave up gluten 9 months ago and now can eat all fiber, when before I couldn't tolerate any. I haven't used any of the diets mentioned, just gluten, but it has worked wonders.
49 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.


EMom
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Date Joined Aug 2007
Total Posts : 990
   Posted 10/12/2008 5:16 PM (GMT -7)   
spookyhurst said...
Hello, I've been lurking around for awhile and decided I should join :). I think I'm ready to try the SC diet. My crohn's has actually been doing reasonably well since mid-August, but I have terrible fatigue. I would really miss my sweets, but I guess you gotta do what you gotta do. One of the things I find odd is that aloe juice isn't allowed. I had pain everyday from May through August, and tried a variety of things to help. When I started drinking 2 ounces of aloe juice a day (as well as quit eating meat), the pain stopped. Holly


Welcome, spookyhurst! I love lurkers!smilewinkgrin I had heard some people use aloe juice and had noticed it is on Elaine's illegal list. It is interesting. It may just be one of those things that helps some but is completely wrong for others.

Anyway, welcome and I hope the fatigue subsides for you! Most people notice that it does once the bad carbs are removed from their diet. Or could you possibly be anemic?
Mom to 16 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium w/D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Gradually learning/using more SCD recipes, too! (cooking challenged)


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 10/12/2008 5:53 PM (GMT -7)   
Is there anyone who found the SCD made them feel worse and couldn't do it? I haven't tried it but my reason is carbs seem to always be my safe food and veggies when I am sick are my enemy, as well as a lot of meats... so why would I cut out the foods I feel healthiest eating and rely on the foods that make me feel sickest? Sounds counterintuitive to me. I understand the logic behind the diet but with crohns being such an individual disease I wonder if there are some it would make sicker?
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 10/12/2008 6:04 PM (GMT -7)   
Me, but I am a bad bleeder and lets face it I have unusual crohns.


Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


spookyh
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Date Joined Oct 2008
Total Posts : 1342
   Posted 10/12/2008 6:49 PM (GMT -7)   
EMom,

I do have problems with anemia. I just had 4 venofer infusions in September. My hemoglobin gets above 13, but my ferritin levels are lucky to get to 12.

I was looking at some SC cookbooks on amazon. A few had some yummy looking recipes that made me more hopeful that I could live without my current vices (chocolate, ice cream, toaster strudels, etc.). Are there any cookbooks you have found especially good?

MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 10/12/2008 6:55 PM (GMT -7)   
spookyhurst,
Please look at our resource directory for SCD diet. I think there are several links you might want to check out.
Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


Rider Fan
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Date Joined May 2008
Total Posts : 1445
   Posted 10/12/2008 7:01 PM (GMT -7)   
I didn't do well on it. I always tolerated nuts well so I thought I'd be ok on it but it gave me lots of bleeding and needed a blood transfusion. For now I'm sticking to gluten, refined sugar and dairy free.
Dx'ed in 1999. No surgeries.

Current meds: 100 mg 6MP. Just finished prednisone taper. Udo's Choice Probiotics (30 billion).
 
Betaine, digestive enzymes, Candicin (oil of oregano capsules), Beta Sitosterol.


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 10/12/2008 7:16 PM (GMT -7)   
spookyhurst said...
I was looking at some SC cookbooks on amazon. A few had some yummy looking recipes that made me more hopeful that I could live without my current vices (chocolate, ice cream, toaster strudels, etc.). Are there any cookbooks you have found especially good?


These are the only two I have so far, but I really, really like them:

Eat Well, Feel Well, by Kendall Conrad (written by a mom wanting to save her daughter from Crohn's)

Recipes for the Specific Carbohydrate Diet, by Raman Prasad (lots of fun foods and different ethnic foods!)

There are more authors who have written SCD compliant cookbooks, but these two I can vouch for. Even their introductions and forwards are fascinating to read. Also, there are more recipes on the main SCD site and elsewhere on the internet. We are lucky!

I hope that anemia goes AWAY and you feel lots better soon!
Mom to 16 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium w/D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Gradually learning/using more SCD recipes, too! (cooking challenged)


Doc2007
Regular Member


Date Joined Oct 2007
Total Posts : 294
   Posted 10/12/2008 7:55 PM (GMT -7)   
spooky and mmmnavy! If I can encourage you to try the diet...I started flaring in the begining of September...I have had cramps every single day since September 1st. Multiple BMS, and three weeks ago I started bleeding dark maroon blood heavily! I am on 6 mp and so this stummped me...I found the SCD on wednesday and started it that night...the next day the cramps stopped! yesterday the blood stopped...today my stool was solid and I have had no cramps and my energy is the most its been in three weeks! Im perplexed and startled at how quick the SCD has worked...I too had given up meat three weeks ago. And was on a bland diet of scrambled eggs, boost, and mashed patatoes...None of is eased the pain...I have been eating the SCD chicken soup since Wednesday and again am SHOCKED!!! at the results...I have my first batch of yogurt fermenting on the counter! cant wait to make a smoothy tommorow night!

MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 10/12/2008 7:59 PM (GMT -7)   
Doc2007, you missed that it did not work for me.  I did it for 6 months, I wanted to get better with the least invasive process. Unfortunately, I ended up with having to get several blood transfusions and scope surgeries as a result of the SCD.  I also tried the makers, gluten free, etc... just did not work out for me.   I really hope this works for you in the long term, but that just did not happen for me.  Just goes to show you how individual this disease can be.
I do think trader joes rocks.  
 
Spooky,
I encourage you to do whatever you think is best.  I would recommend doing your own research.  But please make sure you are closely monitored no matter what you do.
TC,
Navy


Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...

Post Edited (MMMNAVY) : 10/12/2008 9:25:51 PM (GMT-6)


spookyh
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Date Joined Oct 2008
Total Posts : 1342
   Posted 10/12/2008 8:51 PM (GMT -7)   
I've got "Breaking the Vicious Cycle" reserved at my library. Unfortunately, that's the only SC diet related book they have. By the time I get all the information digested, it will be time for my first appointment with my new GI (beginning of November). If she doesn't see a problem (I don't really see why she would), I'll start the diet soon after.

Is the SC diet good for constipation? I used to take 1 Digestive Advantage Chronic Constipation pill and Metamucil wafers, which helped. However, since I've been taking Humira, I've had to add Milk of Magnesia and/or laxatives too. It would be great not to have to keep finding new ways to make my intestines move a little bit.

MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 10/12/2008 9:07 PM (GMT -7)   
See if you can interlibrary loan some of the others. Plus there are some on here.


Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


Keeper
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Date Joined Jun 2008
Total Posts : 1058
   Posted 10/12/2008 9:51 PM (GMT -7)   
Spooky - the initial thrust of the SCD is to stop D. If you have the other problem, you may need to add fiber - either by including much more fruit (watermelon and plums seems to work for me)or by taking a fiber supplement. The fiber supplement that appeals to me is something called Prodiem. It is a Novartis brand and you should ask your doctor about it, just to be sure that there are no counter-indications in your case. The fiber in it is not fermentable so it should not cause the problems that some have with fiber - the caplets contain Calcium Polycarbophil and the power is methyl cellulose. I don't know if it is available where you live, but if not, you may be able to find a different brand with those ingredients. Always drink lots of water before and after (during the day) taking fiber supplements, in addition to the full 8 oz glass you drink with it. Improperly rehydrated fiber supplements can cause blockages.

Margie11
Regular Member


Date Joined Aug 2008
Total Posts : 467
   Posted 10/12/2008 10:16 PM (GMT -7)   
Spooky.

Below is a link to info about the intro SCDiet. This may be of help to you while you wait to read the book. I also have C more often than D, but take Magnesium supplemants for C and muscle pain, and eat really ripe bananas to stop any D, as per Elaine's suggestions in the BTVC book.

http://www.breakingtheviciouscycle.info/beginners_guide/the_intro_diet2.htm


Crohn's for life, symptoms included terrible joint and soft tissue pain, just met first cousin who suffers from Reactive Arthritis-explains sooo much. Great control on SCD (when I'm good) and I get by with a lotta help from my friends!
 
                                              Margie11

Post Edited (Margie11) : 10/13/2008 7:18:28 AM (GMT-6)


randynoguts
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Date Joined Jan 2003
Total Posts : 6050
   Posted 10/13/2008 1:20 AM (GMT -7)   
there is no life without bread! why go on living if you dont eat bread? what would be the point? soft warm home baked bread, oh the joy.
randynoguts 



     http://www.geocities.com/randynogutsweb/


Margie11
Regular Member


Date Joined Aug 2008
Total Posts : 467
   Posted 10/13/2008 6:28 AM (GMT -7)   
Oh,

Those were the days, all 4 of my children make loaves of bread and hot rolls for Holidays. Now I can have some, but I stick to the whole grain kinds they have perfected after my DX and healing on SCD. Sometimes I wish I had not taught them to cook so well.
Crohn's for life, symptoms included terrible joint and soft tissue pain, just met first cousin who suffers from Reactive Arthritis-explains sooo much. Great control on SCD (when I'm good) and I get by with a lotta help from my friends!
 
                                              Margie11

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