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Crohn's Disease
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Posted 4/29/2009 8:23 PM (GMT 0)
Yes i agree with you there..exercise has become fun, something I never used to do. I bike a few miles back and forth to work just because I like it(even though co-workers ask if I got DUI lol). It is amazing how people react to some scd meals(and my friends dont sugar coat anything). It's a complete change in lifestyle and alot of people have lived with a fast food lifestyle including me its almost too much to ask to change that drastically. But life is too short, why not :) Nice first post el sabio.
Posted 4/30/2009 6:59 AM (GMT 0)
I need to take a page from your guy's books...exercise! I've never liked it, but really need to start. I'm not in very good shape at all. I'm kind of afraid of burning calories though, because I'm already too thin. Or maybe that's just an excuse to sit on my butt smilewinkgrin.

I'm trying to learn how to cook. I'm not exactly a natural, which is too bad, because my mom and grandma's are great cooks. Luckily, my mom has been coming up with SCD versions of old dishes we used to eat, and they come out quite tasty. I'm hoping her skills will rub off on me sometime. Last night, I managed to mess up the frozen yogurt...again. The first batch I made had chunks of hard cooked egg in it, because I didn't stir the egg/honey mixture well enough while it was cooking. The second batch had little chunks of hard butter in it (partly my mom's fault tongue) because I poured the melted butter into a cold yogurt/egg/honey mixture. The third batch was excellent! And last night's batch ended up overly rich (1/4 cup will do ya smhair).
Posted 4/30/2009 7:15 AM (GMT 0)
Those are honest mistakes anyone could do :) Well you see the better you get at cooking, oddly enough the more calories you get threw you lol. Odd how that works. You know you've figured it out when you find yourself eating SCD stuff like a pig and the weight starts flyin on.
Posted 4/30/2009 3:45 PM (GMT 0)
SCD is a lifestyle change, that's for sure. But the way I looked at my diagnosis was the disease is the actual lifestyle changer! I could either continue eating/living the same way or try alternative lifestyles to manage the disease. I'm still taking Lialda daily, still learning, but enjoying life more and more every day! It is actually quite liberating to me to be able to cook good meals and take control of my health.

Yes, get exercise! When I started I was so tired and could barely get through workouts until I found out I wasn't getting enough calories! Once you begin to exercise you need to take in more calories to sustain the workout. I began loosing more fat by eating more. It's great, I eat all day long and love it.

I've got a forum over at caloriecount.about.com for SCD recipes and nutrition content as well as participate in an exercise forum to keep myself motivated. Drop in!

One thing I failed to mention was about 1.5 months after starting the SCD my mind became so much more clear and focused! It was like putting glasses on for the first time and not realizing my eyesight was so bad. My PCP told me that it sometimes takes years and years to diagnose UC because usually symptoms are treated. In my case, depression, kidney stones, anemia, etc. were being treated instead of the underlying UC. Now that I'm taking nutrients into my body my mind is loving it.

RSW
Posted 5/1/2009 3:18 PM (GMT 0)

The docs still don't know whether what we call "Crohn's" has a single causal agent, or multiple causal agents, or whether the causal agent for one patient is the same as that for another. Which might explain why what works for one patient doesn't work for another. I believe even Elaine, the author of the book about the SCD diet, said the diet didn't work for everybody, and she had no idea why. Clearly, more research is needed and it's people like you, JPNutrionFirst, who might be catalysts in pushing the envelope of research.    

JPNutrionFirst, it's great you are paying attention to nutrition. The best IBD GI seems to be in the dark ages when it comes to understanding the role of nutrition. Even what should be simple matters like a) how to diagnose iron and vitamin D deficiency and b) how to treat it. Please keep us posted on how you do when you come off the pred.

Keeper, interestingly enough, the abstract you quoted says a mix of meds plus a "low starch diet" might help treat CD patients. The SCD forbids starch, so the protocol is at least not incompatible with SCD.  

"Crohn's disease (CD) is an immune-mediated gastrointestinal inflammatory disease, which could arise from an interplay between genetic and environmental factors. Klebsiella microbes were suggested to have a vital role in the initiation and perpetuation of the disease through the mechanism of molecular mimicry. This proposition is based on the results of various studies where significantly elevated levels of antibodies against the whole bacteria or preparations from Klebsiella microbes and antibodies to collagen types I, III, IV, and V were detected in patients with CD and patients with ankylosing spondylitis (AS). Molecular similarities were found between Klebsiella nitrogenase and HLA-B27 genetic markers and between Klebsiella pullulanase and collagen fibers types I, III, and IV. Furthermore, significantly positive correlations and cross-reactivity binding activities were observed between anti-Klebsiella and anticollagen antibodies among patients with CD and AS. Early treatment of CD patients with anti-Klebsiella measures is proposed, which may involve the use of antibiotics and low starch diet together with other traditionally used immunomodulatory, immunosuppressive, or biologic agents."

Post Edited (njmom) : 5/1/2009 9:29:43 AM (GMT-6)

Posted 5/1/2009 9:01 PM (GMT 0)
Yes, I think that the link between the Klebsiella and the the collagen sensitive antibodies is a large part of the development of Crohn's. When you can control the Klebsiella by diet or antibiotics or probiotics, there is less immune response and thus less inflammation. There is still the problem of autoimmune T cells. They will respond to the presence of collagens as well as Klebsiella. If you have tissue destruction (from injury, infection or the like) you will get loose collagen which can then trigger the immune response from the T cells. Diet and antibiotics/probiotics is only a relief or control measure. It is not a cure. Also, it will not succeed if there is ongoing inflammation resulting in tissue damage. The autoimmune reaction to collagen fibers may be able to cause enough damage to related tissues that it will produce more collagen fibers and more inflammation. That is why TNF inhibitors are useful. They can break the ongoing cycle of inflammation/collagen release/autoimmune response. This is not a cure - only a control. The real solution lies in the kind of discoveries that are described in the second link in my last post. For convenience, it is here: Faustman Labs
Posted 5/1/2009 11:58 PM (GMT 0)
Glad to see a book that's decades old and modern research can agree on something...blah
Posted 5/2/2009 3:01 PM (GMT 0)
So I just got the SCD books - does anyone have any advice on going on it? Cut one thing out a week?

I confess I am terrified of cutting out caffiene because I get migraines, and caffiene is about the best thing to help manage them. (Especially now that I have cut out NSAIDS.)
Posted 5/2/2009 3:34 PM (GMT 0)

duplessis3 said...
So I just got the SCD books - does anyone have any advice on going on it? Cut one thing out a week?

Hi duplessis3! Just wanted to let you know there is a support group at yahoo (BTVC-SCD) which you can join where there are many seasoned veterans who can answer specific questions about starting the SCD. They are truly experts! Maybe they will have some thoughts on caffeine and your migraines, as well!

That said, I think how one starts depends on their personal situation, for instance how severe your symptoms are at the time and food allergies (I see you have food allergies listed). My son was nearly without symptoms when we started (he had already removed sugar and processed foods), so we jumped in eating literally everything that is considered legal. Reading others experiences, I've realized many stay on the intro diet for literally months before they move on to more advanced foods.

Good luck to you!!!
Posted 5/3/2009 5:25 AM (GMT 0)
Just a couple more thoughts. If you already have strictures or heavy scarring, neither diet nor medication is going to improve it. If you decide to go SCD under those conditions, you could certainly get an obstruction if you ate things like whole nuts, skins and seeds from fruits and veggies, etc. Not everyone can tolerate every single food that's legal on the diet. You need to tailor it to your individual needs


Keeper, there's a poster on at the BTVC group that's very knowledgable about Klebsiella. He does his own homebrew experiments to grow Kp from his gut, and is trying to create antigen for antibody tests. Here are the links to a couple of his posts that you might be interested in:

http://health.groups.yahoo.com/group/BTVC-SCD/message/19532

http://health.groups.yahoo.com/group/BTVC-SCD/message/19478

http://health.groups.yahoo.com/group/BTVC-SCD/message/19485


duplessis3, I've written up an SCD "primer" in the past. Visit this link to see it (scroll down a little ways to a very long post :)):

https://www.healingwell.com/community/default.aspx?f=17&m=1408735
Posted 5/3/2009 4:39 PM (GMT 0)
I saw that! thanks, very good. Here I saw someone mention going on the diet slowly and others say jump in both feet first.
Posted 5/4/2009 12:44 AM (GMT 0)
Duplessis, if you have the book, Breaking the Vicious Cycle, it has directions for exactly how to start the diet. 
Posted 5/4/2009 3:44 PM (GMT 0)
Keeper, thanks for posting at BTVC. I love reading your guy's ideas about Kp and whatnot. Very interesting and informative!
Posted 5/4/2009 10:04 PM (GMT 0)
It is interesting to see JP (I think?) and his efforts to check for antibodies in his own system. I'm no biologist, so lab technique is not my strength. I just hope that something obvious is not messing up his tests. Thanks for the heads up on the Yahoo site!
Posted 5/4/2009 10:25 PM (GMT 0)
I believe this diets works. Did it for four months and all of my Crohn's symptoms went away. I agree that those who have failed lack patience, resolve, and more than likely made common mistakes. Such as eating almond products to soon, fruit consumption, etc. . .
Posted 5/5/2009 5:20 AM (GMT 0)
Keeper, I've read articles about how the next big medical breakthrough may come from someone in their garage. People sure do some interesting projects in their spare time!

http://www.reason.com/blog/show/130754.html
Posted 5/5/2009 5:46 AM (GMT 0)
@Jay25CA - in my view there are environmental factors that will defeat the SCD. Factors that upset the integrity of the gut lining could trigger a flare even with careful use of the SCD. However, using the SCD is a good aid in recovery and even helps prevent the problem to some extent - if you are making and eating your SCD legal yogurt regularly.
Posted 5/5/2009 6:32 AM (GMT 0)
I agree about the environmental factors. I've read about some SCD people whose symptoms kick up during allergy season or during stressful times.

I also agree that it's easy for people to make little mistakes that all add up to the diet not working as well as it should. Things like taking a probiotic with strains other than acidophilus (a lot of people mess up there), taking supplements that have starch, sugar, etc. in them, eating meats that have additives snuck in (watch out if it's been injected with chicken "broth"), eating peanut butter too soon, trying to replace all of their wheat flour items with almond flour items, dropping their meds too soon (not sure that I'll ever drop them completely), eating too much fruit/drinking too much fruit juice, etc. In my opinion, you need to do a lot of research pior to starting the diet, and join a support group. If I had relied on the book alone, I'd be making a crapload of mistakes. It's very helpful to learn from people who have been there and already made them for you :).
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