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03-25-2013, 08:24 AM   #61
Ya noy
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Is your husband allowed white spelt flour? It makes lovely bread and, being an ancient grain, causes far fewer allergies than wheat.
I think they want him to stick to wheat because it's already been eliminated as an allergen for him, but it's just a for a few more weeks until they're finished running the tests.

We normally have been mixing spelt and other ancient grains into our bread flour.
03-25-2013, 10:12 AM   #62
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Happy to join this group! Am mom of a wonderful youngster, early teens, dg with Crohn's in June 2012 during traumatic hospitalization. Was on prednisone all summer, and as she tapered we started SCD. I probably won't share more family details out of respect for her privacy. But her bloodwork was totally normal in December so now we are treating this as a remission with diet.

Got absolutely NO support for this from doctors. Never expect most traditional doctors to do more than give you an amused smile and subtle signals that you are crazy. Even after completely normal bloodwork and symptom-free child after only 4 mos of the diet, the most I got was friendly, noncommittal congratulations and the gracious acceptance of the Breaking the Vicious Cycle book from my hands (I purchased two: one for the doctor, and one for the nutritionist in her office who DEFINITELY should at least have MENTIONED SCD to us).

Okay, I am a little bitter.

But we did it. We are doing it. You can too. It is a breath of fresh air to join this upbeat, positive group after slogging through all the depressing stuff on the boards "out there"

We continue on Pentasa, though it seems we might not need to do so. Better safe than sorry for now. Also we use a great probiotic and make a lot of smoothies with the yogurt. We do use raw cocoa, which technically makes us on the GAPS diet, not SCD, but whatever.

And also: I do not want to live in a world without pancakes. That was one of the first things we brought back -- SCD legal and delicious. Will post recipe when I have a bit more time. It's from Steven Wright's SCD Lifestyle Blog so you can just google "SCD Pancakes" and you should get it.
03-25-2013, 10:55 AM   #63
Charleigh
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Happy to join this group! Am mom of a wonderful youngster, early teens, dg with Crohn's in June 2012 during traumatic hospitalization. Was on prednisone all summer, and as she tapered we started SCD. I probably won't share more family details out of respect for her privacy. But her bloodwork was totally normal in December so now we are treating this as a remission with diet.

Got absolutely NO support for this from doctors. Never expect most traditional doctors to do more than give you an amused smile and subtle signals that you are crazy. Even after completely normal bloodwork and symptom-free child after only 4 mos of the diet, the most I got was friendly, noncommittal congratulations and the gracious acceptance of the Breaking the Vicious Cycle book from my hands (I purchased two: one for the doctor, and one for the nutritionist in her office who DEFINITELY should at least have MENTIONED SCD to us).

Okay, I am a little bitter.

But we did it. We are doing it. You can too. It is a breath of fresh air to join this upbeat, positive group after slogging through all the depressing stuff on the boards "out there"

We continue on Pentasa, though it seems we might not need to do so. Better safe than sorry for now. Also we use a great probiotic and make a lot of smoothies with the yogurt. We do use raw cocoa, which technically makes us on the GAPS diet, not SCD, but whatever.

And also: I do not want to live in a world without pancakes. That was one of the first things we brought back -- SCD legal and delicious. Will post recipe when I have a bit more time. It's from Steven Wright's SCD Lifestyle Blog so you can just google "SCD Pancakes" and you should get it.

Thanks for sharing. My son is 11 (almost 12) and he is also having success without meds on SCD. It can be very frustrating and very embittering when you work so hard and see results and they are brushed off by medical professionals. E's doctor cannot deny that he is doing great but the little comments get to me. Things like. "this happens with crohn's, comes and goes for no reason". Seriously, I (as his mom) have worked my backside off feeding this child and he has given up alot of great foods. This isn't just "coincidence"!!! Also, after E's last check-up and there was no blood in his stool and his growth had taken off, etc the doctor scratched his head and said, "I originally said that E was diagnosed with moderate to severe crohn's but I think I need to change that diagnosis. Moderate to severe crohn's does not improve like this in only 4 months, especially without medication." So, you made a diagnosis based on good information (what he saw with the scope, pics, symptoms, labwork, etc) and now because he is doing so great without meds you are going to go back and CHANGE his diagnosis. That doesn't seem very scientific to me? All of this to say, I KNOW how you feel!
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03-25-2013, 07:55 PM   #64
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ImageUploadedByTapatalk1364258992.862789.jpg

Tomato basil soup with havarti, baby swiss and muenster grilled cheese sandwich (made with coconut flour paleo bread).

I have to say, considering that it was SCD-bread, which is somewhat of a contradiction in itself, it was pretty darn tasty!
03-25-2013, 08:03 PM   #65
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Oh and on the topic of western medicine's absurd notion that a DIGESTIVE disease couldn't possibly be affected by anything you EAT is quite ridiculous really. My 6 yr old knows better than that.

Speaking of which this article pissed me off on behalf of the SCD. Shame on the author for being so discouraging of the diet.

I http://www.webmd.com/digestive-disor...-review?page=1

I would have written to her but i couldn't find a way to do it!
03-25-2013, 09:00 PM   #66
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Hello everyone. On SCD since June 2012. Doing well on it, as long as I don't cheat, or worse...as I did recently, binge. This diet, when not deviating, makes a huge difference for me. I take no meds what-so-ever. I want to avoid them as long as possible. For those starting, make sure that you can handle the carrots, I couldn't. Once I eliminated them I began seeing results. This diet is not black and white. Just because the "legal" list says it should be okay, doesn't mean it will be for you, yet. It took me awhile to learn the queues from my body as to which foods are friendly, and which foods aren't. I'm looking forward to learning from others here, who are on the diet.
03-26-2013, 07:20 AM   #67
Charleigh
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Hello everyone. On SCD since June 2012. Doing well on it, as long as I don't cheat, or worse...as I did recently, binge. This diet, when not deviating, makes a huge difference for me. I take no meds what-so-ever. I want to avoid them as long as possible. For those starting, make sure that you can handle the carrots, I couldn't. Once I eliminated them I began seeing results. This diet is not black and white. Just because the "legal" list says it should be okay, doesn't mean it will be for you, yet. It took me awhile to learn the queues from my body as to which foods are friendly, and which foods aren't. I'm looking forward to learning from others here, who are on the diet.

We definitely found this to be true. Some things that E could not eat at first have become okay as he has healed though. He couldn't eat carrots at first but now he can tolerate them. Same with berries, etc. Also, beef was a huge no-no in any form in the beginning. Now, he can tolerate a limited amount of ground beef (but no steak, roast, etc).
03-26-2013, 09:03 AM   #68
Beach
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Hmm, that paleo bread really does look better than I thought it would turn out! I'll have to run across town to a store that carries such items and see what they have for sale.

Yeah, I think it comes as a surprise for many to learn that of all the years spent in medical school, most physicians typically receive only a few weeks training on nutrition and diets, and overall care little about diets.

Dr. Eades has written a few interesting articles about the problem. One piece of his that I recall.

"Mitochondria rejuvenating diet the nutritional ‘experts’ bash"

http://www.proteinpower.com/drmike/w...-experts-bash/

snippet from his article:

The subtitle of this post could just as easily have been: Feed your mitochondria right.

The two videos below pretty much tell the whole sad tale of doctors and nutrition. Taken together, they confirm the widespread notion that doctors, in general, know very little about nutrition and seem to be proud to keep it that way.

This first video has made the rounds on the internet. I’ve had it sent to me or recommended to me a dozen times, but I had never watched it until just a few days ago. I was put off because of its length, which, at a little over 17 minutes, seems like an eternity in internet viewing time. But I hope anyone reading this post doesn’t make the mistake I did and avoid watching because of the length. It is a spectacular talk given by Dr. Terry Wahls, a female physician who was struck down by a relentlessly progressive neurodegenerative disorder. She describes how she was able to restore her health by revamping her diet in in a way designed to properly feed her mitochondria.* The transformation is almost unbelievable, especially considering the disease she was battling. If you haven’t already seen this video – watch it. I guarantee you’ll be glad you did. And while you watch, pay careful attention to what her diet doesn’t contain much of.

After you’ve seen the above video, take a look at the one below. It is a little over 2 minutes long and was developed to give doctors – who, for the most part, don’t give a flip about diet – advice they can pass along to their obese or overweight patients. Watching the longer video above first will give you more context to better appreciate the one below and show you just how lame mainstream medicine can be.

This video came from Medscape, a subscription service for doctors to keep them abreast of all the latest and greatest news and updates from the world of mainstream medicine....
03-26-2013, 09:58 AM   #69
Charleigh
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CrohniePilot is that the bread from the website? hmmm....it looks great!
03-26-2013, 08:50 PM   #70
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CrohniePilot is that the bread from the website? hmmm....it looks great!
Yeah... The coconut version. Considering it an SCD simulation of something that resembles bread, its really good!
03-27-2013, 07:35 AM   #71
Beach
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Disappointing! Yesterday I stopped by two local stores that have alternative breads. One sells brand names, and the other bakes unique breads along with selling other brands. Neither had a paleo type bread. I might have to break down and order some over the internet.
03-27-2013, 06:27 PM   #72
Ya noy
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Disappointing! Yesterday I stopped by two local stores that have alternative breads. One sells brand names, and the other bakes unique breads along with selling other brands. Neither had a paleo type bread. I might have to break down and order some over the internet.
Beach,

if you are still in Chicagoland, well, there are stores all over that Sell Julian Bakery's paleo bread. There are 6 right within my immediate vicinity, but I do live in the Western suburbs. To find the closest retail store that sells it near you, just type in your zip code In this locator link:

http://www.julianbakery.com/locator/
03-27-2013, 06:27 PM   #73
Ya noy
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Yeah... The coconut version. Considering it an SCD simulation of something that resembles bread, its really good!
Good to hear you're enjoying it.
03-27-2013, 07:07 PM   #74
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What is a GAPS diet? and what are the specifics for SCD??? I have been gluten free about 2 months now which is the paleo diet I think???? i could really use some advice on this stuff im so tired and losing a lot of weight from not eating...thanks.....
03-27-2013, 08:32 PM   #75
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Hey all! I am new to the forum and since I started the Paleo diet 4, months ago with complete success, I decided that perhaps I might be able to offer some support. I have Crohn's Disease and this diet, I believe, has saved my life.
03-27-2013, 09:44 PM   #76
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What exactly is the paleo diet?? I have stopped eating gluten but might not be doing it right i still am having issues with my stomach..
03-28-2013, 12:11 AM   #77
Ya noy
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GAPS stands for Gut and Psycholgy Syndrome, and from what Inunderstand, the GAPS diet is a modern update of SCD (specific carbohydrate diet).

The SCD diet prohibits all preprocessed foods, and only permits consuming single molecule carbohydrates, monosacrides, such as fructose and glucose. In table sugar, fructose and glucose combine to become a whole new carbohydrate, sucrose, which is a disaccharide, and not permitted (illegal) on the SCD diet. Most fruits are permitted, along with honey as a sweetener.

In the SCD diet, you are supposed to make your own yogurt, however, with the GAPS diet, they recommend you make kefir instead, as it contains far more beneficial strains of probiotics. Kefir is a lot easier to make as well, Although it does require kefir grains.

The main difference with the paleo diet is it doesn't allow any legumes (nuts) and aside from also recommendinng drinking kefir, prohibits consuming preprocessed foods, and instead eating organic and grass fed meats.

The whole point of all of these is to "starve" the bad bacterias, while feeding and the colonizing the beneficial digestive bacterias and probiotics in your digestive system.
03-28-2013, 07:34 AM   #78
herthing1
 
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In short, the Paleo Diet is basically eating Grassfed Beef, Free Range Chicken, Lamb, Buffalo, and sugarfree, msg free, nitrate and sulfite free pork. No processed foods or sugars. No grains, no carbs. No beans. You do not necessarily have to buy grassfed, however, I noted a significant difference in how I felt between grassfed and non. I have not been able to eat regular beef in years. Had always made me sick and difficult to digest. But Grassfed Beef actually makes me feel very good. I eat some sort of protein, beef, chicken, lamb or buffalo, 3 times a day. I never in a million years thought it would actually be good for me and I would do okay on this sort of diet. But I was so sick I felt I had no other options but to give the diet a try.

I did start with the homeade free range chicken broth, eating the bone marrows, etc., for the first 3 days. I found immediate relief. I have Crohn's of the ileum and get alot of bloating and tummy pain. This diet has literally erased all of that. I did not and do not do the fermenting, as is found on the SCD diet. I can not do yogurt and I have achieved success with the Paleo Diet, so I am content with that. I get to eat things that I haven't been able to eat in years, and that makes me very happy.

I did lose a considerable amount of weight in a very short amount of time, which was alarming for me in the beginning because I am rather thin to begin with. However, my doctor said that as long as the pain is gone, my energy is good and I feel better, being skinny is not all bad. I have gotten used to it and have decided that I do not care what I look like, as long as I feel good and am taking care of my body.

I must add, however, that I do have other health issues, such as Myleoprolific Disorder and Fibromyalgia. I feel that this diet has given me a new lease on life. I am no longer having inflammation as i did and I actually feel like my future is promising. And the best part is that I am actually enjoying eating!

I would caution though, grassfed meat is expensive. However, there are ways to offset this. First, I bought a small, compact freezer for $140, at Walmart. This way I am able to stock up when the meats are on sale at my local grocier. I buy the rest of my meat at US Wellness Meats online, where I can get my sugar free, msg and nitrate free sausage and hot dogs. Their shipping is super fast and their meats are first rate! Second, I rarely eat out, so I save ALOT of money that way. Third, I have found that by not eating all of the processed junk, I actually spend less monthly on my grocery bill. I literally cook EVERYTHING from scratch. It takes a bit of planning, but once you get the hang of it, it is pretty easy.

You will most likely have to modify the diet, depending on your digestive needs. I can not do nightshades, so no tomatoes, etc. for me. I also can not do Coconut flour, or coconut milk, which is a real bummer, as homeade coconut custard ice cream is the BOMB!! But boy does it make me SICK!!! So, luckily I do well on almond milk, and do make ice cream out of that, not as good, but still yummy.

I hope this helps some of you who are considering this type of diet or are looking at options to alleviate some of your pain and other bathroom type issues.
03-28-2013, 07:34 AM   #79
Beach
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Beach,

if you are still in Chicagoland, well, there are stores all over that Sell Julian Bakery's paleo bread. There are 6 right within my immediate vicinity, but I do live in the Western suburbs. To find the closest retail store that sells it near you, just type in your zip code In this locator link:

http://www.julianbakery.com/locator/
Thanks Ya noy - unfortunately the closest Julian selling store is around an hours drive away for me. I was thinking I'll probably order some coconut bread over the net to see what I think of it. If I find the bread is to my liking, I'll look into baking something similar.
03-28-2013, 08:26 AM   #80
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I feel I need to add my experience with SCD and Paleo-not to discourage anyone but to be real and honest about my time with it. Note, I never cheated on the diet-read the book, consulted with SCD experts, told the GI I was doing the diets and he was supportive. The book (Breaking the Vicious Cycle-SCD-does mention the success rate and I believe it was in the 80s%, I believe. I wish I was in that 80 percent.

I did SCD for 1.5 years-cooked EVERYTHING I ate, even bought lots of cookware to sustain the diet (yogurt maker, pressure cooker, etc). I did Paleo after that for about 8 months-made it even more restrictive for myself by also going organic.

If you have strictures, this may not be the best diet since some veggies are high in fiber and you do not want to risk obstruction.

The meds I was on at the time of diets included: LDN, Xifaxan, Remicade. My bloodwork was never normal, blood loss constant, weekly iron infusions, and pain every day.

Remember though, that Crohn's can go into remission on its own so it will be hard to influence docs that diet alone did it. I do believe there is not one plan for everyone only guidelines we can start working with. I am also happy for those who find relief from diets. I never was that lucky.

The diets left me with lots of discipline towards how I look at food, modified ways to cook foods FAST, and some delish recipes that I came up with (including breads-blueberry, banana-my fav)-I can share these recipes upon request. It can also be very expensive and exhausting to maintain said diets but some think it's worth it...I tweaked the diets several times within guidelines to tailor to myself and just decided eventually that diet for me, was too tiring and not worth it too maintain. I still eat very healthy.

Also, once I got on prednisone after I quit all the diets, that's when my bathroom issues and vomiting decreased...

Good luck to all.
04-02-2013, 10:22 AM   #81
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I'm so glad you guys mentioned the Paleo bread and where to get it from. I put my zip code in the store locator and there are two stores near me 20-30 miles away. That's about a 30-45 minute drive for me but it will be well worth it. And one of the cities it's sold in my brother lives in so I can just have him or his wife pick some up for me and bring it when they visit! This is going to open up so many doors for me so that I can enjoy hamburgers again and hopefully I can find some SCD legal hotdogs too. Sandwiches and grilled cheeses here I come! Thanks again!!
04-02-2013, 09:25 PM   #82
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I'm so glad you guys mentioned the Paleo bread and where to get it from. I put my zip code in the store locator and there are two stores near me 20-30 miles away. That's about a 30-45 minute drive for me but it will be well worth it. And one of the cities it's sold in my brother lives in so I can just have him or his wife pick some up for me and bring it when they visit! This is going to open up so many doors for me so that I can enjoy hamburgers again and hopefully I can find some SCD legal hotdogs too. Sandwiches and grilled cheeses here I come! Thanks again!!
Give us a review when you try it It is about a 45 minute drive for me to get to it. I want to know if it is worth it
04-04-2013, 10:15 AM   #83
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I had a friend that works in the town the Paleo bread is sold in to bring some for me so I didn't have to drive at all to get it. I am a bit disappointed though. The bread is very dense, not at all light, fluffy, or flaky. It was frozen and maybe that contributed to the texture. It also had no flavor and seemed to crumble up into bits of flavorless, wet dust (is that possible lol) in my mouth. I toasted some with butter in a skillet and made an egg sandwich this morning....later I put some in a toaster and tried to eat it with jelly. Neither experience was enjoyable. The bread also had a fishy smell to it...sort of like chicken when it has spoiled. Did anyone else experience that smell? Maybe I'm doing something wrong. Maybe the bread needs to sit for a little while after it has thawed. I just can't seem to get it to be crispy like toast If anyone has any suggestions please let me know. I was so looking forward to this bread being a lifesaver for me. Maybe I'll try out the gluten free bread made by the same company if it doesn't have too many bad ingredients. Perhaps it will have a better taste and texture.
04-04-2013, 03:35 PM   #84
Beach
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I never did get around to ordering the paleo bread myself. I was reading the ingredients and saw it had eggs in it. Every once in awhile I have a notion that I can eat eggs and chicken, and each time I do a few days afterwards I end up regretting it with a belly ache. Maybe if I did the SCD or GAPs diet more strictly that problem would go away. Hard to say. I might have to try the wrist sensitivity food test some time too with eggs, as mentioned in the GAPs book to see if I have a "true allergy" as described in the book.

In the past I've tried different gluten free breads. Some where very high in fiber. That caused me a good deal of grief on its own. There are some lower fiber white rice based breads that I've tried. They tasted great and were not as problematic.

I'll eat one of the rice breads from Canada every so often, enjoy the taste, but find them so loaded with sugar that I usually end up regretting it. The stomach doesn't seem to have terrible regrets from the sweet bread, it's that i feel sluggish and worn down.
04-05-2013, 05:27 PM   #85
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I'm letting the Paleo bread thaw in the fridge for about two days then I will try it again. If I still don't like it then I will see if I can find another bread that is healthy and as close to SCD as possible. I hear sourdough bread that has been fermented is ok.
04-06-2013, 09:30 AM   #86
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I am a greater baker (if I must say so myself, lol) and I cannot seem to make a paleo bread. You move on though....you move on with life and you don't need bread anymore. I know that is difficult for the typical western dieter to understand but you really do adjust
04-08-2013, 08:23 AM   #87
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90 % SCD except for rice ;(cheating I know) but I feel gooood
I'm with you on the rice. Sometimes I feel like that's all I can eat without feeling sick.
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Crohn's DX 2012 (False UC 2011) - Symptoms since 1997
Current: 6 -MP 75 mg, Budesonide, 6 mg, Dr. Ohirra pro-B
Past: Flagyl, all Mesolamines (Asacol, Lialda etc...), Levsin, Donnatal(sneak one in here and there...)
Considering surgery
04-08-2013, 07:17 PM   #88
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90 % SCD except for rice ;(cheating I know) but I feel gooood
Joshuaaa

Do you eat potatoes also or is rice your only addition? Have you ever tried potatoes? If so, how did they work for you?
04-08-2013, 11:48 PM   #89
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I
Prefer sweet potatoes, they've been fine upon trying them, I actually tried sourdough bread today and was also fine, don't wanna make a habit of it though haha, and had spelt pasta for dinner (iv been really adventurous lately - within the last week)
04-09-2013, 09:08 AM   #90
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Prefer sweet potatoes, they've been fine upon trying them, I actually tried sourdough bread today and was also fine, don't wanna make a habit of it though haha, and had spelt pasta for dinner (iv been really adventurous lately - within the last week)
Thanks. We grow potatoes and they are just so darn cheap and easy. I can't eat any grains but I can eat potatoes. I wonder about potatoes and E.

Just be careful with your adventurousness, it could compound and cause problems and then you won't know what the problem was, but you already know that We did that with E once, tried adding in a few safe but new things. A month later when he began having some issues we had to step back and remove all three and try again.
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