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Crohn's Disease Forum » General IBD Discussion » This is how I'm going to put my Crohn's into remission


 
06-15-2012, 08:23 PM   #31
Beach
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Yeah, it can take awhile to get used to eating fewer cards and probably more so not eating grains. In particular, many people go through wheat withdrawals.

Dr. Eades had some nice articles on overcoming the run down feeling when eating fewer carbs. Basically you'll want to eat more fats. Even though it isn't paleo, I'll eat some aged cheese from time to time, and that seems to help. I'm actually nibbling on some cheddar as I write this. Coconut oil doesn't cause me problems either, and seems to give good energy. (Many have gut issues with the medium chain fats in coconut oil.)

"Tips & tricks for starting (or restarting) low-carb Pt I"

http://www.proteinpower.com/drmike/k...low-carb-pt-i/

&

"Tips & tricks for starting (or restarting) low-carb Pt II"

http://www.proteinpower.com/drmike/s...ow-carb-pt-ii/

And on wheat withdrawals:

"Wheat withdrawal: How common?"

http://blog.trackyourplaque.com/2008...ow-common.html
06-15-2012, 09:56 PM   #32
Irene3
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I think paleo is a great idea and it's worth a try but I will say we did try it for my young daughter with UC. And it was NO carbs, eggs, dairy at ALL. It was low carb veg and certain meat. At first it seemed to be a miraculous turn around but then it suddenly stopped working (before she reached remission) and it turned into a total disaster, huge flare. Good luck to you though.
This is exactly what I worry about. That without immune suppressants I'll flare. That's why I want to try to very slowly go on a good diet, and if things improve, slowly go off meds, and reintroduce foods, but at the sign of the slightest flare (if I ever go into remission on the diet), I'd be quick to ask my gi for immune sup again. Thing that worries me, is 6mp takes 6 months to work, humira 3, plus time to be approved, so if I did go off meds, the short time solution my gi and gp favor are pred. The only alternative to that, is entacort. Which is costly, but I'd much prefer it then pred. Worst case is cortisone 3_4 needles per day, then high dose pred. Which is what happens everytime I flare and go to hosp. :/
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Diagnosed crohns disease 6 yrs/candida
Temorary illeostomy, 70+cm bowel recsection, ulcerated bowel...currently stricturing.
Meds: failed Infliximab, azathiroprine
Currently on long term prednisone,6mp,humira, nizoral, and vit supplements,b12 shots.

Love the forum
06-17-2012, 10:36 PM   #33
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I think paleo is a great idea and it's worth a try but I will say we did try it for my young daughter with UC. And it was NO carbs, eggs, dairy at ALL. It was low carb veg and certain meat. At first it seemed to be a miraculous turn around but then it suddenly stopped working (before she reached remission) and it turned into a total disaster, huge flare. Good luck to you though.
Hey killcolitis,

The diet you mentioned above doesn't quite sound like a Paleo diet. Paleo isn't about low or no carbs. Matter of fact, it's recommended you DO get as many carbs as possible on the diet... just not from grains. It's essentially a no "processed food" diet. Which includes grains (wheat, rice and corn) and dairy and refined sugars.

But you are supposed to have loads of meat and vegetables and fruits. And eggs is especially one of the necessary items on the diet. They recommend a few a day!

-Adam
06-17-2012, 10:43 PM   #34
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Hey guys,

End of day 6 on the Paleo diet!

My energy level is still WAY down. I have trouble even walking around, which is awful because I'm back to work tomorrow! I weighed myself this morning and I have dropped 1 pound, down to 119. I'm still going to give the diet a fair shot though. Especially during the process where my intestines start to heal. Probably 30 days or so, at the minimum. Apparently it takes a good 2 weeks to get over the tired feeling, which is essentially my body going through withdrawals, much like a cigarette addiction or alcoholism (thanks to Beach for those links providing that information!!)Today I even went out to eat at a restaurant! Chicken and ribs with some veggies! It was delicious (except for when the veggies turned out to be string beans, which aren't Paleo legal)

...Also, the sauce on the ribs were probably not Paleo legal, but it was very very minuscule. Other than that, I've been doing really good with sticking to things. 24 days (at least) to go!

I also found a site called www.Paleohacks.com which is essentially another forum with Q&A about the Paleo diet. I asked a question about weight gain and got 2 answers within an hour, so that's good. There are some people that advocate that potatoes and/or rice could be legal on the Paleo diet and that the diet is more about minimizing processed foods than anything. If I need to gain weight, then it's OK to change things up a bit.

So if the downward trend continues, I'll start with some potatoes to hopefully reverse it.
I'll keep you posted!

-Adam
06-17-2012, 10:49 PM   #35
Jennifer
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Might want to look at this then: http://www.crohnsforum.com/showthread.php?t=37567 It's not just about fried potatoes but potatoes in general as well.

Also for ribs a dry rub would be best unless you make the sauce yourself.
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
06-17-2012, 11:54 PM   #36
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I would much prefer beef raised on the free range for two reasons. 1. Raised on grass means that the meat is more natural, not filled with growth hormone etc like you will see in factory farm raised beef. 2. The range is much more humane to the cattle.My father was raised on a cattle ranch. My Uncle continued to run that ranch when I was a kid.I spent time on that ranch and learned a few things about raising beef.Quality feed, meaning good range, raised the best quality beef.
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Started Humira June 22nd, 2011
Increased to weekly injections on November 1st, 2016
Due to the insurance company, Humira ended on January 31, 2017.
Started Entyvio February 9th, 2017
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06-18-2012, 07:17 PM   #37
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I am 51 and have had CD since I was 9. Ive felt for a very very long time that the first and foremost this disease is caused by our mental makeup and it is exacerbated by our diet. Ive never met a CD or IBD patient that did not have an underlying nervous disorder lurking. We worry, we stress and then we worry some more. Sure every human has these issues but people with CD are the ones who it effects. I don't know if its because we are genetically wired for this to happen or if there is an enzyme or dna problem going on but I have little doubt it stems from this. Secondary to the cause is our diet which has already been talked about at length...it just adds the fuel that starts this disease rolling. Autoimmune disease? Nope. The op has it right....you can go in to remission simply by changing diet....but further this disease can nearly be cured by changing how we think, how we handle stress and how we feel about ourselves in our own skin. Some have said they do it with prayer or meditation and thats great....whatever works for you. Some may need help from anti anxiety meds in combination with meditation. Some find help in forums such as this. Whatever makes you feel better about yourself or relieves stress in your life that is the route to go as well as changing that diet. The doctors that advocate crazy drugs that wipe out your immune system are uninformed imho.
06-18-2012, 07:47 PM   #38
Jennifer
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I am 51 and have had CD since I was 9. Ive felt for a very very long time that the first and foremost this disease is caused by our mental makeup and it is exacerbated by our diet. Ive never met a CD or IBD patient that did not have an underlying nervous disorder lurking. We worry, we stress and then we worry some more. Sure every human has these issues but people with CD are the ones who it effects. I don't know if its because we are genetically wired for this to happen or if there is an enzyme or dna problem going on but I have little doubt it stems from this. Secondary to the cause is our diet which has already been talked about at length...it just adds the fuel that starts this disease rolling. Autoimmune disease? Nope. The op has it right....you can go in to remission simply by changing diet....but further this disease can nearly be cured by changing how we think, how we handle stress and how we feel about ourselves in our own skin. Some have said they do it with prayer or meditation and thats great....whatever works for you. Some may need help from anti anxiety meds in combination with meditation. Some find help in forums such as this. Whatever makes you feel better about yourself or relieves stress in your life that is the route to go as well as changing that diet. The doctors that advocate crazy drugs that wipe out your immune system are uninformed imho.
I've been in remission for 13 years on 6MP an immune suppressant. Its not being uninformed, its fact. There is no cure for Crohn's.

Edit: And yes Crohn's is an autoimmune disease.

Last edited by Jennifer; 06-18-2012 at 08:05 PM.
06-18-2012, 08:11 PM   #39
David
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I am 51 and have had CD since I was 9. Ive felt for a very very long time that the first and foremost this disease is caused by our mental makeup and it is exacerbated by our diet. Ive never met a CD or IBD patient that did not have an underlying nervous disorder lurking. We worry, we stress and then we worry some more. Sure every human has these issues but people with CD are the ones who it effects.
Stress no doubt plays a role in IBD. How much, I don't know, it's probably different for everyone. Most people, IBD or not have an underlying nervous issue, it's the nature of the world we now live in. Those who then have an IBD phenotype have their disease worsened by stress.

Diet is no doubt one of the changes that people with IBD need to make. Lifestyle changes such as stress reduction and developing tools to properly deal with it are of utmost importance as well. No argument with you there.

And I do believe some people are able to control their IBD with those two facets alone, but due to the world we live in, they're in a minority. For example, you said it sometimes it comes to the point where some need anti-anxiety medications? Why is that? Why can't they just deal with their stress? Because it is really hard on a good day and impossible on a bad. And that's where this comes in:

The doctors that advocate crazy drugs that wipe out your immune system are uninformed imho.
No, they're not. Do you know why enteral nutrition which is shown to induce remission on par with prednisone isn't prescribed as a sole mode of treatment very often in adults? Non compliance. People can't stick to it.

The world we've created for ourselves makes sticking to a strict diet and living stress free EXTREMELY difficult. As such, and for other reasons, flareups happen. And the problem there is the more flareups you have and the longer you have chronic inflammation, the more scar tissue you begin to develop. And sooner or later that scar tissue narrows your intestines enough that you develop a stricture. And from there, terrible complications begin to develop. And this is of course just one example of the many ways this disease can cause terrible complications.

Whether people are unable to stick to a proper diet (if they're even able to figure out what is proper for them) and low stress lifestyle or simply choose not to, the inflammation needs to be kept in check. If it's not, sooner or later this disease will catch up to you in a very bad way. For some, that's sooner, for some, that's later.

I'm all for diet. I'm all for lifestyle changes. I'm all for alternative treatments. But we must also realize that sometimes you have to call in the big guns. And there's nothing wrong with that and people shouldn't be made to feel guilty for taking such medications when they get to that point. They should be supported. And as we're a support forum first and foremost, that's where we come in. We educate (in a supportive manner) about all the possible choices out there. We help people learn as much as they can about this disease so they can advocate for themselves. And then when they make a decision about what path for treatment they decide to take, we support them.

Welcome to the forum by the way
06-18-2012, 10:27 PM   #40
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As I said...this is just my opinion from nearly 40 years of research and study on this issue. Ive seen the doctors who claim one thing then they claim another. Ive seen their thoughts on this issue go full circle. I have yet to meet a gastro doc who has crohns who fully understands. Ive seen the drugs come and go. Ive talked to many many many people thru out the decades who have this disease. The two constants are the 2 things I have mentioned. Yes the body attacks itself but what makes the body attack itself? There is a reason. You zero in on that reason you fix this disease or control it.
06-18-2012, 10:47 PM   #41
David
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Nobody fully understands Crohn's.

I definitely understand where you're coming from but you're simplifying an extremely complicated disease. Yes, diet and lifestyle changes can absolutely help people with IBD. But you can't zero in on what makes the body attack itself (if it is indeed even attacking itself) because THAT is not a THAT. THAT is a mind exploding number of possible variables from microbial to environmental to dietary to genetic to lifestyle and everything in between. And very likely different from person to person and a combination of god knows how many variables, some possibly dynamic in nature.

For example, over 20 genes have thus far been implicated in IBD and some genes have multiple possible mutations. And then those mutations can affect a wide variety of pathways from the mucosal lining to extraintestinal manifestations to microbial sensing to lysosomal targeting to antimicrobial functions to regulation of the inflammatory response, and many more. Take 100 IBD patients and each will have a different phenotype, different symptoms, different pathogenetical processes, and respond differently to like treatments.

You can't zero in on something that is all over the map. But you can take a big step back and nuke it from orbit by trying to find the dietary changes best for you, reducing stress, exercising appropriately, utilizing alternative treatments, and a whole host of other lifestyle changes. All the while utilizing western medicine to monitor your disease state and to provide that additional treatment regimen when needed, which unfortunately, is quite often.
06-19-2012, 12:13 PM   #42
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Interesting discussion. You both have very valid points.

Vapeking, I personally agree with you that there is a specific reason the body attacks itself. As far as "curable" diseases go, there always seems to be one source. Target the source, and you remove the disease. We just haven't found the source yet, so as David says, we try to Nuke the disease from orbit.

But I have to disagree on the "doctors" topic. Yes, no one knows everything about the disease, but those medications can help some people. I had a terrible flare about 8 years ago, took 1 dose of Remicade, and I was fine for a year. No, it didn't solve the problem of the disease being present, but it certainly masked the symptoms enough that I was able to function again. If a "cure" is found, then hopefully it will be shared with everyone and we'll move forward, but in the meantime, because we have no known cure, they can only do their best, which is resolve the symptoms. As Crabby mentioned, he's been in remission for 13 years, and that's no small feat, and nothing to sneeze at. But yes, if you get a bad doctor, who tells you that diet and stress aren't a factor and that you should just take steroids...well, then you've got a bad doctor.


PS, Thanks for re-posting that link on potatoes Crabby. I think I'll continue to stay away from them.

-Adam
06-19-2012, 01:08 PM   #43
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Hey guys,

Day 8, 121 pounds.

So far, so good. My energy levels are starting to come back, which is great! I'm actually back at work (just a computer job), but am definitely spending a great deal of time in the bathroom. Im missing my terminal ileum now, so I'm getting plenty of D, gas, cramping and bloating, possibly from all the fruit/vegetable fibre or from the steady stream of antibiotics I've just been on. Now that they're done, I'm restarting my Probitics, so hopefully that will help things along.

I have an appointment with my surgeon this afternoon. He mentioned that he is interested on putting me on Cholestyramine, which would be responsible for reducing the D, but it can also cause blockages if there is an overdose, and can reduce your absorbtion of Vitamins A, D, E and K. Has anyone been on this? Have you had any success with it?

I've also made an appointment with a Naturopath (who has a dietician in house) Next Saturday (the 30th). I'll talk to her about Paleo to see if it's something she supports.

The crappy news is that I got an email from my mother begging me to stop the diet because when she saw me the other day (at 119lbs) she said I looked like I was about to die. She's pretty frantic about me gaining weight. But I'm too far in to stop now, so I had to tell my mother that I wasn't going to stop unless I continued losing weight. So that was fun. but hopefully as long as I gain weight, she'll be ok with things.

That's about it! I'm actually not having a lot of trouble sticking to things. I might still try to re-introduce rice, if I get ballsy enough. We'll see! I'll keep you posted!

-Adam
06-19-2012, 01:22 PM   #44
JMC
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Nobody fully understands Crohn's.

I definitely understand where you're coming from but you're simplifying an extremely complicated disease. Yes, diet and lifestyle changes can absolutely help people with IBD. But you can't zero in on what makes the body attack itself (if it is indeed even attacking itself) because THAT is not a THAT. THAT is a mind exploding number of possible variables from microbial to environmental to dietary to genetic to lifestyle and everything in between. And very likely different from person to person and a combination of god knows how many variables, some possibly dynamic in nature.

For example, over 20 genes have thus far been implicated in IBD and some genes have multiple possible mutations. And then those mutations can affect a wide variety of pathways from the mucosal lining to extraintestinal manifestations to microbial sensing to lysosomal targeting to antimicrobial functions to regulation of the inflammatory response, and many more. Take 100 IBD patients and each will have a different phenotype, different symptoms, different pathogenetical processes, and respond differently to like treatments.
It is a complicated disease or a lot of simpler diseases. Given the range of symptoms (stricturing, fistulating, inflamation) and locations it appears (ileum, cecum, ascending colon, sigmoid colon, etc.) it is surprising it is considered a single disease.
06-19-2012, 01:26 PM   #45
JMC
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Since having a resection and ileostomy I have become acutely aware of the importance of diet, vitamins and minerals and hydration. Whether diet can prevent Crohns is debatable, but what I am 100% sure about is that for me to feel the best I can (within the constraints of having this illness) I need to get my diet, vitamins and minerals and hydration exactly right. It can make the difference between a miserable life and a really good one, so it is worth spending time and effort on finding what works for you.
06-19-2012, 01:34 PM   #46
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Yeah, the latest Consumer Reports had an article on prevention as being the best way to get the most out of doctor visits. It went on to explain that they sent a survey to medical schools around the country, asking whether their curricula required 25+ hours of nutrition education, and only something like 25-30% actually did. (too lazy to look it up, sorry).
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06-19-2012, 01:35 PM   #47
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Since having a resection and ileostomy I have become acutely aware of the importance of diet, vitamins and minerals and hydration. Whether diet can prevent Crohns is debatable, but what I am 100% sure about is that for me to feel the best I can (within the constraints of having this illness) I need to get my diet, vitamins and minerals and hydration exactly right. It can make the difference between a miserable life and a really good one, so it is worth spending time and effort on finding what works for you.
Hey JMC,

Mind if I ask what your diet is? What vitamins you take, how much water you get per day? What foods do you try to avoid? How long have you been feeling "good" for? And are you on any medication? Thanks!

-Adam
06-19-2012, 02:14 PM   #48
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Adam, thought I'd chime in briefly regarding your terminal ileum resection, D, and potentially using cholestyramine. A bunch of people on the forum have had great luck using psyllium husks -- definitely do a search and check it out if that's something you're interested in, as it seems to act in a similar way by absorbing the bile salts that your terminal ileum used to take care of (which ends up being an irritant to your colon and causes D). Not sure if psyllium husks are "Paleo legal," but I thought I'd make a mention of it. Best of luck and keep us updated on how you're doing!
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Hi, I'm Jesse!

Current meds:
Lialda (4.8g)
fluoxetine (40mg)
naltrexone (4.5mg)

Previous meds:
Dexilant (too pricey!), Xifaxan (short course), budesonide (tapered off), Pentasa (had to switch in January 2016), omeprazole

Supplements:
multivitamin
2000IU vitamin D-3

Diagnosis:
gastritis & duodenal ulcers, August 2011
Mild Crohn's in terminal ileum, February 2012
5cm of narrowing w/ no signs of active inflammation, May 2014
06-19-2012, 03:03 PM   #49
JMC
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Hey JMC,

Mind if I ask what your diet is? What vitamins you take, how much water you get per day? What foods do you try to avoid? How long have you been feeling "good" for? And are you on any medication? Thanks!

-Adam
Vitamins: B12 and D daily, Calcium occasionally
Medication: 150mg Azathioprine

I eat a fairly standard low fibre diet. It maybe isn't that varied, luckily I like chicken and rice! I also eat at least one banana (for potassium) each day.

Breakfast: banana, rice crispies with milk, bottle of Lucozade
Morning snack: latte + pastry
Lunch: Chicken and rice (Chicken Katsu Bento, Sweet and Sour Chicken and rice)
Afternoon snack: salted crisps
Dinner: White pasta + sauce (carbonara, tomato), fish + potatoes

Drinks: 2L made up of 1L lucozade (low sugar) and 1L water. Occasionally I drink Ribena with a large pinch of salt if I am bored of Lucozade. I tend to drink one small coffee (latte) per day and several cups of tea.

Generally I avoid:
Nuts
Anything with a tough skin
Salad
Green vegetables
Red meat, with the exception of bacon (once per week), and the occasional burger (ground red meat is easier to digest)
06-21-2012, 07:49 PM   #50
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Adam, thought I'd chime in briefly regarding your terminal ileum resection, D, and potentially using cholestyramine. A bunch of people on the forum have had great luck using psyllium husks -- definitely do a search and check it out if that's something you're interested in, as it seems to act in a similar way by absorbing the bile salts that your terminal ileum used to take care of (which ends up being an irritant to your colon and causes D). Not sure if psyllium husks are "Paleo legal," but I thought I'd make a mention of it. Best of luck and keep us updated on how you're doing!

Hey JDTM! Thanks for the advice! Unfortunately Psyllium husks aren't legal on Paleo, and they can be irritating to the gut. Glad to hear that some of us are having success with it though! I've been on the Cholestramine for 2 days now and haven't noticed much of a huge change. My doc said it could take up to a week to see results though.

-Adam
06-21-2012, 07:59 PM   #51
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Day 10: 123 lbs!

I'm very happy I'm actually putting on weight. I would have had to have dropped the diet if I wasn't. Energy levels are pretty normal now, but because I'm eating so much (2380 calories minimum/day, and on a Paleo diet, that's not easy), I'm feeling pretty bloaty. Also, the more I read about the SCD diet and the Paleo diet, the more I hear about the initial first few days where you eat broth and SCD friendly yogurt (SCD Diet) or cooked veggies (Paleo diet) and how important that is to reset your bowels... Something I didn't really do. My last blood test also showed a growing number of Candida in my gut, and apparently those little buggers feast on fruit.

So I'm starting to think my gut is in a bad place right now. A 2 week dose of IV antibiotics, followed up by 1 week of oral antibiotics, plus with my candida result, I imagine my intestine is in no shape to be doing the work it's doing (hence the bloating/gas)

Does anyone have any experience with a Candida cleanse or re-populating good bacteria? I'm lazy and won't take the time to make SCD yogurt, but I have been taking the 50 billion critical care probiotic from Renew life for the last 3 days. How long doesit take to get your gut back to normal? How long does a Candida cleanse take and what does it entail? Would I starve to death, knowing what I can eat right now is limited?

PS, The diet isn't very hard at all so far. Meat and veggies and fruits and for snacks: nuts, raisins and beef jerky. Eggs and Bacon every morning. I can't complain!

Thanks for reading!

-Adam

-Adam
06-25-2012, 05:21 PM   #52
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Hey all,

Day 14 on the Paleo diet. I was a bit concerned because over the weekend, I had dropped down to 121, but my sister (who is trying to lose weight) says that fluctuations are normal when trying to lose or gain weight, and to just keep at it. Sure enough, I was back to 124 this morning!

So...pain wise, I'm doing fine. Nothing to report there. Matter of fact, the only time I *might* have a cramp is when having a BM (which have been SOLID for the 1st time in years thanks to the Cholestyramine). I can't decide whether I like that or not. I feel a little bloaty more often, but no contstant bathroom trips!!

Diet wise, I think I'm inadvertantly cheating here and there(sorry!!!). For example, I went to Nando's chicken for the last 2 nights, and got a half grilled chicken, with a salad (oil and vinegar dressing) and some coleslaw. Well the coleslaw, had a slightly creamy sauce, and when I asked about it, they said that it contains a bit of mayonnaise. Mayonnaise isn't Paleo legal, because I believe it contains corn starch, but it's in SUCH minute amounts! I'm trying to be rigorous about sticking strictly to the diet, but sometimes I just never know. It's mostly sauces I have trouble with.

Bacon is the other one. bacon is a meat, but MOST bacon contains Nitrates. I've been eating 5 slices of bacon from A&W every morning to get my calories up, and just now discovered that the nitrates that they most likely have makes it illegal on the Paleo diet. Naturally, 5 slices of bacon each morning is a big factor in assisting with weight gain. not sure what I can replace them with, or if I should even bother. Thoughts? Do you think this is killing my whole experiment?

Other than those 2 mishaps, I've been very rigorous.

Also, I've noticed that yesterday and today, both my BM's and my gas have been extra smelly. I was always that way before my operation, but I thought it was caused by the disease. Could smelly gas be caused by Candida? I'm going to talk to my naturopath about a cleanse this Saturday when Is ee her. We'll see what she recommends.

But all in all, feeling great! My scar from my surgery has healed very well and my energy level is back to normal. I'm also back on L-glutamine (for leaky gut), probiotics, and fish oil.

Talk soon!

-Adam
06-25-2012, 06:14 PM   #53
hugh
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there will be a 'die-off' after a week or two and you will feel like hell,
there will also be the addiction withdrawals after a week.

I can't say this loud enough-

CARBS (from paleo sources) ARE FINE ON PALEO,
-
Where the carbs come from is what matters.
All meat, veg, nuts , eggs, etc contain carbs ,
Paleo is called a low carb diet because there is a reduction in the amount of carbs eaten by excluding sugar and grain, but pumpkin, carrot, tubers (sweet potato, yams) etc are OK.

If you don't get enough carbs you will feel like shit.
The amount of fat (animal, olive oil, avocado,nuts) eaten increases and you derive more energy from them.

Vegetable oils MUST be avoided

It's all about repairing intestinal integrity (reducing intestinal permiability- leaky gut),
so reducing stress, avoiding antibiotics, NSAIDs, grain, legumes

A 'Paleo' diet can be unhealthy if it is unbalanced

Paleo can be specifically tailored to Autoimmune diseases.
These links discuss the Paleo for Autoimmune Diet
I've posted these before but i'll do it again.
.
http://paleodietlifestyle.com/dealin...tive-problems/
"Let me reitterate that itís really important that you stick to this stricker version of the diet 100% because only one little intruder will tend to mess everything."
http://paleodietnews.com/2494/coolin...he-paleo-diet/
http://www.eat-real-food-paleodietit...g-protocol.pdf
__________________
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Last edited by hugh; 06-25-2012 at 09:09 PM.
06-25-2012, 06:52 PM   #54
ZM1019
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I've never done Paleo since I can't eat any form of starch without feeling like I ate glass for 3-4 days. My GIs haven't ever told me not to watch my diet since it definitely is the culprit of the pain, inflammation and shut down of my colon. (As a matter of fact the first one told me no more starch ever and my newest one told me that sounds logical to me so don't eat it. Now she didn't say that's all I should do though.) I had to learn so much more about food and enzymes than I ever wanted to know. I learned a lot though. There's a difference between amylose and amylpectin forms of starch and different enzymes break them down into glucose. I have what I need for amylpectin and no Amylase to break down Amylose. Nuts are processed differently so I can tolerate most nuts but cashews and peanuts are too much. I could never figure out why I could tolerate beans better than other starches when they are full of starch. Turns out they have antiamylase and your body ferments them through the system so they are known as resistant starches. Hence, Amylase has no effect on them. Green bananas always killed me and I didn't like bananas unless they were super ripe. Turns out bananas are full of starch and turn to sugar as they ripen. I can eat them now if the skin is black and I can NEVER touch a banana from a regular grocery store. Why? Because they gas them when they are not ripe so they look ripe. This is true of all vegetables and fruits in stores so do yourself a favor and only buy from a farmer's market or vegetable stand.

Starch is in almost all curing, preservatives, thickeners, etc so I have to know the name of every form of it and read every ingredient on every label every time. Foods change their ingredients constantly and if I slack off, I'm in agony for days.

Starch is used as a binder and filler so it's in all pill and capsule forms of drugs/vitamins and most liquid forms. For me that means if it's not compounded, I'm not taking it. No exceptions. If I don't know, I refuse it. No exceptions.

Starch is also used in things like commercial yogurts, ice cream, chocolates, salad dressings, etc. When this first started, I threw out all food, meds, vitamins, dressings and seasonings. All of it. And at that time no one said you have Crohn's. I took one look at my endoscopy/colonoscopy reports and thought about how my father and niece died of stomach cancer. It all went. When I'm tempted, I take out those pictures and look at them and it turns my stomach. I can't even tell you how many times I've refused to eat because I'm not sure. I am just not doing it.

Anyway, I learned more about this stuff than I ever cared to know. Most recently I found out my body makes Amylase so it's not releasing it right which means my digestive system doesn't send the signal to say I've eaten starch. No wonder it feels like I've eaten glass for days. Without Amylase, my body cannot digest any starch with Amylose. It's that simple. I don't need a doctor to tell me that - all the research is online. For Amylase deficiency that I have every symptom but one.

No other foods bother me at all and in two years, my erosion of the esophagus and two ulcers healed. No matter what else I do, I'm going to continue to avoid the starch. It's hard and it's basically ruined my life, but I refuse to feel that kind of pain and watch my right side look like I have a tumor.

I hope this helps you. Listen to your body. If you look at what bothers you and really research the chemical composition, I have a feeling you are going to be very surprised when you find a pattern.

Give up your meds? Not sure about that, but diet certainly can't hurt.
06-25-2012, 07:38 PM   #55
Ihurt
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I was looking into doing the paleo diet for some time now. I have not yet been dx with crohns disease, I am still doing the whole song and dance with my GI doc. He says IBS. I am not so sure. I have not been through any tests yet as my GI doc says there are risks with the tests. He wants me to try a couple different meds first before we do testing. I have been suffering for the last year, more so the last four months though have been the worst.

I also have other chronic health issues so I have seen many many doctors and specialists over the last 9 years. I will say this, chronic illnesses are not very well understood, especially by western med doctors. They just do not have the knowledge at this point as these diseases are just so complex.

As far as what causes crohns or any other of these different diseases, I have to say that it could be any number of things from bacteria, to viruses, to parasites, who the heck knows. What ever the reason, it is something that ignites the immune system into going haywire. Our DNA also play a huge factor in how our bodies respond to these different afflictions.

Interestingly, when my gut issues started this last year I was already on a very bland diet sort of speak due to all my other health issues. My diet consists of the following foods; roasted chicken, salmon, or roasted turkey. Those are the meats I eat. Brown rice, quinoa, or boiled potatoes are my carbs, and for vegis I usually would eat carrots, or very soft cooked green beans. I only drink water which is 7.5 on the alkaline scale and a cup of chammomile tea every morning, sometimes with a little honey. I have been gluten free for the last five years. So as you can see, my diet has been pretty healthy for the most part , even before all my gut issues started.

I do have a theory as to why my gut is messed up though. I have IC( interstitial cystitis) which is another chronic disease of the bladder. I also get chronic UTI's. Because of this I was put on a low dose antibitoic(keflex) daily for the last 4 years. I am certain that the antibitoic is one of the reasons my gut is in the state it is now. I just do not know what to do as havine chronic severe UTI's is not good for you either. I have also read that antibitoics can cause crohns disease. This is worries me.

Anyhow, I am going to look into the paleo diet as I do believe that diet does play a huge role in our overall health all around, meaning us, people who do have chronic illnesses. Not that eating poorly will cause any person to get a disease like crohns, that is not true. My brother eats horribly and drinks lots and lots of alcohol and he is healthier than me!! So again, I think it just depneds on the person.

A question about the plaeo diet I have: I am unable to tolerate any type of vegetable unless it is cooked extremely soft. Also, I cannot tolerate eggs or beef, they upset my gut. Nuts are an absolute no for me as well. Just wondering if one starts a diet like this, should it be under the supervision of a nutritionist???
06-25-2012, 09:31 PM   #56
hugh
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A question about the plaeo diet I have: I am unable to tolerate any type of vegetable unless it is cooked extremely soft. Also, I cannot tolerate eggs or beef, they upset my gut. Nuts are an absolute no for me as well. Just wondering if one starts a diet like this, should it be under the supervision of a nutritionist???
That depends on your health,
I'd definitely find help if i was already 'at deaths door' but if your in a good place at the moment you can try it and go to your GI if you feel you need to.
This is only my opinion and you need to monitor your health

It would be good to line up a nutritionist so you don't have to look when you feel bad.

If you can find a sympathetic 'paleo - friendly' nutritionist then great, but there's no point going to a SAD (standard american diet) nutritionist.

Everybody has their own take on Paleo, generally based on either what works for them or what they want to believe.

Start with a restricted immune friendly version and add from that
I'd stop potatoes - but sweet potatoes are ok
I've found white rice to be a safe cheat FOR ME, maybe for you to, but keep it for a last resort.
Juicing (vegetables - not fruit) is a good way to get high quality nutrition.
Bananas are safe snacks
Check out the limk i posted earlier
http://www.eat-real-food-paleodietit...g-protocol.pdf

@ Acemagic - stay away from potatoes for now. rice is safe but potatoes are proven to contain high levels of glycoalkaloids - a proven cause of intestinal permeability.
Yes they are paleo 'legal' (although there is lots of debate in paleo world) but they are not a good idea for autoimmune sufferers
06-25-2012, 09:49 PM   #57
Ihurt
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Thanks for the reply. I am going to give the diet a try. I have a brand new juicer so I will also try the vegi juicing. When you do the juicing, does it cause diareha? How much would you drink in a day and which vegis are considered safe??
06-25-2012, 10:02 PM   #58
Beach
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That's wonderful about the lack of cramping, other than a bit when on the porcelain god. That's one of the first items I noticed on the paleo diet, the cramping went away. I stopped farting. Well, I rarely fart anymore, and when I do they rarely stink. I never saw that mentioned as a selling point for why to eat this way, but as an IBD'er it gets a hearty big thumbs up!

My guess about the smelly gas, it probably came from some of the fast foods eaten. Maybe the coleslaw. Hard to say.

There is bacon sold that is advertised as nitrate free. What it has though is celery juice in it, which is naturally high in nitrates. So overall if you are feeling well, and the bacon doesn't seem to be bothering the gut, I'd stick with what you are doing. Lots of paleo eaters enjoy their bacon from what I read.

With that said, of all the meats in the paleo community pork has received some concerns. One writing from the Hunter-Gather web sight on that:

"The trouble with pork"

http://hunter-gatherer.com/blog/trouble-pork

As for weight gain, I guess if there was any advice I could give it would be to concentrate on being well to the gut. Once you have the intestines in working order, the weight should come. It will take time but it will happen. That is one of the nice items often mentioned about paleo eaters, we tend to grow thin and muscular. Since I began eating this way, I've put on a little over 30lbs. I lift weights a few times a week, but have sometimes wondered if the diet isn't playing a bigger part in the gain I've experienced. Once again, hard to say.

Arthur de Vanny, is sometimes referred to as the grandfather of paleo eating. Now in his early 70s, he and his wife are looking great being thin and muscular. If I remember correctly, Arthur has written some about muscle weight gain seen with paleo eating.

http://www.arthurdevany.com/

Good luck! Hope all continues to go well.
06-26-2012, 07:51 AM   #59
hugh
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@ Beach -i love bacon but i've always been a bit suspect of the pig, thanks for those links

@Ihurt - those questions i can't answer,
I would take it easy on the juice to begin, you need to do the bland, overcooked, monotonous, safe but totally paleo thing to begin with.

It depends on your stomach (and your juicer, - some have alot of pulp (fibre) so you may want to strain it)
My favourite was carrot and beetroot with spinach/kale/cabbage.

There is a movie out there called "Fat, Sick and Nearly Dead" about a guy with a different AI (chronic Urticaria) who drank nothing but juice for 30 days (one guy went 60 days), but they both had alot of fat to live off.
But it proves that you can live on juice (and fat)

It's not a juicing diet, the juice is just a nice way of getting nutrition.

It's about strictly avoiding 'neolithic' foods, basically anything that wouldn't have been available before agriculture.

I believe it's about intestinal permeability and gut flora.

If you feel you need help there are a couple of people who offer it for a very reasonable fee (less than $40 with a one year money back guarantee i think) - i have no affiliation to them and don't subscribe to their service (but i do receive their free emails and read their blog).
-they will be more help than me so pm me if you want the name as i don't want to advertise a service i haven't used

Remember, my opinion is only my opinion, this is your journey and i wish you well.
06-26-2012, 08:03 AM   #60
kiny
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Meh, ok, this is what I think.

I don't think diet actually helps that much unless you are completely in remission and then use the diet to stay in remission. A diet will not knock you into remission if you aren't already. I think diets are overrated as a "cure", I think herbs are underrated since many are potent cytokine inhibitors and many are able to kill macrophages. But not trying to alter your diet to accommodate your disease is just as stupid, if we know milk is full of MAP, why are you still drinking milk, if you know something is hard to digest, why try it right, why not avoid it.

The discussion about suppressing the immune system when crohn is likely bacteria. On the one hand it sounds completely idiotic, and I think anyone who says it's idiotic is partly right. What it does do is lower inflammation by lowering TNF-α and it might actually in some weird way fight bacteria because the excess an inflammation in the mucosa is why the bacteria is thriving. Another thing is that E. Coli and MAP exploit TNF-Alpha and macrophages, macrophages are able to engulf MAP but MAP is multiplying inside the macrophage.

On the other hand, it's still stupid because it doesn't target the cause at all, people aren't getting better with suppressing the immune system all, they are at best in remission, and many people (University College London) have asked how wise it is to suppress the immune system when you're dealing with a bacteria, in the long run they believe it might actually worsen crohn.

Antibiotics do affect crohn, which is another reason why the autoimmune theory is complete and utter bullocks, it's a bacteria, TNF increases, you get inflammation, and some drugs suppress the inflammation but they are not going after the cause, the bacteria. And why would they, companies don't give a **** if you get cured or not, the longer they hold a cure off the more money they are making from you. That's why there is so little research interested in herbs, in diets, in antibiotics (most used for crohn are cheap as hell because anyone is allowed to make the ones for TB), because there is little money in it. You have to realise how much money the companies are making on these things that suppress the immune system, billions.

So, I don't think a diet helps that much because it's not that powerful against intracellular bacteria, but a diet combined with the right herbs that lower cytokine and kill macrophages and some probiotics might work much better. I think relying on a diet alone is not going to do much, unless you are for some reason, already in remission, and even then, some diets like the SCD diet are good on the one hand because they lower sugar, but stupid on the other because they exclude short chain fatty acids needed to repair the intestine.

Last edited by kiny; 06-26-2012 at 08:26 AM.
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