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Crohn's Disease Forum » Diet, Fitness, and Supplements » InstantCoffee Log, rather than bloat the weight gain thread.


 
09-14-2015, 11:41 AM   #61
InstantCoffee
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Not sure what's doing it but I'm definitely on a slow road to improvement.

My weight has gone from steady ~124 a month ago to a steady 132-134. My gas and pain in my chest and bowels is reduced.

I'm eating stuff that I couldn't a few months ago. I made a home made hot chocolate with powdered cocoa and sugar which used to plant me on the can in 20-40 minutes and had no ill effect.

Currently shoveling down Amy's gluten free mac and cheese with some sandwich meat or salmon here and there. I have some protein shakes I'm taking in milk with coconut oil.

I'm having the inverse issue that I'm having constipation, which is easy enough to solve with fiber supplements, however they lead to increased gas.

Current supplement blend:
-Triphala
-Molybdenum
-DIIM
-Phospotidyl Choline
-R-lipoic acid
-L-cysteine

I've taken s. bouliardi sporadically.

I can't say for sure if it's any of these, or a slow build up of all the stuff I've tried over the past months combined with including more fibers in my diet. Maybe all of them.

I'm going to continue to be cautiously optimistic and minimize sugar intake.

I've also cut multivitamins from 4x daily to 0. I've heard B vitamins can be linked to acne outbreaks, and I'm trying to get mine under control. It's been really terrible the past few months. I've combined it with using no soap as they seem to not help or make it worse. My skin is finally clearing up, and the abscess on my face isn't filling anymore.

Unfortunately I'm still not completely free of uncomfortable gas pressure. I'm still experiencing joint pain. In the past I've attributed this to lack of musculature but now I'm not sure.

My mental fatigue and lack of focus is reduced, but not completely to where it used to be.

I've also kicked coffee, I have it on occasion but my addiction is gone. I don't attribute coffee to my Crohn's symptoms but I think it was effecting my mental state. I largely attribute the death of my creativity to a stimulant addiction.

Overall though I think I've created a targeted change of my gut bacteria from those of a diarrheal crohn's to constipated, which to me is preferrable and easier to manage. The slow, steady introduction of prebiotic fiber mixed with foods targeted at supporting specific growth and starvation like safflower oil likely helped.
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Dx 05
Past drugs: Remicade, Azathioprine, Prednizone, antacids, Humira
Current therapy: Diet and supplements.
I'm my own guinea pig.
My log with studies, journal of my experiments:
http://www.crohnsforum.com/showthread.php?t=72046
My Blog
https://beyondtheoddsfitness.wordpress.com/
10-22-2015, 09:52 AM   #62
InstantCoffee
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https://www.youtube.com/watch?v=Np0jGp6442A
Really interesting stuff. I wonder if this could help me with my problems getting sick after short amounts of cold exposure, or maybe more.

His breathing techniques have been scientifically proven to alter the pH levels and the catecholamine / neurotransmitter levels in the body.
01-13-2016, 10:19 AM   #63
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I wanted to post an update, I've been away for a while figuring myself out, but I've been doing really well the past year, I'm up to 140+ lb.s and back in the gym regularly.

I've tried a lot of new a different things over the past few years but here's what I believe to be the method that best led me to recovery. Much of it has already been discussed in my log but I haven't really given a concise summary of my application of the most promising and effective techniques and supplements.

Supplments you'll need:
-Vitamin D, 2,000 - 5,000 IUs (always, can substitue with buying a sun lamp)
-Fiber supplement (always)
-Psyllium Husk or Seed powder (For first month or so)
-ZMA (For first month especially if you have diarrhea, see doctor for testing before continuation)
-R or A-Lipoic Acid (optional, especially indicated if you have lethargy and brain fog)
-L-Lysine (Optional, especially indicated if you have arthritis, cold sores, or skin manifestation)
-Andrographis Paniculata and Syberian Ginseng (Optional, especially recommended if you are not on medication for crohn's)
- Milk thistle or a similar liver detox supplement (optional but highly recommended)
-Digestive Enzymes (optional but highly recommended) Suggest NOW Super Enzymes

First was to control inflammation, I started intermittent fasting. That is, eating only within an 8 hour window each day. Basically your window opens at 1pm and closes at 9pm when you go to bed. If you go to bed earlier or later adjust accordingly.

It's likely you'll have to cut your calorie total but try to achieve 1500-2000 if you can. If you're someone who has trouble losing weight IF is a proven effective way for many people to control their appetite and food intake. If you have trouble gaining weight the benefits to your recovery should help you once you make it through this phase.

There's evidence that fasting escalates natural cortisol levels in the body, reducing inflammation, balancing your neurotransmitter levels (which provides a mental health benefit, feels of wellness and contentment) and allowing your bowels time to rest and heal.

Some people may experience gastric upset during a fast. If you do I suggest trying one of the following:
A) Add a pinch of baking soda to a liter of water and sip it through the day. This should help with reflux. If it does not, move on to B.
B) Add a capful of apple cider vinegar to a liter of water (no baking soda) and sip through the day. Sometimes it's an overproduction of acid due to low acid in the stomach and by adding acid to it you can reduce this effect. Black coffee can work too if you can tolerate it.
C) Get a digestion-resistant fiber supplement (You'll need this later anyway!) that's 10 calories or less per serving, Psyllium works too, and take this in the morning.

You'll want to continue to use IF until signs of inflammation are reduced, and you can continue as long as you want as it is both safe and healthy to do so.

During this time you'll want to eat a very minimalistic diet of bare bones healthy foods. Ideally I would advise white meat, fish or soy for protein, a rice grain you can tolerate (try sushi rice, basmati rice, if you can tolerate it brown rice is ideal but may be too high fiber for most with severe inflammation). If you can tolerate eggs they're also a good choice.

Avoid dairy if necessary, keep seasonings to a minimum, I suggest starting with NO seasonings and adding them back slowly as they may trigger symptoms even ones you think to be safe or healthy like black pepper or garlic.

I want you to find yourself a soluble fiber supplement. Suggestion brands:
-fiber smart
-ON fitness fiber

Also get a psyllium husk or psyllium seed powder supplement.

You need to slowly introduce this into your diet, starting with 1 scoop/ serving a day and upping it as tolerated to 3-5.

Along with this I want you to get L-Glutamine. You can get capsules, but I prefer powder, buy yourself a bottle of pomegranate juice and as soon as you break your fast take 1 to 5 grams of L-Glutamine with pom juice on an empty stomach, and again before you go to bed for the night. L-Glutamine helps speed the healing process in the gut, POM juice is an anti-oxidant which have proposed benefits to Crohn's and potassium which you likely need.

I used to also take Aloe Vera juice when breaking my fast, but it's lacking in verifiable evidence so will leave it as optional.

Along with this I want you to immediately take your first dose of fiber supplement. This will begin to refeed your natural gut bacteria which has been starving during the day, so they can start to overtake the invasive / pathogenic bacteria likely making you sick.

Now, many of you likely experience diarrhea. As a Crohn's patient it's likely you are zinc deficient, and if you have diarrhea it's almost guaranteed and you're likely extremely deficient. Zinc is important to functions throughout your body, but deficiency in it is cyclical and caused by, and leads to, diarrhea. It's especially important for immune support and hormonal function.

Magnesium is also important to immune function, and vitamin B6 is responsible for many of the hormones in your body that likely don't function well as a result of Crohn's.

ZMA supplements are a quick way to get all 3, but if you'd prefer, simply taking Zinc Picolinate alone can help.

Start off with 30 mg and slowly increase to 100 a day. Pay attention to side effects like gastric upset, fatigue, irritability and increased acne and dial back / stop increasing the dose if they present, this means you're using too much. Pay attention to the type of zinc you buy, and if you get gastric upset try taking it with something acidic, your body needs acid to digest zinc.

Now there's a lot of unknowns involving viruses and Crohn's, but having a compromised immune system can make you weak to them. If you have symptoms of virus such as cold sores, sore joints, skin lesions I suggest trying L-Lysine.
Start off with 500 mg and slowly increase to 6 grams a day. Continue on this for a month to see if these symptoms improve.

Lipoic Acid: While little is known about the exact function of Lipoic Acid, it's marketed as an anti-oxidant which isn't strictly correct. It's helpful in converting food to energy, similar to B12. If you experience lethargy and brain fog I find lipoic acid can help to counteract those symptoms.

Start off with 100mg a day and gradually increase to 300, but do so by taking pills that have 100mg or less, and take one every 1.5-2 hours. If you can get them in 50 mg to start, even better.

After a month on Zinc it's very important you see a doctor and have your zinc-copper levels evaluated to ensure that zinc is going up, and copper is not depleted as a result. Zinc impedes the absorption of copper, but many are high in copper as is, which is not good for us. If you're low zinc then you're still excreting too much and not taking in enough. Some clinical trials put Crohn's patients on extreme doses as high as 300mg a day to see results, but I wouldn't exceed 100mg without blood tests.

For andrographis take 800 mg a day and ~1000mg of siberian ginseng with it. Andrographic paniculata is an ayurveydic bitter that compares to mesalazine for treatment of UC.

After about 1+ months on the IF diet I want you to start branching out and introducing natural, whole-food fibers into your diet. Start with plantains, green bananas, and sweet potatoes for healthy sources of resistant starches to feed your gut bacteria. At first you may experience gas, but it should pass with time as long as you're not experience extreme side effects. If you do, dial back the amount, then increase slowly.

Buy a bundle of green baby bananas, start with one, then increase over time.

As far as supplement timing:
-Zinc should be taken with something acidic, not on an empty stomach
-Psyllium should be taken 3-4 hours before or after any other medications / supplements. Calories are negligible so you can take it during a fast.
-Lysine timing is not important
-Lipoic acid would likely be ideal during your fast.
-Digestive Enzymes before and after your meals
-Andrographis doesn't appear to be important

Things to avoid that can trigger relapses / symptoms:
-Zero calorie sweeteners, especially sucralose but including sortbitol, xylitol, mannitol and other sugar alcohols. Stevia may be okay
-maltodextrin
-I highly suggest going gluten free
-reduce / limit red meat as this can be stressful to digest, especially processed red meats like bacon and prosciutto
-Eliminate simple sugars like high fructose corn syrup, dextrose, sucrose, this includes 'heathly/natural' sugars like honey and molasses
-Keep tuna and fish known for being mercury-heavy to a minimum. The heavy metal load on your body is not good. Eat healthier fish like Salmon.

Once you can safely tolerate larger amounts of fiber you can slowly re-introduce sugars as long as you keep your fiber intake up and take your fiber alongside your sugar to buffer its absorption / digestion.

If you do have dairy get whole milks and hard cheeses. Low-fat milks have higher carbs / more lactose.

Sugar from raw fruits is okay, but no packaged / canned fruits in syrup etc. Limit high sugar fruits like oranges and apples to a minimum, strawberries and bananas are okay.

You may also want to look into an Amino Acid supplement like this
http://www.iherb.com/Solgar-Essentia...FcZbfgod1OEAuA
01-15-2016, 09:03 AM   #64
InstantCoffee
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Here's a look at my current daily weight-gain diet.



Combined with weighlifting I'm gaining about 1lb / week.

It's really high in unhealthy sugars, I know. I need to move some of those carbs to fiber-rich carbs like oats and plantains but time is an issue.
03-21-2016, 12:10 PM   #65
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Just wanted to update.

I fell into a flare for about the past 2 weeks and think I successfully ended it this weekend.

I'm not 100% sure what caused it but risk factors included:
-I had taken ibuprofen regularly 3 times a day for almost a month prior due to a tooth ache
-Increased intake of oats, which never caused me obvious symptoms but there's evidence to suggest they aren't always compatible with gluten intolerance due to their similar proteins
-Taking large doses of DHEA for 1 week prior. Time lines seems too short and I've taken it safely in the past but I can't discount this possibility.
-Large amounts of raw table sugar in my diet
-Experimenting with sweet potato.

I saw a gradual decline in my appetite and ability to maintain my workout regimen for a few weeks, however and loss of energy, general malaise and chronic fatigue that predated trying sweet potatoes or DHEA.

The first few days I really erupted in 'flare' felt like I ate a trigger food (gluten or similar) but those normally pass in 24-48 hours, the flare continued for over 2 weeks, independent of what I ate.

I started taking psyllium again which gave some relief but not really preventing diarrhea or bloating. I also started having some natural sauerkraut which seemed to provide some relief but didn't prevent return of symptoms either.

This weekend I started a shotgun-approach treatment.

1 tbsp psyllium husks twice a day, in the morning and before bed, with 3 drops of oregano oil and 1000 mg tyrosine 100 mg 5-htp in the morning, 1000mg tyrosine 150 mg 5-htp at night.

I took s. boulardii, Align (which contains b. infantis) and a wholefoods probioitic with large amounts of butyric acid and glutamine and some biotin which I've read can help with intestinal permeability.

Then took high doses of my ZMA (3 pills, 150mg zinc a day, 75mg b6, can't recall how much magnesium).


I felt slightly feverish Sunday night but the diarrhea has stopped and now I just have some gas, minimal bloating and no pain or discomfort.

My diet during this time was tilapia, fair life milk, ice cream, strawberries (for vitamin C) and oats. I avoided whey protein.

We'll see how things go over the next few days, I'm going to continue to take the psyllium and oregano oil with probiotics.
03-25-2016, 05:55 AM   #66
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Just wanted to wish you luck Ben! Thanks for what you are doing. Hope you continue to do well with the stomach and with gaining weight. I've been reading your updates here in the thread, and looked over your blog. I don't come around often any longer but can remember a few years ago you talking about trying a ketogenic diet. I was amazed! The Keto diet was obscure at the time, little known, so it was interesting to see someone giving it a go.
03-28-2016, 03:53 AM   #67
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Hope you get back on track soon!
I'm wondering if you can determine what eventually does the trick when you start several changes at a time?
I tried oregano oil in olive oil quite a while ago, first I thought it would help me, then I felt burning pain in my tummy, it took a few weeks until I felt better again, so maybe you might want to bear that in mind when you have similar symptoms.
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Crohn's Disease: diagnosed 2014 (at 24), symptoms for 10 years now
Enteropathic Arthritis, Sacroliitis, Osteopenia

Stelara; Uceris; Lansoprazole; Domperidone.

Previously: Remicade, Humira, Simponi, Azathioprine, Methotrexate, Sulfasalazine, Entocort, Uceris, Prednisolone, TPN, EEN, different alternative treatments.
05-06-2016, 10:03 AM   #68
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This is great! How are you doing now? Do you feel the MAP research that you have read has aided you in this process overall? Have you ever been tested for MAP?
05-06-2016, 11:53 AM   #69
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Just wanted to wish you luck Ben! Thanks for what you are doing. Hope you continue to do well with the stomach and with gaining weight. I've been reading your updates here in the thread, and looked over your blog. I don't come around often any longer but can remember a few years ago you talking about trying a ketogenic diet. I was amazed! The Keto diet was obscure at the time, little known, so it was interesting to see someone giving it a go.
Thanks, I'm not on Keto anymore as I couldn't digest enough of the foods necessary to make it both effective and healthy, however I do believe it could be a good starting point for someone whos Crohn's responds heavily to diet - so long as they can get enough fiber. But with supplements like psyllium and smart fiber that are low calorie fiber options I believe this is possible.

I just don't think it's necessary or necessarily the best for someone who already has trouble gaining weight because it's more of a weight loss diet. If it helps you control symptoms though it could promote weight gain, regardless, if you're malnourished enough.

Hope you get back on track soon!
I'm wondering if you can determine what eventually does the trick when you start several changes at a time?
I tried oregano oil in olive oil quite a while ago, first I thought it would help me, then I felt burning pain in my tummy, it took a few weeks until I felt better again, so maybe you might want to bear that in mind when you have similar symptoms.
I'm more concerned with getting results, then determining the origin of them after, and it's much easier to determine causation from a more remissive state.

If I'm feeling well and change something and have a reaction then the time period before I return to normal is usually less than 48 hours. If, however, I've allowed something to go on for 3-4 weeks then my system is messy enough that I could take days to fully recover from it, so the nuances in my reaction to things is much less defined and it's much harder to test each one.

It took me a while to figure out that since my last post I'd developed an aversion to oats, because I'd been eating them so long and the symptoms came on gradually, then once I was ill enough simply avoiding oats for a day didn't cause me to be 100% symptom free, but it did reduce the severity of my symptoms enough that I was able to determine causation, only after I had eliminated all the other possibilities.

I have taken oregano oil frequently without adverse reaction (except the time I took it in a suspension of olive oil which I do react to). I have a pure oregano oil dropper that I use. I'm not convinced of its efficacy for any of my problems though.

This is great! How are you doing now? Do you feel the MAP research that you have read has aided you in this process overall? Have you ever been tested for MAP?
Well I've been torn between MAP and the connection to neurotransmitters for a while. How can Crohn's respond to both treatments? Is it two different conditions, or are they related? If so, which one is causing which? Does the improper transport of amino acids cause a vulnerability to bacterial infection? Does the bacteria block absorption of amino acids in the gut?

I think just recently I found some evidence that could put 2 and 2 together, since I've also seen evidence that suggests MAP is not the cause - yet we still know antibiotic therapy works.

Well I read some info that suggested the Crohn's symptoms could be caused by excess serotonin in the gut. The genetic link in Crohn's is in the OCT transport proteins that are responsible for transport of amino acids from the intestines, if they don't work, too much stores in the intestines and you have serotonin toxicity. I have to look back into it, but if I recall correctly gut serotonin is produced by the body, but also by the digestion of amino acids by bacteria in the gut. Antibiotics kill both natural and invasive gut bacteria. If you took antibiotics, whether it's AMAT therapy, flagyl (which in the past helped my crohn's,) or oregano oil and it suppressed your serotonin-producing gut bacteria that would reduce the load of serotonin on your gut.

So that just leaves me what the question of, what can I do about it?

Anyway, if I had to sum up anything in this thread is:
-Know everything you put in your body
-avoid sucralose
-fiber, fiber, fiber. Find a source your can digest and learn to love it
-L-glutamine is the only OTC supplement I can fully endorse for crohn's-specific application. Others like vitamin D may be good but that's really something EVERYONE, not just crohnies need to know about.
-when in doubt get blood tests. Vitamin deficiencies, hormones, amino acids, whatever. I wish I could afford to do more of them, it would help me get on the right track.
05-08-2016, 07:25 AM   #70
Beach
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Glad you are feeling better, and working through things. That makes sense with the keto diet. I agree. If the diet works for your system then it might help promote healing and weight gain. And if the diet isn't helping, its pretty quick to tell I suspect, it is probably best to stop trying it.

That was my experience with diet ideas. I never went fully into the Ketogenic diet, but did removed grains from my diet and ate larger amounts of fat. The result for me was weight gain, and a better performing gut. Now I just need to workout the low energy fatigue problem. I seem to be making progress in that area of late.
05-10-2016, 09:18 AM   #71
InstantCoffee
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Glad you are feeling better, and working through things. That makes sense with the keto diet. I agree. If the diet works for your system then it might help promote healing and weight gain. And if the diet isn't helping, its pretty quick to tell I suspect, it is probably best to stop trying it.

That was my experience with diet ideas. I never went fully into the Ketogenic diet, but did removed grains from my diet and ate larger amounts of fat. The result for me was weight gain, and a better performing gut. Now I just need to workout the low energy fatigue problem. I seem to be making progress in that area of late.
You'll find it difficult to get energy levels if you're low carb but not keto. Do you know what % roughly of your diet is carbs, or how many grams you're consuming a day?

What is your total calorie intake on average for a day?

Until you know both these it's hard to look at outside factors, like lingering dietary triggers that are causing low-grade inflammation.

I've been dialing back on fat because it can be highly inflammatory, especially vegetable oils, and trying to find healthy carbs to eat since they're the healthiest, easiest to use energy sources. The problem seems for many that they also trigger crohn's symptoms.

I can easily absorb the carbs from sugar without incident as long as my fiber intake is good, but they cause other long-term health problems as well as a lot of skin problems short term. I can fall back on the ice cream diet when I have to, but it's not a good long-term solution.
05-10-2016, 02:23 PM   #72
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I'm envious that ice cream can be a fall back safe diet. My super safe diet for my type of colitis involves plain rice. Bland, not much fun but it takes care of an overly inflamed gut, at least for me. I'm not sure of how many calories I eat. Never really have sat down and worked on that. I've found for me improved energy levels and weight gain come when the gut has been well for awhile - typically.

I'm in a good spot at the moment and my energy levels are creeping up I feel. I noticed too that after kicking olive oil and olives out of the diet for some reason I've gained around 5lbs. It probably is a coincidence that happened, but as usual with this disease my weight can mysterious go up and down without much known cause.
05-11-2016, 05:16 AM   #73
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I'm envious that ice cream can be a fall back safe diet. My super safe diet for my type of colitis involves plain rice. Bland, not much fun but it takes care of an overly inflamed gut, at least for me. I'm not sure of how many calories I eat. Never really have sat down and worked on that. I've found for me improved energy levels and weight gain come when the gut has been well for awhile - typically.

I'm in a good spot at the moment and my energy levels are creeping up I feel. I noticed too that after kicking olive oil and olives out of the diet for some reason I've gained around 5lbs. It probably is a coincidence that happened, but as usual with this disease my weight can mysterious go up and down without much known cause.
I actually couldn't for the past 2 years, I had to go through a long term adjustment of my diet to fix my gut flora before I could tolerate even small amounts of chocolate and sugar.

It used to send me straight to the bathroom within ~30 minutes of eating it with green runs. Not fun.

Earlier in the thread I discuss targeting the species of bacteria in the gut with diet. I ate a lot of prebiotic fibers from psyllium, green bananas, plantains, and also safflower oil to shift the balance from bacteroidetes to firmicutes and within a 3-4 months I could literally binge eat sugar.

Most dramatic difference I've seen and I think a credit to the diet & bacteria theories.
05-11-2016, 06:44 AM   #74
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That is wonderful that you have found addressing gut bacteria has helped your situation. I remember reading your write ups in the past but have to admit I don't remember everything. You have been through a lot. It must feel good to be making some progress.

I know for me the first idea I tried after developing my colitis was yogurt with live cultures and gut bacteria idea. I went that route for a few years. It didn't improve my situation. i wish it had but never did see improvements. I might have done the gut bacteria wrong or maybe didn't go long enough. There are always opinions on that. And along those lines my father has a retired doctor friend that recently showed me an article on eating the right kind of worms/ bacteria to solve my condition. I believe the article was in the Atlantic. I didn't know what to make of it, other that it appears to be another idea I could try in the future if the current ideas I'm working on don't pan out as hoped.

Going off topic, but thought this doctors research interesting. He has largely been forgotten today. In the 1940s in N. Carolina there was a German refuge doctor, Dr. Walter Kempner, that devised a diet to "cure" or maybe better said put into remission type 2 diabetes. The diet Dr. Kempner of Duke university created went in phases. The first phase of the diet goes entirely against common wisdom concerning type 2 diabetes. The 1st phase was to eat meals of rice, lots of table sugar, and fruit. That was it. hard to believe but around 60% of patients saw improvements with type 2 symptoms and experienced big weight loss. Dr. Kempner became famous in his day. Many well known wealthy people would come to his clinic for treatment at Duke University. Many wanted him to open rice houses across the nation. One of better known fans was the owner of Dunkin Donuts. I guess the idea was you could have your donuts in one shop, cross the street and detox at the rice diabetes house.

In light of some recent studies concerning type 2 diabetes finding that medications to control sugar levels do not prevent type 2 complications such as blindness, nerve damage, poor circulation leading to amputation, it isn't all that surprising to me that Dr. Kempner's diet would help some diabetes type 2 patients. I think most get caught up in the idea of controlling blood sugar levels with type 2 diabetes. It is easy to forget that the disease has many complications to it.

Anyway, when I read about Dr. Kempner's work, and my success with eating rice in the past it had me wondering if the rice sugar diet could help those with IBD conditions. It sounds like maybe not in some cases. Some of Dr. Kempner's work can be read about here:

https://rawfoodsos.com/2015/10/06/in...hought-part-1/

If you had not seen it, there was an article recently in the Guardian about blood sugar, gut bacteria, and eating ice cream that I found interesting also. Thought you might enjoy some of the research being done with it.

"How dieting will get personal – and much more effective
Project analysing people’s gut bacteria and determining which foods cause a spike in their blood sugar levels is paving the way for tailor-made diets"

http://www.theguardian.com/society/2...ood-sugar-diet
05-13-2016, 03:12 PM   #75
InstantCoffee
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That is wonderful that you have found addressing gut bacteria has helped your situation. I remember reading your write ups in the past but have to admit I don't remember everything. You have been through a lot. It must feel good to be making some progress.

I know for me the first idea I tried after developing my colitis was yogurt with live cultures and gut bacteria idea. I went that route for a few years. It didn't improve my situation. i wish it had but never did see improvements. I might have done the gut bacteria wrong or maybe didn't go long enough. There are always opinions on that. And along those lines my father has a retired doctor friend that recently showed me an article on eating the right kind of worms/ bacteria to solve my condition. I believe the article was in the Atlantic. I didn't know what to make of it, other that it appears to be another idea I could try in the future if the current ideas I'm working on don't pan out as hoped.

Going off topic, but thought this doctors research interesting. He has largely been forgotten today. In the 1940s in N. Carolina there was a German refuge doctor, Dr. Walter Kempner, that devised a diet to "cure" or maybe better said put into remission type 2 diabetes. The diet Dr. Kempner of Duke university created went in phases. The first phase of the diet goes entirely against common wisdom concerning type 2 diabetes. The 1st phase was to eat meals of rice, lots of table sugar, and fruit. That was it. hard to believe but around 60% of patients saw improvements with type 2 symptoms and experienced big weight loss. Dr. Kempner became famous in his day. Many well known wealthy people would come to his clinic for treatment at Duke University. Many wanted him to open rice houses across the nation. One of better known fans was the owner of Dunkin Donuts. I guess the idea was you could have your donuts in one shop, cross the street and detox at the rice diabetes house.

In light of some recent studies concerning type 2 diabetes finding that medications to control sugar levels do not prevent type 2 complications such as blindness, nerve damage, poor circulation leading to amputation, it isn't all that surprising to me that Dr. Kempner's diet would help some diabetes type 2 patients. I think most get caught up in the idea of controlling blood sugar levels with type 2 diabetes. It is easy to forget that the disease has many complications to it.

Anyway, when I read about Dr. Kempner's work, and my success with eating rice in the past it had me wondering if the rice sugar diet could help those with IBD conditions. It sounds like maybe not in some cases. Some of Dr. Kempner's work can be read about here:

https://rawfoodsos.com/2015/10/06/in...hought-part-1/

If you had not seen it, there was an article recently in the Guardian about blood sugar, gut bacteria, and eating ice cream that I found interesting also. Thought you might enjoy some of the research being done with it.

"How dieting will get personal – and much more effective
Project analysing people’s gut bacteria and determining which foods cause a spike in their blood sugar levels is paving the way for tailor-made diets"

http://www.theguardian.com/society/2...ood-sugar-diet
These are really interesting, I haven't finished reading the first one as it's very long but I wanted to respond, I'll follow up when I have time to finish.

It's really crazy how we still understand so little about how diet effects the intricacies of our health and well being, and also how we see people with such dogmatic views on opposing diets that both can prove effective.

I've been hearing some stuff from Vegans saying that meat is more insulinogenic than sugar and I've been meaning to look into this.

I've also noticed that I seemed to do well on high fat or high carb diets but not as well when they mixed, it's crossed my mind a few times but never made any sense so I discarded it. I used to be very meatatrian and lived on mostly meat and milk.

After my last stint with fiber and recovering my ability to digest sugar I had a sugar heavy diet, 250g or so a day and I felt great except the terrible acne it gave me. As I started shifting out the sugar into complex carbs and fat I started feeling worse. I actually lost the ability to digest oats which had been a friend for a while which was interesting considering I was in a pretty remissive state otherwise.

Maybe it is how they say, there's a ketogenic state in the body and an opposing one at low fat under 10% and in between our body just doesn't handle the mix.

As far as probiotic foods go, I really don't believe they're a good choice, and I strongly believe fiber is a better basis for correcting the bacterial loads of the gut, though a combined approach may be best. Foreign bacteria can never take root and populate our gut the same way our natural flora can (except obviously some exceptions like invasive / pathogenic ones). This means you need a continual stream of high loads of probiotics to take effect, and most grocery store brands of fermented foods are just so low in the number of bacteria and diversity.

Home made ones like sauerkraut have a higher number but very low diversity and are primarily lactobacillus and studies suggest diversity is king.

From what I can tell, eating a diverse array of fibers and raw fruits and vegetables is the most effective way to repopulate our commensal gut flora, but can be hard on those with IBD, they need to start slow and careful.

When I started, eating a cup of fruit would send me to the bathroom. Now I'm eating roast edamame and chickpeas by the handful.


I really want to switch onto a mostly vegetarian diet but without spices and seasonings that I'm generally sensitive too I don't know if I could eat enough to sustain myself, I'd just lose taste for it so quickly.
05-13-2016, 05:07 PM   #76
Beach
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Agree, that is a relaly long article.

It really is interesting when looking into health ideas and trying to interpret them. Here is something that you might have not have heard of. There are a few type 2 diabetes studies that have found type 2 diabetes medications do not prevent type 2 diabetes complications. (This might explain why Dr. Kempner's type 2 diabetes high sugar diet helped improve the health of many of his patients.) As a result of the studies some doctors have begun to change how they treat their type 2 diabetes patients. Most physicians and patients have not made changes though.

One would want to take the medications to avoid diabetes complications. That would be the most important part but often overlooked.

One write up on the diabetes studies can be seen below. The doctor has a theory that the wrong hormone is being manipulated. Instead of high blood sugar being the health problem it might be low blood sugar and the hormone glucagon that is causing health issues such as blindness, nerve damage, etc.

Then again something else entirely different might be going on.

"Turning diabetes upside down"

https://drmalcolmkendrick.org/2015/0...s-upside-down/

From his article:

...If the blood sugar rises, whatever the underlying cause, we call it diabetes and drive it down…sigh. The more it rises the harder you drive it down….Sigh. The lower you get the blood sugar down the better…sigh. How do you do this? Mainly by giving drugs that force beta-cells to produce more insulin, or by adding in drugs that work with insulin to lower blood sugar levels, or by injecting additional insulin.

How well does this work? Some of you will have heard of the ACCORD study, others will not. In this study researchers, tried to force blood sugar levels down as far as possible using intensive treatment. They found the following:

‘Until last week, researchers, doctors and every medical professional has believed for decades that if people with diabetes lowered their blood sugars to normal levels, they could not only prevent the complications from diabetes, but also reduce the risk of dying from heart disease. But the Accord Study, (for Action to Control Cardiovascular Risk in Diabetes), a major NIH study of more than 10,000 older and middle-aged people with type 2 diabetes has found that lowering blood sugar actually increased their risk of death.2’

There is one other way of lowering blood glucose, by using insulin ‘sensitising’ drugs. In diabetes most doctors look at metformin as the wonder drug. This drug improves ‘insulin sensitivity’ i.e. it helps to reduce insulin resistance. It is the absolute mainstay of type 2 diabetes treatment. Once again, however, it is targeted at purely the insulin/glucose model:

‘Metformin has been the mainstay of treatment for type 2 diabetes since 1998 when the UK Prospective Diabetes Study showed reduced mortality with metformin use compared with diet alone. Recently a French meta-analysis of 13 random controlled trials questioned the central role of metformin in the care of patients with diabetes. In this meta-analysis, in which 9560 patients were given metformin and 3550 were given conventional treatment or placebo, metformin did not significantly affect the primary outcomes of all cause mortality or cardiovascular mortality. The secondary outcomes—myocardial infarction, stroke, heart failure, peripheral vascular disease, leg amputation, and microvascular complications—were also unaffected by treatment with metformin.’3

Today we have a virtually unquestioned model of diabetes that is very simple, and easy to understand. It should be simple to understand as it works like this. If the blood sugar goes up, the body produces insulin to lower it. If the blood sugar goes down, the body produces less insulin and the sugar level goes up.

This has meant that, if you find someone had high blood sugar levels, you basically hit them with insulin. I call insulin the ‘glucose hammer’ and, as a wise man once said. ‘If the only tool you have is a hammer, pretty soon everything starts to look like a nail’.

Reducing glucagon…. anybody?
I've noticed that when my gut is healed up well enough, and I can eat fiber, such as blueberries, I began to feel as if I'm recovering. I've suspected that the fiber might be helping with repopulating gut bacteria. Hard to say of course. I've run across a few theories on how different types of fiber improves health. What ever it is, I seem to do best when I'm able to eat fruit and vegetable fibers.
05-14-2016, 11:49 PM   #77
theseawillrise
 
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Do you have an update to the post you made in 2013 titled "Thought I'd share this dietary regiment"

You reference a story from someone who mentions that he had positive results by "taking undecenoic acid 5 pills 3x a day for about 3 months" as well as "mega dose vitamin c and echinacea".

Have you been in touch with the person from the story? How is he doing?

The thread was "showthread.php?t=56227"
05-18-2016, 01:13 PM   #78
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Do you have an update to the post you made in 2013 titled "Thought I'd share this dietary regiment"

You reference a story from someone who mentions that he had positive results by "taking undecenoic acid 5 pills 3x a day for about 3 months" as well as "mega dose vitamin c and echinacea".

Have you been in touch with the person from the story? How is he doing?

The thread was "showthread.php?t=56227"
The theory was based on the idea that Crohn's is caused by candida infection which is pretty much debunked at this point.

It may make you susceptible to it, and have a candida infection may promote crohn's-like symptoms but the idea that it's the root cause of Crohn's can pretty well be ignored.

The only thing to take away from that dietary regimen is the benefits of a less insulinogenic diet for Crohn's. I'm not really sure how it works aside from the factors of simple sugars feeding bad bacteria in the gut and being unhealthy in general, but reducing the amount of simple carbohydrates in the diet does seem to be a pretty consistent benefit.

I didn't keep in touch with them since the forum I was on got shut down.

The diet cured my abscesses that I mentioned though. I haven't had another once since. I've had strange skin lesions on my face that may or may not have been related, they seemed to go away when supplementing large doses of zinc and magnesium.

They did not respond to antibiotics, they were still there 2 weeks out from a heavy dose of antibiotics, the doctors said there's not really a 'delayed response' to antibiotic therapy, if they didn't work then they wouldn't spontaneously work 2 weeks out.

I cut sugar and boom, they went away.

I haven't seen any significant evidence to support use of vitamin C and echinacea in large doses.

Undecylenic acid is a more powerful form of monolauric acid found in coconut oil. It's anti-fungal in nature, but also really expensive.
05-18-2016, 02:19 PM   #79
theseawillrise
 
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I'm giving his regimen a shot. I'll report back.

So far taking probiotics 3x daily has had a tremendously positive impact on my condition.
05-18-2016, 05:13 PM   #80
theseawillrise
 
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The theory was based on the idea that Crohn's is caused by candida infection which is pretty much debunked at this point.
FWIW, I went on the MAP clinic trial, lasted about 8 weeks. Didn't have any effect on me. They also weren't able to tell me if I had MAP.
05-18-2016, 05:17 PM   #81
Scared1
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FWIW, I went on the MAP clinic trial, lasted about 8 weeks. Didn't have any effect on me. They also weren't able to tell me if I had MAP.
Hi, can you provide some extra info? I would be very interested in hearing about it..what trial was this and when? Did they let you know if you were on placebo or not?
05-18-2016, 05:29 PM   #82
theseawillrise
 
Join Date: May 2016
Hi, can you provide some extra info? I would be very interested in hearing about it..what trial was this and when? Did they let you know if you were on placebo or not?
Hey,

So the trial was in NYC at Manhattan Medical, called MapUS. I just checked my calendar and I was actually on it for around 7-8 months.

They tested me early on for MAP but would never tell me the results. They also wouldn't tell me if I was on the placebo or not until after the trial. When I left the study, as it turns out, I found out I was on the trial drug (RHB-104).

I just emailed the trial coordinator to ask if she has results as to whether I tested positive for MAP at the beginning. Though if I remember correctly, I don't think they have the ability to detect MAP yet.

Every appointment I went to they took blood and stool samples.

I didn't notice anything initially, and then eventually I started feeling worse. The trial was supposed to be 52 weeks but I jumped out early.

Oh one additional note, I was allowed to stay on Humira (the drug I had been on at the time) during the duration of the trial.

Let me know if there's anything else you'd like to you know about it.
05-18-2016, 05:33 PM   #83
theseawillrise
 
Join Date: May 2016
The drug, RHB-104, is made up of these anti-biotics:

95 mg clarithromycin, 45 mg rifabutin, and 10 mg clofazimine

Do your research on them. They're pretty serious drugs. Clofazimine is used for the treatment of leprosy.

Ps. I got pneumonia for the first time in my life a few months into the trial. I don't know if it was related to the drug –I had been swimming in a lake in northern Ontario on mushrooms and it was cold
05-18-2016, 05:36 PM   #84
theseawillrise
 
Join Date: May 2016
The more research I do the more I think crohn's (or my version of it) has more to do with dysbiosis / disrupted gut microbiota than anything else. In which case anti-biotics work counter to resolving your gut issues.
05-19-2016, 09:32 AM   #85
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The more research I do the more I think crohn's (or my version of it) has more to do with dysbiosis / disrupted gut microbiota than anything else. In which case anti-biotics work counter to resolving your gut issues.
I hope you have good luck with treating for dysbiosis, but be aware it may not be the final answer, just a symptom of a greater issue.

I believe I had dysbiosis and I'm fairly confident I got it in check, but I still have other Crohn's symptoms, I'm just not as prone to outbreaks of diarrhea every time I eat sugar.

What helped me most was a gradual increase of fiber in my diet, targeting foods with significant resistant starch content.

These include green bananas and plantains, oats, potatoes (sweet ideally), brown rice, and I'm sure there's more you can find by looking around.

I also use safflower oil since it showed benefits to growth of firmicutes bacteria which are often deficient in Crohn's.

I didn't pay too much attention to probiotics because it's really hard to know which ones help but s. boulardii and b. infantis have some promising results for Crohn's.

Without applying other approaches I tried various probiotic protocols including massive doses over several days, mixing several probiotics, different strains, probiotic foods like kefir, sauerkraut etc.

Nothing touched my Crohn's but fiber definitely did.

I also don't know how much it counted by I did intermittent fasting at the same time. There's some evidence of its benefits to Crohn's, I might have posted about it back when I was doing it.

If you want a detailed recount of my thoughts, here's the blog post I made
https://beyondtheoddsfitness.wordpre...-1/#comment-39

I'm not sure I would still recommend long term ingestion of coconut or safflower oil as they're saturated fats which are pro-inflammatory and not really healthy.
05-24-2016, 08:32 AM   #86
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Test running a vegetarian / vegan diet for a week. So far it's awful and I can't tolerate most of the things I've tried.

I tried a spaghetti made from edamame and mung beans, ended up in the bathroom. Tried lentils, again in the bathroom. Flax seed oil seems okay, so I'm gonna switch to that from fish oil cause I don't like the heavy metals in fish.

I just can't seem to eat enough vegetables to make it viable. I'm gonna try broccoli, cauliflower and some other stuff as the week goes on but it's not looking good.

For all the benefits and anti-inflammatory properties fiber and meat-free diets profess they don't really seem to be working out for crohn's.

I haven't found any long grain or fibrous rices I can tolerate. I can do white rice, sushi rice and arborio but brown rice gives me cramps and basmati and jasmine seems to just give general indigestion.
05-24-2016, 09:48 AM   #87
Beach
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Sorry that the current diet trial is working out as hoped. Better luck in the future. I'm sure you will eventually find something that works in the end.

I have an idea you might want to try along with diet. It's a little different but you have an open mind and might give it a go. It is an idea that I believe has helped my stomach.

I've been grounding, also called earthing. This is where one walks barefoot outside in a safe area such as the back yard grass. I live in Florida most of the time so a barefoot visit to the beach and walking the surf works out well for me.

Earthing has anti inflammatory properties to it. It also has healing properties. This is thought to come from the slight electrical negative charge the earth's surface has.

I mention this because for me I've found when I earth 30 minutes or more a day typically I become well to the stomach. It isn't a cure, but it helps me a good amount.

There is decent amount of information on earthing found on the web. There are also earthing indoor pad that some use. I've found the indoor pads beneficial but not as helpful as walking outside barefoot.

To learn more on the idea, I thought this a nice video.

http://www.drsinatra.com/boost-heart...ugh-grounding/

I'm reading one of Dr. Becker's books at the moment. He is credited with inventing electrical machines that stimulate bone healing. He goes further into discussing how electrical currents can be beneficial at healing other parts of the body, he found with his research at a VA hospital. The book isn't on barefoot walking and earthing, but the ideas overlap. The book can be seen here:

http://www.amazon.com/Cross-Currents...4100211&sr=1-2
06-02-2016, 08:19 AM   #88
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I'm all for going barefoot but this sounds like placebo to me. I struggle to believe that if the earth is pumping out electrical currents they're weak enough that our shoes can insulate against them.

I dropped my vegetarian diet trial after 5 days because I had too many problems, I'm still having problems, now I can't seem to tolerate any whole foods other than meat. I've been living off mostly gluten free cookies, snack foods and chocolate milk.

I tried a kayle smoothie last night and ended up with an upset stomach. This is weird, because I've never had problems with some of these things until now.

I'm going to try andrographis + siberian ginseng again since that has some pretty strong clinical evidence and see if it helps get me back on path. I believe I've created too much inflammation to where I'm no longer just reacting to food and now reacting based on the inflammation in my bowels.

I'm avoiding any possible triggers / minimizing variables until this stabilizes.
06-02-2016, 10:55 AM   #89
Beach
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Fair enough. The idea of barefoot walking for health benefit is certainly a different idea. It's an older idea that went out of fashion years ago apparently. Sorry to read about the difficulties being experienced. It can be so so frustrating, working out theories and all the different possibilities from them. Hope you get back on track soon.
06-06-2016, 10:23 AM   #90
InstantCoffee
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Figured it out, it looks like in just the 5 days or so that I went vegetarian I lost the ability to digest steak. I've had to take betaine hcl and enzyme capsules to get it to digest and I still get some minor issues.

I was thinking back on my diet and what I changed before I got worse, and one thing is I was reducing egg intake. So I'm looking at what nutrients eggs are rich in that might explain it:

In one large egg:
Vitamin A, 5% DV
Vit D 5% DV
Vit E 3%
Thiamin 3%
Riboflavin 16%
B6 4%
Folate 7%
B12 12%
Pantothenic Acid 8%
High in phosphorous and selenium which a high, complete amino acid profile.

They're also high in biotin, but I don't think it's a concern because biotin is generally plentiful in most foods.


So we already know about b12 deficiency and crohn's, but I don't think I'm deficient, since my sores seem to come back every time I take b12 supplements suggesting an excess.

A is possible - I've heard some stuff about A and crohn's but can't recall off the etop of my head. E maybe. I don't know anything about riboflavin, time to find out. Folate works synergistically with b12.

I also don't know a bout pantothenic acid, phosphorous, and little about selenium other than it binds to mercury and helps make it inert.
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