InstantCoffee Log, rather than bloat the weight gain thread.

[InstantCoffee]

I'm starting a log of my personal journey and experiments. I am my own guinea pig, I will take all the risks, because I'm tired of living with this condition, and western pharm has failed me.

History:
Dx 2005ish when I was 14, currently 25. Immediately put on remicade, azathioprine, prednizone.

Remicade got me through HS and stopped working in college. Started having recurring abscesses on my butt cheeks reminiscent of hydradentditis suprativa (not cysts or fistulas) in college. First encounter with dietary limitations.

Switched to Humira after college due to declining health. Didn't help.

Infections got worse, symptoms got worse, eventually I went on disability, bedridden, diarrhea, vomiting every day.

Was off Humira for several months due to abscesses. Started a gluten-free diet and saw a huge improvement. Continued with diet, didn't restart Humira.

Later cut canola, nuts and high fructose corn syrup. Gained 50 lbs.

~2013

Abscesses returned, finally made the link to high sugar intake. 2 months no sugar no dairy, abscesses healed, Crohn's symptoms improved.

Late 2013:
Reintroduced sugar and dairy, over time symptoms deteriorated again, had to cut rice, orange juice and chocolate. ~summer 2014.

Summer 2014:
After some dieting got chocolate back, began to take protein shake to gain weight, go to the gym regularly. Began to have diarrhea again. Stopped going to gym, had to cut out protein shake. Began living on steak, eggs, oats and milk, Later 2014 into early 2015.

2015:
Assuming sugar caused disbiosis went on a 'detox' with vinegar, honey as only carb, eating steak with garlic for supper. Condition continued to deteriorate. Had to cut steak and garlic and later honey as well.

Currently rebuilding and introducing a more fiber based diet with no/ low carbs as a result of research on MAP and AIEC.

Supplements:
-Lauric acid
-Cat's Claw
-Vitamins of various types, most importantly D3, C, methyl b12
-Probiotics
-L-Glutamine


Diet loosely based on pubmed study
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2877178/figure/F2/
I can't have brown rice so

Limited meat, chicken only 1-3 times a week
Fish 1-3 times a week
Eggs as needed for protein
Sticky rice daily
Indian Bottle Gourd 1-3 times a week
Milk and cheese to my heart's content for now, I'd like to cut it but I'm afraid I just can't afford to replace the calories at this point in time.
Coconut oil daily in food or milk for lauric acid content and calories

Things I'm testing / trying:
-POM juice on rare occasion
-carrot juice
-Miso
-Raw milk
-Home made kefir
-Sauerkraut
-taurine

Supplements in loose use / testing (take sporadically):
-colostrum
-chromium piccolonate
-zinc piccolonate
-spirulina
-Tribulus for unrelated issues

 

[InstantCoffee]

My diarrhea is gone and now I'm having the opposite problem. I'm not sure of too many safe, low-carb fibers I can eat and most are high satiety, they make me full very fast.

Rice seems to be off the table again, I thought it was safe but now not so much. I believe that's what caused the japanese diet I tried to fail, the fermented bean paste seems okay though, just tastes awful. I ordered an aged Korean type off Amazon for really reasonable price.

http://www.amazon.com/gp/product/B00PHDBR0M/ref=oh_aui_detailpage_o00_s00?ie=UTF8&psc=1

Trying Taurine as a result of http://www.healingwell.com/community/default.aspx?f=38&m=2540341.
Maybe placebo, I feel really well after taking it.

Pom juice seems to have no negative effect on me unlike most other things high in simple sugars, I have to explanation for this. I only started trying it after someone said their Ayurvedic doctor said to take 2 pomegranates a day for diarrhea.

Tried Pau D'arco again, reacted to it, this stuff's going in the trash, I'm not sure why some say it's great for Crohn's. Makes me squirt out the rear in less than an hour.

If anyone can recommend any good multi vitamins that have:
b12 as methylcobalamin
metals in citrate form
niacinamide

And aren't giant horse pills I'd appreciate it. I'd rather take 5 little ones than 3 giant ones, they literally hurt my throat going down.

I might try getting my meats from a butcher instead of the grocery store.

 

[InstantCoffee]

Started making my own miso soup with the bean paste, it's actually really good.

I use chicken, eggs, oat flour, baby carrots and kale in home made broth or water, then mix the miso paste in after it cools so I don't kill the probiotics.

Something is giving me cramps and issues, either the kefir or pom juice. Only one way to be sure.

 

[InstantCoffee]

I'm cutting milk, it doesn't have a perceptible effect on my digestion but my skin problems seem to be getting worse despite whatever I try. I know there's a dietary link but I'm not sure what. Sugar was usually the cause in the past but I've cut my diet to a bare minimum of carbs and I'm still getting breakouts on my back and the lesion on my jaw is filling up again when it was finally getting better.

If my skin clears up I may try small amounts of raw milk, like 1 gallon a week to prevent becoming lactose intolerant. Your body shuts down lactose production when it's not consuming any.

Also I'm trying some bone broth. I'm a bitch sketchy about cow bones though because of MAP bacteria.

Looking at a diet like this:
Breakfast:
Oat bread muffin (oats, egg, butter, salt)
Cup of coffee with coconut oil
+ vitamins and supplements

Lunch:
Meat (chicken, tuna, or other fish)
Strawberries for carbs
Kayle for Vit. K

After work snack:
Pom juice with aloe vera
Possibly another oat muffin if hungry

Supper:
Miso soup (chicken boiled with kayle and parsley with miso paste added after cooling )
Glass of carrot juice for Vit A

Meats will be fried in coconut oil.
Looking to incorporate broths, probably as a quick breakfast.

Tuna at least once a week for selenium

Current supplement plan:
-Taurine
-Monolaurin
-Vitamins: A, C, D, K, methyl B12
-Minerals: Magnesium, calcium, zinc gluconate & piccolonate
-Chromium piccolonate
-Colostrum
-Cat's Claw (need to buy more)
-Tribulus
-Milk thistle
-fish oil
-caprylic acid
-black cumin seed oil

 

[InstantCoffee]

Dairy
Modifying my dairy intake was a flop because last weekend I got sick and ended up buying raw milk and chugging protein shake, but it's not all a loss because I figured out an alternative, more likely cause to my skin problems.

Salicylates:
Unfortunately I'm look at salicylate sensitivity as the cause of my recent flares and my acne breakouts and abscesses on my face. The clues all add up nicely but I have to test it to be sure and it's really hard, I'm finding many of my supplements contain some kind of soy / olive oil or extract high in salicylates.

I've got to stop using toothpaste and regular shampoos and find alternatives, I'm using salt and baking soda for toothpaste for now and brushing thoroughly.

A lot of foods I thought were safe might not be. Coconut and olive oil have been hit and miss with my crohn's and this may explain why. When flaring I've had to cut them and the question to me is cause or effect.

Either way my skin seems to get better with salicylates reduced.

Salicylates also means no aloe vera, no strawberries which I just fell in love with.

Experimental fasting diet
But beyond that I might try an experimental diet. A few weeks ago someone made a brief post about trying intermittent fasting for Crohn's and it was promptly deleted. I'm really disappointed with the amount of censorship here, we're all adults and can make decision on what we think is safe with our own bodies. Intermittent fasting is safe and has been used in weight modulation for years.

He explained some of the functions in release of catecholamines ,insulin response and serotonin balance in passing, but I never got to ask more detailed questions.

I passed it off as another anti-inflammatory diet until I found this.
http://www.crohnsforum.com/showthread.php?t=72412

A 2010 study where remission was induced in a patient by balancing their serotonin / dopamine levels.

Now the poster simply said it was 0 calories except some milk and coffee until 5PM, and before eating you should do weightlifting exercises. I don't understand the milk, but they mentioned something about sodium retention and preventing starvation effects. I wish I had time to discuss it with them further.

If I have to willpower to not eat until 5pm I can probably pull this off. I rarely have anything but a small lunch anyway until that time, but that's enough to offset the body's fasted state that induced this response.

If it's not showing positive results I don't intend to do it for more than a week because trying to hammer down a 2000ish calorie diet before bed is rough.

Meanwhile I'm reading about the effects of fasting on serotonin and healing.

Serotonin is a bioamine derived from tryptophan that is highly conserved throughout evolution (Berger et al., 2009). In vertebrates there are two pools of serotonin, one made in neurons of the brainstem and one made in the periphery, mainly, but not only, in enterochromaffin cells of the gut. In those two compartments serotonin biosynthesis is initiated by a different rate-limiting enzyme, tryptophan hydroxylase 1 (Tph1) in the periphery and tryptophan hydroxylase 2 (Tph2) in the brain. Since serotonin does not cross the blood-brain barrier it is believed that each pool of serotonin has a discrete set of functions (Berger et al., 2009) although some neurons of the hypothalamus may be accessible to peripheral molecules that otherwise do not cross the blood-brain barrier. While brain-derived serotonin is a multifunctional neurotransmitter, gut-derived serotonin (GDS) has emerged recently as a hormone able to regulate bone formation, erythropoiesis and regenerative processes

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3696514/

It looks like there's a huge spike around the 48 hour mark but idk if I want to go that long.

I found this
http://www.crohnsforum.com/showthread.php?t=9465
http://mech.fsv.cvut.cz/~smilauer/Crohn_Smilauer_fasting_en.pdf

But it's very unscientific. He's just kind of following a theorized cancer treatment which he cites, I haven't read it, blindly, but it works. I see it more of proof of concept than the outline which I'll follow.

He's not technically fasting because he's consuming calories from a fruit / vegetable smoothie, just in very low amounts.

Juice Fasting vs. Water Fasting
Juice fasting is much easier than water fasting. A water fast puts more stress on your vital organs (kidney, liver, heart and intestines) by promoting a faster release of acids (eg. uric acids) and toxins. This process itself could be overwhelming for a person who is doing fasting for the first time. Raw juices supply much needed vitamins, minerals and enzymes, improves cell oxygenation and promotes recovery from sickness.

https://www.knowyourgut.com/the-miracle-of-juice-fasting-for-colitis-and-ibs/

May explain the limited calorie intake of milk he suggested vs. a complete fast.

 

[InstantCoffee]

Day 1 fasting.

Started off the day with a cup of coffee and a large spoonful of l-glutamine. Had cramps and gas early on, idk if related to glutamine or previous night's protein shake.

As the day went on hunger increased, obviously, stomach felt better, and mood improved dramatically. This could be due to fast or due to being off salicylates.

Experienced unusually high thirst. Some weakness toward end of fasted period (4:00).

Had chicken with cheese and an oat flour cake (oats, butter, salt, baking soda, eggs) but couldn't finish the whole thing. Also had POM juice and protein shake with creatine, l-glutamine and d-aspartic acid. probably should just go with milk, protein shake seems to have adverse effects.

I'll have the POM as my blast of carbs to help absorb the creatine and l-glutamine right before the meal. I'll have to experiment more with DAA to see if it's causing a reaction.

I'm hoping if my condition improves and I can put on about 5 lb.s I can try a 48 hour fast to see if the increased serotonin spike at the 48 hour mark makes a noticeable difference.

Studing a link between the OCTN markers for Crohn's and poor transport of l-carnitine. http://www.sciencedirect.com/science/article/pii/S2251729413000086
Propionyl L-Carnitine is being suggested as a treatment. I'm going to see if I can pick some up after work.

Day 2 Fasting:

Slept very well, went to bed late and got up 30 minutes before alarm feeling well rested.

Experiencing some rumbling / gas but BMs have been solid despite the protein shake and DAA I took last night which often leads to looseness.

Stomach started rumbling during morning coffee, not sure what's going on, it's just nescafe and whole milk. I'd like to get more raw milk but I'm down to $30 in my bank until Friday.

I need to pick up a new salicylate-free vitamin K, and moisturizer. My mother just sympathy bought a bunch of my old vitamins I can't have because of salicylates lol.

I'm going to reintroduce Taurine tonight, it doesn't seem to be causing my loss of libido since it's still there without the Taurine. I also want to buy Propionyl L-Carnitine after some promising studies. Home treatments are expensive.

Scale weight: 124.3 I expect it to drop further before it gets better.

Tonight's dinner plans: 2 cans of tuna + cheese and protein shake, then an oat cake at the end of the night. I plan on soaking some oats overnight in milk and pom juice for tomorrow night's dinner after reading about the benefits to digestibility of oats from 24 hour soaks.

I definitely, by result of the fast or the low salicylate diet, am experiencing a psychological benefit. My focus is much higher, I never could focus on pubmed studies like I have been the past few days. My depression went way down.

 

[WingedVictory]

Interesting to see you focusing better by going lower salicylate. May want to look into phenols as well. They're closely associated with salicylates for treating spectrum disorders / cognitive symptoms...which tend to go hand in hand with bowel irregularities as well. Food chemicals tie in with blood brain barrier/leaky brain theories with regard to inflammation.

Fasts beyond 16 hours are pretty stressing on the body. Watch out for hypoglycemia symptoms. Don't want to overdo it.

Have you considered the histamine (aged cheese) or the casein/whey proteins...or both contributing to skin issues? Just curious because dairy is a huge obvious catalyst for my breakouts (face, chest, back). As well as eggs and chocolate too, both histamine related.

Sugar/Fruit/Juices/FODMAPs foods for IBS symptoms/diarrhea? How many grams of sugar do you consume per day? I'm guessing not much because you say you're low carb.

Oats / other non-wheat grains contributing to leaky gut? All grains contain prolamins (a category of proteins) which are considered to be indigestible. Even the orzenin protein in white rice which some label as a safe starch. I read that this can contribute to dysbiosis and gut permeability because they can either pass through the intestinal barrier or get consumed by certain bacteria that eat protein. Additionally I have notes that oats have saponins (avenacin) and lectins which add to the leaky gut effect. How do you handle "safe" starches like white potatoes (nightshade, questionable), yams, sweet potatoes?

I think safe starches, fats, and extra protein are viable options for weight gain while trying to avoid the symptoms from food chemicals and sensitivities.

 

[InstantCoffee]

Interesting to see you focusing better by going lower salicylate. May want to look into phenols as well. They're closely associated with salicylates for treating spectrum disorders / cognitive symptoms...which tend to go hand in hand with bowel irregularities as well. Food chemicals tie in with blood brain barrier/leaky brain theories with regard to inflammation.

Fasts beyond 16 hours are pretty stressing on the body. Watch out for hypoglycemia symptoms. Don't want to overdo it.

Have you considered the histamine (aged cheese) or the casein/whey proteins...or both contributing to skin issues? Just curious because dairy is a huge obvious catalyst for my breakouts (face, chest, back). As well as eggs and chocolate too, both histamine related.

Sugar/Fruit/Juices/FODMAPs foods for IBS symptoms/diarrhea? How many grams of sugar do you consume per day? I'm guessing not much because you say you're low carb.

Oats / other non-wheat grains contributing to leaky gut? All grains contain prolamins (a category of proteins) which are considered to be indigestible. Even the orzenin protein in white rice which some label as a safe starch. I read that this can contribute to dysbiosis and gut permeability because they can either pass through the intestinal barrier or get consumed by certain bacteria that eat protein. Additionally I have notes that oats have saponins (avenacin) and lectins which add to the leaky gut effect. How do you handle "safe" starches like white potatoes (nightshade, questionable), yams, sweet potatoes?

I think safe starches, fats, and extra protein are viable options for weight gain while trying to avoid the symptoms from food chemicals and sensitivities.

I'm not 100% sure if salicylate consumption has an effect but avoiding topical application has cleared up my skin breakouts, except my facial abscess continues to fill up but that might be my protein shake which I'm going to stop taking again because it's been causing diarrhea and gas. It may be a coincidence and something else in the soaps I was using were causing it, but the thing is I've been using shower gel on the rest of my body and fancy soaps + coconut oil on my face, scalp and shoulders. The shower gel was on a salicylate free list, and the rest of my skin is fine, meanwhile my face, scalp and shoulders are red and inflamed and break out regularly.

I've looked at amines before and the foods don't seem to have any link to things I'm sensitive to enough to be concerned. I'll look at phenols.

If I do a 48 hour fast it will probably be calorie-limited with small amounts of juice throughout the day. I also need to research electrolyte balance and how fasting effects it so I can make sure that's not an issue.

Currently my protein shake is causing symptoms, sugars often do, I reintroduced it temporarily because sometimes it seems to have a calming effect when other things are causing symptoms but if i take it for too long it reverses. I believe it's the maltodextrin in it since studies already show how bad that is for Crohn's. Unfortunate they couldn't have left it out, it's otherwise a great product.

Oats are the only grain I consume and have thus far shown no adverse reaction. I can't have white potatoes, I haven't tried sweet potatoes in a long time.

Dairy seems to be a safe bet for me and modifying my dairy intake hasn't had much effect on my skin or digestion. I'd prefer to be on raw milk rather than pasteurized but I can't afford it until next week.

When I come home from work I immediately drink a glass of POM juice with glutamine, creatine and DAA in it to quickly absorb them, plus take a few of my pills.

Then I eat my supper and follow with more POM. Supper is meat + cheese.
Appetite permitting I'm hoping to add an oat flour muffin after, but I think the protein shake has been causing appetite cessation and adverse effects, when I eliminate it my appetite should come back.

As my symptoms improve I'm going to look at adding fruits, vegetables and maybe lentils.

I'm also aiming to understand the effects of sugar on my system.
Sugar causes loose stool and presence of increase bile in it. I want to better understand what causes increased bile in stool, decreased bile absorption, or increased bile production, and how sugar effects it.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1379072/?page=1
I just finished reading this study that suggests a high sugar diet promotes fermentation of colonic bacteria, but not bacteria in the small intestine.

There is a change in secondary bile acids but not primary, there's an increase in faecel lithocholic acid and deoxycholic acid, but not a marked increase in primary acids.

Total gut digestion slowed down with increase of sugar intake, it's believed to be related but they can't prove it.

Admittedly I know nothing about bile and this is something I need to go research.

Further research on bile acids:
Bile is released by the liver where it is conjugated with taurine or glyine to form 8 conjugated bile acids or bile salts which are water soluble due to their pH levels and more effective.

I know Taurine has been suggested as a treatment for UC and possible Crohn's in something called rapid induction therapy.

When these bile acids are secreted into the lumen of the intestine, bacterial partial dehydroxylation and removal of the glycine and taurine groups forms the secondary bile acids, deoxycholic acid and lithocholic acid. Cholic acid is converted into deoxycholic acid and chenodeoxycholic acid into lithocholic acid. All four of these bile acids can be taken back up into the blood stream, return to the liver, and be re-secreted in a process known as enterohepatic circulation.[2][3]

So the question arises, is there an excess production of bile, is the bile not being conjugated and that's why it's not being converted by bacterial dehydroxylation and reabsorbed, or is the bacterial dysbiosis of the gut preventing dehydroxylation?

http://en.wikipedia.org/wiki/Bile_acid_malabsorption

Most likely it's not overproduction but failure to reabsorb. So my next question is, is this a cause or an effect?

The ileum is very efficient at absorbing the glyco- and taurine-conjugated forms of the bile salts. The apical sodium-dependent bile salt transporter (ASBT, IBAT, gene symbol SLC10A2) is the first step in absorption at the brush-border membrane. The cytoplasmic ileal bile acid binding protein (IBABP, ILBP, gene symbol FABP6) and the basolateral heterodimer of OSTα and OSTβ transfer bile acids through and out of the cell where they eventually enter the portal vein. These bile acid transporters are all highly expressed in the ileum but not in the liver, jejunum or colon.[4] When expression of these specialized transporters is reduced, the intestine is less efficient at bile acid reabsorption (Type 1 bile acid malabsorption). If intestinal motility is affected by gastro-intestinal surgery, or bile acids are deconjugated by small intestinal bacterial overgrowth, absorption is less efficient (Type 3 bile acid malabsorption). A very small proportion of the patients with no obvious disease (Type 2 bile acid malabsorption) may have mutations in ASBT,[5] but this mutation is not more common in most patients and does not affect function.[6]

I'm going to try psyllium husks as they seem to be an OTC variation of cholestyramine with less side effects.

There is a worry of reduced absorption of vitamins, but if I'm doing intermittent fasting I can take my vitamins at a time far spaced out from my food when I'd have to take the husks for their effect.

http://www.ncbi.nlm.nih.gov/pubmed/6673068

Patients with Crohn's show a low level of Taurine conjugated bile acids but a normal level of Glycine conjugated bile acids as compared to controls, making an abnormally high glycine to taurine ratio of bile acids, supporting Taurine supplementation further.

 

[InstantCoffee]

I picked up psyllium husks, boswellia and DHEA Friday, and I ordered propionyl l-carnitine online because I can't find it in stores around here.

It's sold as GPLC as an exercise supplement and men's sexual wellness enhancer, it could be the people I asked about it simply didn't know they had it and I didn't know about GPLC as a name until I left my usual store.

Studies were done on 4g and the only one I found was an l-carnitine complex with 300mg per pill, 60 capsules a bottle, $35. Hell to the no.

I read a study on DHEA confirming my theory I had about 2 years ago on its benefits for Crohn's disease, never have I felt so validated! I went and bought more.

As of yesterday I weighed in at 125.8 vs. starting weight of 124.3 a few days before. I weigh at a stable time of the day, in the morning post bowel movement, so there should be little room for difference in retention and stuff.

I'm not sure what's working but it's definitely working between kicking salicylates and intermittent fasting.

My calorie intake is actually lower because I'm eating roughly the same size dinner as usual, maybe SLIGHTLY larger but no lunch.

Bowel movement quality has improved, less gas, no floaters from poor fat absorption.

I've started sipping a mix of pom and carrot juice through the day to stabilize electrolytes but in small enough amounts to remain in a fasted state hopefully. It's about a liter of water, 1/2 cup carrot and 1/4 cup pom juice to last 8+ hours.

I'm going to experiment with psyllium husks and sugar today to see if they allow me to eat sugar without producing bile filled BMs.

 

[InstantCoffee]

The first week went great, but this weekend I decided to try not fasting.

Psyllium husks opened the door to certain chocolates and treats that caused me problems in the past, but has a limited effectiveness.

Friday I got adventurous and tried a natural chocolate from the health food store with caocao nibs in it resulting in some bloating and stomach discomfort.

I've had increasing gas levels since Saturday night / Sunday and not sure what's causing it. I've been experimenting a bit too much maybe, I had tried Hershey's chocolate, a buttermilk powder, introduced a new supplement called MSM, tried two types of bacon, and 100% maple syrup.

Monday my usual juice drink seemed to be sending me on bathroom trips, I wonder if I imbalanced my gut flora with the sugar. They Hershey's bar is my #1 culprit, but still experiencing gas / diarrhea 2 days out.

I'm trying soaking my oats because it's supposed to increase digestibility and also going off my fast, but if I don't see an improvement in the gas / bathroom frequency soon I'll go back on it.

Current supplement regimen:
-DHEA
-D Aspartic Acid
-GPLC (propionyl l-carnitine)
-Taurine
-Creatine
-Weekly Vit D
-Fish oil
-Boswellia
-Magnesium
-MSM
-Nightly DMSO application

Possibly related:
Hidradenitis Suppurativa flare on face has not been looking good. I've been applying a salve of DMSO with colloidal silver and tea to it but it's been growing quite large and painful.

I put a hydracolloid bandage on it sunday and removed it yesterday, it opened and I drained a LOT of fluid from it, then applied more DMSO with tea, silver, magnesium and zinc to it. I've heard HS responds to zinc and magnesium and may be viral. I'm not sure if the oral magnesium and zinc I used are actually capable of penetrating the skin or dissolving in the DMSO though.

It's really disconcerting to learn that HS is known to be linked to Crohn's yet none of the 7-10 doctors I've seen regarding it have mentioned it as a diagnosis or even being related to my Crohn's.

Bookmarked reading for later further investigating serotonin / dopamine therapy:
http://www.crohnsforum.com/showthread.php?p=872039#post872039
http://www.healingwell.com/community/default.aspx?f=38&m=2621363
http://www.steinorthopedic.com/pdf/aminoacidtherapy.pdf
http://www.livestrong.com/article/185758-how-to-balance-dopamine-and-serotonin-levels/

I'm very interested in this, it directly related to the success of treating with IF and DHEA. Maybe Crohn's flares and depression are more closely linked than just being sad about pooping and hurting?

Interesting facts:

"Tyrosine, not tyramine, is the precursor to catecholamines. Tyramine is a breakdown product of tyrosine. In the gut and during fermentation, tyrosine, an amino acid, is decarboxylated to tyramine. Under ordinary circumstances, tyramine is deaminated in the liver to an inactive metabolite"

I tried https://en.wikipedia.org/wiki/Phenibut phenibut once and had adverse effects in the next 12 hours, wonder if it's related, it acts on the neurotransmitter amino acids similar to benzodiazepines.

Reading suggests avoiding foods high in tyramine as they can displace amines such as dopamine which may be counterproductive:

https://en.wikipedia.org/wiki/Tyramine

" tyramine can also displace stored monoamines, such as dopamine, norepinephrine and epinephrine, from pre-synaptic vesicles."

Foods containing considerable amounts of tyramine include meats that are potentially spoiled or pickled, aged, smoked, fermented, or marinated (some fish, poultry, and beef); most pork (except cured ham); chocolate; alcoholic beverages; and fermented foods, such as most cheeses (except ricotta, cottage, cream and Neufchâtel cheeses), sour cream, yogurt, shrimp paste, soy sauce, soybean condiments, teriyaki sauce, tempeh, miso soup, sauerkraut, kimchi, broad (fava) beans, green bean pods, Italian flat (Romano) beans, snow peas, edamame, avocados, bananas, pineapple, eggplants, figs, red plums, raspberries, peanuts, Brazil nuts, coconuts, processed meat, yeast, and an array of cacti.

Lets see, things on that list that don't agree with me:
pickled / smoked / fermented food, chocolate, alcohol, yogurt, teriyaki, banana, nuts, that I'm aware of. Others I simply don't eat / try.

Cheeses however seem safe, so maybe no connection / purely coincidental.

I've made my own miso soup with soybean paste and had no negative effects. Sour cream seems safe, as does high intake of most meats.

http://www.nrlc-group.net/proceduresAndFacilities/Tryptophan.php

Milk is extremely high in L-tryptophan which could explain why so many Crohn's patients react poorly to it.

https://en.wikipedia.org/wiki/Mucuna_pruriens

http://www.healingwell.com/community/default.aspx?f=38&m=2152224

I just found my multi-vitamin has all the sufficient co-factors for the Serotonin therapy, I just need to buy the tyrosine, 5htp and cysteine. Going to try this after work.


Wild Oregano Oil & Thyme Oil
http://www.healingwell.com/community/default.aspx?f=38&m=2970239

 

[InstantCoffee]

Yesterday I got progressively worse throughout the day after my morning routine so it had to be either MSM or the maple syrup. I was in extreme pain from the gas around mid afternoon and considered leaving work early. Instead I took a break, sat in the car in the fetal position and farted for 15 minutes straight and that got me through the next 2 hours.

Last night before bed I took an extra large dose of MSM and was gassing it all night, I think I found my culprit but not 100% sure yet. The gas started this weekend, and my MSM arrived Friday night. I don't' remember it being bad on Saturday though, I was out all day and didn't have issues to my recollection, but my dosing was super low too.

Monday wasn't terrible, then I had the chocolate bar monday night, then tuesday was not great, but wednesday was the worst and most food based antagonists are gone in 12-24 hours, so shouldn't be residuals from the hershey's bar unless it upset the balance and allowed other things (maple syrup and POM juice) to continue to feed gut bacteria.

Hershey bars do contain emulsifiers which are known to exacerbate AIEC.

I'm back on intermittent fast until this sorts itself out.

After yesterday's reading I stopped by the store and bought:
- L-tyrosine
- 5-HTP
- L-cysteine
- oregano oil
- thyme extract

I like this approach because it does a couple things:
1. The neurotransmitter issue approaches form a new angle, instead of trying to add back in lacking nutrients, it tries to repair the processes that cause them. I had good success with IF which is directly linked to neurotransmitter stabilization via increased dopamine and gut serotonin levels.

2. The oil approach directly targets invasive bacteria on a level other at-home therapies cannot.

If it was the MSM causing it, then I'll have to see what the mechanism of that is and why it was recommended in the first place (it's considered similar to DMSO, a powerful anti-inflammatory).

If it was the sugars I was eating, then the therapy I was trying was just that. I don't want a therapy, I want a treatment. If it's not opening doors in my diet it's not actually targeting my disease, just my symptoms. Being asymptomatic is cool and all, but I want to fight back.

 

[josemadrid]

bacteria is not the whole picture. it absence or wrong type just makes the gut line populated with immune cells and creates the pain. This is the manifestation, but not the cause of the inhibition of the cellular apoptosis and the bad cellular signaling.

Also chemicals and food types are not the whole picture because this is not an allergic reaction.

intermittent fasting is not going to work if you are loosing weight, because your endogenous glucose production is going to increase the cells anabolism no matter that you do not eat.

You need to become insulin resistant on low sugar cellular environment using diet. the feeling is like you do not have energy, you cannot concentrate and you can ending gaining a bit of weight. when you feel like that you need to exercise to adapt the mitocondria to this low glucose environment.

dopamine is a precursor of adrenaline, with a similar molecular structure. Dopamine is a catecholamine and if of course heavily implicated in any autoimmune disease. lots of autoinmune patients, specially girls and women, takes antidepresants and some of them have effects on dopamine.

Have you ever checked your sugar levels during the 24 hours of the day?

 

[InstantCoffee]

bacteria is not the whole picture. it absence or wrong type just makes the gut line populated with immune cells and creates the pain. This is the manifestation, but not the cause of the inhibition of the cellular apoptosis and the bad cellular signaling.

Also chemicals and food types are not the whole picture because this is not an allergic reaction.

intermittent fasting is not going to work if you are loosing weight, because your endogenous glucose production is going to increase the cells anabolism no matter that you do not eat.

You need to become insulin resistant on low sugar cellular environment using diet. the feeling is like you do not have energy, you cannot concentrate and you can ending gaining a bit of weight. when you feel like that you need to exercise to adapt the mitocondria to this low glucose environment.

dopamine is a precursor of adrenaline, with a similar molecular structure. Dopamine is a catecholamine and if of course heavily implicated in any autoimmune disease. lots of autoinmune patients, specially girls and women, takes antidepresants and some of them have effects on dopamine.

Have you ever checked your sugar levels during the 24 hours of the day?

I understand food isn't the whole picture, it's symptomatic of the greater problem, but identifying a trigger is important in identifying a safe and balanced diet.

Treating for bad bacteria is shown to be extremely effective so I don't think it should be discounted, even if the bacteria are also a product of the condition rather than the cause.

What are your feelings on the serotonin - dopamine treatment? Basically loading l-tyrosine and 5-htp onto a patient (mostly tyrosine) and forcing the body to balance neurotransmitter levels by creating a competitive environment?

The problem is that fasting could possibly conflict with it. Can't modulation of cortisol levels have a negative effect on hormone levels (like testosterone) which could cause a drop in dopamine? I don't really have a firm grasp of their connection but I know they are related, and that your dietary cycle effects dopamine / serotonin levels through the day. The doctors don't describe diet as it relates to their treatment.

I'm on my second dose today, many people reported diarrhea from the 5-HTP and I've thankfully had none so I'm already optimistic for that, and my depression is gone. I felt so giddy last night I started laughing for no reason.

I fasted to 5:00 for 2 weeks, I tried coming off the fast this weekend because I wanted to see if it was the fast or the supplements working. I can't say whether it was breaking the fast that hurt me, I believe though that the MSM was the prime culprit and I'm going to stop taking it.

 

[josemadrid]

I understand food isn't the whole picture, it's symptomatic of the greater problem, but identifying a trigger is important in identifying a safe and balanced diet.

Treating for bad bacteria is shown to be extremely effective so I don't think it should be discounted, even if the bacteria are also a product of the condition rather than the cause..

I agree with you. Healing the gut line can end with Crohn's but is difficult to achieve.

What are your feelings on the serotonin - dopamine treatment? Basically loading l-tyrosine and 5-htp onto a patient (mostly tyrosine) and forcing the body to balance neurotransmitter levels by creating a competitive environment? ..

every desregulation in catecholamines is going to have an impact in an autoimmune disease. Dopamine is a catecholamine that can be generates de novo by immune cells, so I am sure there is a connection.

The problem is that fasting could possibly conflict with it. Can't modulation of cortisol levels have a negative effect on hormone levels (like testosterone) which could cause a drop in dopamine? I don't really have a firm grasp of their connection but I know they are related, and that your dietary cycle effects dopamine / serotonin levels through the day. The doctors don't describe diet as it relates to their treatment. ..

Probably, but if you take the whole picture you are going to have anti-inflammatory effects with a insulin resistant fasting. This is proved by science. Testosterone and cortisol have similar peaks hours in the morning so I do not think they are truly opposed. Testosterone/Cortisol ratio is heavy used I know, but is a ratio of the circulating blood levels, do not mean that they are antagonists.

Also intermittent fasting sometimes increase testosterone and grow hormone levels.

I do not think testosterone have a heavy impact on autoimmune diseases no matter its relation with dopamine.

I fasted to 5:00 for 2 weeks, I tried coming off the fast this weekend because I wanted to see if it was the fast or the supplements working. I can't say whether it was breaking the fast that hurt me, I believe though that the MSM was the prime culprit and I'm going to stop taking it.

in your log I see you take some juice. Juice are high sugar and increase insulin. Insulin and sugar is pro mTOR as is lifting weights. In my opinión is better to maintain your mTOR activities at the end of the day, in a 4 hour windows, and leave the most part of the day to try to express the AMPK pathway, with fasting and coffee.

This is pretty difficult as smoking, for example, increase the mTOR pathway. Or taking a fruit juice. The only think that you can take is coffee as is the only food I know that stimulate the AMPK pathway taking out nutrients from the cells. With no sugar or edulcorants of course.

 

[InstantCoffee]

The relationship between cortisol and testosterone is that they are created from the same resource pool - but cortisol comes first. If your body is producing too much cortisol it can become starved of the cholesterol it needs to produce testosterone.

 

[josemadrid]

The relationship between cortisol and testosterone is that they are created from the same resource pool - but cortisol comes first. If your body is producing too much cortisol it can become starved of the cholesterol it needs to produce testosterone.

My bet is that cortisol and starving to low sugar levels is much more important to treat any autoimune disease than testosterone levels. low testosterone increase immune system yes, but the action of high cortisol prevails to shut down immune system.

also a high cortisol and low test ratio does not mean a low basal testosterone blood levels.

low testosterone, low cortisol could be terrible btw, you have point this very clear.

 

[teeny5]

InstantCoffee: what protein shake do you use?

 

[InstantCoffee]

InstantCoffee: what protein shake do you use?

I use Russian Bear 5000, it's a mass gainer imported from Russia and the only one that doesn't make me extremely sick.

I believe it's because it uses glucose polymers instead of sucrose or fructose. It also contains your daily vitamins and minerals as well as some supplements that may help with crohn's like colostrum.

That said, since they started adding maltodextrin I hesitate to recommend it for long-term use by crohn's patients.

I just found Jay Robb's all-natural protein yesterday

http://www.hihealth.com/jay-robb-whey-protein-chocolate-12-oz.html

I haven't tried it but it looks very safe, the ingredients list is super clean, but it is a PROTEIN shake not a mass gainer, and I want one for an infusion of liquid calories with low satiation. A protein shake is typically low in calories.

I would also say that ON Gold Standard is *probably safe* because it's one of the few that doesn't have sucralose (a fake sugar) and a huge list of other added ingredients.

http://www.vitaminshoppe.com/p/opti...ch-chocolate-5-lb-powder/op-1011#.VYPoK_lVhBc

Protein Blend (Whey Protein Isolates, Whey Protein Concentrate, Whey Peptides), Cocoa(Processed with Alkali), Lecithin, Natural and Artificial Flavors, Acesulfame Potassium, Aminogen®, Lactase.

That said when I tried it it DID upset my stomach, but I've had a hit or miss relationship with chocolate and vanilla flavoring that many do not.

My bet is that cortisol and starving to low sugar levels is much more important to treat any autoimune disease than testosterone levels. low testosterone increase immune system yes, but the action of high cortisol prevails to shut down immune system.

also a high cortisol and low test ratio does not mean a low basal testosterone blood levels.

low testosterone, low cortisol could be terrible btw, you have point this very clear.

I'm not sure I entirely understand the role on insulin but I'll try to learn more. I've seen Chromium Picolonate recommended as a Crohn's supplement due to its effects on insulin but never understood why.

It seems counter productive to your recommendations though. It says it increases insulin receptor sites.

Good or bad?

http://www.demorton.com/Tech/Crohns-AlanGraham.htm

 

[josemadrid]

I'm not sure I entirely understand the role on insulin but I'll try to learn more. I've seen Chromium Picolonate recommended as a Crohn's supplement due to its effects on insulin but never understood why.

It seems counter productive to your recommendations though. It says it increases insulin receptor sites.

Good or bad?

http://www.demorton.com/Tech/Crohns-AlanGraham.htm

IMHO is bad. Chromium Picolonate increases insulin sensivity, this means more time with the mTOR activated = less apoptosis and more celular proliferation.

You need to shut down your metabolism and become insulin resistant in a low sugar environment to reduce the proliferation of immune cells and revert the cells signaling that creates the autoinmune cascade reactions.

I would check my blood sugar levels during 24hour and my glucose in urine to know why you are loosing weight so fast.

please mantain us up to date, specially of you try to return to make another fasting weeks.

Some tips... glutamine activates the mtor pathway so do not take it in your fasting hours. In fact going to the gym will activate mTOR pathway and release glutamine from muscles, so gym is the last thing in the day prior to eat. The whole idea of fasting is to shutdown the mTOR pathway and increase the AMPK pathway.

The life style change is much better than the pills, a molecule would never be able to touch all the pathways involved. I do not think a food or a molecule can cure an autoimmune disease.

Is you return to fast divide the day: 18 hours for fasting (AMPK) and 6 hours to exercise (on empty stomach) and feed (mTOR) If you like supplements do not take them in the morning or in your fasted hours.

If you take only one big meal in a short time could be better, but as a crohns patient you need to be careful with your digestive system and the problems you can have eating this way.

 

[josemadrid]

Creatine Loading Induces Reductions in Cortisol Levels at Rest & Post Workout, As Well As Improvements in Glucose Managament in Swimmers During High Intensity Training

Creatine is probably not a good idea but who knows, sometimes is difficult because there are a lot different studies to read

 

[InstantCoffee]

Alright, I won't bother with chromium.

I've restarted fasting thursday and friday. I'm kind of still in recovery from the MSM so hard to gauge progress, I sort of have to restart from where I was, the MSM made a real mess of my stomach.

I don't really have access to diabetic testing supplies. Idk if you can get that without a prescription? Plus I can't really afford additional stuff on top of neurotransmitter pill cocktail and oils.

If nothing else, the pills have annihilated my depression. I'm walking on cloud 9 all day and sleeping better.

I only really have time for one big meal but I eat it slowly after work. Lately it's meat (chicken/steak/tuna with fixings) followed by oatmeal with 100% maple syrup and milk then strawberries.

I can probably cut the creatine. It has a lot of proported benefits but as far as I can tell it only helps me get a few extra reps out in weightlifting. Its effects on muscle gain and weight gain in tests are small. It's also additional stress on what's probably already a set of stressed kidneys.

When you say not to take supplements fasted, does that include my neurotransmitter pills? Because I have to take those 2, eventually 3 times a day to work.

 

[josemadrid]

I do not think pills will have an impact on fasting, but juice and protein shakes and aminoacids for sure.

MSM is know to increase hair grow and repair tissue, so probably it has an anabolic effect in cells, which is not a good think. But I could not said it for sure.

I do not think you are going to have effects that fast. This routine could probably need months to help. And later if this works you also need to recover the intestinal flora.

a bit of electrolyte imbalance is good because low sodium increases insulin resistance and slow metabolism. thats one of the effects of taking coffee. If you feel really bad, tired and have some arritmias at the end of the fast you could try to take some sodium with wáter at the end of the fast. It will slow the healing process but sometimes is necesary to go to the gym. I take myself sometimes a glass of chicken broth with salt and a egg yolk prior my gym.

The only danger of this diet is to exercise with a bad electrolite imbalance, but you will find that this symptoms are very easy to anticipate.

There are glucose machines that cost no money but sticks are expensive. Send me a private message, if you have a paypal account I could help.

If you drop weight that fast you probably have a very fast metabolic state that could be related with some of your health problems.

 

[WingedVictory]

Jose, the gut biome is just as overlooked by the medical community as diet is when treating digestive autoimmune diseases and that's why they're clueless in bringing true disease remission. I think the shocking truth is just how much bacteria matter in our mental and physical well being. I'm starting to think probiotics / bacteria can be considered psychotropic and immunomodulating "drug" all on their own based on the gut/brain axis signaling theory.

The concern with food chemicals isn't about allergies, it's the secondary condition of food sensitivities which are a result of leaky gut. And why would the absence of bacteria on the gut lining lead to cell destruction/pain signals? That doesn't even sound like a realistic state to achieve and I'm not sure what exactly that is trying to prove anyways.

Instant, I think you might find this blog useful if you aren't familiar with it already.
http://coolinginflammation.blogspot.com/

It seems you're fasting extensively for the sake of starving bacteria. I question whether that will work given how well bacteria can survive.
Have you ever explored the possibility of candida or e. coli overgrowth? I know you mentioned MAP before.
Are you concerned at all with healing a leaky gut? Still taking glutamine, what dose? What is your position on oatmeal, do you think it contributes to leaky gut?
What brand of probiotic or fermented foods, milk or water kefir? Do you consume prebiotics like resistant starch so they will thrive? Green banana/plantain flour or potato starch are popular choices.
Any estimation of your daily carbohydrate intake?
Are you still avoiding salicylates? Have you considering re-adding coconut oil?

 

[InstantCoffee]

It seems you're fasting extensively for the sake of starving bacteria. I question whether that will work given how well bacteria can survive.
Have you ever explored the possibility of candida or e. coli overgrowth? I know you mentioned MAP before.
Are you concerned at all with healing a leaky gut? Still taking glutamine, what dose? What is your position on oatmeal, do you think it contributes to leaky gut?
What brand of probiotic or fermented foods, milk or water kefir? Do you consume prebiotics like resistant starch so they will thrive? Green banana/plantain flour or potato starch are popular choices.
Any estimation of your daily carbohydrate intake?
Are you still avoiding salicylates? Have you considering re-adding coconut oil?

The fasting isn't for bacteria so much as a hormonal anti-inflammatory response in the body.

I've tried anti-candida approaches and never really seen results.

I was taking glutamine, I just ran out, debating on buying more. I never noticed improvement and it gave me gas. I took about a tablespoon a day.

I tried fermented foods. Sauerkraut seems safe but I have trouble getting it to not get fungus when growing. Kefir upsets my stomach as does store yogurt, never tried home made yogurt.

I have some probiotic packets I got from GNC that I take.
As far as resistant starches, I can't have potato starch and idk about plantains or green bananas.

My carb intake is very high, my caloric breakdown is probably 30% protein then 35% fat 35% carbs if I had to guess.

I stopped avoiding salicylates, my skin got better because I can salicylates but it was actually the sodium laurel sulfate and the products I switched to were free of those. I'm back on coconut oil. I switch it out with butter sometimes.

I don't believe oats are inflammatory but I do believe they and other grains should be soaked for improved digestion.

Saturdays are gonna be hard to fast. I usually visit friends, I wasn't feeling so well from Friday's dinner, I felt drained, I think something didn't agree with me, so I had to eat some before leaving the house.

I think maybe is the maple syrup or garlic.

 

[WingedVictory]

Do you think that the benefits of fasting outweigh the lack of nutrition you're missing for a good portion of the day? I would be concerned if fasting is impairing immune system function to fight off potential yeast/bacteria overgrowth issues. Are you doing it mostly for the serotonin aspect? That doesn't sound like it's a sustainable solution. I think your mood symptoms may be related to dysbiosis as the core cause of....well everything.

I think beating back candida to healthy levels mainly requires patience and dedication to GAPS or SCD or Low FODMAP combined with a probiotic/prebiotic regime. Milk kefir seemed to deepen my issues with dysbiosis giving me irregular heartbeat - I mainly it mainly had something to do with the yeast strains causing candida to migrate. I think for autoimmune sufferers with leaky gut and a weakened immune system fermented foods can be dangerous because they're so potent.

When you say you can't do potato does that mean you get IBS symptoms from them or something non-digestive? Just curious, either way I would think that banana or plantain is a healthier option than potato starch because it's a nightshade.

Macros look pretty balanced, I don't consider that high carb, especially if you're active.

When I read you switched up supplements and body care products I kind of didn't think removing salicylates would be effective since they're already in most plant foods. Which made me look at your initial post again and it seems like you have no fruits or veggies in your diet. Is that because you don't think you can handle the fiber? My father supplements most of his macro nutrients and I often worry that his body doesn't absorb them as well as he would from food sources.

I'd like to think that anything foreign in blood stream is inflammatory. If soaking oats helps ferment and break down the proteins that would be better. At this point though I would think that even fruits would be a safer bet than grains if you suspect leaky gut is a factor.

If raw garlic then i'd suspect feeling crumby as a die-off reaction. I think many of us tend to micromanage our diets thinking its a specific food that is causing "autoimmunity". I think in the past few years trying to diagnose myself I didn't focus enough on the bacteria/yeast aspect and too much on being gluten free. I'm now just starting to finally believe I have systemic candida after trying xifaxan and seeing more skin outbreaks in uncommon places... Antibiotics kill off the probiotics and thus a yeast like candida has an opportunity to further take over. And from a quick google around the internet it's a very common issue that is often diagnosed by the medical community as a digestive autoimmune disorder because SIBO, leaky gut, and IBS symptoms are basically the same as "crohn's" symptoms. SIBO and yeast overgrowth often come together. I'm not trying to project my own health issues onto you I just think we have some similar chronic non-digestive symptoms that could provide a link to potentially the same cause. Of course many symptoms do overlap with unique conditions.

 

[InstantCoffee]

My appetite is greatly increased so my calories end up being about the same at the end of the day. I eat pretty much from when I get home from work until an hour before bed.

If it's caused solely by inflammation, I'd expect to see improvement through fasting.

If it's caused by candida, I'd expect to get worse by suppressing immune function.

The thing is our immune system doesn't seem to be doing much to fight it either way, and you have to consider the possibility that inflammation is leaving the door open for SIBO rather than the other way around.

I went on an anti-candida diet 2 years ago and it worked, the results were pretty noticeable.

I've tried no sugar no dairy recently and there wasn't a noticeable effect. Also I used to have skin fungal infections and I don't anymore. I'd expect those to still be persistent if it was a fungal source.

I don't think my problems are the same now as they were then, so I don't believe the same solution will work.

I don't think garlic is strong enough to trigger a herx reaction or I should have experienced one from the absurdly high amounts of monolaurin, caprylic acid and coconut oil I was ingesting, or the oregano and thyme oil I'm taking now.

Also thought I'd mention since I saw you posting about white rice. When I did my 2-3 month anti-candida diet I was on undecylenic acid from thorne research + 3000mg vitamin C daily and I pretty much ate only white rice, tuna and mayo and still had outstanding results. Idk if things would have been different without the rice, but my skin inflammation was gone within the first 3 weeks. After that I regained a lot of food tolerances.

Then I re-introduced sugar in the form of V8 splash and orange juice figuring they would be 'natural' and over the next few months I lost rice and orange juice.

When I say potato gives me issues, I mean my digestion slows to a crawl and I slowly digest it with gas and diarrhea and pain that's nearly intolerable. Yeah, IBD symptoms.

 

[WingedVictory]

I think a lot of this is about perspective and getting facts straight, and I claim to be no expert.

Well yea, my concern with fasting wasn't so much that it would effect your weight gain goals, because I figured you can make up for calorie deficits in a small eating window. Your bodies going the whole day without nutrients to boost the immune system and perform bodily functions which is not good if you're potentially dealing with systemic infection from overgrowth and leaky gut. The other concern with fasting is that it may encourage you to consume a large amount of carbs in one sitting allowing bad yeast/bacteria to eat what you don't absorb in time.

I think our actual immune system cells only fight candida when it gets in the blood stream. I could be wrong and would welcome others input. Whereas candida overgrowth starts in our intestines, so it's the job of good bacteria/yeast to keep its numbers reduced. Many health researchers believe our immune system is partly comprised of our gut biome because it influences (postbiotics, immune-signaling) so many aspects of our body. A strong immune system is both having a balanced gut biome and giving them the prebiotics they need and giving our body the nutrients it needs to constantly heal the gut and detox.

If you had effective results with a candida diet 2 years ago then it sounds very likely that you still struggle with systemic overgrowth. Systemic meaning candida is overgrown, leaking from the gut into the bloodstream going to different parts of the body. My understanding so far is that this is something that we always have to be watchful of keeping at bay since candida doesn't completely go away. It's part of a healthy gut biome actually.

I think your results with the candida diet are more attributed to the undecylenic acid. From a quick google it looks like an antifungal. I think what you can take from that experience and regaining food tolerances is that fungal and bacterial overgrowths cause leaky gut. Certain foods leaking into the bloodstream creates food sensitivity symptoms.

The potatoes being an issue to me is because they take longer to digest and break down to glucose. If you can't tolerate them I would associate that with extreme dysbiosis higher up in your small intestine.

I wouldn't expect going no sugar or no dairy to reduce their population since they're said to have incredible survival skills. Your weight gain issues even make me think they're causing leaky gut (possibly along with other foods) and they're robbing you of a lot of your nutrition - whether they're stealing it or causing diarrhea. I've read when in fungal form they can root themselves into organs and suck the nutrients out of you. From my understanding diarrhea is not a natural response to a food. It's a sign of bacterial/fungal issues or a lack of bulking fiber in your diet. I don't think it's effective to try to starve the yeast back into normal proportions. I believe building our guts with a diverse probitic and prebiotic supplementation may be the only way to kill them off and crowd them out with good bacteria. In addition the postbiotic compounds the probitics produce should make the body/mind feel and function better.

When your gut flora is balanced and dysbiosis is corrected leaky gut should be able to heal and one should be able to safely consume a moderate carb diet again. Food sensitivities would also no longer be an issue. Although most will have to be mindful of not over-carbing frequently because of the chance of recurrence. Long-term supplementation with probiotics or fermented foods will probably be necessary. Even then I would be wary of home-made stuff because of the yeast factor.

Wouldn't it be sad if most digestive autoimmune suffers don't really have autoimmunity? That autoimmunity isn't even real. That all this is because of dsybiosis and bacteria/fungal overgrowths? I'm going to blunt. I don't think most of this community is approaching their disease from the right viewpoint. I myself, wasn't for the longest time. I was too obsessive about specific foods causing the leaky gut. I joined this forum to shake things up and get scientific discussions going, but not many people aren't "sciencey" around here like us.

 

[UnXmas]

When I had sepsis from candida, it was cured with antifungals, and no diet changes or probiotics were needed. If you really think you have candida, wouldn't you be trying to get a doctor to prescribe you antifungals? Or testing you for candida so you know if you have it?

 

[WingedVictory]

Antifungals will definitely help, but that alone is leaving yourself open to recurrence of overgrowth. To me, they scream, band-aid solution. Just like immunosuppressants and certain surgical procedures. Meaning it doesn't resolve the root of the problem.

Not everyone has health insurance, UnXmas. Those tests out of pocket are pricey and frankly some of us have been let down to the point where we struggle to trust any sort of health professional. Nowadays, its not the guy dressed in all black hooded clothes you have to worry about it. It's the guy wearing a business suit carrying a briefcase or the one with the clipboard and lab coat lying through their teeth.

Most people have candida albicans in their gut - it's natural. I'd venture to say many autoimmune disease sufferers have varying degrees of some sort of systemic overgrowth and symptoms and if not treated properly could very well develop sepsis like you did. Even myself right now have self diagnosed symptoms of it. Look at it as a spectrum not binary (you either have it or you dont).

And you do realize that many "real" doctors don't even acknowledge systemic candida overgrowth, leaky gut, and food sensitivities. I wonder why...if you think about it there's likely more money to be made in the long run from not curing it. Not educating disease sufferers with the truth to me...is just another form of oppression.

 

[UnXmas]

Doctors here in the UK are under huge pressure from the government to minimise the amount spent on treating patients. The government needs people as healthy as possible, so any financial motivation here should be the opposite to what you describe. Yet the recognition of the conditions you mention, and the treatments recommended, are the same here as in the US. How do you explain that? I'm genuinely asking; I see this argument about doctors keeping people sicker in order to profit often on this forum, but no one's ever answered this question.

Candida is recognised both here and in the US, doctors diagnose it and treat it. People are very unlikely to develop a serious candida infection without certain risk factors. The infection I had was life threatening, it wasn't anything to do with untreated autoimmune disease. Serious infections are routinely cured without diet or probiotics, so even if there was a much milder form of candida such as that which you're talking about, why would it need these measures when serious infections don't?

 

[InstantCoffee]

I think you're looking too hard at evidence to support a theory rather than looking at theories that best fit the evidence.

I likely had fungal problems and dysbiosis in the past, but what I'm experiencing now it very different.

Regardless the thyme + oregano oil should kill it off, it's powerful and anti fungal, viral and bacterial. I can worry about rebuilding my gut flora which is probably already in tatters after I get rid of the harmful stuff.

We can't ignore the possibility that candida overgrowth may be created by an antagonistic problem in the gut. In fact we really need to consider that possibility, or there should be more people with candida infection from bad diets. We have millions of people living off twinkies and cola, every one of them should have candida infections if that's the case.

This points to the idea of a predisposition to the infection and so we have to question what it is.

There's evidence that bile salts malfunction in Crohn's. It's possible the poor use of bile is leading to an environment conducive to bacterial and fungal overgrowth.

There's the connection to antibiotics of course.



Interesting development. As of about a week ago I started having bad gas and cramps.

Yesterday I was doing my morning routine of coffee and pills. I put together a glass of water with my oregano + thyme oil, and decided instead of swallowing 7 L-Cysteine pills, why not pour them in the glass and chug?

I broke down the capsules and poured them into the glass. It was terribly acidic and burned, so I ran over and threw some baking soda in it to dilute it, then chugged it. Gas and pain slowly went away throughout the day. I didn't touch coffee the rest of the day.

So I'm wondering if it's something with acidity / coffee causing my current issues since baking soda seemed to help.

 

[WingedVictory]

Evidence from case studies is too specific to certain test conditions, type of specimen, statistical significance, genetics. All that super heavy scientific literature you sift through I think is a bit too detailed and cutting edge.

If I could go back in time for myself...I would have focused my treatment around probiotics/prebiotics and rebuilding a healthy gut biome. If there were any supplements to invest in next I would buy a high dose probiotic and prebiotics to overhaul the gut. The highest dose one I've seen yet is a new brand called Elixa. I heard colostrum is recommended to take with them to help the bacteria stick to the walls of your colon. Also plantain or green banana flour. From there start adding prebiotic rich foods like green bananas, cooled rice/potatoes (once you can tolerate them) to your diet. You will likely have to work through the IBS symptoms as your gut rebalances and heals. Just my advice - something to think about and research before investing. If you do go through with it plan it out thoroughly so you get the most effectiveness out of the probiotic regime. Like in a smoothie with all prebiotics, followed by prebiotic foods throughout the day. One thing to caution is that foods and supplements with fructooligosaccharides like inulin can also feed opportunistic bacteria/yeast therefore some recommend to use resistant starch as the initial form of prebiotic. I don't speak from experience as I'm still waiting on plantain flour and higher dose probiotics. If you can't afford supplements perhaps slowly ramp up some home-made sauerkraut.
http://coolinginflammation.blogspot.com/2014/02/paleo-gut-flora-repair.html

High carb intake doesn't necessarily = SIBO/fungal overgrowth, then crohn's/colitis. Considering we have cultures all throughout the world that thrive on varying macro nutrient proportions without chronic autoimmune digestive diseases. There's ones that are high fat, high carb, or high protein. If your gut microbiome is strong with probiotics then I don't think moderate carb is an issue.

As far as anti-fungals/antibiotics go I don't think they're as effective (or at all) if you don't supplement probiotics/prebiotics to correct dysbiosis and stay low FODMAP. At least until the immune system gets boosted and the gut heals up to better absorb the FODMAPs before opportunistic bacteria can. It's like putting a bucket of water on the roof of a burning building when the fire is fueled from deep inside.

After going on xifaxan my skin breakouts flared up. Which reinforces how important probiotic bacteria are to our immune system. I've never had the condition diagnosed. It could very well be a light case of Hidradenitis Suppurativa like you mention yourself having.

I'm curious how many grams of carbs do you consume in one meal sitting?
Also why do you think it is you get IBD symptoms from potatoes? Do you have issues with other nightshades or do you think it's because starches are slower to digest and bad bacteria/yeast get at them? I recently read about how tomatoes can "rev up" the immune system.

Do you have any regular sources of soluble fiber in your diet to feed bacteria? I know you mentioned psyllum husks but it doesn't seem like a consistent thing and you don't seem to eat fruit or vegetables.

Coffee/caffeine is a known irritant to the gut - especially on an empty stomach. I've thought it gave me the runs at one point. Maybe my stomach can tolerate it better now from healing. I only have a cup rarely.

I like how you have a personal blog about your research and journey to become healthier. Here's another health focused blog from a guy that does a lot with probiotic experimentation. He's tells it like it is and doesn't really censor his true beliefs about society, the media, medical industry/big pharma, and health related issues.

 

[josemadrid]

Coffee and fats increase stomach acid secretion. Low sodium decrease it. You should not have problems if you were low sodium with coffee but if not you can have pain due to coffee.

Some molecules, to avoid oxidation, are mixed with an acid stabilizer. My lab creatine for example comes loaded with some tartaric acid that makes my stomach cry until I discover that.

If you are heavy on supplementation take that in account.

 

[InstantCoffee]

I've never really noticed any kind of positive results from probiotic supplementation. I've gone from moderate, long-term doses to taking an entire bottle in a few days.

I always have problems with my sauerkraut getting moldy despite my best efforts.

I don't think nightshades are related to the problem I have with potatoes. Although I can't have peppers I could have tomatoes and nightshade based seasonings long after, I can still have cayenne and cumin. Idk if tomatoes are safe now or not I haven't eaten them in months.

Yeah coffee has always been safe up until these last two weeks, so I think black coffee on a fast is just a non-option for me. I'm wondering if it may have been a silent antagonist for longer though. The hydradenitis inflammation on my face is seeing some improvement now, I'm not sure if it was already improving or just in the past couple days, I've had a hydracolloid bandage over it since saturday. The inflammed area under the skin has reduced significantly, although it's still filling with fluids.

I cheated on my fast yesterday, without the appetite suppressant from caffeine and the workload of my job, plus I think I under ate the night before, I was completely famished come lunch time and drove to the store for a quick fix with some prosciutto and cheese.

Today marks 1 week on the seratonin-dopamine therapy which means change in dose scheduling.

Doing some reading on resistant starch and found this interesting article:
https://mrheisenbug.wordpress.com/2013/12/06/resistant-starch-case-closed-not-so-fast/

Basically it suggests that resistant starch feeds mostly bifido bacteria, but bifido bacteria are very low on the list of butyrate producing gut flora, and butyrate is one of the most important healing / protective byproducts of feeding healthy gut bacteria.

Clostridia / fermicutes are much higher butyrate producers, and most likely to be starved by the kind of low-carb dieting many Crohn's patients do to control symptoms.

https://mrheisenbug.wordpress.com/2...d-allergies-excellent-news-silly-conclusions/

 

[WingedVictory]

I would much prefer fermented foods to buying probiotics since they offer more variety of probiotic strains and are more economical. I just think that fermented foods are much too potent for many of us trying to heal leaky gut. I think if they get into the bloodstream they can amplify the immune response and create more inflammation. Potentially even perpetuate systemic overgrowths.

I've yet to make sauerkraut. I bought a few fido jars to do it. They supposedly help seal out oxygen and I think the rubber seals allow the jar to burp out carbon dioxide. After how I reacted to the milk kefir I'm a bit more hesitant of fermented foods. I guess mold issues are mostly caused by too much oxygen getting in or not enough brine.

Have you considering making bone broth a mainstay in your diet? In the last 2+ weeks I think it has helped me heal to the point of being able to tolerate high salicylate foods again. I assume the more I heal the more foods I can tolerate without skin issues. After reading the second blog post you linked I think food sensitivities also have to do with feeding the right bacteria (Clostridia / fermicutes) to prevent an immune response. Or how about a solid dedication to L-glutamine and beef gelatin? It seems like you tried it but fell off the wagon because you didn't think it was working.

That blog on prebiotic analysis and butyrate production is interesting, but he doesn't seem think there are any conclusions to draw as they're just two isolated cases. I think the point he's driving home is to not hone in on one specific form of prebiotics to feed probiotics. I was thinking that myself this morning trying to find foods to balance things out. Like ones with pectin and inulin. Even certain components of meats feed certain types of probiotics. I admittedly still know very little on probiotics. So I guess autoimmune sufferers should feed their Clostridia / fermicutes? All this definately warrants further investigation. Thanks for the blog link.

You never answered my question on whether you carb-load in one meal sitting? That could be contributing to bad bacteria/yeast overgrowth.

And the one on soluble fiber intake. Any consistent sources of inulin, pectin, or resistant starch in your diet to feed probiotics? As many of us are constantly changing our diets to reduce inflammation, this also constantly shifts gut flora balance.

 

[InstantCoffee]

The few times I made sauerkraut I tolerated it well. I made it once and ate it after about a week, kept it in the fridge for about a month.

More recently I had a batch at about 2-3 weeks but after I took some out and ate it I guess it needs to be sealed and refrigerated immediately, I thought maybe if I left the stuff I didn't touch in the brine it would be alright but I think too much surfaced and caused it to spoil.

I am worried about the lead and possibility of MAP in beef products, so I'm not sure if I want to commit to that route. I've considered chicken bone broth but they don't sell chicken bones at the store, I'd have to buy a chicken and cook it, then strip it down to the bones, just not something I often have time for.

Some of the commenters on the blog posts are interesting, one is on an almost entirely fruit based diet now. I'm not sure what kind of condition he is treating though.

http://freetheanimal.com/wp-content/uploads/2013/08/Resistant-Starch-in-Foods.pdf

Actually the oat-flour based cakes I've been making are probably helpful. Oats have resistant starch, I'm not sure if they considered uncooked vs. cooked as in soaked in water and boiled, or if there's a difference, since I'm not soaking them, just grinding them into a powder and mixing them with eggs, butter and a sweetener.

I'm considering trying some cooking with plantains now.

My typical meal on IF I get home and have a glass of pomegranate juice with my l-glutamine and pills, then have my meat + fats followed by something with oats and maple syrup for sweetener. I don't put a particular focus on my carbohydrates. It's usually about 1-1.5 cups of oats, 1 cup pom juice, 2 tbsp maple syrup.

I tried adding my saccharomyces moulardii into my oats to soak overnight and it seems to be messing up my stomach. Guess that was a failed experiment.

I worry about prebiotics because many report gastric distress with intake of resistant starch, FOS and inulin, mostly in the form of gas. It seems like everything else, beneficial in moderation.

 

[josemadrid]

I cheated on my fast yesterday, without the appetite suppressant from caffeine and the workload of my job, plus I think I under ate the night before, I was completely famished come lunch time and drove to the store for a quick fix with some prosciutto and cheese.

hunger in a fast not a good sign to control inflammation.

This means your cells are not shutted down and are still taking sugar or tryglycerides at high rate. I think a lot of your heath problems could be related to an overexpresion of some celular pathways that makes your a fat and sugar burning machine, with a very difficult time trying to gaining weight.

When your metabolism is shutted down you feel more stupid, more slow and with a bit of difficult breathing. You hearth pumps harder due to the increase of catecholamines production but you have a hard time doing normal things.

About the bacteria, is pretty clear in the research that the gut bacteria is implicated in the autoimmune response, but this not means that the different bacteria is the origin of the autoimmune response BUT the cellular pathways of the immune system of the patient that interacts different with the normal gut bacteria.

This a very important point because the celullar pathways of patients of arthritis, Crohn's or other autoimmune diseases is not the same as a normal person. The same bacteria can act different in a Crohn's patient that in a normal person.

Also there are a lots of autoinmune diseases that do not involve gut bacteria.

 

[InstantCoffee]

Coffee wasn't the issue. I bought a new multi-vitamin on Sunday and it had MSM in it. Why? I have no idea why.

I've been taking it every day at the same time I typically drink coffee and it causes the gas / bloating and feelings similar to wheat intolerance.

Funny cause others said it helped their Crohn's.

I've been experimenting a bit with my diet and I seem to be quite flexible. I at Amy's gluten free mac and cheese which is made with rice flour and had no ill effect. I've also been foolishly pigging out on chocolate, maple syrup, and other stuff.

I bought plantains to try this weekend and some nitrate free hotdogs. Going to have hot dogs and fries hopefully.

In spite of the MSM wreaking havoc on my gut this entire week I've continued to put on weight.

 

[WingedVictory]

http://drbganimalpharm.blogspot.com/2014/10/dont-take-raw-potato-starch-rps.html
I think you will find this blog and post enlightening and give you better direction.

If you can't afford to have a stool test to diagnose what type of organism is causing dysbiosis/SIBO/SIFO > Leaky gut > systemic infection then the best approach is probably a diet like below.

From what I can gather the best approach for most with autoimmune diseases is going to be SCD, various high potency broad spectrum probiotics/fermented foods, diversity of lots of no/low starch of veggies, low starch fruit (under 20g fructose per day).

From looking at your diet I would drop the oats and juice, in fact juice is just plain bad, better to eat a piece of fruit and drink water. Your diet is severely lacking in vegetables/fruit and thus your probiotics get very little prebiotic fiber to feed on. You can either buy pectin, inulin and other prebiotic supplements or focus mostly on eating a variety of fruits/vegetables to give your good bacteria the fiber they desperately need to restore order in the gut. Inulin and pectin likely will be the main focus. In her other blog posts she goes over other prebiotics to focus on like gums and seeds and such.

If you suspect you have an overgrowth like Klebsiella (which feeds off starch and resistant starches!). Other pathogens in the small intestine may favor RS/starch too. I think my lower back pain is a sign of Ankylosing Spondylitis, which is linked with Crohn's and associated from Klebsiella. I need to research this further.

Your overgrowth could be anything. I think my focus on candida was a bit shortsighted because of my experience with the antibiotics, thinking it was a yeast specifically. Focus less on some rare transmitted pathogen like MAP and more on those that are commonly inherited at birth or from our the environment during our adolescent upbringing. Relate chronic conditions and symptoms of your family members to what type of pathogen you think you might have based on your symptoms.

I'd test out starch and resistant starch to see how you react. Many people with SIBO/SIFO have to hold off on RS until their dysbiosis is corrected. And I just bought a bunch of starchy vegetables and plantain flour, sigh.

 

[InstantCoffee]

http://drbganimalpharm.blogspot.com/2014/10/dont-take-raw-potato-starch-rps.html
I think you will find this blog and post enlightening and give you better direction.

If you can't afford to have a stool test to diagnose what type of organism is causing dysbiosis/SIBO/SIFO > Leaky gut > systemic infection then the best approach is probably a diet like below.

From what I can gather the best approach for most with autoimmune diseases is going to be SCD, various high potency broad spectrum probiotics/fermented foods, diversity of lots of no/low starch of veggies, low starch fruit (under 20g fructose per day).

From looking at your diet I would drop the oats and juice, in fact juice is just plain bad, better to eat a piece of fruit and drink water. Your diet is severely lacking in vegetables/fruit and thus your probiotics get very little prebiotic fiber to feed on. You can either buy pectin, inulin and other prebiotic supplements or focus mostly on eating a variety of fruits/vegetables to give your good bacteria the fiber they desperately need to restore order in the gut. Inulin and pectin likely will be the main focus. In her other blog posts she goes over other prebiotics to focus on like gums and seeds and such.

If you suspect you have an overgrowth like Klebsiella (which feeds off starch and resistant starches!). Other pathogens in the small intestine may favor RS/starch too. I think my lower back pain is a sign of Ankylosing Spondylitis, which is linked with Crohn's and associated from Klebsiella. I need to research this further.

Your overgrowth could be anything. I think my focus on candida was a bit shortsighted because of my experience with the antibiotics, thinking it was a yeast specifically. Focus less on some rare transmitted pathogen like MAP and more on those that are commonly inherited at birth or from our the environment during our adolescent upbringing. Relate chronic conditions and symptoms of your family members to what type of pathogen you think you might have based on your symptoms.

I'd test out starch and resistant starch to see how you react. Many people with SIBO/SIFO have to hold off on RS until their dysbiosis is corrected. And I just bought a bunch of starchy vegetables and plantain flour, sigh.

That's the thing though, my gut does fine with oats, and oats are high in RS.

My symptoms of late seem to be tied to the MSM I was taking and probably the chocolate I shouldn't have been eating, but they were VERY minor compared to what chocolate used to do to me (~30 minutes in the bathroom passing bile.)

Now I just get gassy. I don't plan on making chocolate a dietary staple like I did in the past, that's what got me here.

See the past year I actually went on a sort of detox diet. I was eating meat with coconut oil and seasonings (garlic, cayenne, paprike mostly) and having milk and honey which is debatable SCD legal, some say it can't feed harmful bacteria, and supplementing apple cider vinegar and my symptoms continued to get worse.

I started reacting and having persistent diarrhea and lethargy and I didn't know why. I cut out the steak, seasonings and coconut oil because the time-related formula suggested that as the cause and things got better. Eventually honey started triggering reactions as well and I had to cut that too.

I wasn't left with much and I started eating plain meat with only butter so it doesn't stick to the pan, eggs, the I incorporated some probiotics in the form of miso soup. I don't really know if that helped.

I also tried some ayurvedic treatments, taking lauki gourd and the pom juice because they use pomegranate for diarrhea. It's been the ONLY fruit juice I don't have adverse reaction to.

I cut the lauki because it just wasn't appetising enough, I kept letting them go bad but I started making chicken miso soup with kayle and carrots and was tolerating that well.

It's only been since my recent therapy I've seen significant improvement but there's been so many facets that I can't really say which helped.

The fasting seemed to give my bowels a surge of healing, I'm not sure how much the GPLC contributed. The DHEA seemed to help my mental state.

The amino acid modulation may very well be helping though. I'm debating on picking up the L-Dopa because it seemed instrumental in the effectiveness but I'm reading some sketchy stuff about how you quickly build a tolerance to L-dopa and it can have adverse effects at high doses.

Overall I'm in a -good- place right now and I'm going to stay the course with some tweaks here and there. I'm hoping to get back to intermittent fast but I think due to my current therapy I'm going to stick with normal meals and try IF here and there on my days with low physical labor.

My stomach simply wasn't dealing well with the huge meals at 5-8pm.

My weight went from 124.5 to 128 this week.

 

[WingedVictory]

Oh, by all means keep doing what you think is working. I don't know what's more important to you - gaining weight or figuring out the cause of your autoimmunity.

A lot of times I see on this forum the terms "trigger foods" and "flare" and I think they're misnomers used incorrectly. It's not about the food itself, but instead the way it manipulates our gut flora.

If you experience a "flare" from a "trigger food" it's not so much the food itself is necessarily directly causing autoimmunity and inflammation, but rather the overgrowth of pathogenic bacteria that feed on a component (starches and fibers) of that food. It's more about the continual release of destructive postbiotic compounds by pathogens that negatively impact the body and derail it towards the development of autoimmune diseases.

http://drbganimalpharm.blogspot.com/2015/03/peering-into-four-ubiome-stool-analyses.html

For instance there are certain bacteria that excrete toxins that are likely associated with autoimmune disease symptoms. If you feed them their preferred prebiotic they will then give you a "flare". Like from the link above they talk about certain strains of clostridium that are associated with this behavior. They like to eat starches and RS's. Alternatively there is a strain of clostridum (butyricum) in probiotics, that as you already know, produces butyrate - which helps fight inflammation. So basically both pathogenic and probiotic organisms are competing for the same food sources. Funny how a food can be both good or bad for you depending on which one "gets the worm first" and proliferates in the gut.

I would heavily focus on researching and refining the prebiotics in your diet and getting more beneficial probiotics from supplements or fermented foods. From reading these 3 blogs this past week I think this forum needs a subforum dedicated to microbiology/gut microbiome talking about probiotics, prebiotics, fibers, and postbiotics as an emphasis for treatment. I think this is the fundamental way for treating autoimmunity and psychological disorders of all kinds. I'm guessing in the next decade or so that the way we treat chronic illness will get completely flipped on its head by studies like the Human Microbiome Project. Because right now physicians are mostly just treating the symptoms.

Seed. Feed. Weed. Sounds like a better life mantra than live, laugh, love. haha.

A lot of those supplements seem to relate to messing with hormones to try to relieve depression and other negative cognitive impairments. I think that is an indirect approach to solving the problem. That's because I think both mental and physical ailments all stem from dysbiosis. Better to manipulate the populations of the gut flora. Decrease the pathogenic ones that cause negative mood/cognitive symptoms/digestive inflammation, etc and instead increase the probiotic ones that keep the pathogenic ones in check to increase serotonin/dopamine production.

There's a commenter on that blog by someone called, Ashwin who talks about the ayurvedic medicine stuff like mixing all sorts of antimicrobial spices like turmeric, ginger, etc to make a special tea. That's an interesting aspect too - could be effective in treating SIBO/SIFO.

Some of those foods sound pretty exotic and I thought I was strange for buying plantains and yuccas the other day, heh.

 

[InstantCoffee]

Plantains are a no go. 24 hours later I'm still running to the toilet.

 

[UnXmas]

How do you know it's the plantains? Do you never just get symptoms unrelated to food?

 

[InstantCoffee]

How do you know it's the plantains? Do you never just get symptoms unrelated to food?

Never, in my experience, it's always tied to some trigger that upsets the equilibrium. Things were going great until the plantain. It's also possible it's the garlic but I've been cooking with garlic on and off recently and not had a response like this, but I did use a lot on the plantain fries I made.

Given then high amount of resistant starch it's not really surprising plantains might have this effect. Either by overfeeding good bacteria and creating a lot of waste product, or by feeding bad bacteria RS can cause distress.

I'll try fructooligosaccharides next time I get a chance. They seem more beneficial to crohn's.

@WingedVictory if neurotransmitters were merely a mask for the problem, it's still weird to me that some people on the amino-acid therapy were able to eliminate their food sensitivities and go back to having regular bowel movements while on it.
If it was indeed SIBO causing the problems, then there's no way that this therapy should be able to work around it.

 

[UnXmas]

So you have zero symptoms unless you eat something wrong? Why not just avoid the things you can't tolerate and have no symptoms all the time?

 

[InstantCoffee]

So you have zero symptoms unless you eat something wrong? Why not just avoid the things you can't tolerate and have no symptoms all the time?

It's hard to explain but if I over-limit my diet it seems to starve off the healthy bacteria and eventually it catches up to me.

On top of that a strict 'safe' diet for me is not sustainable - it's too satiating so I can't eat enough calories, it's not diverse enough so it's not healthy. My safe diet is mostly meats and fats with very low carbs.

I've tried it, and I just end up losing weight because I can't eat enough calories to keep up.

 

[UnXmas]

I understand - well, maybe not the bacteria part, but I do know what it's like trying to find balances. Although I never get to a point of having no symptoms, the best diet for my digestive system doesn't have enough calories to stop me losing weight and would have virtually no fruit or vegetables.

 

[WingedVictory]

As I've said before. I think the fact that you have trouble with starches is a sign of pathogenic overgrowth - likely a specific species that thrives on them and has dominant colonies in your small intestine. Even myself. I don't usually get diarrhea, but I get belching, flatulence, and stomach rumbles from eating large amounts of carbs, more specifically starches. Cold boiled green bananas and a tablespoon of potato starch made my stomach rumble for hours the other day (Klebsiella?). That is with taking into account I had 5 days of antibiotics which probably got rid of more good bacteria than the bad.

I would definitely stick to simple carbs like fruit (preferably those high in soluble fibers) for now and eat them first on an empty stomach so they get absorbed better. Work on healing leaky gut. I think if you do bone broth or l-glutamine with gelatin you will make progress healing the begging portions of your small intestine to better help you absorb your carbs before bad bacteria do. It has without question helped me get rid of my salicylate intolerance. In turn this will help reduce their population and given probiotics a better efficacy. Keep introducing foods and spices with antimicrobial properties.

You likely have severe leaky gut if you can't keep a steady weight. In fact it could be the toxic postbiotics from pathogenic overgrowth that is causing you diarrhea...that or die off of your probiotic flora. As a kid I had bad diarrhea from binging on large amounts of sugar/starch. Bacteremia is the term for when foreign microorganisms get in the blood. So taking large doses of fermented foods could make matters worse - especially give my experiences with milk kefir. Go for the kraut or kimchi. You might have to just bite the bullet and at some point give VSl3, Elixa, or other megadose probiotics a chance. At this point I feel my main options are either probiotics/prebiotics/antimicrobials in some form...or a fecal matter transplant. Frankly, I'm not that interested in the former.

In cases of severe leaky gut I think the best way may be to treat the dysbiosis through rebalancing the flora in the colon first. That's where enteric coated high dose probiotics come into play. I hope to soon give you some feedback on my experiences with high dose probiotics. Today I took 10 capsules of primal defense as way to see if I can handle higher dosages. At this rate I will go through a bottle quickly. I don't intend to pressure you to waste money unnecessarily. With some commitment you may be able to turn things around by slowly ramping up the fermented foods and eating the bionic soluble fiber they need to thrive and re-establish a defensive barrier against pathogens lining the mucosa/intestinal barrier. Longum, Roseburia, akkermansia muciniphilla,and plantarum are some species that I read about on the Animal Farm blog that are supposed to defend the intestinal lining from opportunistic pathogens. I read a few of them like eating oligiofructose and inulin.

I would put my money on it that the vast majority of this community, if not all, has dysbiosis and leaky gut to varying degrees. It's pretty safe to self-diagnose yourself and believe you have it. There's an endless war raging in our stomachs by trillions of microorganisms. Your job is mostly to supply the beneficial ones with the proper ammunition to win the war. I'm starting to talk in circles so I will report back on my experiences with high dose probiotic supplements. Hopefully I can convince my bullish GI to prescribe me VSL3 - I'm a bit tired of arguing with these baboons.

For weight gain focus why not just increase your fat intake?

 

[InstantCoffee]

I understand - well, maybe not the bacteria part, but I do know what it's like trying to find balances. Although I never get to a point of having no symptoms, the best diet for my digestive system doesn't have enough calories to stop me losing weight and would have virtually no fruit or vegetables.

When I ate a super restrictive diet, eventually it would stop working, but now it seems adding things back into it is also important, I'm finding.

It's as much about what you take out as what you put back in.

As I've said before. I think the fact that you have trouble with starches is a sign of pathogenic overgrowth - likely a specific species that thrives on them and has dominant colonies in your small intestine. Even myself. I don't usually get diarrhea, but I get belching, flatulence, and stomach rumbles from eating large amounts of carbs, more specifically starches. Cold boiled green bananas and a tablespoon of potato starch made my stomach rumble for hours the other day (Klebsiella?). That is with taking into account I had 5 days of antibiotics which probably got rid of more good bacteria than the bad.

I would definitely stick to simple carbs like fruit (preferably those high in soluble fibers) for now and eat them first on an empty stomach so they get absorbed better. Work on healing leaky gut. I think if you do bone broth or l-glutamine with gelatin you will make progress healing the begging portions of your small intestine to better help you absorb your carbs before bad bacteria do. It has without question helped me get rid of my salicylate intolerance. In turn this will help reduce their population and given probiotics a better efficacy. Keep introducing foods and spices with antimicrobial properties.

You likely have severe leaky gut if you can't keep a steady weight. In fact it could be the toxic postbiotics from pathogenic overgrowth that is causing you diarrhea...that or die off of your probiotic flora. As a kid I had bad diarrhea from binging on large amounts of sugar/starch. Bacteremia is the term for when foreign microorganisms get in the blood. So taking large doses of fermented foods could make matters worse - especially give my experiences with milk kefir. Go for the kraut or kimchi. You might have to just bite the bullet and at some point give VSl3, Elixa, or other megadose probiotics a chance. At this point I feel my main options are either probiotics/prebiotics/antimicrobials in some form...or a fecal matter transplant. Frankly, I'm not that interested in the former.

In cases of severe leaky gut I think the best way may be to treat the dysbiosis through rebalancing the flora in the colon first. That's where enteric coated high dose probiotics come into play. I hope to soon give you some feedback on my experiences with high dose probiotics. Today I took 10 capsules of primal defense as way to see if I can handle higher dosages. At this rate I will go through a bottle quickly. I don't intend to pressure you to waste money unnecessarily. With some commitment you may be able to turn things around by slowly ramping up the fermented foods and eating the bionic soluble fiber they need to thrive and re-establish a defensive barrier against pathogens lining the mucosa/intestinal barrier. Longum, Roseburia, akkermansia muciniphilla,and plantarum are some species that I read about on the Animal Farm blog that are supposed to defend the intestinal lining from opportunistic pathogens. I read a few of them like eating oligiofructose and inulin.

I would put my money on it that the vast majority of this community, if not all, has dysbiosis and leaky gut to varying degrees. It's pretty safe to self-diagnose yourself and believe you have it. There's an endless war raging in our stomachs by trillions of microorganisms. Your job is mostly to supply the beneficial ones with the proper ammunition to win the war. I'm starting to talk in circles so I will report back on my experiences with high dose probiotic supplements. Hopefully I can convince my bullish GI to prescribe me VSL3 - I'm a bit tired of arguing with these baboons.

For weight gain focus why not just increase your fat intake?

There's too much hit or miss with probiotics I feel. If you don't know what strains you need, or which ones are overpopulated, it's very hard to know what supplements to buy, not only that but what kind of coatings you need to deliver them where, what kind of diet you need to support them once you get them there etc.

I'm not ready to commit the kind of money or time into it until I know more specifics and can take a targeted approach, because I've already tried probiotics in the past and never experienced any benefits from it. It simply takes so long for them to take hold that it's not easy to know if what you're doing actually works or not.

I'm starting to think my diarrhea this weekend could be the new acetyl l-cystine I bought, because it should have passed by now if it was just the plantain.

The l-cystine I had before was not acetyl and thus harder to absorb, I likely wasn't getting the effect of it. The doctor who wrote the therapy says himself the cystine pills will cause liver detoxification and gastric upset. They usually taper the dose way down and add it gradually when this happens. As I've tapered it down the diarrhea is lessening.

Unfortunately I had a hiccup with some bad decision making regarding dosing of the 5-HTP.

The dosing this week was 1000mg tyrosine 300mg 5-htp before bed. After some thinking about how it works and doing well on 300 I decided to try 400 and it kept me awake until midnight, but otherwise I felt fine.

I repeated this dose this morning. At first I was experiencing severe depression, but I thought it might just be personal life issues (probably not).
Suddenly something hit me and I had an anxiety attack. My heart was racing and I felt tingling in my face and hands. I rushed to get my tyrosine to offset it, it calmed down over the next hour and I felt very normal the rest of the day.

After more reading it looks like Tyrosine always needs to be taken in increasing doses to offset the 5-HTP.

So I'm reviewing some of the dosing other patients had, I'm dialing back my l-cysteine and starting the L-dopa today which was the most important part for the patient that had the best result. He was able to almost fully reverse his food intolerance.

The l-cysteine thing make further sense after reading the description. "Sulfur-containing amino acid." So far all sulfur stuff has messed with me. It's also possible it just reacts differently, the original treatment calls for just l-cysteine, I'm going to cut out the acetylcysteine and see if I improve, then go back to regular l-cysteine instead if it does. I worry about discontinuing it entirely. I'm not sure the exact purpose of it, but l-cystine is protective of the liver and kidneys, if it is in fact to protect against the toxicity of this therapy, I don't want to discontinue it.

Will have to wait until my next paycheck, maybe longer. I just got him with car taxes and I need to have some in the bank for car payment and student loan.

I wish this wasn't so expensive, or I had a better job.

I'm going to start reviewing my dosing and reactions to them. After thoroughly reading other patients it seems that dosing goes something like this:

The primary drug contains 1500mg tyrosine, 150mg 5-htp + cofactors, so 5-htp is never dosed independent of the 1500mg tyrosine.

Doses range from 2 pills to 6 pills a day depending o patient, typically at 2 in the morning 2 at night.

The other medication contains cystine and folate, a gradual increase in this over time is the recurring trend.

L-Dopa seems to be added after week 2, too much can cause adverse effects, so erring on the side of too little and building up seems safest. Most take 1-3 a day, no more, but dosing is different because theirs is 40% purity, mine only 15%. I have to check the mg and get a breakdown for what I need to equalize dosing.

6/30/15
So this morning I took:
1500 mg acetyl L-tyrosine
200mg 5-htp
2x L-dopa pills 333mg at 15%
1x acetyl l-cystine
3x multi vitamin

I had some of the 'rush' effect but no full on anxiety attack. Frequent bathroom trips through the morning.

12:00 dose:
1500mg acetyl l-tyrosine
100mg 5-htp
1x l-dopa
1x multi vitamin

I had a single partially formed BM after some urgency increase followed by a relaxing of symptoms. Either tapering dose or not having l-cystine seems to have helped.

I forgot to take my calcium and magnesium unfortunately. I will take it before bed.

Last night before bed:
900mg acetyl l-tyrosine
100mg 5-htp
2x multi
calcium + magnesium.
vit A + K

Stomach settled through the night although I was gassy. I tried eating some nitrate free hotdogs and it seemed to work out alright.

7/1/15
AM dose:
900mg A-LT
100mg 5-htp
3x multi
1000mg vit c
1x calcium capsule + 2x magnesium capsule

So far so good, mood and digestion seem stable. Maybe 1500+ mg tyrosine is too high on the A-LT, the acetyl may be more bioavailable and higher doses may just be creating a stronger reaction. Either that or it's the L-dopa that had me running to the bathroom all yesterday which also contains maltodextrin which I wish I'd seen. Oh well I have a shipment of new stuff coming in today with some bulk A-LT and 5-htp powder so I can alter dosing a bit more exact.



12:00 dose

1200mg ALT
100mg 5-htp
1000mg vit C
600mg l-lysine
1x l-dopa capsule

Ugh I just saw the l-dopa has rice flour too, that could be causing problems. Oh well I'll try it one more time and see what happens. My new supply from NOW arrives tonight. If symptoms start after this dose I'll know it's the l-dopa.

 

[josemadrid]

this could interest you

http://suppversity.blogspot.de/2013/01/oleic-acid-modulates-gut-bacteria-and.html

Oleic Acid Modulates Gut Bacteria and Induces Weight Loss on HFD Diet

on your recent regime, vitamin c is probably making you going to the bathroom.

 

[InstantCoffee]

this could interest you

Oleic Acid Modulates Gut Bacteria and Induces Weight Loss on HFD Diet

on your recent regime, vitamin c is probably making you going to the bathroom.

I'll check it out.

Definitely is the something in the L-Dopa supplemenet. I can and have taken super high doses of vitamin C with no repercussions. (over 3000-6000 mg a day.)

Within 45 minutes of taking my L-dopa pill I was in the bathroom. It has maltodextrin and rice flour, both bad for me, so not really surprised at all. I was feeling good up until taking it. I'll trash it and try again with the cleaner stuff I get today.

This study is interesting. I thought overgrowth of bacteroidetes was linked to obesity while firmicutes was the opposite?

Nevermind just read the opposite. BUT firmicutes is likely more important for Crohn's because it is the top butyric acid producer. It's likely we would want to avoid oleic acid because they seem to be in competition with one another. I could be wrong.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1856500/
"The metagenomic approach allowed us to detect a reduced complexity of the bacterial phylum Firmicutes as a signature of the faecal microbiota in patients with CD. It also indicated the presence of new bacterial species."


I've definitely hit something with my current dosing. I feel a profound relaxedness, not really 'calmness' of mind, but like a softness over my body. It's hard to explain. It's like I was chronically 'uncomfortable' up until this point. Not in any kind of pain, but just impossible to feel comfortable, and now it's gone.

It feels like my body is covered in soft blankets. Not numb. Just comfortable and warm...

This is really interesting
http://www.nature.com/nrgastro/journal/v8/n3/fig_tab/nrgastro.2011.3_T2.html

https://mrheisenbug.wordpress.com/2014/03/20/why-resistant-starch-is-probably-not-enough/

This one I think I linked to before has some really hard hitting facts.

While resistant start feeds firmicutes, it also feeds bacteroidetes, and bacteroidetes is likely already way over expressed in Crohn's patients.

The problem with bacteroidetes is when you starve it of fermentable starches it turns to human mucosa to feed!

Might this mucin degradation have something to do with the Bacteroides correlation to inflammatory disease? Maybe:

Another possible mechanism by which members of the Bacteroidetes probably contribute to the pathogenesis of colitis is by the production of mucin- degrading sulphatases. Elevated levels of bacterial mucin- desulphating sulphatases have been reported for patients suffering from active UC. Furthermore, the existence of enzymes that will partially desulphate mucins has been demonstrated for B. thetaiotaomicron, B. fragilis and for Prevotella spp., suggesting that members of the Bacteroidetes could contribute to chronic inflammation by an impairment of the barrier function of the epithelial cell layer.

I'm actually gonna post this elsewhere, I think it's pretty important

 

[InstantCoffee]

Maybe I jumped the gun on this. maybe bacteroidetes feeding on intestinal mucins isn't a bad thing!

Just found this
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3705355/

Polydextrose consumption resulted in a dose-dependent decrease in bacteroides, as well as an increase in lactobacilli and bifidobacteria [42,43].

Intake of a mixture of FOS and inulin has also produced significant reductions in disease severity indices, reduction in pro-inflammatory immune markers, and a reduction in calprotectin, an abundant neutrophil protein found in both plasma and stool that is markedly elevated in patients with inflammatory bowel disease [55].

http://www.nature.com/srep/2015/150319/srep09253/full/srep09253.html

To date, there are no studies that have assessed their mechanism of action and ability to alter mucosal immune responses in the intestine. We characterized the immunomodulatory function of six phytonutrients: anethol, carvacrol, cinnamaldehyde, eugenol, capsicum oleoresin and garlic extract.

Interesting! Carvacrol is in thyme and oregano oil which a guy named Canada Mark on Healingwell has been using to treat his crohn's-colitis with pretty good results.

It's also a strong anti bacterial/viral/fungal

However only eugenol stimulated production of the inner mucus layer, a key mucosal barrier to microbes. The mechanism by which eugenol causes mucus layer thickening likely involves microbial stimulation as analysis of the intestinal microbiota composition showed eugenol treatment led to an increase in abundance of specific families within the Clostridiales order.

Eugenol : It is a colorless to pale yellow oily liquid extracted from certain essential oils especially from clove oil, nutmeg, cinnamon, basil and bay leaf.[1][2][3][4] It is present in concentrations of 80–90% in clove bud oil and at 82–88% in clove leaf oil.[5]

Eugenol is hepatotoxic, meaning it may cause damage to the liver.[19][20] Overdose is possible, causing a wide range of symptoms from blood in the patient's urine, to convulsions, diarrhoea, nausea, unconsciousness, dizziness, or rapid heartbeat.[21] According to a published 1993 report, a 2-year old boy nearly died after taking between 5 and 10 ml.[22] Eugenol is subject to restrictions on its use in perfumery[23] as some people may become sensitised to it, however, the degree to which eugenol can cause an allergic reaction in humans is disputed.[24]

Microbial utilization of intestinal mucins results in degradation of mucin peptides and utilization of the associated O-linked glycans as an important energy source. Consequent to glycan utilization by certain microbes is the production of waste products, including short-chain fatty acids (SCFAs) butyrate, acetate, and propionate23, 24. Butyrate production by microbes has been implicated in a feedback mechanism that is involved in upregulating mucus production by goblet cells in response to mucin utilization, replenishing the utilized mucins and associated glycans25, 26.

Interesting. So maybe the bacteria feeding on the mucins is not a bad thing. Maybe it's actually a good thing and why many Crohn's patients see a benefit from fasting? Fasting forces bacteria to feed on mucins instead of relying on outer sources of food which upregulates SCFA production? Just a theory.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3448089/

Diets rich in complex carbohydrates show less pathogenic species such as Mycobacterium avium subspecies paratuberculosis and Enterobacteriaceae [49] than diets higher in fat or protein [48,50,51,52].

Refined sugars, on the other hand, mediate the overgrowth of opportunistic bacteria like C. difficile [54] and C. perfringens by increasing bile output [55]

And there's what I've been assuming this whole time. Increase of bile output we see in Crohn's disease increases bad bacteria.
I see a dramatic increase in bile output from certain refined sugars, mainly HFCS.
Bile is the chicken, bacteria is the egg.

Other studies conducted in mice have found that high-fat diets rich in safflower oil, an omega-6 polyunsaturated fatty acid (PUFA), reduces the abundance of Bacteroidetes while enriching the populations of Firmicutes, Actinobacteria and Proteobacteria [59,60].

Summary of diet-induced dysbiosis.

Diet Bacteria Altered Effect on Bacteria References
High-fat
Bifidobacteria spp. Decreased (absent) [45]
High-fat and high-sugar
Clostridium innocuum, Catenibacterium mitsuokai and Enterococcus spp. Increased [18]
Bacteroides spp. Decreased [18]

Carbohydrate-reduced
Bacteroidetes Increased [49]

Calorie-restricted
Clostridium coccoides, Lactobacillus spp. and Bifidobacteria spp. Decreased (growth prevented) [48]

Complex carbohydrates
Mycobacterium avium subspecies paratuberculosis and Enterobacteriaceae Decreased [49]
B. longum subspecies longum, B.breve and B. thetaiotaomicron Increased [53]
Refined sugars
C. difficile and C. perfringens Increased [54,55]
Vegetarian
E. coli Decreased [56]
High n-6 PUFA from safflower oil
Bacteroidetes Decreased [59,60]
Firmicutes, Actinobacteria and Proteobacteria Increased [59,60]
δ-Proteobacteria Increased [61]
Animal milk fat
δ-Proteobacteria Increased [62]

 

[InstantCoffee]

I'm doing further research into polydextrose, it's funny because I see positive studies, then this 'skeptical' article
http://www.slate.com/articles/life/food/2009/03/dietary_fibber.html

which basically amounts to "Well it's not fiber so don't call it fiber." but has no claims as to why it's not good for you.

https://www.google.com/url?sa=t&rct...iLqwKFY-nblH6Z-tripx-VA&bvm=bv.96952980,d.cGU

Short-chain fatty acid production—notably that of butyrate, isobutyrate, and acetate—increased with polydextrose ingestion. There were substantial changes in fecal anaerobes after polydextrose intake. Bacteroides species (B. fragilis, B. vulgatus, and B. intermedius) decreased, whereas Lactobacillus and Bifidobacterium species increased.

Conclusion: Polydextrose ingestion had significant dietary fiber–like effects with no laxative problems.

This is EXACTLY what we want. It is however artificial and possibly GMO, take that however you will.

I'm looking at Optimum Nutrition creates a fiber supplement with Polydextrose, Inulin, Psyllium Husks and some other fibers, but has "Digestion Resistant Maltodextrin." I'm not sure how I feel about that.

Update on my therapy:

I believe that my initial good response to fasting and the loss of that benefit was largely that I was also supplementing psyllium husks daily, and previously saw them as just a way to cheat and have sugar.

Now that I understand their prebiotic effects it's likely that there's more to them than that, however due to my medication scheduling I couldn't take it because it can prevent absorption of drugs.

Upon seeing that other patients were taking their drugs twice a day instead of the 3-4x outlined in the study I decided I could try doing the same.

I now take my amino acids at about 5:30 in the morning, then I can have my psyllium husks between 10:00 and lunch time then be ready for my 4:00 dose of amino acids and still have time for more psyllium husks before bed.

I've gradually increased my amino acids from 1000mg tyrosine 100-150mg 5-htp twice a day to 2400mg tyrosine 300mg 5-htp. I'll maintain at 300mg 5-htp and continue to increase tyrosine slowly.
D-mucuna and 1 pill 2x a day seems safe as well.

I'm noticing positive mood enhancing effects, and a very powerful stimulant effect. I've switched to decaf coffee as I no longer feel the need for caffeine. This has me worried about withdrawals from discontinuing the medication similar to caffeine withdrawals.

No anxiety attacks or depression this time around.

I'm not sure what happened sunday. I had oatmeal with milk, butter and maple syrup, then later in the day I had gluten free mac and cheese with tuna and cottage cheese. I went out and was active all day and symptom free until about 4:00 when I got hit with really bad gas. I accidentally let a few slip while hanging out with a girl I'm talking with, I was mortified until she started laughing her ass off.

It seems that I get symptoms now when I don't eat, whereas just a few weeks ago not eating provided no symptoms, I think this suggests a change in my gut flora, which is my goal afterall.

I'll have to make sure I bring a snack of some sort if I plan to be out of the house for a while.

Early experiments with probiotics and prebiotics have been uncomfortable experiences but maybe necessary evils. Very gassy with some irregular bowel habits.

After last Friday's post I went to the store and bought Clove oil and a symbiotic formula of FOS with bifido and lactobacillus probiotics. They seem to trigger gas and some irregularity, I'll stick with it for a while in hopes I 'adjust' to them.

I've decided to move away from carrot juice and just learn to enjoy them raw.

I've been eating large amounts of raw strawberries all week with no observable negative effects. :strawberry:

 

[josemadrid]

This could interest you as mix bacteria with an autoinmune disease , in this case diabetes type I

Scientists propose a model for the role of gut bacteria in the development of autoimmunity for type 1 diabetes - In their latest paper Austin G. Davis-Richardson and Eric W. Triplett write that recent studies in children with a high genetic risk for type 1 diabetes demonstrate significant differences in the gut microbiome between children who develop autoimmunity for the disease and those who remain healthy.
As you would expect, though, the differences in microbiome composition between autoimmune and healthy children are not consistent across all studies because of the strong environmental influences on microbiome composition, particularly diet and geography. Controlling confounding factors of microbiome composition uncovers bacterial associations with disease.
For example, in a human cohort from a single Finnish city where geography is confined, a strong association between one dominant bacterial species, Bacteroides dorei, and type 1 diabetes was discovered (Davis-Richardson et al. Front Microbiol 2014;5:678).
Beyond this, recent DNA methylation analyses suggest that a thorough epigenetic analysis of the gut microbiome may be warranted. These studies suggest a testable model whereby a diet high in fat and gluten and low in resistant starch may be the primary driver of gut dysbiosis. This dysbiosis may cause a lack of butyrate production by gut bacteria, which, in turn, leads to the development of a permeable gut followed by autoimmunity. The bacterial community responsible for these changes in butyrate production may vary around the world, but bacteria of the genus Bacteroides are thought to play a key role.
www.suppversity.com | Davis-Richardson, Austin G., and Eric W. Triplett. "A model for the role of gut bacteria in the development of autoimmunity for type 1 diabetes." Diabetologia (2015): 1-8.

 

[WingedVictory]

If you're going to spend the money to go the antimicrobial route you might want to 'pony up' and get some biofilm disruptiors to go with them. They break up the defensive barriers that pathogens use to protect themselves from antimicrobials. I had a "wellness educator" recommend me serrapeptase (which I just started taking) and I'm going to pick up lactoferrin soon. I haven't seen any results yet, but I need to pick up some antimicrobials to go with the biofilm busters. All I'm taking with it is this high potency candida 9 tonic...which isn't effective as far as I can tell. She recommended Oreganol capsules, Caprylic acid, and some Chinese herb mixtures.

If you decide to try the biofilm disruptors it of course would be optimal to space them out away from your probiotic/prebiotic routine. I'm thinking biofilms + antimicrobials morning and night and probiotics/prebiotics in the afternoon.

It looks like you're moving away from juices to whole foods which I think will benefit you in the long run. Strawberries are noted for being heavy pesticide/dirty dozen they recommend going organic if you can afford it and are concerned with taking in more toxins. Skin breakouts/conditions are a sign of toxic overload, likely mostly from pathogenic overgrowth and their constant toxic assault. I noticed I get a mood boost from doing cardio...which I think comes from all the detoxing from tons of sweating.

That dysbios summary is interesting and would be helpful if you can get a measure of the microorganism populations of your gut specifically. Would allow you to tweak your diet to deprive the type of pathogen overgrowth you have. Although I think many may be adaptive in being able to consume protein or fat if necessary.

I may pick up some psyillum husk on account of your mood/cognitive improvement. Do you take whole or powdered? What's the difference? I kind of wanted to wait on FODMAPs, resistant starch, and prebiotics. I'm a bit conflicted as to whether I should focus on killing off pathogens or feeding probiotic bacteria in hopes they will assist in restoring balance. I'm worried pathogens will eat the prebiotics too. Most practitioners seem to recommend avoiding FODMAPs at first, not sure what psyllium husk is classified as???

Charming women with flatulence...I'll have to give that one a try sometime. Haha.

 

[InstantCoffee]

I'll consider them after I read more about it but right now my current directive is to create healthy bacteria, I'm not too worried about pathogens. I don't believe I have SIBO right now, just a shortage of good bacteria.

The psyllium husks were not what modified my mood. Intermittent fasting did, but now I'm on amino-acid therapy that's what's stimulating positive mood changes. It's the high doses of tyrosine and 5-htp with l-dopa.

As far as I can tell psyllium husks and fiber have the same benefits but fiber is more palatable for most people. I use husks cause they're cheaper and I don't care.

Some pathogens can feed on prebiotics, the scariest one is klebsiella, however as you'll see above consuming certain prebiotic fibers is linked to decrease in MAP.

One of the great things about fibers is they will counter out the bile acids produced by consuming simple sugars that promote the growth of harmful bacteria like c.diff. So far I'm seeing them as primarily protective and I don't know if it's really worth worrying about the harmful bacteria unless you have severe SIBO because as the good bacteria grow they should protect against the bad ones and restore gut mucosa to prevent further immune response so your immune system can return to normal.

If you just focus on killing you'll just be left with bacteroidetes bacteria after a while which can work but will leave you with a super limited diet, it will take even longer to rebuild a diverse gut flora with the bifido and clostridia strains you need to increase your dietary tolerances.

Updates for 7/8/2015

Last night's dose:
2400mg tyrosnie
300mg 5-htp
1x L-Dopa

This morning's dose
2800mg tyrosine
300mg 5-htp
1x l-dopa

Maintained a steady high level of energy, but slept fine.

Yesterday all day I felt wired, like I was high on caffeine. Today it doesn't seem quite as pronounced despite increasing my dose slightly. It's weird, when I started the therapy the first side effects were extreme drowsiness / sleepiness at work. It's come full circle.

I picked up a flavorless, all-natural protein shake for some quick easy calories without all the sugars and crap you usually find in them.

I also picked up a bifido specific probiotic this morning. I ordered some of the Fitness Fiber by ON and it should arrive on Friday. $10 for two tubs is a bargain. I'm weary about the 'digestion resistant maltodextrin' in it, but hopefully it's either not a problem or offset by all the other beneficial prebiotic fibers.

I continue to see stabilization with psyllium husks back in my diet, my night time gas was very much reduced and I slept alright last night. I had a semi-loose BM when I got up, not 100% sure why, but I feel like the first probiotic I bought which is a chewable flavored with sugar might be to blame.

Or the beef bone broth i made. I seem to tolerate the chicken alright but beef sometimes gives me issues and stomach discomfort.

It could also be the new protein shake but time will tell on that one.

I found my favorite strawberry brand also comes in organic at the store so I had a pound of those for breakfast, also bought some green baby bananas and some carrot sticks. Lunch is oatmeal with honey, 100% maple syrup, milk and protein shake with safflower oil and a package of gluten free mac and cheese.

Might cheat and try a little chocolate again because I lack self control.

http://umm.edu/health/medical/altmed/supplement/tyrosine

Levodopa (L-dopa) -- Tyrosine should not be taken at the same time as levodopa, a medication used to treat Parkinson's disease. Levodopa may interfere with the absorption of tyrosine.

I may shift my second dose of L-dopa to be at a different time than my tyrosine after reading this. It's really hard to balance this, I need to take 1 dose in the morning 1 at night plus find time either 2 hours before or 4 hours after my medications for psyllium husks.

One interesting thing I thought of this morning, I had a symptom of something for a long time that went away without me really noticing.

All winter and through the spring I had chronic crusting up inside my nose, plus my nose was always running. Often times there was scabbing or yellow / white crusty stuff that wasn't like usual mucus on the inside of my nostrils.

I haven't noticed it and haven't had to carry tissues with me everywhere, it's been gone... maybe since shortly after I started the fasting therapy?

It could just be a seasonal thing and purely coincidental.

Interesting post supporting my belief that MAP is a marker of increased crohn's activity, not causative:
https://www.crohnsforum.com/showthread.php?t=36726

Hi, Old Mike, sorry for the delay. I am in a vacation with my family with busy schedules and limited access to Internet. It had been a pleasure to have exchanged thoughts, ideas and information over the email, and thanks for your interest in my opinion on the possible link between Mycobacterium avium subsp. paratuberculosis (MAP) and IBD, especially Crohn’s disease (CD).

Not like saccharin and sucralose, MAP as the possible cause of Crohn’s disease had been suspected for about a century, with extensive studies by some researchers, especially in the last several decades. Despite that, the results remains highly controversial, largely because the conflicting “facts” in almost every aspects. To my knowledge, there is also a big discrepancy between the incidence of IBD and contamination of MAP in some countries. For instance, Sweden had been one of the countries with the highest incidence of IBD, including both CD and ulcerative colitis (UC), but MAP contamination had been extremely low (see Sternberg Lewerin S et al. Control of paratuberculosis in Sweden. Proceedings of the 9th International Colloquium on Paratuberculosis 2007, p. 319-323. http://www.paratuberculosis.info/web...ories/pdfs/274). Back to 1952, MAP had been included in the Swedish Epizootic Act (SFS 1999:657). According to this legislation any suspicion of MAP is notifiable for animal owners, veterinarians or other professionals with animal contact, regardless of the species of the animal. Moreover, it required the Swedish Board of Agriculture must investigate all suspect cases and take all necessary means to eradicate and prevent the spread of the infection, if confirmed. As the result, although there were a few sporadic cases of MAP infection in cattle since 1993, all the cases were directly or indirectly linked to the imported animals, with all cases being beef herds, but none in dairy herds. The negative finding of domestically originated MAP in the more than 1.5 million of cattle and about half a million of sheep all over the country suggested the extremely low, if not zero, MAP contamination in Sweden, despite the very high incidence of CD and UC seen in many cities in Sweden like Stockholm, Uppsala, Orebro, Malmo, and Gothenburg.

In addition, there were also many conflict results regarding other aspects on the suspected link between MAP and IBD. Although some studies (like the one in Forest Virginia) suspected that contamination of MAP in the pasteurized milk or the water supply may cause CD in human, other studies failed to show any increased risk for dairy farmers with a more direct and certain contact with MAP through the infected animals (Jones PH, et al. Crohn's disease in people exposed to clinical cases of bovine paratuberculosis. Epidemiol Infect 2006;134:49-56). Although study indeed found MAP in the lymph nodes of feral cats on the contaminated farm, they did not had the signs of IBD (Palmer MV et al. Isolation of Mycobacterium avium subsp paratuberculosis (Map) from feral cats on a dairy farm with Map-infected cattle. J Wildl 2005;41:629-35).

At beginning people were suspected a similar origin for both Johne’s disease in cattle and CD in humans as they both showed the obstructive damage near the end of the ileum. However, as shown in some of the recent studies, there was a shift of CD from the small intestine to large intestine over time and the involvement of only large intestine has become the main form for CD (the Crohn’s colitis). I suspected that IBD now would be more mimic the commonly seen IBD in pet dogs and cats rather than the Johne’s disease in cattle (Qin X. What is human inflammatory bowel disease (IBD) more like: Johne's disease in cattle or IBD in dogs and cats? Inflamm Bowel Dis. 2008 Jan;14(1):138). There were also many other fundamental differences between Johne’s disease and CD. For instance, large amounts of MAP can be found in the mucosa or feces of cattle with Johne’s disease, which can be transmitted to healthy herds; in contrast, the bacteria are hardly seen in the tissues and feces of patients with CD, and IBD in general is regarded as noncontiguous. Although studies showed higher rates of existence of MAP in gut tissue of CD patients by the high sensitive methods such as the PCR detection of the IS900 DNA segments, there are also increase in other bacteria such as Helicobacter spp., Listeria monocytogenes and Escherichia coli, suggesting this could be just reflected the weakening of gut barrier and increased gut permeability (Tiveljung A, et al. Presence of eubacteria in biopsies from Crohn's disease inflammatory lesions as determined by 16S rRNA gene-based PCR. J Med Microbiol 1999;48:263-8). Finding of viable MAP in patients with CD would be important evidence for the possible link. However, the more rigorous test organized by NIH failed to repeat and confirm these findings (Van Kruiningen HJ. Where are the weapons of mass destruction - the Mycobacterium paratuberculosis in Crohn's disease? J Crohns Colitis 2011;5:638-44). Therefore, it would be no surprising that there are many deep believers on both sides. Both sides think they hold enough scientific evidences. However, one thing would be true: one side must be wrong, along with the many “solid scientific facts”.
Xiaofa Qin is offline Report Post

7/9/15
Last night's dose
2800mg l-tyrosine
300 mg 5-htp
1x L-Dopa

Today's dose:
3200mg l-tyrosine
300mg 5-htp
1x L-Dopa in morning, one at 11:00.

My mood hasn't felt as positive the past two days, maybe due to the increase of tyrosine, but it could just take time to balance out, as the doctor said it can take 5 days. The tiredness is back too, I'm not feeling the stimulating effect of the tyrosine, it seems like once the dose exceeds a certain threshold is starts going in the opposite direction. Strange.

Going to 3000mg or above was when I started feeling depressed and anxious last time.

I guess I'm going on faith now, if I just sat at about 1500 to 150 I could probably maintain the 'feel good' properties of the therapy, but even the patient with the best gastrointestinal response to it reported some depression, anxiety and fatigue.


I continue to experience a lot of gas, but not painful gas like I've had in the past. I'm going to try no chewing gum for a while, I know I shouldn't be having it but I'm very self conscious about bad breath after eating. The sorbitol in sugar free gum is a FODMAP and I should be avoiding it.

The gas as also smelled worse than usual, but my BMs have been formed and more regular, so this might be a sign of positive bacteria rebalancing.

I'd backed off the L-glutamine because I believed it caused gas previously but I want to look at reintroducing it and the Taurine.

 

[InstantCoffee]

Gas seems to be linked to my maple syrup consumption.

Weird because other sugars don't seem to be stimulating it the same. I cut out maple syrup today but I've still have pom juice, honey, ice cream and strawberries and my urgent, excessive gas is gone.

There's definitely something different about how it's digested like people say, just not sure what.

I tried doing a home made probiotic enema today and ended up with bloody mucus. The only two times I've ever had blood is after trying probiotic enemas. Maybe it's one of the additional ingredients in the primal defense probiotics, they have a lot of filler ingredients I don't like.

If I ever decide to try it again it will be with a purer source of probiotics with no filler. I may culture it overnight in water with prebiotic fiber in distilled water to enhance potency.

I've been munching on green baby bananas without problem, taking the Fitness Fiber.

Sticking with the current doses on my therapy:
Morning:
3200mg tyrosine
300mg 5-htp
3x multi for cofactors (b6, folate, C, calcium)
500mg lysine
1500mg cysteine
plus additional calcium and magnesium supplements on the saide

Aside from that I'm taking fish oil, a weekly vit D and I take a vitamin K at the same time to balance it.

About 10g of l-glutamine,
3.2g taurine

I've temporarily stopped taking the oils because I was considering them as a cause of the gas. I'll retry them when I'm certain it's cleared my system.

 

[UnXmas]

Wouldn't it be easier to add/change one thing at a time so you always know the cause of the problem?

Couldn't you use mouthwash or brush your teeth after eating if you don't want to chew gum?

 

[InstantCoffee]

I should, but I'm impatient so I use a shotgun approach. Modify a bunch of things, if I see positive results I find out which one caused it later. Not scientific, not responsible, but time is of the essence.

I can't really brush my teeth at work or when out with friends. I don't think gum was the cause anyway because it seems to definitely be the maple syrup, and the small amounts of sweetener swallowed probably amount to very little.

Today I had an interesting accidental experiment. I accidentally ingested a lot of high fructose corn syrup, one of my worst trigger foods. 3 hours later I'm not having any reaction to it.

I used to get diarrhea, dehydration and lethargy in the first 30 minutes from even a mouthful of juice with it.

 

[UnXmas]

I have an incredibly dry mouth, so I always clean my teeth after eating, I take little travel-size tooth-paste everywhere, nobody seems to mind seeing me brush my teeth in the bathrooms of retaurants, and they may think it's weird but probably no weirder than seeing me eat only a starter or only dessert for my meal. Only times I don't brush my teeth were when I used to go out on long walks and eat lunch outside.

How exactly did you accidently ingest corn syrup?!

 

[InstantCoffee]

My cousin and I got coffees, mine was plain, his was some chocolate chip flavored thing. We were fishing and I reached down and grabbed the wrong one to take my tyrosine / 5-htp powder. Because of the salty / bitter flavor of the powder I couldn't tell I was drinking the wrong coffee and had a few mouthfulls before i realized.

Then next morning wasn't so good, but normally HFCS ingestion would have ruined my day.

Tomorrow is day 5 of consistent dosing on my amino acid therapy, if my mood isn't stabilized I'm going to do a 'pill stop' which will help me determine if my dose is low or high, and most likely go back to the dose where I felt mentally best at and stay there for 5 days and see what happens.

My first appointment with my GI since 2013 is next month. I'm going to get some bloodwork and urine testing done to check my vitamin levels and make sure I'm not hurting my kidneys with supplements.

I'm going to look into a colonoscopy if I can afford it to check how things are.

 

[InstantCoffee]

I've been reading Dr Stein's blog stuff and he says that anxiety is a result of low tyrosine rather than high.
Though tyrosine produces catecholamines like adrenaline which would normally result in these feelings, when you're deficient compared to serotonin it causes melanin steal which results in feelings of anxiety.

I did a brief pill stop, I felt less depressed but the anxiety was creeping in so I think I have low tyrosine. I'm going to start at 1600 - 150mg 2x a day again and gradually add tyrosine until the anxiety stops.

I need to do some more research on the involvement of D-mucuna and l-cysteine in his process. It seems they make things much more complex due to the interactions of cross inhibition.

All I know is that 1600-150 seems SO CLOSE to a good balance.

He suggests for Crohn's a Dopamine trial which is a certain dosing of each for 5 days and depending on how you react will point you in the right direction of the dosing you need. It's a LOT of l-dopa to take though, I'm debating on if I just take what's close to working and run with it, or start over with a guided approach.

_____________

Interestingly, he suggests the Dopamine trial for crohn's (to determine whether you need seratonin or dopamine therapy) which is a high intake of D-mucuna and low intake of cofactors.

He then says NOT to do it for a set of other personality disorders because they will most likely have an adverse reaction to the L-Dopa, this includes anxiety, depression and social anxiety, all of which I've dealt with to some extent, especially depression.

I've noticed the recent depression and brain fog started with the d-mucuna.

Yesterday I took my first dose at lunch time of 1500 tyrosine, 150 5-htp, when I got home I took d-mucuna and things got a little weird, then I felt like I was having an anxiety attack, I took additional tyrosine and cysteine and balanced it out a bit but then I had diarrhea (not sure if it was from what I ate, it should have been 100% safe food, just tilapia, in safflower oil with garlic and parsley flakes) and couldn't sleep until 2am.

I'm starting to think I'm seratonin dominant and need to follow the seratonin dominant protocol which involves no D-mucuna, just aminos in a specific dose timing.

I'm going to go below the recommended dose since I seem to respond well to lower amounts.

He's giving 6000 mg tyrosine 600 mg 5-htp at 8am and 4pm (+ cofactors in cysreplete pills)

Then he's giving 3000 mg l-cysteine at noon, 4 and 8pm.

I'm looking at 2400mg tyrosine 150mg 5-htp and I'll lower the l-cysteine respectively to about half at the same time scheduling and see what happens.

I may need to look into an independent source of B6, selenium and folate as the additional pills he gives contain large amounts. B6 is very important for providing fuel for the enzymatic reactions caused by this therapy, and it's only toxic in doses of 1000mg+ taken daily for over a year by a healthy individual. Those using a therapy like this need it for proper response.
________________________________

I did a fast today to clear my system... also because I ran out of food.

I prepped probiotics in a solution of pom juice and let it sit out through the day and drank it with my oil mix when I got home and I'm chasing it with a calorie shake.

I may try to get back on IF if I can get to 130 I'd really like to try a 48 hour fast.

 

[InstantCoffee]

I haven't updated this in a while.

I cut my intake back to 3 scoops tyrosine 3 scoops 5-htp in the morning, 2 scoops tyrosine 4 scoops 5-htp at night which is roughly 1500/150 and 1000 / 400.

My mental state has been more stable and less depressed than it was on high dose. I've cut the L-Dopa out entirely.

I've decided to experiment with a low glycemic index diet. It makes the most sense in what I've seen with sugar intake effecting symptoms of crohn's and hidradenitis.

I'm going to have to look at a way to replace oats as my primary source of carbs. I'm switching to Stevia as a sweetener, no more honey. No more chocolates or sugars.

I may have to cast aside my worries about meat and protease for a time - after all I saw my greatest improvements on a high protein, high fat diet.

I'll continue to use fiber supplements to feed my gut bacteria. I've taken as many as 4+ scoops a day with no adverse reaction.

I don't seem to be tolerating tomatoes well. Unfortunate because they are such a good addition to lots of meals.

Luckily strawberries are low GI, so a good source for a sweet fix.

I've been doing intermittent fasting with fiber powder supplement to maintain gut bacteria. I take aloe vera throughout the day to increase apoptosis with colloidal silver.

I've been trying ginkgo biloba extract for my hydradenitis incase it may be related to MRSA as I've heard it fights MRSA. So far both oral and topical application on my jaw lesion has not helped, also using DMSO + colloidal silver topically. Has helped my jaw, but a new infection that formed on my ear lobe went away with it. Either it was a different source, or being new and smaller made it more susceptible to treatment.

 

[InstantCoffee]

Greetings friends and followers.

Updates / changes from last post:

I have not been able to successfully implement a low GI diet -yet- as I don't know the GI of the mac and cheese I've been relying on for quick meals these past few weeks.

I've relaxed on my intermittent fasting however. I haven't taken my Ginkgo as I should be.

I'm now experimenting with low amounts of borax in water. While this may sound shocking to most, research suggests it's about HALF the toxicity of table salt per volume. A pinch in a liter of water is not dangerous, however may have flouride detoxifying properties as well as anti-mycobacterial.

I've stopped using DMSO after learning that it can promote cell apoptosis in the retinas.

I've been trying to take fulvic acid but it needs to be taken in chlorine-free water in a glass container which means I needs to do it after work and I often forget!

I've been following some of Ted's remedies on earthclinic which includes borax, baking soda, humic/fulvic acid.

Overall, my bowel movements have gone from diarrhea to a controllable semi-constipated state. I haven't seen bile in my BMs or an upset except when I experimented with coffee shop coffee the other night.

Whole bean coffees started giving me problems a few months ago, and now I'm drinking ones in my cabinet that I had set aside because they gave me issues and experiencing no reaction.

That's not to say I feel like I'm cured or in remission. I'm still struggling with weight gain, and I've recently felt a loss of appetite. There's no feeling of aversion to any of the food I'm eating, just a feeling of not wanting to eat.

I found out I can have sunflower butter and have been snacking on sunbutter crunch bars by Enjoy Life brand, really blew my mind that they didn't make me sick. 1 out of thousands of processed foods that doesn't.

Update on researches:

Several studies note zinc deficiencies are common in Crohn's Disease. A study of 54 Crohn's Disease patients found significant deficiencies in serum zinc, vitamin A, and retinol binding protein levels compared to healthy controls. Zinc levels decreased in accordance with disease activity, patients with active disease having significantly lower levels than those with inactive disease. Zinc deficiency is associated with impaired metabolism of retinol binding protein, resulting in a vitamin A deficiency.185

Other researchers have corroborated the tendency of zinc deficiency to parallel disease activity in Crohn's Disease. A small study compared five patients with active Crohn's Disease to five patients with inactive disease and found serum zinc levels significantly lower in those with active disease. Furthermore, low zinc levels seemed to be due to increased body clearance, rather than malabsorption. Reasons for the increased zinc clearance were not pursued.186

Another study found serum zinc levels deficient (defined as 75 mcg/dL) in 17 of 50 Crohn's Disease patients (34%). Low zinc levels were associated with an increased tendency toward fistula formation, with 65 percent (11/17) of Crohn's Disease patients with low zinc levels experiencing fistula formation. 187 Thus, both low zinc and vitamin C levels have been implicated in a tendency toward fistula formation in Crohn's Disease patients.

Colonic mucosal biopsies of tissue from Crohn's Disease patients found abnormally low levels of zinc from uninflamed but not from inflamed tissue.188 Increased levels in involved tissue may be due to the need for more zinc as a co-factor for superoxide dismutase.

- See more at: http://www.crohns.net/miva/educatio..._in_Crohns_Disease.shtml#sthash.zfv3RrSZ.dpuf

What I'm especially interested in is that our zinc deficiency tends to be an over-excreation rather than under-absorption. I hope there's answers to this out there!

I was reading about a guy using high doses of zinc to treat his crohn's. It may not have been crohn's as zinc deficiency is similar to crohn's in symptoms.

Many of us are exposed to large amounts of copper through our environment and diet, which worsens zinc depletion.

Getting your zinc / copper levels tested may be useful.

All of our minerals for in antagonist/agonistic relationships, usually in pairs.

Potassium / sodium.
Calcium / magnesium.
Zinc / copper.

It's important to know your levels of both before supplementing one. If you're deficient in zinc and only get tested for zinc and have an undiagnosed copper deficiency, supplementing zinc without copper will make you worse.

 

[InstantCoffee]

Rice products no longer cause a reaction. This is kind of a big deal.

I've been experimenting slowly, first the mac and cheese, then sunbutter crunch bars, then some gluten free fig newton knock-off brand. I tried white rice on sunday with no reaction.

Some part of my shotgun approach must be working.

 

[josemadrid]

Nice to see you are improving. What is your opinión on intermittent fasting approach? Does it helped you a bit in your diarrhea and mental state?

 

[InstantCoffee]

Narrowing it down:

I reduced some of the therapies to see what would happen and saw a return of symptoms.

The following are those I left out:
-fulvic acid
-borax
-baking soda
-butyric acid supplement
-fulvic acid in distilled water

Baking soda I've experimented with in the past to no great benefit so I think I can cross that off. One of the above has resulted in a decrease in flatulence, cramping and bowel movement frequency as well as an increase in dietary tolerance and weight.

I've decided to give homeopathy a shot, I've gotten in touch with a free doctor online who's told me to try Tuberculumin after reviewing my case. Interesting that it's made with dilluted extract from tuberculosis tissues with the prevailing belief that MAP, a tuberculosis species, causes Crohn's.

I can't see what the doctor has to gain from doing their homework, if homeopathy is placebo as others say, there's no risk, but also no reason to prescribe any specific solution unless they assume I'll research it. If it's placebo they could just throw anything at me in hopes it works.

Also interesting this particular homeopathic remedy requires a prescription in the US. They cannot both have 'risks' and be sugar pills. The FDA really needs to get off their ass on this one.

Hopefully it's not intercepted by customs.

 

[InstantCoffee]

I'm still thinking Crohn's is likely, but mine has presented 'weird' enough to cause my doctor to call the diagnosis into question.

I returned to him after 2 years for a checkup, told him I'm doing well, on no medications, and it responds mostly to dietary changes. He seemed a bit shocked, looked over my history, and said there were no clear cut indicators of Crohn's that he could see.

Interesting things about dx and history:

Previous to 2003 I had no symptoms except occasional heartburn at a young age after eating sweets. Late 2003 I was eating a bag of chips and some french onion dip and started feeling weird. It continued to get worse and I presented with nausea, vomiting, and discomfort in the pit of my stomach that persisted for weeks.

Doctors initially treated with antibiotics, which did nothing, and antacids, which helped to an extent.

I was recommended to a specialist in summer of 2004, but during that time lost significant weight and had to be hospitalized. I was vomiting green fluids, but rarely had any lower GI symptoms.

I was put on remicade and probably prednizone but I can't recall specifically, my symptoms improved and I spent the next 3 years symptom free until college, I think around 2008-9.

I began having frequent diarrhea and presented with chronic abscesses. Mostly on my butt cheeks (but not really localized to the preianal region), once on my testes and 3 on my pubic area. Doctors checked for fistulas but didn't believe it was caused by them. I had one fistula in the past but it had since closed.

Once out of college my symptoms continued to deteriorate, I was switched onto Humira and saw no improvement on Humira + prednizone. Abscesses continued to form. I began having severe diarrhea, cramping stabbing pain, slowed motility, vomiting, and heartburn.

I cut out a bunch of food from my diet gradually including gluten, potatoes, canola oil and high fructose corn syrup and with each one a symptom went away.

My gastric ulcers and inflammation of the gastric sphincter went away despite the fact I had been off medications for several months pending treatment of an infected abscess.

Reviewing my patient log my doctor said diagnosis was made with thickening of the ileum with non-specific inflammation atypical of Crohn's disease.

Most other crohn's therapies like Imuran didn't have an effect on me. Supplements that often help Crohn's patients like L-glutamine, boswellia, pau d'arco, cat's claw, etc. never helped. Unlike most Crohn's patients I can drink all the milk I want, and coffee seems to make me feel better rather than worse. My reactions to some food were within 10-15 minutes of eating it which seems too fast for Crohn's.

So is my Crohn's just weird, or is there anything that's like Crohn's but not?

 

[Crohn2357]

My reactions to some food were within 10-15 minutes of eating it which seems too fast for Crohn's.

Could be (most probably) intestinal peristalsis. It can cause abdominal pain and urgency for some crohn's patients (including me if my disease isn't controlled).
Could be upper GI inflammation (?).

 

[InstantCoffee]

Could be (most probably) intestinal peristalsis. It can cause abdominal pain and urgency for some crohn's patients (including me if my disease isn't controlled).
Could be upper GI inflammation (?).

At the time trigger foods caused upper inflammation but it went away (according to scopes) after I went gluten free.

I had gastric ulcers and inflammation of the gastric sphincter and both were gone / diminished on my follow up scope. What really pissed me off was when the doctor's head nurse practitioner / assistant (not sure what her official title was) told me it was 'too severe to be explained by food' yet here we are.

I've gained 7 lb.s this week and I have no idea how. This is crazy.

I cut coffee and had extreme fatigue, feels like chronic fatigue syndrome or something idk. I've been napping on lunch breaks and tired the whole day.

I tried a new homeopathic medicine Wednesday and cut out all other supplements.

I don't believe the homeopathic medicine is the cause of the weight gain but idk.

As of Saturday I introduce some new supplements. I bought more saccromyaces to give it another try to see if it would help with gas, so far it hasnt'.

I bought Thymus gland extract. I read about the Thymus and Thymus extract in helping with Tuberculosis. Since Crohn's is linked to MAP, a cousin disease to TB, I decided to look up TB therapies.

The Thymus glad starts to shrink around puberty, when Crohn's typically presents. It's responsible for immune behavior. Very strong links going on there.

 

[Crohn2357]

S. boulardii produces extra gas for me and many people. But it helps my condition.

I've used thyme oil regularly for 2 weeks. It caused my worst flare. For some people it helps, for others it can make their disease worse.

As for thymus gland and thyme products and its MAP inhibition... I've created some topics in HealingWell forum. I guess I've created some here as well. In HW forum there are good topics about this. Look for the Old Mike's and Canada Mark's topics and xy123 's topics by using search button. Thymus gland was a recent topic in there created by Old Mike. LOTS of thyme / oregano oil topics in there...

I'd say, be careful with thyme products. Start slow and be cautious.

----

Take a look at this thread I've created 4 days ago. What shocked me most is the study saying people taking Saccharomyces Boulardii has more SCFA (butyrate especially) in their feces. It could be that s. boulardii may be helping butyrate producing bacteria to more easily colonize and live in the colon.

http://www.crohnsforum.com/showthread.php?t=73817

 

[InstantCoffee]

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.

 

[InstantCoffee]

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.

 

[InstantCoffee]

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-Essenti...250000024228&gclid=CPrJ7aGNp8oCFcZbfgod1OEAuA

 

[InstantCoffee]

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.

 

[InstantCoffee]

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.

 

[Beach]

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.

 

[Charlotte.]

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.

 

[Scared1]

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?

 

[InstantCoffee]

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.

 

[Beach]

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.

 

[InstantCoffee]

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.

 

[Beach]

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.

 

[InstantCoffee]

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.

 

[Beach]

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-defense-of-low-fat-a-call-for-some-evolution-of-thought-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/...changed-my-life-dieting-food-blood-sugar-diet

 

[InstantCoffee]

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-defense-of-low-fat-a-call-for-some-evolution-of-thought-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/...changed-my-life-dieting-food-blood-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.

 

[Beach]

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/2015/08/04/turning-diabetes-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.

 

[theseawillrise]

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"

 

[InstantCoffee]

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.

 

[theseawillrise]

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.

 

[theseawillrise]

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.

 

[Scared1]

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?

 

[theseawillrise]

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.

 

[theseawillrise]

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

 

[theseawillrise]

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.

 

[InstantCoffee]

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.wordpr...-food-intolerances/comment-page-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.

 

[InstantCoffee]

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.

 

[Beach]

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-health-through-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-Current...=sr_1_2?s=books&ie=UTF8&qid=1464100211&sr=1-2

 

[InstantCoffee]

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.

 

[Beach]

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.