Dietary Approach to Fistulas

[WingedVictory]

Background: My story thread

Crohn's & Fistula/Autoimmune Disease Causation Theories
I believe Crohn's and other autoimmune disorders to be caused by the conditions dysbiosis (Small Intestinal Bacterial Overgrowth (SIBO)/fungal/protozoa/virus overgrowth) and Intestinal Permeability (leaky gut). Leaky gut allows foreign pathogenic organisms, undigested food proteins, and plant chemicals (not pesticides) that naturally occur in fruits/vegetables to pass through our damaged gut walls and enter the blood steam where they do not belong. This leads to inflammation as our immune system see’s these inhabitants in the blood as a threat. Undigested food and plant chemicals encourages the onset of various physical and mental symptoms known as food sensitivities (I'm not talking about allergies here...) and systemic inflammation. Pathogenic organisms occupying the intestinal mucosa and breaching it also makes us vulnerable to the possibility of systemic bacterial/fungal infections like candida overgrowth. There are many other opportunistic strains of microorganisms besides candida that can wreck havoc on the body and it's various organs. I believe leaky gut is partially caused by having pathogenic overgrowth in the small intestine (likely the colon as well in the case of colitis). It can be a combination of multiple hostile microorganisms that have taken over and colonized your digestive tract.

These conditions are brought on by the constant over-consumption of high carb/sugar/starch foods that not only feed pathogens leading to overgrowth, but also directly contribute to intestinal damage. Additionally, these foods contain chemical components (various anti-nutrients) that inhibit absorption of macronutrients and micronutrients, therefore discouraging intestinal healing and optimal body functionality. These foods are mainly all forms of grains, pseudo grains, legumes, nightshades, and alcohol – I believe there are others as well.

There are also many other factors linked to dysbiosis and a compromise of our defensive probiotic flora. Such as repetitive use of antibiotics, antibiotics in meat, fluoridated water, being hyper hygenic/sanitary, stress, isolated/sedentary lifestyle, being born cesarean, not being breastfed, etc.


Research
Earlier this year I was researching food sensitivities and leaky gut and got the idea to search for salicylates (a natural chemical found in most plant foods) and their relation to fistulas. I found the following article as an inspiration for my initial dietary changes.

http://gut.bmj.com/content/34/6/783.full.pdf

On page 786 it mentions treatment of a patient for salicylate sensitivity and how they responded to a low salicylate diet by closing their fistula and bringing their Crohn's into full remission without any drug treatment. I'm not sure of the credibility of this research and I haven't been able to find any further cases of treating fistulas with a low salicylate diet. Ultimately, I don’t believe salicylates are the root cause of fistulas, but in my case removing high salicylates has worked as a temporary fix to get my fistula to calm down while I heal leaky gut and correct gut dysbiosis.

I can't prove I have salicylate sensitivity, but my fistula stopped draining and closed up within a few weeks of being on a low salicylate diet. It’s possible that this plant chemical is a partial cause to your own fistula.

A few blogs I've been following lately that have provided great insight
http://coolinginflammation.blogspot.com/
http://drbganimalpharm.blogspot.com/


Dietary Strategies
I'm on what I'd call a hybrid diet, it's a combination of Autoimmune protocol elimination diet and SCD, while keeping my salicylate consumption as low as necessary to keep my fistula from re-opening. Choosing low FODMAP foods may also be helpful to limit the growth of pathogenic bacteria. Neither the Autoimmune Protocol or Low FODMAP are designed to be permanent elimination, once you see symptom relief from healing your gut you should be able to start reintroductions. As I’ve healed my gut I’ve been able to reintroduce high salicylate foods again like turmeric, ginger, berries, coconut oil, etc.

I'm now only consuming simpler carbohydrates (mostly fruits) because they are quickly digested and absorbed. This will help me to avoid further pathogenic overgrowth and minimize IBS symptoms. I'm also trying to limit my overall carbohydrates to around 100g (20g fructose) a day , thus I rely heavily on fats/oils with my meals. Below is just an example of my typical diet as I'm constantly refining it - you may prefer other types of meat/fish and non-starchy fruits and vegetables. Eventually as your body heals you should be able to reintroduce foods one at a time to check your tolerance.

For those newly diagnosed with fistulas/rectal conditions (and associated digestive diseases) I strongly urge you to consider the possibility you have issues with dysbiosis, leaky gut (I've read that studies say 70%+ of people have this), food sensitivities (75-90%), and systemic pathogenic overgrowth (non-digestive chronic conditions).

Getting a seton placed should allow your fistula the chance to safely drain while you research and restructure your diet. Consider giving the Autoimmune Protocol diet + bone broth/l-glutamine a shot before pursuing major invasive surgical procedures that are trivial. I know first hand that it’s extremely challenging to adhere to a structured elimination diet, but it will grow on you.

Gut Healing & Immune System Boosting Diet
NO Dairy, nuts, grains, pseudo grains, legumes, alcohol, nightshades produce, refined sugars, high starch foods, chocolate, eggs, soy,...I'm sure I'm missing something, but you get the idea - very restrictive.

In addition to the food eliminations the inclusion of bone broth and L-glutamine are integral to healing the upper portion of the small intestine to eliminate food sensitivites to food chemicals like salicylates, histamines, oxalates, sulfites, etc. Relief of food sensitivities is what will help to get the fistula to stop producing fluid and start healing up. After a month on the diet it's recommended to start reintroducing foods.

Proteins: Free-range Organic roasting chicken, ground beef, wild sockeye salmon, etc...

Micronutrients: Kale, spinach, mustard green, turnip greens, carrots, chokos, bok choy, cabbage, brussels sprouts etc...

Carbohydrates: Ripe bananas, berries, kiwis, rutabaga, oranges, etc...

Fats: Grass-fed ghee, virgin coconut oil, extra virgin olive oil, red palm oil, unsweetened shredded dried coconut flakes

Seasonings: Turmeric, ginger, cinnamon are great for antimicrobial properties along with many other herbs and spices. If you haven't already start incorporating them into your dishes and daily meals then I'd give them a try. Many are high in salicylates so if you suspect an intolerance you may want to back off until you heal the gut. Himalayan pink salt, celtic sea salt, or real salt are the best forms of sodium because they're less processed and contain trace minerals.

Beverages: Bone broth made from roast chicken remains. Otherwise, mostly filtered spring water, some teas: green/peppermint/ginger for detox. Stay away from juices and sweetened beverages. Learn to appreciate the simplicity of water with lemon, black coffee, and unsweetened tea.

Supplements: L-glutamine (~20g+/day) and beef gelatin to help heal my gut and I feel that it’s because of them and bone broth that I now tolerate high salicylate foods again.

Probiotics: I’m experimenting with high doses of Soil Based Organism probiotic supplements (Primal Defense Ultra) to help rebalance out my gut flora and correct dysbiosis. My goal is basically to get more "good" microorganisms inside me to displace the pathogenic ones. This should help me relieve my non-digestive symptoms. My next step is to try a high dose probiotic like VSL3 or Elixa and eventually start working in some fermented vegetables.

I have tried home-made fermented milk and water kefir in the past, but that seems to have only encouraged further issues with systemic overgrowth. It's what I believe led to my recent heart palpitations. I would advise those that suspect they have a leaky gut to take it slow when introducing fermented foods. Natural health practitioners recommend starting with small amounts of vegetable ferments at first, like sauerkraut or kimchi.


Remember that patience and dedication are a virtue and that resolving health issues and healing the body takes time. I feel it is best we look at our health challenges as a learning experience about dietary principles that we can make use of not only for ourselves, but also to profoundly impact the lives of others.

 

[24601]

That's really interesting (and wonderful) that you are having such good results with your low salicylate diet. Did you ever notice a reaction to aspirin?

It does sound like salicylate sensitivity is rare though. How did your symptoms compare with those listed on this wikipedia entry? http://en.wikipedia.org/wiki/Salicylate_sensitivity

Had you been keeping a food diary to identify your reaction to different foods? Were your reactions very consistent? Because I do think that can be a major factor in having success with a dietary approach. It's been my personal experience (and I've talked to quite a few people who shared this experience) that some don't have very consistent response to foods making it very difficult to formulate a safe diet - and possibly indicating that we won't benefit in the same way as our sensitivities aren't as clear cut. I read through some of the paper (in part because one of the authors was my doctor about 10 years ago!) and that was one of the conclusions they came to with this study - with their one patient out of 42 in the food part of the trial with salicylate sensitivity being an exception.

It would probably be useful for anyone considering this particular approach to, as a first step, keep a food diary to see if their symptoms are brought on by any particular foods as it sounds like salicylate sensitivity may be easier to identify in this way than some other dietary factors.

 

[WingedVictory]

I don't keep an actual record of a food journal, more just my own mental record of things. My diet is so minimalist at this point that I only consume a few select plant foods. My diet is heavy in protein and fats so it's rather simple to analyze.

For those just starting out with an elimination diet I too would recommend a food journal to compliment the process.

 

[InstantCoffee]

I should try this but my diet is loaded with things that contain it. I still have minor crohn's symptoms but a lot of skin problems. I know they're dietary triggered but I'm struggling to pin down the chemistry that links the triggers together so I can know if a food is safe by its ingredients rather than just trial and error.

"Mouthwash and mint-flavored toothpaste"
I used to break out around my mouth after brushing my teeth all the time.

"Cosmetics such as lipsticks, lotions, and skin cleansers"
I've also found some skin cleaners, especially acne washes containing salicylic acid cause really bad breakouts

I chew gum regularly after meals for my breath / to clean my teeth.

"Beverages such as coffee, wine, beer, orange juice, apple cider, regular and herbal tea, rum, and sherry"
I can't drink most alcohol, anything apple, most teas and rum but I chug coffee like it's keeping me alive and it doesn't seem to effect me.

Lately though I can't tolerate many ground coffees and have to stick with instant. Maybe instant is lower in salicylate?

Apparently going completely salicylate free is nearly impossible so you just have to try your best to limit it.



I also used to have a bad fistula and it went away with dieting. I can tell when I'm not on a good diet because the scarred tract area gets inflamed and itchy / hard.

 

[WingedVictory]

That's interesting observations with personal care products. I've pondered whether toothpaste and mouth washes kept me up at night. I've tried topical facial creams and they seem to do nothing for eczema except maybe exfoliate the skin. I think the real cause and potential solution stems from diet. Perhaps look into histamine sensitivity / SIBO connection for skin issues.

Decaffeinated instant coffee brands like Harris, Andronicus, Moccona, and Nescafe are rated as having 0 / negligible salicylate. I'm not big on coffee but I drink a cup of instant decaf Nescafe every other day or so without any symptoms. I believe regular blends are usually rated mod - high.

 

[InstantCoffee]

That's interesting observations with personal care products. I've pondered whether toothpaste and mouth washes kept me up at night. I've tried topical facial creams and they seem to do nothing for eczema except maybe exfoliate the skin. I think the real cause and potential solution stems from diet.

Decaffeinated instant coffee brands like Harris, Andronicus, Moccona, and Nescafe are rated as having 0 / negligible salicylate. I'm not big on coffee but I drink a cup of instant decaf Nescafe every other day or so without any symptoms. I believe regular blends are usually rated mod - high.

Finally something that explains why I can have some coffees but not others. It's nice finding clues that put the pieces together.

Unfortunately I've looked at salicylates, amines, and fodmaps and none of them are completely consistent.

I seem okay with mint and coconut which are high in SLS.

I'm okay with milk which is high FODMAP

I'm okay with cheeses which are high in amines.

IDK

 

[Polar bear]

Thanks for the information. I will give this a try. Having a flare for 3 weeks now. Fistula hurts, skin around my setons are hard and very very itchy. I have tried all my tricks before, sitz bath, calmoseptine, coconut oit, tea tree oil. It helps but after an hour or so its back to square one. I hope the diet can at least relieve the itchiness.

 

[WingedVictory]

I had posted a link to this special diet I had stumbled upon called Failsafe, but a mod removed it because it has books for sale on their website. I would look into that as it focuses on being low in natural food chemicals and they have lots of free information. It's kind of a back to basics elimination program. There's a guide called the superresponders that gives a helpful systematic approach if symptoms persist when on the basic version of the diet.

I think many of us that have extreme manifestations like fistulas need to minimize and rethink our diet down to the essentials so we can try to better understand what's creating the symptom. I think that leaky gut gives many of us food chemical sensitivities that creates inflammation when they get into our blood stream and our immune system mounts a defense against them. If leaky gut was healed there wouldn't be acute sensitivity symptoms to these foods because they wouldn't be getting into the blood stream. Some of these natural food chemicals are basically defense mechanisms for plants to deter bugs and animals from consuming them. Perhaps research and biology has a more proper explanation, but that's just my theory.

Some of the recommendations for histamine in meats may be too demanding and inconvenient to fully incorporate so I wouldn't worry too much about getting that aspect perfect. Although there are some great tips to reduce histamine for when grocery shopping and working with meat.

 

[24601]

The patient in the study you linked to had strictures so I don't believe there is any reason to believe this is a dietary treatment only for fistulas.

I think that in the rare cases of those with salicylate sensitivity you would be treating the cause, or at least a causative factor, of the inflammation in your bowel and depending on how your body reacts to this inflammation you can develop strictures or fistulas or just have inflammation - like any other version of what we call Crohn's.

 

[WingedVictory]

I think you may be right, 24601. I've been planning to make a post on here for a month or so I just needed to see results first. I recently watched the movie The Theory of Everything and I thought that the movies name would have made a more appropriate thread title for my theory. I went with a focus on fistulas because that's what I've been struggling to heal through diet.

It just seems like a matter of identifying all the components of the autoimmune disease equation.

Dysbiosis + intestinal permeability = systemic pathogenic overgrowth, food chemical sensitivities, and systmic inflammation.

 

[InstantCoffee]

If food additives / chemicals were causative there wouldn't be people eating terrible diets without the condition.

It seems based on my reading that cause goes something like this:
Genetic predisposition / vulnerability(The alleles linked to Crohn's are related to handling of intracellular bacteria) > SIBO caused by vulnerability started with MAP or AIEC as the primary antagonist > Leaky gut and further SIBO with things like candida > food sensitivities

Within the chain of events somewhere is creation of an environment not conducive to the longevity of healthy gut bacteria.

There's studies showing that the bile salts expressed in Crohn's patients are different than those in a healthy individual, and the bile has a large influence on the environment of the gut.
http://www.crohnsforum.com/showthread.php?t=72146

It seems unlikely a chemical is causing Crohn's, especially with anti-biotic therapies being so successful. Bacteria is definitely at the heart of the matter.

 

[24601]

InstantCoffee, I really wasn't trying to set off a debate about the cause(s) of Crohn's disease(s). I don't think you'd find us to be in as much disagreement as you think there, although I do have a difference of opinion on some of it.

I admit my language was probably sloppy but in my defense that was because I was focussed on my primary point that I don't believe this approach is only going to be of potential benefit to those with fistulas and salicylate sensitivity as opposed to those with strictures or purely inflammatory disease and salicylate sensitivity. I simply do not believe that in terms of treatments that reduce inflammation that it is useful to split people into groups depending on their disease type - stricturing, fistulizing or purely inflammatory. It seems that if you find an effective way to reduce inflammation in an individual then you can treat any of those disease types.

Have at the whole cause of Crohn's debate on this thread if you must, although please don't feel the need to do it over my comment as it really wasn't intended that way. I'm sure there are many other threads on the forum where you can have that discussion and be aware that if you do carry on that discussion on this thread it may take away from WingedVictory's message. The decision of course is yours.

 

[InstantCoffee]

Since when is discussion debate?

Cause is important when discussing every single aspect of Crohn's. If we can't discuss it because the very idea that discussing it is somehow hostile or off-track then there's no point to discussing anything.

It becomes important because something like salicylate sensitivity - if it's a symptom rather than a cause - it's not an easy lifestyle to follow. It may be possible to reverse the sensitivity if the cause is a precursor to the sensitivity.

Every time we look at a symptom, like a food intolerance, it's important we find the chronology of that symptom in the condition so we know if it's something we can reverse and regain or something that becomes permanently life altering until a point where we find a cure.

It's the difference between someone being able to have more fiber when on remission but still having extreme gluten intolerance.

 

[WingedVictory]

I'd rather not veer off into talking about certain strains of bacteria like MAP or bile salts as they have their own respective threads.

If fistulas are a symptom of Crohn's and inflammation and if I removed a certain natural plant chemical, salicylates and the fistula is healing up. Then it's safe to say that plant chemicals are a source of inflammation. A "precursor" if you will. Growing up and much through early adulthood I wasn't consuming many foods high in salicylates. A salad with olive oil once in awhile, very few vegetables, snack cakes instead of fresh fruit. Mostly lots and lots of wheat and dairy products which are low in salicylates. I honestly didn't appreciate the amount of foods I do now. My diet and taste palette have drastically expanded in the years leading up to developing a fistula to the point where I had high salicylate and mod - high FODMAP foods in my diet at every meal, everyday.

When I was evaluating the spices I was consuming. The last ones I took out of my diet to get the draining to stop were Turmeric and Ginger, two spices known to be "anti-inflammatory", but extremely high in salicylates. Explain that. Not so anti-inflammatory when you have leaky gut eh? I bet a lot members on this forum think to be doing themselves a favor to help heal their disease by cooking with all sorts of herbs and spices and well...that may not be the case.

 

[InstantCoffee]

I know ginger is a definite trigger for me. It causes a burning sensation in my stomach within minutes. Turmeric seemed safe until recently.

I'm still not sure if salicylates are related but one of my biggest concerns oustide my digestion is I have really bad breakouts on my back and get boils on my face sometimes.

I recently started using coconut oil on my skin which is high in sals and it may have been making things worse - but I suspected it was an oral element. Maybe it was both. I was sick the past few days and didn't shower and my skin seems to be clearing up. I'm looking into salicylate free washes now.

I remember though I had grown a beard last year and it was going well until I had to shave it because I developed two boils. I remember I started using coconut oil to keep the beard from drying out shortly before I got them.

I'd also been using coconut or olive oil almost exclusively to cook my steak in before my last flare, when I cut steak, coconut oil and garlic which were the only 3 things I used for steak I got better.

I was making oat-flour cakes and sometimes I would get a weird prickly sensation in my mouth. Sometimes I would use coconut oil in my flour mix and other times I didn't.

I was drinking milk with honey in it for a while, it was fine at first but over time I couldn't have honey. Honey is high in salicylates.

Definitely puts a lot of pieces together and ironically it makes a lot of typical crohn's safe foods no longer safe. I'm still not 100% sure it's what I have but it definitely would make a lot of sense.

Now I have to research all the supplements I'm taking for salicylate content though.

 

[InstantCoffee]

I don't know if this means anything but it's certainly interesting to find.

http://www.ncbi.nlm.nih.gov/pubmed/25947923

After oral administration of 5-ASA, the plasma concentrations of 5-ASA and its primary metabolite, N-acetyl-5-aminosalicylate (Ac-5-ASA), in octn1(-/-) mice were much lower than those in wild-type mice. The time required to reach maximum plasma concentration was also delayed in octn1(-/-) mice.

A study connecting the genetic markers for crohn's with interaction with a drug containing something that has salicylate right in the name. I don't know about this drug though, I'll look into more.

All I can pull from it is the 5-ASA used to treat IBD and Crohn's isn't well absorbed because the OCTN transporters linked to Crohn's have trouble absorbing it.

OCTN transporters are linked to l-carnitine transport. I read a study suggesting high l-carnitine doses as a therapy, I'm trying to find more agreement.

 

[WingedVictory]

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[earthshine]

Thanks for sharing. I have been having diarrhea issues on/off for past two years, since going to India. I was diagnosed with a yeast overgrowth last summer. I had a bad bout of constipation in Feb, while on many antifungals, and ended up with an abscess, then a fistula.

I am now taking next step to have a seton put in. I appreciate your advice, and also wish to heal the fistula via diet and avoid further surgery.

I am on the SCD diet right now, but as I am vegeterian (except now eating lots of eggs and fish) along with the yeast overgrowth, I am challenged to find enough food to eat and to maintain or gain weight. I will also check out the Autoimmune Protocol diet

If you have any other suggestions, I would be grateful.

 

[WingedVictory]

@earthshine
The issue with taking antimicriobials (fungal or bacterial) is they can also kill off your (likely) already minimal amount of probiotic flora. That is part of what I think leads to irregular bowel movements and abscessing, etc...

The effectiveness of our immune system is largely based on the balance of probiotic organisms we have vs pathogenic ones. You need to work on tipping the balance in your favor by adding in probiotics (either from supplements or fermented foods).

As far as diet, since you're vegetarian focused I would make sure any legumes you're consuming are properly soaked or sprouted to reduce anti-nutrients and toxins. I would also try adding more healthy fats to your diet to maintain/boost weight. They pair well as a topping for vegetables. Coconut oil is supposed to have antimicrobial properties so that may aid in getting rid of overgrowth in the small intestine. Hopefully fat won't exacerbate diarrhea. Perhaps consider adding in cooking spices that are also antimicrobial.