Saturday, September 3, 2011

No Colitis



Hard to believe that it’s been over a year since I updated this blog, and two years since I started it. Where does the time go?

I’ll probably bump in here once a year or so with updates, just to make sure this information is current and honest. If at year three I have a massive flare up and die from meat clogging my intestines, it’d be a good idea to note that rather than let people believe this all worked out.

Of course, I have yet to have meat clog my intestines, and the title of this post is the summary from my latest colonoscopy: no colitis activity. Yay! Two years “cured”. My pipes looked good enough for the gastro to move me off of the once a year colonoscopy schedule – I go back in two years, August 2013. Awesome. This’ll be the first year I go without a colonoscopy since 2002.

What’s perhaps more interesting than the result is my behavior in the past year. I did not continue to eat only meat. Meat continues to form the basis of my diet; most meals are mostly meat. But I have added back in a pretty broad variety of other things. For the first few months post meat, I added back in some vegetables and drank a TON of Lactaid milk to gain weight. After a few months of that, I was up to nearly 200lbs from a starting weight of 160lbs. So that worked.

There were no apparent Crohn’s consequences from the milk or the vegetables. I did get more gassy and bloated at times, but no flare up of symptoms or pain. I did discover that brussel sprouts are not really human food as much as they are gut-bacteria food, and that if I wanted to avoid generating sulphurous methane at a rate which would astonish a cow, I should avoid them. So brussel sprouts = bad, at least for me.

That brings me up to December 2010. At that point I was getting tired of milk, and had started to break out in acne on my upper back. That seemed like a clear indication that milk, even if it wasn’t going to trigger Crohn’s, was probably not helping overall. I also hurt my back and had to take a break from weights for a while, so there was no point in chugging that much milk.

So I decided to give the starch hypothesis a direct test. I started eating potatoes.

I did experience some discomfort at first, but no real Crohn’s symptoms. It seems that my digestive system had to reset a bit to handle a pile of starch. Again, I would have more gas (as in gas at all; the meat only diet left me without any) with the potatoes, but no Crohn’s flare. I’m still eating potatoes now, eight months later, with no obvious consequences and no Crohn’s activity in my latest biopsies.

Hypothesis falsified?

Was Wulfgang Lutz right? Just eat 72g of carbs of whatever source and you’ll be fine?

I don’t know. One could argue that the year of zero starch allowed my intestines to heal sufficiently to the point where the bacterial mimetic necessary to generate the autoimmune response are no longer crossing the gut barrier, and so the starch hypothesis stands. Or maybe I didn’t need to eat only meat for a year – maybe just dropping the total starch load to some lower level would be sufficient, ala Lutz. Or maybe the starch hypothesis is total crap and I just happened to have a flare up and remission which coincided bizarrely well with a radical shift in diet.

The one thing I have not tested myself with is gluten. Maybe all of the above is a red herring, and removing gluten and various grain proteins from my diet caused the gut healing necessary to shut down the Crohn’s reaction. I was tested for celiac and came up negative back when I was first diagnosed, but frank celiac and gluten sensitive are different levels of response. When it comes to generating totally unscientific explanations for the results of my N=1 experiment, I’m coming to think that it might just come down to avoiding bread.

I did have a few moments of insane cramping and diarrhea over the past year. In each case, I could not ascertain a direct cause. It seemed to happen at random, but usually coincided roughly with some deviant behavior. I really can’t say if this is just me finding patterns in chaos, but when I eat a lot of nuts (pistachios are apparently equivalent to crack cocaine for me), I usually end up in trouble. Unfortunately, I was also eating some fruit at the same time I was gorging on pistachio, so maybe it was fructans in the fruit. I have yet to do any real exclusionary experimentation to isolate which food(s) were sending my guts down the toilet, mostly because “success” involves my guts trying to jump out of my body and down the toilet.

So, there you have it. I’m still “cured” despite adding in a number of foods which a year ago I would have predicted would cause a relapse. Who knows what I’ll be saying in a year or two. I’ll make one golden prediction: I’ll be less certain about the truth of the matter than I was when I started.

In the meantime, though: no colitis!

17 comments:

  1. Hi,

    I'm a newbie to the SCD, and have to say your blog was very inspirational. It's good to know that I'm not going to die if I choose to eat primarily meat for the next two years. =) If you don't mind, I'd like you bug you with some questions:

    1. How much was the cow you bought?
    2. How quickly did you go through the cow, and did you find that it was starting to get freezer-burned towards the end?
    3. Did you eat the organs? (I personally can't stomach the thought, but I'm curious from a nutritional standpoint)
    4. Any recommendations for an upright freezer?

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  2. Deschions,

    1) I bought my cow from a farmer here in NJ for $4.25/lb hanging weight. You end up getting ~60% of the hanging weight in various cuts. I've gotten wildly different sized cows (just luck of the draw), so I've spent between 1.5k-2.5k for my cows.

    2) The first cow I got in November, and by June it was mostly gone, or at least the easy to eat bits were gone. The second one was from August to April. And this latest one I got in August, still plenty of cow left :)

    I haven't had problems with freezerburn PROVIDED the cow stays frozen from butcher to your freezer. A couple boxes from my second cow had to stay out for a while while we bought a second freezer, and they ended up with some freezer burn.

    3) So far we've eaten the hearts, tongues and livers. Liver is the hardest to eat if you haven't grown up eating it, but there are some decent recipes online which cut down on the taste.

    I don't know if you really need to eat the organs or not. Some people say you'll die if you don't, other say it's irrelevant. I'm agnostic on the necessity of it, but since they're chock full of minerals and vitamins, pragmatically it makes sense to eat them if you can.

    4) Whatever you can get from Lowe's or Home Depot with free delivery! I don't really have a lot of experience here (two freezers is not a solid sample) but both my freezers are GE and seem to work just fine.

    Good luck with your diet! I hope it works out well for you.

    ReplyDelete
    Replies
    1. Hi again! Your meat diet now is at n=2. The SCD didn't work for me at *all* -- I had endless cravings for sweets, didn't like the special foods, felt miserable every time my friends munched on cookies around me, and was therefore grumpy a lot (my poor boyfriend. haha).

      So: 13 days ago, I started eating meat and occasionally some cheese; and drinking only water, seltzer water (nothing in it but carbonated water), heavy cream, and coffee. I feel *amazing* so far. And, even better, I have no cravings. Something may *sound* good in my head, but I don't actually want to eat it, if that makes sense at all.

      Playing the doubting game, maybe it's only temporary, but..... Thanks a bunch for writing this blog. <3

      Oh, and if you want to follow along to see how this second "trial" goes, I'll be keeping track of everything at http://thereluctantcarnivore.blogspot.com/ (I linked to your site in the intro post; hope that's okay). It's not much of a blog, just part "what do you eat??" and (after two months of food diary entries) part me using my biochemistry degree to try and explain why this works.

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    2. Sorry to hear about the SCD, although I'm not surprised. I know some people have done well on it, but for some reason whenever I look at the structure of it I wonder how anyone manages to make it work.

      Your intro post brings me back... nostalgia rush. The days when I still kind of worried if I was killing myself.

      I guess if I could change one thing, it would be eating more liver, even if I had to choke it down. I survived without obvious issues, but I often wonder if I could have accelerated things by eating more nutrient dense meats. Steak and rare burgers are great and all, and I still can't quite get over the taste of liver, but in terms of nutrients for your calorie buck, liver is crazy. And if you can lop a month off your healing time, it's worth it.

      So, yeah. Advice: eat some liver weekly, don't overcook your meat, and then work your way through the year. It'll be interesting to see how this works out for you! Good luck!

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  3. Hi there, I read your blog and would like to thank you for making this contribution. I'm 26 and suffer from Crohn's as well and had my right colon and a bit of my ileum removed in February.

    I have also tested several diets, from paleo, scd, veganism (The China Study), and others, but no where near as long as you have, usually only for a month or two. I had the best results on eating just vegetables, fruits and gluten free pasta and rice, no bread, no meat, no dairy, for 2 months.

    I tried the diet in Life Without Bread, but cheese causes my face to explode with acne. Usually when my gut is doing bad, I get bad acne as well.

    After reading your blog, I'm going to go back to meat (I only eat fish now), and going to remove carbs not allowed on the paleo/scd diet.

    Thanks again, please make sure you keep us updated, perhaps every 3 months?

    Cheers

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  4. Arete,

    Stories like yours make me wonder if the root cause really is just gluten/wheat proteins/magical wheat evil weakening your gut lining and allowing the immune response. I've heard one other person say a wheatless vegan diet was their cure.

    If I had made my conclusions at 2 months, I would have concluded that eating meat was an abject failure - I was losing weight, tons of lose stools... basically everything pointed towards it not working. But then at 3-4 months, it turned around. So whatever diet you choose, I encourage you to stick with it for six months or more. Obviously I'd encourage you to go with a meat heavy, wheatless and low starch diet, but I think with auto-immune stuff you really do have to give things a chance.

    Good luck with your diet!

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  5. I agree that maybe Lutz is correct.

    Gut diseases have skyrocketed over the last 30-40 years. Along w the move toward less meat/fat and high grain/starch.

    My daughter followed SCD to the letter for several years.
    She eats more widely now but the basic diet is low carb and low gluten....low, not none.

    She had similar experience w nuts. Since SCD does not give quantity, you get to figure it out yourself....the hard way.
    She did okay w the almond flour recipes, though.
    SCD saved her life!! She could not work and was barely able to leave the house.

    One of my neighbors healed her Crohns w Atkins.
    But even Elaine Gotchall said if a flare up is really bad, just eat meat. It is interesting that, in days gone by, Dr's recommended a low residue diet.

    Thanks for the update.

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  6. Thnks for yr up-date. Yr conclusion is exact as from other sources: to get result good enough for judgement one must stick with diet for 6 mnths at least. The biggest problem for me, personally, recently was the mix of meat-fat with veggy. It looks like the only meat-fat does not give me the problem with digestions. But I was not stubborn enough to continue for 6 mnths due to flash of inflammation after the meat(it could be not full digestion and penetration from the walls, I am not in Crohns but in AS, same shit from another angle though). Good luck and keep us informed with good and simply results. Roman

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  7. PFW, interesting that the default recommendation is again, meat.

    Dr. Blake Donaldson recommended this in the 1920s, and up until he retired around 1960. I don't know why he didn't recommend offal.

    His book, Strong Medicine, has finally been put online.

    It is one of my most favorite books, and as it is out of print, it's super that is finally online.

    http://babel.hathitrust.org/cgi/pt?id=mdp.39015003228171

    I finally added offal and more egg yolks on a regular basis and noticed much improvement.

    I hope you are continuing to fare very well.

    All the best to you. :)

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  8. PFW - GREAT BLOG! I started one about my all natural search for a Crohn's cure in 2010 when I was diagnosed. Although I have gotten significantly better, I still know its there, lurking, possibly working in other ways in my body. I came across your blog and feel strongly about trying 95% meat. Back in 2010 I tested pos for KP in a metametrix stool test but my doctor but he never mentioned it. I just recently found it again and looked up AS. I've got the typical ileo-sacral pain in my lower back and a few other weird symptoms. I've got a few questions for you:
    1. Wouldn't this theory hold up against MAP (mycobacterium avium paratuburculosis) as well, to starve them out? Why did you rule this bacteria out as the possible source of your Crohn's?
    2. How are you now? Have you been able to go back to carbs or do you still keep it pretty low?
    3. Have you heard from any one else doing this for Crohn's and do you know their outcome?

    Again, great source of information here. I applaud you. Once I start, I'm going to use your symptom chart to track my progress and send it to you. Thanks, Nikki
    http://crohnscrusade.blogspot.com/

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    Replies
    1. Hey Nikki,

      Been a while since I checked back here, glad to see other people are still finding it useful.

      1) Going in to this I didn't really have a good idea of what bacteria, if any, I was dealing with. I was just going on a very basic gut-feeling hypothesis: primitive cultures don't seem to get Crohn's, so diet HAS to matter.

      I stumbled on Ebringer after someone else pointed it out to me. I suppose this approach would work on any bacterial population that required lots of starch and fiber to be sustained, and fail on a bacterial population that could sustain itself in an all-meat generated gut ecosystem. I'd read about MAP prior to this experiment, mostly in the context of it being debunked as a possible source, so to be honest I didn't give it much thought.

      2) I'm still fine and still eating a lot of meat. I do eat potatoes/vegetables a lot more often now, and at this point I'd say my diet was more "Don't eat bread". I should plug all my food into one of the calorie counters and get a sense for my macronutrient ratios. At this point, I'd say I'm probably somewhere in the moderate to low carb range, with potatoes as the main carb source.

      3) I periodically get emails from people who have tried something similar with good success. I have not received an email or comment about it failing, but I doubt many people who try and fail at this are going to contact me to let me know. That doesn't mean they don't exist, of course.

      It sounds like you're already in remission from your previous efforts, in which case I'd caution that the full-on all meat treatment is probably not necessary. The more I reflect on this, the more I think that it's more about timing and adaptation than it is about inflexible rules; all-meat allows your gut to heal (assuming your disease is aggravated by high starch/fiber diet, I also think Crohn's is probably a blanket diagnosis for a lot of underlying issues), but once you've reached some level of healing, it's no longer necessary to maintain remission. But that's just me talking after three years without a problem. Maybe this year I'll have a flare-up and conclude that I shouldn't have gotten so lax.

      That's all also highly individual, of course, so if you do decide to do a period of all-meat I wish you luck with your experiment. Make sure to have a clear goal to hit - looking back, committing to a time period helped me get through the early rocky stuff.

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  9. My email is cdugas8@hotmail.com if that's easier for you to respond to. Thanks!

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  10. So, how is your health in 2013? what is your diet like?

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  11. Crap, I guess I do owe the blog another update post.

    short answer:
    1) I'm fine, no flare up or any problems.

    2) Diet: More lax, still no bread or gluten at all, limited fruit, meat in the middle of every meal. I tried ripe banana/egg smoothies for a while, no obvious problems. Eating fruit seems to cause problems (FODMAP?), jury is still out on dairy (I get some acne if I drink too much milk, some gas and larger stool volume, but otherwise I'm fine).

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  12. Thank you so much for documenting your experience with this diet! I've been researching how diet affects IBD and this log of your 'experiment'/diet is incredibly useful.

    From the somewhat limited resources out there concerning diet's affect on IBD (e.g., Lutz and Gottschall), it's hard to believe that diet does not affect IBD, as many doctors claim.

    People like your have been really helpful in leading me to change my diet, and I've found a noticeable difference in my health.

    Just wanted to say thanks!

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  13. Do u take any supplements? Probiotics, enzymes, hcl?

    I seem to have a hard time digesting meats and fats.

    Did u use coconut oil and butter? How many calories and pounds of meat did u consume a day?

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