The SCD and Flare Ups

"I've been on the SCD, strictly, without cheating, and I got a flare up. How can I trust the diet is working?"

I've read lots of books on UC and Crohn's, diets and nutritional aids to better health. I keep up with reading testimonials about the SCD; chats, forums, you name it. This thought, or sentiment is a common theme I see. Then, I usually see a later post by the same person saying the flare didn't last long and they're sticking with the diet. I've even seen folks post months or a year later encouraging folks to stay on the diet--it worked for them.

Small flares can be common, especially at 3 and 6 months. No one knows why, really. There are theories, but since the diet hasn't been studied, no one can tell for sure. It most likely has to do with the bacterial reproduction cycle, and die off--Major die off events can trigger flare-like symptoms.

I had 2 such events, and they were awful, though they only lasted about 24 hours. At about 3.5 months, during my normal bike ride home, I began feeling that familiar achy, tired, out-of-body feeling that I get before a bad spell. I got home, collapsed on the floor and began shaking uncontrollably. I had fever, itchy skin, and diarrhea--even though I was following the diet strictly. It happened again at about 5.5 months, but this time it wasn't as bad. Progress.

It took me a while to get the hang of the diet, what I could eat and in what quantities, so maybe I was doing something wrong. But many people experience small flares during the first months on the diet as your body readjusts itself. You need to balance taking care that you don't put yourself in danger (too much blood or diarrhea can put you in serious trouble), but know that--for whatever reason--small flare ups can be common in the beginning.

Stick with the diet. It works for a large amount of people. As long as you're seeing improvement, you're on the right track. Log your diet and symptoms so you know if you're improving.

Bottom Line: Small flare ups in the beginning are common. Track your diet to make sure that food isn't the problem, and stick to it! You should see improvement over time.

Ammendment to SCD details part 1

I realize that my SCD details posts will not be comprehensive, so I will be better about linking to relevant material in the future. For now here are some links to help you learn more details about the diet.

Breaking the Vicious Cycle (Homepage for Elaine's book, which formally introduced the SCD. Start here.)
SCD diet.org
Kids and the SCD
The Healing Crow (lots of good detail)

Read as much as you can. I'll be better about inserting links in my posts as I see them, and putting the best ones on THRIVING's homepage.

Onward to health.

The Diet part 1, ABC's of the SCD

I've outlined, blog-length, the theory behind the SCD, and some steps to getting started. Now I'd like to pause here, and take a look at some of the details of the diet.

If you haven't already, get a copy of the book, Breaking the Vicious Cycle. It describes the diet in much more detail than I could in a blog. That said, I decided to outline the diet here, because I wasn't completely satisfied with the organization of the information in the book. So let's get started...my way.
Remember the principles:
1. Intake nothing that will feed the 'harmful' bacteria; sugars that will remain partially undigested when they get to the colon.
2. Focus on what you CAN eat, not what you can't. It'll help your attitude.
3. Here are broad categories of what you can eat:

--Lean meat
Watch for additives. Stay away from things 'enhanced' with things like broth, natural flavors, etc. Even organic meats can have this. In the ingredients, you want the label to say, just 'chicken' or 'cod' or whatever meat you're buying.

--Aged Cheese
Block cheeses aged more than 6 months have negligible lactose content.

SCD friendly Yogurt
What's this? It's homemade, fermented for 24+ hours to get rid of the lactose. The link below has instructions, but to be honest, they weren't detailed enough for me, so I will post my own soon. Look for them.

--Most vegetables
Refer to the list I linked below. I had to cook all of my vegetables for 4 months before I could start eating raw, for example, lettuce. Steaming vegetables may lose some of the phytochemicals, but most of the vitamins remain intact, and it breaks down the fiber matrix, making it easier for your injured digestive system to handle.

--Most fruits
Same with the fruits. I had to cook them for about 3 months (vegetables were harder for me) before I could eat raw. Stay away from fruits with seeds (berries are a good example) until all your symptoms have been gone for at least 3 months. Stay away from fruits with lots of insoluble fiber, it's hard on your injured system. So, peel your apples, your pears, even your grapes; those skins represent the insoluble fiber I'm referring to. A note on canned fruit: It's nearly impossible to find canned fruit that's in it's own juice (which is what you want), where that juice is not from concentrate. Concentrated juice is a no-no because when companies reconstitute they often add sugar. Just be careful with canned fruit and the quantity of fruit in general. There's a lot of sugar in fruit...

--Undoctored nuts
I love Trader's Joe's 'raw' nuts, undoctored. You can do nut butter too, but NO ADDITIVES. Ingredients: nut, salt. Anything else in it? Don't buy it. Remember, fudging a little, can set you back.

--Honey as your ONLY sweetener
Your ONLY sweetener. ONLY...ONLY honey.

--Real butter
No spreads, no additives, no, no.

--Olive Oil and a couple of other select oils)
Refer to the list below for 'legal' oils.

Here is a more detailed list of 'legal' and 'illegal' foods

My suggestion? Print the list and put it on your fridge. Consult it each time you cook or go to put something in your mouth. But remember, just because something is legal, doesn't mean you can handle it. My mistake was eating LARGE quantities of whatever legal food was on the list. BIG mistake. It kept me sicker longer. I became bewildered at my system, and frustrated. Don't follow my footsteps here. Track your symptoms, track what you eat daily (we'll get to that tomorrow). It's the only way. Elaine, in her book, outlines the first few weeks on the diet. I will try and do the same as it relates to my experience.

Onward to health.

The decision to start, Family

Last time, I proposed 2 steps to getting started on the SCD: Make the decision (for real), and loop in your doctor. But I forgot the most important--involve your family or those with whom you live. Why? Without their help, your bound to fail and then it's back to medicine...

It took about two and a half months for my wife and I to come to the decision to do the SCD. I decided in a week, but she took longer. We wrestled with seemingly mundane questions like, "will we ever get to go out to eat together?" Actually she wrestled with them mostly, I didn't really care. I thought we'd just find other things to do (and we have). But eating out wasn't what she was really dealing with. She was wrestling with the question of whether, if I started the SCD, would the rest of the family have to too? She didn't want to give up bread and pasta, eating rice or putting sugar in her coffee. It took the better part of 2.5 months for her to feel like this was her decision too, but it was worth it.

Our family is pretty traditional on the surface, in that my wife does much of the cooking, I'm gone ~12-13 hours of the day for work. This meant that if I went on the SCD, she would be my primary care-giver, my pharmacy so to speak. We (but primarily, she) would have to learn to cook all over again. You can see that buy-in from my family was essential. When I craved ice cream or real bread, oatmeal or pasta, she encouaged me. We made peanut butter brownies, or blueberry muffins, frozen yogurt or some other tasty treat that kept me on the narrow road. Who will help you stay focused when it gets hard?

Make no mistake, no matter what your living situation, buy-in from those you love and those you live with is essential. They will keep you going when "you can't go another day without sourdough".

Onward to Health.

Time to get going, ABC's of the SCD

OK I have an admission to make: I had grand plans for the layout of this blog, but got too busy with work over the past 5 months to carry them out. Sad. Sorry. Now that work has settled down, I pledge to carry out those plans. This post is the second in a series of posts that will, I hope, outline, not the contents of Breaking the Vicious Cycle, but help you to LIVE on the diet. I'm an athlete so that is my context, but the principles will hold for anyone. Here goes...

Step One: Decide to do it. Sounds simple, huh? It's not. No one REALLY knows what the success rate is for the SCD. I've heard some say it's around 75%, and Elaine gives no numbers in her book. The decision to do the SCD may very well change your life; no more medicine, more energy, and most importantly, relief from symptoms. But you have to decide to do it; decide you are worth it. It's a big deal, or was for me at least. I gave up beer, for goodness sake! People will prod you with reminders of the things you will have to give up: Beer, Bread, Sushi, (most) restaurants, etc. I always remind people that what I really gave up was a life of medicine, bleeding, diahrea, surgery, and I've saved myself uncounted thousands of dollars in medical bills in the process. In starting the SCD, you give up a few pleasures (you'll discover new ones, promise) in order to regain your life. The cost benefit is easy, but there will be times when it doesn't feel easy. In this country, social events are often centered around food. How will you participate without feeling excluded, marginalized? That's an example of something you'll have to figure out. But stick with the diet. Here are the first two steps in short:
1. Decide to do it. Commit yourself to 2 months, error free. No lapsing, no snitching. If you see improvements, commit yourself to 2 more months, and so on. I'm to the point now where my current commitment is 1 more year. Work up to it.
2. Tell your Doctor what you're doing. He/She will advise you that you're taking a risk. Acknowledge their expertise and the risk. Ask for their help along the way. You'll be surprised. I have shown my doctor the results of the diet (using tools I'll introduce later), and he has agreed to advise me for the next 18 months while we 'investigate' the diet. He even wants to learn/read about it. Score!

So, commit yourself. And when you have questions, please ask me. The goal of this blog is to share with people the life I've recovered through the SCD.

Onward to health.

The ABC's of the SCD, II

The short-short version of the theory, or basic etiology of UC and/or Chron's: (this does not take the place of reading Elaine's book, 'Breaking the Vicious Cycle', which contains much more detail. I recommend also delving into the medical literature. You'll be surprised what you find!

In those genetically predisposed, a major disruption to the bacterial flora balance in the gut happens (how many disruptions or how severe the disruption needed to produce permanent inflamation, ie chron's or colitis, is unknown). This could be from antibiotics, illness, etc. This distruption or series of disruptions causes a negative shift in the composition of the bacterial flora in the gut. This shift away from an ecosystem dominated by a suite of bacteria whose life cycles and respiration byproducts are well tolerated to an ecosystem dominated by bacteria (or bacteria and increased yeast) whose life cycles and respiration byproducts are not well tolerated is the most plausable theory I've come across. This 'new' composition of bacteria in the gut, their lifecycles and respiration byproducts are what trigger the epithelial immune system, and cause the inflamation. The SCD is essentially a natural version of the elemental diet, and proports many of the same effects (though it's not a substitute for the elemental diet, for obvious reasons). It allows no food which would feed the harmful bacteria and facilitates a positive shift in the floral composition of the gut; thus, reducing or in many cases eliminating the inflammation. If this theory is correct (it has proven so in my gut, at least), then we could consider UC and Chron's, not a disease, but a condition which, like mild diabetes, can be treated with diet and lifestyle changes. What a shift in thinking that would be!

The ABCs of the SCD

One of my biggest complaints about the SCD, is that it wasn't laid out for me logically. It wasn't intuitive. So all of the posts under this title, I will attempt to lay out the diet in a fashion that is, I feel, logical and intuitive.

So stay tuned later this week for the first of what I hope to be a series of detailed posts about living on, and following the SCD.

Hunger Levels and the SCD

When I first started the SCD, I noticed a difference in four days. Yes, four days. But I got lots of crazy cravings: coffee (I don't drink coffee), cigarettes (don't smoke either), sausage, sugar, you name it. It was frustrating. I didn't know what was happening to my body, but after 12 months of constant flare up, 2 rounds of prednisone, Immuran, Colazol, and Asocol (all the drugs failed by the way), I wasn't about to give up after only a week. I later learned that cravings are a normal effect of the change in diet--that doesn't mean they happen to everyone, but they aren't uncommon. Wheew, I wasn't crazy.

For athletes, we need more calories than normal folks. My first peice of advice: put 'training' aside for a while. You need time to heal, figure out the diet, and assess your progress. Exercise, by all means, but don't 'train' until your symptoms subside, and you get a handle on the diet and your health. Enjoy some time with your loved ones.

You will do better on the diet eating smaller, frequent meals. The frustrating part, is that you may not feel full like you did after a meal on your old diet. During the healing process, I would get so frustrated, because whenever I ate the amount of calories my body needed, I would get sick, but whenever I ate less so that I wouldn't get sick, I lost weight. I lost 15 pounds the first 3 months of my time on the SCD--But you don't have to. That's why I'm writing this post.

Below are some principles I've learned that may help you:
1. Rest and figure out the diet. Don't stress over not training.
2. Keep a food and symptom log, religiously. I will have one posted here soon, or the Chron's and Colitis Foundation of America has one you can download for free.
www.ccfa.org
3. Eat sensibly, and don't cheat. The food log will help you to know which foods irritate you and which don't. Beware, some foods you may be able to tolerate in small quantities, but if you gorge on it...well--all things in moderation for now, okay? As athletes we tend to have addictive personalities--resist. At the height of my weight loss I paniced and ate an entire jar of peanut butter. Why not, right? It's SCD legal--I was sick for 3 days: fever, chills, shaking, bleeding, the works.
4. Exercise, but don't challenge your body like you would training for an event. It's hard, I know, but resist. You need time to heal.
5. Suplement. Depending on which you have, Chron's or Colitis, you may experience various absorption related deficiencies. True, a 'normal' person may not need to supplement, but we do. As an athlete you may already be used to this. Freeda makes SCD friendly vitamins. I've found the best prices at KosherVitamins.com
6. Be prepared for your grocery bill to go up significantly. There's no two ways about it. You're eating more fresh foods, all organic (hopefully); honey and almond flour are expensive. I'm working on getting my Flexible Spending Account at work to cover the extra since this is a medical treatment. If it works I will post guidelines and what I've learned as a seperate topic.
7. Get a nutrition book. Learn how your body works, and you'll learn faster to read the signals it's sending to you.
Below are some books that have helped me.

"Eating Right for a Bad Gut" by James Scala. Besides the fact that you couldn't have a worse or more embarrassing title, I learned a lot about nutritional suplementation in this book.
"What to Eat with IBD" by Tracie Dalessandro.

Make no mistake, however, I don't advocate any other diet than the SCD as laid out by Elaine G. in "Breaking the Vicious Cycle". with that said, I did learn from these two books.

"Krause's Food and Nutrition Therapy" 12th Ed. This is a nutrition textbook and is a super helpful reference.

Until next time...