Eating SCD

About me, the short story:

My name is Paul Stocker and I’m just a regular guy on an extraordinary journey. I’m eating the Specific Carbohydrate Diet (SCD) which has changed my life. It hasn’t cured the Crohn’s, but let me put it to you this way; no pain, no diarrhea, no symptoms. See the longer version below for the whole story.

Focus of this blog:

The focus of this blog is singular, but delivered in two main parts. First of all, I want to share my experience with the SCD as a way of giving hope and inspiration to those of you dealing with Crohn’s, Ulcerative Colitis and related problems. Secondly, you will find help in the form of recipes, reviews, news, tips, resources and videos all focused on living on the SCD. You can even ask me directly for help through the comments on any page or my email link in the sidebar.

I started the diet on January 1st, 2005 and made my share of mistakes. My hope is that you can use this blog to make your journey a little smoother.

Disclaimer

I am not a doctor. Nor am I a medical or dietary professional.

Therefore, the contents of this blog should in no way be construed as medical advice. It simply reflects my experience with the Specific Carbohydrate Diet as laid out in the book Breaking the Vicious Cycle.

Before starting any diet, you should consult your doctor. Do not change or stop your medications without consulting your doctor as doing so can be dangerous.

About the Specific Carbohydrate Diet (SCD):

Synopsis:

The Specific Carbohydrate Diet (SCD) is used to treat Crohn’s disease, ulcerative colitis, autism, diverticulitus, celiac disease, cystic fibrosis and chronic diarrhea.  The diet was popularized by Elaine Gottschall in her book Breaking the Vicious Cycle, Intestinal Health Through Diet.

The diet eliminates certain carbohydrates and other foods from your diet. These include, but are not limited to; all grains or grain products, liquid dairy, starches and thickeners, all gums, all refined sugars and almost all artificial sweeteners.

The major groups of foods not eliminated from the diet are fruits, most vegetables, many beans, meats and seafoods, honey, nuts, home made yoghurt, many cheeses, butter, spices and herbs. Meal portions and snacking are not limited.

The eliminated foods are considered “illegal” while the acceptable foods are considered “legal”. There are several exceptions to what is legal or illegal so this synopsis should be considered only as a general description of the diet. For example the diet prohibits thickeners, but allows unflavored gelatin. Most fresh vegetables are legal, but canned ones are not. Most cuts of meat are legal, but processed meats like sausage are not.

A thorough reading of the book is absolutely necessary to achieve success. I strongly encourage owning the book for the course of the diet as you will refer to it often, especially in the beginning. Cheating on the Specific Carbohydrate Diet is forbidden and will only delay your chance of success.

History:

In 1951 Doctors Sidney and Merrill Haas published their book, Management of Celiac Disease which showed the clinical success they were having treating and curing celiac disease with their Specific Carbohydrate Diet. In 1958 Elaine Gottschall took her daughter, severely afflicted with Ulcerative Colitis, to the same Drs. Haas. As a result, her daughter was placed on their diet and within two years she was symptom free. After a few more years on the diet, she resumed a normal diet and has retained her health.

Elaine wanted to bring this help to others, but Dr. Haas had passed away and she feared his diet would pass with him. She attended college and researched the mechanisms of the diet with the goal of writing a book that was accessible to the average reader. The results of her investigations is the book Breaking the Vicious Cycle, Intestinal Health Through Diet. Over one million copies of the book have been printed.

About me, the longer version:

I have Crohn’s disease. It was first diagnosed in 1983 after a couple of false starts. I was 17 years old at the time and had been suffering in silence for about three years prior. I was just a stupid kid and hid my pain from everyone. I suppose I was scared and not even aware that I was scared. It was a slow progression. I first remember having stomach cramps at the same time every day after lunch. Then I had to start eliminating things from my diet because they just hurt too much. Eventually, I was living on graham crackers and water. It was all I could tolerate.

I was losing weight and looking bad. Very skinny and pale. I kept telling my parents that I was okay, everything was fine, but they just couldn’t believe me any more. I resisted hard, but finally gave in. I was sitting on the toilet in a lot of pain. Some part of me must have realized my desperation because I let my sister come into the bathroom to talk to me. I don’t remember what she said, but she convinced me to let them take me to the doctor.

I saw a gastroenterologist for an endoscopy. He found a peptic ulcer (not Crohn’s) in my stomach, thought he had found my problem and we began treatment. Trouble was, I was getting worse and worse. We went back and I had a upper GI series with small bowel follow through. I clearly remember the X-ray. There it was, black and white, my disembodied gut up on the light box. You could see the small bowel almost all the way down until my colon. It was unmistakable. There was this thin line, six inches of string that connected the last of my small intestine to the large. That was the source of all my troubles. My intestine was almost completely blocked. The doctor said it was pretty clear that I had a classic case of Crohn’s disease. At least now we had a name. It was a relief just to have a diagnosis.

My parents were very concerned so we went to the Mayo Clinic in Rochester, MN. They are very thorough there. They needed to repeat all of the tests and then some. It really sucked and their diagnosis was no different. We tried to treat it medically at first with Azulfidine, but that did nothing but give me a dull headache. I don’t think there were any other Crohn’s drugs available at the time besides prednisone. A week later I had my first surgery; a 20 cm resection at the junction of the small and large intestine. It was May of 1983 and I weighed 85 pounds.

I felt a world of difference after the surgery. I could eat again. I rapidly put on weight and height and was doing well.

Six months after surgery though, I experienced my first bowel obstruction. Ouch. Fortunately, we were able to reverse it with a nasal-gastric tube and complete bowel rest. This means I couldn’t eat and there was a tube up my nose, down the back of my throat and into my stomach that had constant suction. No food or drink went through me and my bowel unobstructed itself. I amused myself by eating cherry popsicles and watching them get sucked out through my nose hose. Hey, when life gives you lemons, make lemonade.

In 1984 I had two minor flares and a partial obstruction that resolved itself. 1985 was a good year. Then there was the fall of 1986.

In September 1986 the bleeding began. I had just begun my sophomore year at college. One Saturday morning I woke up extra early because I had to sprint to the bathroom. I made it there in time, but was in for a nasty surprise. It was all blood. Pints and pints of bright red blood. The metallic smell was overpowering. I must have bled all night long. I finished up in the bathroom and woke my roommate to take me to the hospital. The doctor started me on a 40mg Prednisone taper and Azulfidine.

Forty milligrams of Prednisone stopped the bleeding, but I couldn’t taper more than half way down without bleeding. So we tried a longer taper. I bled again, so we tried an even longer taper. That failed too so we went back to Mayo. They did bowel studies and found that even though my bowel was badly inflamed at least it wasn’t perforated. It was November and we decided that I needed my second surgery. They took out about six inches in the same place as last time.

A week after surgery I was discharged on Prednisone and Azulfadine. Eleven days later I was bleeding again. I thought it was all over. I was sure I would die. I was admitted to the hospital and given two units of blood one day and three the next.

I did not die.

The irony is that as effective as Prednisone can be at stopping bleeding, it can hamper the healing process. A colonoscopy showed an ulcerated connection at the surgery site. I finally finished taking Prednisone in early March of 1987. I had been on pretty high doses for about six months. I was manic depressive, constantly hungry and had that moon face. Prednisone – the wonderful, awful drug.

And then came a nasty, surreal event in 1988. I was on vacation with my family. There were a lot of us packed into a condo and I was sleeping in the same room as my parents. Early one morning, my mother woke me up to tell me that I had just had a seizure. What? What the hell? She heard me moan and saw me convulse, there was no doubt in her mind. So much for the vacation. We had to travel for an hour to get to the hospital. They put me on Dilantin and we began the 900 mile drive home. To appreciate the surreal nature of this experience, imagine that you go to bed happy and fine one night and someone wakes you up the next morning to tell you that you’ve just been in a car wreck. Your response might be the same as mine, “you’ve got to be friggin’ kidding”. I had an EEG when I finally got home and it showed an anomaly, but they couldn’t explain what caused it. The diagnosis was atypical seizure disorder – a medical shrug of the shoulders.

I’ve recently leaned that Crohn’s disease “can cause neurological complications, reportedly in up to 15% of patients.” This bit of info is from a study entitled “Neurologic and neuropsychiatric complications of Crohn’s disease” by Drs. Ahmed E. Elsehety and Tulio E. Bertorini.

The book Breaking the Vicious Cycle contains testimonials from parents of autistic children who have benefited from the diet, so maybe it’s not too far fetched to hope that this diet could also address my seizure disorder. See some of the testimonials on the BTVC website. I’m well controlled, but it’d be nice to get off of the Dilantin. I hope to try tapering off it someday. Who knows what the long term affects of that drug will be on my body.

The late 80’s and early 90’s saw just one minor flare. I was still symptomatic, but I had indoor jobs not too far from bathrooms so I just put up with it.

In 1996 I decided to try a drug for my Crohn’s to see if it would help. I tried Pentasa (Mesalazine). The doctor put me on 4000mg a day. Yes, four thousand. That’s four pills four times a day. And they were big honkin’ suckers too. It made me sicker than a dog. I felt much worse on the Pentasa than I did with the Crohn’s alone. I quit it after three weeks.

I was back to grinning and bearing it.

In 1999 I moved to Illinois to get married and settle down. In 2003 I finally decided to get established with a local Gastroenterologist. It did not go well. At my first consultation I gave him my history, including my experience with Pentasa and my relatively long period without serious medical intervention (last surgery in ’86). He wanted to put me on Imuran (Azathioprine) to delay a future surgery. I said I’d look into it, but at the same time expressed my skepticism. He basically threatened me, saying “do you want to have surgery Paul?” Keep in mind, that this was an initial office consultation. He hadn’t done any bowel studies at this time, much less palpate my abdomen. My quality of life wasn’t great, but I was managing pretty well. I had a part time job from home and was raising two small kids.

We scheduled a colonoscopy since it had been so long. I don’t remember what the doctor said right after the procedure because of the sleepytime drugs, but my wife told me later that he wanted to schedule me for surgery immediately. He was adamant that I need emergency intervention.

I declined. One of the little facts that I have retained is that statistically speaking, having surgery for Crohn’s increases your risk of having more surgery for Crohn’s. Not to mention complications like obstructions, adhesions, infections, etc.

I was then scheduled for an upper GI with a small bowel follow-through. Yet another ride in the barium bitch seat. The study showed that the Crohn’s was limited to the same place it’s always been: the last six inches of my small intestine. The Doctor doing the exam characterized the area as moderately constricted. He didn’t see any problem with the flow of barium through that area. I felt reaffirmed in my no-surgery stance.

Back to my old normal.

In late November of 2004 I had a flare up. It was precipitated by an especially stressful time and I was admitted for a night and discharged on a 12 day prednisone taper. While I was in the hospital I consulted with a different gastroenterologist. He grudgingly agreed that it was remarkable that I had been able to avoid surgery for 17 years without drugs, but he did suggest that I try Asacol. I declined and told him about this diet that I was going to try. He literally rolled his eyes. I can picture it clearly and it still pisses me off.

On January first 2005 I began the greatest experiment of my life, the Specific Carbohydrate Diet. I was able to see definite improvements within ten days. It has been a difficult adjustment on some levels, but what hasn’t been hard is the absence of pain, the normal amount of trips to the bathroom and just plain feeling better. I have learned a lot and my only regret is that I didn’t know about it 20 years sooner. It’s stunning to imagine the amount of suffering I could have avoided. For the first time since I’ve been diagnosed, I have real hope for my future. My wife and children may never have to sit in a waiting room worrying about how my bowel surgery is going. I can be a social animal again. I can leave the house without thinking about where bathrooms are. I can camp. I can golf. I can travel. I don’t have to take toilet paper with me. I can play hockey.

My symptoms are gone and I can live.

So now what? I have been so excited about what this diet has done for me that I want to share my experience with everyone. Therefore dear reader, dig around my site. Read the BTVC site. Check out the book. Check out the rest of the web and ask me questions. I would be happy to help.

Go ahead, give the diet a try. What have you got to lose?

For the latest updates to my eating SCD story start with this post from August 26, 2009.