Yes, much like Batman had to become the Batman, I was not born with a hundred gluten/grain/starch/sugar free recipes in my back pocket. My origin story starts as many do – with a catalytic moment. For me, that moment was when I was informed of my Ulcerative Colitis diagnosis .
I was diagnosed in 1994 after dealing with some visible symptoms – mostly blood in my stool. I was told at the time to take Azulfidine (sulfasalazine is the generic) and that I could otherwise eat or drink anything that I wanted.
I took that advice and after a year of living with increasingly more and more dire symptoms, I went to a different doctor. Very poor retention and/or absorption of foods (to the point where if I ate a Whopper from Burger King, I’d see sesame seeds about 4 hours later) had led to me lose quite a bit of weight, and I was losing blood as well. My new doctor did some blood tests and found that I was anemic, had no Iron stores and was pretty much wasting away. He later told me that with the amount of blood left in my system, had I lost all that blood at one time (car accident, etc) I most likely would have died, but my body just adjusted to losing a bit over time to the point where it was getting by with so little.
I started getting Iron shots as my stomach couldn’t handle a supplement. I think I was getting 2 or 3 shots per week. My new doctor said “You can’t eat just anything” and told me to cut out a LOT of foods that I was eating that would not help – mainly insoluble fibers. I pared my diet down to mostly chicken & rice to sort of “zero out” my system. My doc suggested going very basic and then adding other foods little by little to see what my system could tolerate, and so I did. I drank mostly juices, laid off the sodas and alcohol. Ate the bland diet as is usually called for – toast, crackers, chicken (no seasonings) and rice, etc.
The short of it is, I credit that second doctor with saving my life because he identified the problems over and above the previous docs I had seen. He got me back to healthy again, and taught me to manage my symptoms accordingly. I still took sulfasalazine and I would go into remission, would then forget to take the drugs (I don’t like being on drugs anyway. I feel that many times they mask a problem) and be off them for months at a time. My symptoms would return and I’d go back on the drugs to try and mitigate them. Sometimes it would help, sometimes not. I never found a “trigger” food or drink that would bring me out of remission, or cause a flare up. Sometimes I could drink beer for weeks and not go back into a flare. I could eat loads of ice cream and not see a difference in my health. But somehow, sometime, the symptoms would creep back. Starting with blood.
Fast forward to March ’04. I’d been in a colitis flare for about 2 months, the sulfasalazine didn’t seem to be helping, and I was wondering what my options were. I joined a Crohn’s and Colitis group online and I was reading through the discussion threads. Some people in that group had luck with some treatments, some had ileostomies, etc. Then I saw a lone link to a book called “Breaking the Vicious Cycle” that a friend in a different online community had recommended a few months prior. I went to check it out on Amazon and found over 120 reviews of the book (there are now almost 650!). The diet that was described in the book is called the Specific Carbohydrate Diet, or SCD. Some people said that it didn’t work for them, that it was too hard, etc. Most were ecstatic in the results they got for their various diseases (Crohn’s, colitis, celiac, autism). What it amounts to is a diet, based on science, about what can set the gut off. The author, Elaine Gottschall, had a daughter who was diagnosed with Colitis at 4 years old, I believe, back in the 50s or 60s. After going to various doctors and such, none of whom were much help and telling her that only surgery would cure her daughter, she talked with Dr. Sidney Haas who asked her what her daughter ate. Elaine claims it was the first doctor to ask her that question.
Dr. Haas basically prescribed a very strict diet, and here’s where the science part comes in. (Elaine has since gone on to get degrees in biology, nutritional biochemistry, and cellular biology to support the theories.) Basically, she has done more work, but has come to the conclusion that what is eaten by people who have the diseases is what feeds bad bacteria in the body. It’s not that the bacteria are inherently bad, but they’re part of the problem in people with Crohn’s or Colitis.
The diet is easier to explain as the things you cannot eat. No grains, starches, refined sugars, or uncultured dairy (examples of cultured dairy are many cheeses and yogurt). Of course, this eliminates many things that were previously considered “bland” – rice, potatoes, pasta, etc. The things you can eat, once you get over the restrictions, are many and varied. Fresh meats, vegetables (not canned, though, sometimes there are “illegal” additives), fruits. Eggs. Nuts. Etc. Some veggies might not be allowed depending on the severity of your condition. If you read the BtVC website, you’ll get the idea. I’m just giving a brief outline.
When I started on the diet, I just wanted to see if it made any sort of difference. I figured, at worst, I’d be right back where I was, which was somewhat managable, except for flareups. At best, I would be cured, as many have said that they have been (including Elaine’s daughter). Elaine suggested being on the diet for at least two years. That’s at least two years without pizza crust, bread, soda (that’s pop to the rest of you in the midwest ;), fettucini, a glass of milk, french fries, etc.
Starting the diet back then was tough for me because my wife was out of town, I was caring for our two daughters, I came down with a cold, and it was difficult to get the nutrition I was looking for and needing from just what we had in our cupboards. My parents were supportive (with the diet and helping with my kids – they were planning on helping some anyway) and we were cooking things that I could eat. I went to the store a couple of times and bought some more “legal” food and started on it pretty strictly. The first week was very rough. Being sick didn’t help, and I was tired and hungry. The second week, I felt like I was getting better, both from my cold and internally. As the week progressed, I was surprised at how much better my colitis was doing. I noticed that I was making fewer trips to the bathroom. I noticed that overall, in that regard, things were improving.
I’ve kept on the diet for the past 10 years now. The first couple of weeks on the diet were nothing short of amazing to me. I only had to make one trip to the bathroom on the Saturday and Sunday of the second week, for what I usually would have gone maybe 3 or 4 or more times in the morning before I’d go to work, a few more times in the morning (mornings have always been my worst time of day), maybe once or twice in the afternoon, maybe once at night. But I only went once. *Once*! Even when I was in remission before, I still had to go more than once, and, shall we say, things still weren’t as they are for “normal” folks. Those first couple of weeks it was pretty normal for me. As normal as I had been in the 10 years prior. I felt that, if things continued, this could be the second thing that saves my life.
In the 10 years since, I can’t say that I’ve been cured by the diet, not by a long shot. There have been a couple of times in the past few years that I’ve been on prednisone to help get my symptoms under control. I’m not sure what caused those flares, but they were some of the worst I’ve had since I was really sick back in 1995. I guess you could say I’m lucky in that a short dose of Prednisone (tapering for less than 10 days) is enough to get my body back on track. When I’m in a flare, I still can’t really identify what caused it or how to get out of it, although the SCD chicken soup seems to help.
I have followed the Specific Carbohydrate Diet very strictly for over 10 years and have a lot of good recipes to show for it. I only take some vitamin supplements, and no drugs (excepting the occasional Imodium). My cholesterol and blood pressure levels are low. I lost about 50 lbs in about 4 months when I first started the diet (see the picture below) – which was too much, too fast. I realized that I wasn’t eating enough fats in my diet and corrected that. Since then, my weight has stabilized around 170 lbs for a 6’2″ man.
My quality of life with Ulcerative Colitis has been most affected by my needing to know where bathrooms are at all times. Knowing where to get off on the freeway should the need arise. Not being able to take public transportation because they don’t have toilets. Feeling uneasy about going places that I didn’t know the “bathroom situation”. When my kids were babies, I would think about what later years would be like, going to field hockey games and the like, having to scope out if there were restroom facilities at the field or not. It’s a horrible, creeping feeling that disturbs and informs everything I do. Like at parties or being out with friends, all I want to do is hang out and have a good time, but I spend part of it wondering about my problems instead of just being able to relax. A trip into DC many years ago with my kids was just this side of abject terror for me, hoping that I’d have places to go to the bathroom if I needed to. I even skipped going to a Civil War battlefield near my sister-in-law because….it was just a field. Nothing else, no facilities. “I can’t go there! What if…?!?” I’ve found a few things that have helped with the anxiety in the intervening years – mostly daily meditation – but nothing natural to heal the symptoms completely.
Please feel free to ask me any questions about my experiences with Ulcerative Colitis or life on the SCD. I’m very open about my life in this regard, because after years of feeling ashamed or embarrassed about it, I’ve come to my peace with my disease. I know that I’ve learned a lot from having UC – compassion for others, patience for myself, and love of life. I’ve always had a pretty good life health-wise, even with colitis, and I realize that I could be so much worse off. If there’s any way I can help you, let me know either by leaving a comment here on the blog or sending an e-mail to firstname.lastname@example.org.
This is me 3 months after starting the SCD in 2004. You can see how big the XL t-shirt is on my now Medium-size frame! Even with the quick weight loss, I kept buying Large t-shirts for years.