Chronic disease is never convenient. Without warning it can force one to put life on hold in order to work through the roller coaster of physical and mental challenges until relief comes in the form of a prescribed drug, a hospital visit, surgery, or maybe a temporary remission. Inflammatory bowel diseases (IBD)—ulcerative colitis and Crohn’s —are chronic diseases that affect children and adults at any age, but statistics indicate that they appear most often between the ages of 15 and 30, in the prime of life. This is exactly when Tucker Sweeney’s ulcerative colitis showed up, uninvited.
Tucker was diagnosed with ulcerative colitis in July of 2005, and by March of 2007 he was fully committed to the Specific Carbohydrate Diet (SCD). Tucker’s journey to finding and ultimately following SCD is captured in his book, Two Steps Forward, One Step Back. He describes his experience tackling the onslaught of ulcerative colitis and how he eventually achieved success with SCD. His book is an invaluable first person account of how to navigate SCD’s tricky adherence guidelines. Tucker managed to keep his life going, and continued to challenge himself as an athlete and student.
Tucker’s mother, Carol Thompson, shares her experience and efforts to help Tucker adhere to SCD, and a forward by Tuckers’ wife Katie (a family nurse practitioner) provides her experience with IBD patients and insight to the challenges faced when being diagnosed with IBD.
Tucker and his mother took time to answer my questions about their experience with SCD thus far. I think Tucker will inspire those of you that are considering SCD or any other dietary change that could improve your health.
Here is Tucker’s interview, followed by Carol’s interview.
I’m in awe of your strength and determination to power through ulcerative colitis flares in order to make SCD work for you. After reading your book I have come away with a new appreciation for mind over body. What kept you going initially and what keeps you going now?
In the beginning, I was not committed to the SCD and instead wanted to try the other options that, in my opinion, looked easier to tackle. SCD was there as an option but I knew I was not ready to commit to it. It was only after the medications stopped working. It was after Asacol, Colazal, Sulfasalazine, and finally Prednisone that I realized I was running out of options. I also kept SCD in the background because I was scared of the diet itself also not working, thus leaving me with surgery as my last option.
I was seriously sick before I made the commitment to follow the diet 100%. There were many months where I thought I was still helping my condition by following the diet 75%, eating a piece of bread here and there or a sugar ingredient now and then. Let me tell you from experience this strategy does not work. It’s an all or nothing game with the SCD and it was only after committing to this that I started to see improvements. It was this strict adherence theory that kept me going with the SCD. I was putting so much effort into keeping my diet SCD legal and was seeing progress that I did not want to do anything that would jeopardize this progress. In my mind, one lick of sugar or one crumb of bread could be detrimental. Why risk it?
Now what keeps me going is my current healthy state and how good I feel. I would not change or risk my health for something as simple as certain sweets or grain-based foods. No way! I have always thought that the diet was way easier to deal with than living with constant ulcerative colitis. Easy choice in my mind.
Another thing that keeps me going is I now love the way I eat! It does take time getting used to the restrictions but soon you become skilled in the kitchen, knowledgeable about your nutrition choices, and a pro at making healthy and nourishing SCD meals. This is also a great time to be following a diet such as this due to the huge increase in food blogs, cookbooks, and websites that cater to diets like the SCD. It’s a very exciting time for us, and a tasty one as well!
Many readers ask about travel tips, and how one manages to travel while following SCD. How do you prepare for a trip (both big and small excursions) and what would you say are your top 5 travel tips for folks following SCD?
Being well prepared for the upcoming trip is the biggest piece of advice I can give. Make sure you are giving yourself ample time to plan, cook, and strategize. Before most of my trips I have to spend at least one full day cooking and preparing foods. I make muffins, biscuits, burrito wraps, something sweet like cookies, lots of fresh vegetables and fruits, etc. It is also a good idea to cook a whole meal that you can eat without having to prepare or heat. Something you can eat on the go, something like quiche or a sandwich.
If you are traveling by plane you will need to pack a good base of foods but also have somewhere to cook. Rent somewhere with a kitchen. This makes things so much easier and is a great way to immerse yourself in the local food culture. The lesson here is don’t rely on eating out for every meal. This will become really old and frustrating and you will ultimately be eating illegal ingredients no matter how well you convey your situation to the restaurant.
Here are my top 5 travel tips:
- Prepare before the trip
- Bring ample food options
- Have access to a kitchen or bring pots, pans, and a camp stove.
- Don’t plan on eating out for all your meals. Choose one meal a day to eat out while traveling.
- Travel with people that are supportive of your dietary needs. Cooking SCD does not have to be a pain and instead can be a fun activity. Think Ramen noodles vs. beautiful stir-fry.
Do you have any tips for college students who are following SCD?
The college scene is tough when you have major dietary restrictions. I went through a time when I gave into peer pressure because I did not want to be labeled as strange because of the way I ate. But when I finally hit rock bottom and decided to commit 100% to the diet I gave up trying to be something I was not, which was a healthy person who could eat anything they wanted.
The SCD is a lifestyle change that requires you to modify your routines. Going out to eat, ordering take-out, and drinking at bars are really difficult to deal with, especially during the beginning. I had to give up these “normal behaviors” and instead replace them with new ones like learning how to cook. Your true friends will recognize and support you for this while others will not. It also helps to explain that you are not eating or drinking certain foods because it makes you really sick, not just because you can’t. Food allergies are much more common nowadays. Friends may feel bad for you, but tell them you are happy for the way you eat because it keeps you healthy and off your deathbed.
Getting help from friends and family is really important while in college. Sending a care package with some essentials can go a long way to help out during stressful exam days. The biggest help though is to send them some cookbooks and ingredients and have them learn how to cook! This will be the biggest and longest lasting gift you can give. Plus, cooking can help your social life as well. What’s more attractive than a guy or girl who can cook an amazing meal?
Would you modify anything about SCD, or do you think everything is spot on in terms of the scientific facts and food restrictions that make up the diet?
The science behind the diet makes pretty good sense to me and as of now I have not found anything that I would advocate to change for all people that follow the SCD. The biggest thing that I have learned is that we are all different and we all have different forms of IBD’s (Crohn’s, ulcerative colitis). Some have mild symptoms and can get away with eating slightly off the diet (most of the time with added medications) while others, like me, have had to remain very strict even after 6 plus years on the diet. Certain legal foods also can have varying effects for people. Some can’t handle peanut butter while others can. Some can eat loads of almond flour pastries while some cannot. Listen to your body very closely. Look for signs that the food is not agreeing with your system or that you need to slow down a bit on a certain food. I also think it is wise to eat a varied diet that includes many food groups. Make some coconut muffins instead of almond flour muffins once in a while for example.
What’s your favorite SCD recipe?
The crunchy energy bar recipe is something that is really easy to make, taste great, and is a perfect match to high output activities. The bars hold up great while on adventures, yet are refreshingly different from the other energy bars out there.
Carol Thompson is Tucker’s mom, and was an integral part of Tucker’s support system. Those who are lucky enough to have a family or friend supporting you during this pivotal lifestyle change will appreciate Carol’s dedication to learning about SCD and providing support.
It was great to read your perspective along with Tucker’s. It was like reading the script of a play, which gave the book more depth than a typical memoir or biography. Kudos to both of you. I also felt all the emotions you did, being a “caregiver” and mom. It reminded me of the many times I would break down in the shower, crying and wondering why, how, when did this happen. Did you have any emotional support to help you through the tough times?
I did have some emotional support and it was mostly my husband (Steve) who listened to my fears and doubts late at night while lying in bed surrounded by darkness. I would express my helplessness, confusion and fear when Tucker was in a flare, as he’d rapidly drop weight and get sick so quickly. Steve is a steady, reassuring presence in my life, not much shakes him up, but ultimately I felt alone with my fears that I would not solve this and Tucker would waste away and die.
I made a lot of sobbing phone calls to other family members but no one had really heard of UC before and I could tell they were pretty confused by it all especially the SCD diet. As you know from your sons diagnosis around the same time (seven years ago), there was not much information about these diseases or the SCD diet except ” Breaking the Vicious Cycle” and Lucy’s Kitchen website to order almond flour and yogurt supplies. Now there are blogs, wonderful recipe resources like Comfy Belly, delicious recipe books and SCD, forums to share information.
I would have loved when Tucker was diagnosed, to have shared my thoughts with other mothers and asked questions about their experiences with the disease and diet. Once I even got so desperate to talk to someone that I called Lucy of “Lucy’s Kitchen” fame and broke down crying in the first ten seconds asking her a question about the SCD diet. She was so kind and reassuring about the diet I could have talked to her for hours.
The book mentions that you discovered a recipe that was causing problems for some people following SCD. I also discovered that loading up on honey, caramel, and almond flour is not entirely helpful. What are some other tips you would you offer to someone starting out on SCD today?
The main tip I would say to newcomers to the diet is keep it simple. Breakfast can be scrambled eggs with cheese and/or some yogurt with banana and walnuts; lunch, a bowl of chicken and carrot soup with a muffin and dinner could be a hamburger patty with cheese, steamed green beans, applesauce and more yogurt for dessert.
Go gourmet once you are comfortable with knowing the amount of food you need to cook every day. It would be disastrous to be really hungry for dinner, have raw chicken in the refrigerator and frantically try to make a four-course gourmet meal out of it. Throw the chicken in the oven with salt and pepper on it and toss some frozen veggies in a pan while you munch on a muffin or some cheese, walnuts and grapes.
What were your sources for food and supplies when you were researching and starting out on SCD?
We used a food buying club called Azure Standard, Lucy’s Kitchen, our own vegetable garden and meats we hunted (venison) or bought locally from neighbors (eggs, pork, lamb, beef, and honey) plus a local farmers market. It’s much easier now with so many online resources and companies that sell baked SCD goodies and products.
The common feeling expressed about SCD is it’s just too difficult. Did you experience this feeling and if so, how did you overcome it?
The SCD is very close to the way our Grandmas used to cook. Plain and simple food, minus the wheat, potatoes, and corn. Bread and cookies are made with almond flour and honey instead of wheat flour and sugar. Meat, vegetables, fruit, cheese, nuts, and homemade yogurt make up the bulk of ingredients with almond flour goodies on the side.
It sounds simple but the hard part for me was cooking for the rest of the family at the same time. Tucker’s younger brother needed lots of “carbs” for his cross-country running sport and my husband is a meat and potatoes man. I exhausted myself trying to please each family member, so everyone learned to make compromises since Tucker couldn’t. My husband learned to love daily salads and lots of veggies and my younger son learned to fix his own pasta. I adjusted to putting aside everything else but my job and cooking for a while. I’m pretty sure most of us have spent hours every day texting or talking on our phones, computer time or watching T.V. That’s the time you will now spend learning about the SCD and cooking your meals. Meals and food preparation can be family together time just like it used to be in our grandparents day.
That said, it IS hard and a HUGE adjustment to cook everything from scratch but the rewards of good health are worth the extra time and our whole nation is turning towards cooking the SCD way more and more. Be prepared with a grocery list and plan of action so you ALWAYS have food choices in front of you. A great section in our book is on meal planning and cooking for a week of meals in just one afternoon. Make it fun instead of a chore. A lot is attitude and how we approach new things.
Thanks Tucker and Carol!