Following a restricted diet like the Specific Carbohydrate Diet (SCD) takes patience, dedication, and resilience. It's hard to take a stance and follow a protocol that some people, including doctors, dismiss despite evidence of its success. It's difficult to follow a long-term plan that has slow results when so many short-term fixes exist. It's hard to believe in your body's ability to heal when it has become so broken.
When I decided to follow SCD I was lucky to have the support of my husband and immediate family but it still took a leap of faith that first year. The success I had was due to pushing forward, not letting set-backs get me down, and a willingness to ask for help. The diet worked for me and it continues to work, so I'm sharing my story here in case it inspires someone else to stick to a similar diet, question traditional thinking, or believe in their ability to heal.
JANUARY 2005 - My doctor shared the news I suspected – a confirmed diagnosis of Ulcerative Colitis, an autoimmune disease that effects the colon. I was 44 (older than the average IBD diagnosis) and until 3 months before, I’d never heard of colitis - confirming the quote “you don’t get it, till you get it”. After extensive Google and WebMD searches, I had suspected UC was the reason I couldn’t keep any food inside me, was constantly in the bathroom, and why I’d been seeing blood for the past few months. Now though, a diagnosis meant a treatment protocol.
I left my doctor’s office with my prescription for steroids and mesalamine. I had, of course, asked about dietary interventions but he dismissed that approach – saying that diet has no impact on IBD. I wondered how it was possible that IBD - a disease of the colon – was NOT impacted by diet. I mean, colon… food… diet… hmmmm. But at that time, I still believed that doctors knew everything, and their word was final. Please note that I have utmost respect for medical professionals, but I view them as my partners in healing, not lords on the throne of wisdom. They are human beings and see many patients a year of which I am just one. While they bring their book knowledge and expertise to the table, I bring my personal experience and needs. We both bring our own bias.
MAY 2016 – almost a year and a half later, I was a mess and was no closer to healing. I had experienced limited success with the medications and even ended up with a mild case of anemia when my iron levels dropped because of blood loss. The prednisone had more side effects as the doses got stronger. The mesalamine couldn’t keep my symptoms at bay.
My doc recommended Humira – a biologic drug that suppresses the immune system that had become overactive and was attacking my body instead of protecting it. Taking an immunosuppressant terrified me as did dependency on a medication that was both expensive and required lots of hoops to jump through. But at the time, I was in such a bad place that I agreed to the treatment.
Within 2 months of taking Humira my symptoms disappeared, and I had a sense of normalcy. But what never left was the unease of taking such a powerful drug. I’d had to take a variety of vaccines – including Measles Mumps Rubella (MMR) because I had no record of my childhood vaccinations - before starting Humira because my body would be weaker in the fight against viruses. In addition my insurance company required a doctor’s authorization every single month. I couldn’t stockpile a few months worth in case of travel or an emergency. The pharmacy required I be at home for the delivery window (at least once the UPS truck didn’t deliver it on the scheduled Friday and I was told it was going to be at the facility all weekend which would have been disastrous since it needed to be kept cold). There was a constant fear that next month the insurance wouldn’t cover the costs and I’d need to pay the $2000 a month co-pay or just not be able to get it! On top of that, giving myself shots every two weeks was painful and depressing.
All of these factors made me want to seek a different solution.
During this time my mother attended a seminar about IBD and nutrition. She came back bubbling about the doctor and registered dietician from Cedars-Sinai who spoke and this diet called the Specific Carbohydrate Diet (SCD) and how it could treat my symptoms. I had a copy of the book it was based on - Breaking the Vicious Cycle by Elaine Gottschall - but I had read the first chapter and couldn’t imagine following a diet that removed all grains (I was a bread fanatic) and sugar (chocolate!!). It seemed rigid and ridiculous and the only redeeming factor was that it allowed coffee. I had tossed the book aside shortly after reading the first pages - I did something similar with my mother’s seminar notes.
Several months later though I was at the Crohns Colitis Foundation’s Patient’s Conference when I heard the same doctor and registered dietician give a talk about the same diet. I was several months into Humira, my symptoms were under control, and I desperately wanted an alternative to meds. This time I listened with less judgement.
Dr Vasiliauskas (Dr V) - a doctor from a highly reputable medical center saying that yes, diet works! He talked about SCD and it sounded like a plan I could do. In fact, it sounded like my only hope of getting off Humira and managing my symptoms my way. When I got home, I picked up my book for the THIRD time and read it all the way through. At the end I didn’t toss it aside, instead I set out with a plan.
JANUARY 2017 - I started SCD. Since I was on Humira and in remission – calprotectin below 50 – I was mostly SCD, meaning I wasn’t 100%. I still ate the occasional dessert or piece of toast and I made lots of mistakes. SCD works when you are fanatically adherent so I wasn’t doing myself any favors BUT I was getting the hang of the kitchen. My plan was to get in the rhythm and then talk to my doc about going off Humira after about a year. When I was ready.
JUNE 2017 - the universe decided I was ready (even if I wasn't totally on board yet). I got a call to say my GI doc was retiring… in a week. I also found out there was no other GI doc available in my HMO plan. None. Not a single GI anywhere that I could go to. Which meant there was no one to authorize my monthly dose. Not even the pharmaceutical company that makes Humira and my personal “nurse ambassador” could give me a sample.
So that was it – Humira stopped and 100% SCD started that day. I was actually grateful for the kick in the pants, even though it wasn’t exactly how I’d envisioned it.
I stayed symptom free for a little while as the medication still circulated in my body. I used the time to get better at cooking and become more familiar with the intricacies of the diet.
AUGUST 2017. It hit me. The pain, the urgency, the blood returned. My calprotectin was 839 (it had been ‘normal’ at under 50 on Humira). I felt defeated but I doubled down on SCD. There was no room for error. I had joined a Facebook group and asked tons of questions. I read articles and listened to podcasts. I read the book again. I learned my mistakes and I narrowed my food list a little more - if in doubt, I left it out.
DECEMBER 2017 – just a few months later, my symptoms were lessening. It wasn’t perfect, but I was mending. And then over the winter break I was listening to a podcast about FODMAPs and the fact that onions and garlic are often the hardest for people to digest. I have never been able to eat garlic – it gave me headaches and gas - so I had not been eating it, but I’d added lots of onions to my meals in recent months to add flavor. Could I be having a reaction to onions? I removed them from my meals and like magic, just a few days later, my final last symptom went away.
MARCH 2018 - Just 7 months after my post-Humira flare, my calprotectin was less than 50. In September, 6 months later it was below 16. It has stayed in that range ever since.
NOVEMBER 2020 – I have been strict with SCD for over 2.5 years. I've had ups and downs but mostly ups. It got easier with time. I made fewer mistakes. It’s always been a little hard. Cooking from scratch, explaining to friends and family why I bring my own food to parties, watching people eat bagels - are all difficult. But the rewards outweigh the challenges that above all include remission from IBD.
I eat better than I ever have, including a wide range of fruit and vegetables. Because I make almost all my meals from scratch I know exactly what goes into them. I only eat sugars from fruit and honey so my sweet tooth is easily satisfied by dates or sweetened tea. I eat and grocery shop with intention. I fuel my active life and running with natural foods instead of processed gels and gummies. I listen to my body - it's happiness over healing foods and it's annoyance with foods that don't agree with me even though they are "allowed".
My health journey didn't end with IBD. I have had other medical issues but I feel like I'm a partner with my doctors, not a pawn.
I will always be grateful to Elaine Gottschall for writing her groundbreaking book in the 1980s, for the handful of doctors who acknowledge the role of diet in IBD, the SCD Association and the Facebook group it was born from, and the Crohns Colitis Foundation that has started directing fund towards research into dietary studies.
SCD started out as my glimmer of hope. It has become my shining beacon of strength.
About the Gutsy Runner!
Lucie is a runner, hiker, and fitness coach who follows the Specific Carbohydrate Diet (SCD) for her ulcerative colitis. She is currently on a year long birthday celebration that includes covering 2021 miles on foot and exploring some of the areas most iconic and beautiful trails. Read more