When we were first diagnosed, we visited four different doctors to discuss treatment options. We visited doctors in Michigan (University of Michigan and Beaumont Hospital), Ohio (Cleveland Clinic), and New York City. What is interesting about our visits is that not one doctor recommended the same treatment approach. For example, one doctor recommended that I start remicade infusions as soon as possible while another doctor recommended an antibiotic. We were overwhelmed with the choices and asked all the doctors if food made a difference. Most of the doctors said we could eat whatever we wanted - food does not matter. Only one doctor mentioned the SCD diet and said “some” of his patients believed it helped with symptoms. He was careful to say that in his opinion it is not a cure and would not put the disease in remission.
Even though none of the doctors recommended the Specific Carbohydrate Diet as a primary treatment option, we decided to give it a try. We went full board on the diet and followed it very carefully. We are still on the diet today.
Within three months of being on the diet my brother's elevated CRP (6.0) had dropped significantly (1.8). What few symptoms I had also resolved. We continued to stay on the diet and felt great for about six months. I was ready to declare the diet a miracle and was prepared to devote my life to promoting it...
After six months, for some unknown reason, my brother’s CRP numbers slowly began to increase and eventually reached an alarmingly high level (9.2). He stopped growing again and lost his appetite and energy. We tried to make several adjustments to the diet by eliminating certain SCD foods - like nuts and fruits. His CRP numbers bounced around, but we couldn’t determine if it was due to the diet or other factors. After a year of being on the diet, his colonoscopy showed that the disease had gotten worse. We felt we had no other choice but to put him on Remicade. He has been on Remicade since March 2013 and is doing great. We still do not know what caused my brother to get sick again. We have not given up on the diet because it appears to work for me and worked for him initially.
I have had no IBD symptoms and feel great since starting the diet. Is it possible that my IBD is in remission on its own? Or is it because of the diet? Does it work for some people but not all people? Does it just help with symptoms but not disease progression? So many questions about the diet are unanswered and will remain unanswered because of the lack of research on the diet’s impact on IBD.
I started this website to help answer these questions. I want to know if it truly is a viable treatment option. The medical community cannot continue to ignore the countless stories out there about this diet. We need research and answers.
Visit the "SCD Survey" page to participate.
Thank you for your time.