As an infant, Jack Woodward suffered from reflux. As he grew older, his abdominal problems always seemed to be present, including diarrhea and stomachaches. The symptoms steadily worsened and in October 2010, at age 7, he could barely move because of abdominal pain. His mom Gisele made urgent calls to doctors near their home in Charleston, South Carolina, but no one would give an appointment earlier than 6 months.
In an act of desperation, they traveled to Massachusetts General Hospital (MGH) in Boston. After an endoscopy, the gastroenterologist diagnosed Jack with ulcerative colitis. Jack received prescriptions for Pentasa and Entocort which began to ease his symptoms. Before flying back to South Carolina, Gisele asked for advice on follow-up care closer to home.
The doctor at MGH strongly recommended Benjamin Gold at Children's Healthcare in Atlanta* noting that: "We [MGH] tried to recruit Dr. Gold to come up here but he's not willing to trade the Georgia weather for Boston winters." (* One of U.S. News and World Report's top-rated children's hospitals.)
From ages 7 to 8, Jack's symptoms were more manageable on medication but he stopped growing. In October of 2011, Dr. Gold ordered more diagnostics, including an endoscopy and colonoscopy. The tests showed inflammation not only in Jack's colon but also his small intestine. As a result, Jack's diagnosis was switched from ulcerative colitis to Crohn's disease.
To make matters worse, in February of 2012, five months after Jack's diagnosis of Crohn's, his older sister Kristina was diagnosed with ulcerative colitis. Her outer symptoms had been milder, initially showing up as joint pain. However, tests revealed that her intestinal inflammation and lesions were more serious than Jack's. Both brother and sister officially had IBD.
No Stranger to IBD
It's important to point out that Gisele was no stranger to IBD. Her husband Mark, Jack and Kristina's father, had a long history of Crohn's disease. Mark was rushed to emergency surgery in 1989 for a resection, underwent another resection surgery in 2003, and carefully followed his medication regimen, all while balancing a demanding work schedule. During their years together, Gisele made it a point to understand the disease.
Long before Jack's diagnosis, Gisele actively volunteered with the Cohn's Colitis Foundation of America. Over the years, she raised tens of thousands of dollars for the local chapter. Gisele was no stranger to the impact of IBD on an adult. She was also a person used to taking action. However, now she had two children with IBD. Knowing the lifelong health issues and medications faced by Jack and Kristina, she began to feel at a loss. What could she do to help them?
Serendipity intervened. Jack and Kristina's visits to Dr. Gold coincided with the start of an SCD pilot study. Dr. Gold explained to Gisele how the SCD had helped other patients in his practice.
After careful consideration, the family decided that both Jack and Kristina would start the SCD together. Although they didn't participate in the study, they followed the same protocol and stayed under Dr. Gold's medical supervision. The family went through the hard work of understanding the diet, reading labels, and reconfiguring their household food supply.
Six months later, the effort starting showing results. If you remember, Jack had stopped growing for one year, during ages 7 and 8. He literally fell off the growth chart for children his age. The inflammation from Crohn's had impaired his body's ability to absorb critical nutrients. But during the first six months on the SCD, something changed. His intestines started to heal, his body began to absorb nutrients, and he grew an inch. One inch in 6 months! His parents sighed with relief, the team at Children's Healthcare in Atlanta celebrated, Jack was getting better.
Kristina's fared even better, her symptoms resolved by 6 months. Three and a half years since starting the diet, Kristina has remained completely prescription-free while Jack's medication is limited to Pentasa. They have both grown taller and gained weight--although Jack has not completely compensated for his sickest year when his growth had stopped.
The children enrolled in the study also thrived on the SCD. In the October 2014 issue of the Journal of Pediatric Gastroenterology & Nutrition, the researchers noted "clinical and mucosal improvement" at both 12 weeks, and for those who continued, at 52 weeks. More specifically:
- 8 out of the 9* patients who completed the study showed clinical improvement at 12 weeks. (*1 of the original 10 patients dropped out, not able to comply with the diet)
- 6 of these 8 who improved achieved clinical remission at 12 weeks
- "Sustained clinical remission was shown in 6 of the 7 patients who remained on the diet to 52 weeks"
source: Cohen, Stanley A., et al. "Clinical and mucosal improvement with specific carbohydrate diet in pediatric Crohn disease." Journal of pediatric gastroenterology and nutrition 59.4 (2014): 516-521.
Note: Taking into consideration their own bias toward the SCD, the researchers used an independent evaluator to review the clinical results.
Helping Other Families - A Second Study
With both Jack and Kristina doing so well, Gisele saw a way to take action on behalf of everyone with IBD. She became involved in fund-raising, creating the Woodward Crohn's and Colitis Foundation. So far she has raised $150,000.
This money has been used to start a second round SCD study, this time with 20 patients. For this multi-site effort, Dr. Gold and his team are collaborating with Dr. Suskind at the Seattle Children's Hospital. They are studying how the Specific Carbohydrate Diet changes the flora of the gastrointestinal tract as well as reduces the inflammation on the lining of the intestine.
More information on the Woodward Crohn's and Colitis Foundation may be found below: