I was raised in a "science town", near the green lawns of The Weitzman Institute of Science. The motto in my home was "if it doesn't have a scientific proof, it doesn't exist". In my adult life, I am surrounded by family and friends who are scientists, engineers and doctors in different fields. They all appreciate well planned and well executed research, factual statements backed by hard data, statistics, graphs, and numbers.
Yet here I was, about to make a huge decision that would affect my son's health, well-being and future… and my choice was so un-characteristic. At the time I was suggesting that we consider the SCD instead of immunosuppressant drugs, the diet was not backed by modern research and lacked statistical analysis of measured successes. Instead of following the common medical wisdom and the well-researched pharmaceutical protocol, we chose WHAT?
Shortly after my son was diagnosed with Crohn's, I pled with his doctors to let us postpone medication and instead try a dietary approach to treat this serious and dangerous medical condition. It is a diet with peculiar guidelines, based on a book that was poorly edited. It had very little research backing and no statistics to measure any substantial impacts or outcomes. How could any responsible parent even consider it?
Well, what the Specific Carbohydrate Diet did have was a growing number of people that had tried it out of sheer desperation and who in turn had become advocates. These were people that gave it a try when medication was no longer an effective option. Thrilled with the outcome, they were eager to share their experiences with their fellow IBD patients. Thankfully, they turned to the internet as a global information channel, and the news of this weird diet was spreading fast. As we were searching the internet to learn about Crohn's treatments, we came across it.
Given my upbringing, I love it when I can back my instincts with good reliable data, but with an ailing child we didn't have this luxury. In an extremely uncharacteristic step, I completely surrendered my need for scientific proof before embarking on a regimen that would affect my son's health. I decided that we would adhere to the diet completely, 100%, for a period of time, and only if the diet failed to achieve the necessary results would we go the route of pharmaceuticals. Thankfully, my son saw almost immediate results once he was on the SCD plan. Success, as it turned out, was a great motivator for all of us. Maintaining this strict diet became easier with time, and this was reinforced especially whenever we considered the alternatives.
We were fortunate to have circumstances that allowed us to try the unconventional SCD while still securing the solid backing of the wonderful GI team at Seattle Children's Hospital. While trying to convince us to start a long term regimen based upon immunosuppressants, and cautioning us that diet was not a solution for an immune disorder, our doctors were still willing to have our son under their supervision. For the first two years on the diet we were visiting Seattle Children's Hospital several times per year for follow-up, and completing their prescribed lab work every three months.
We have now been on the diet for many years. The GI team at SCH continues to monitor our son's wellness periodically. They measure the success of his diet by the results of the lab work and share our happiness in seeing no flares and no inflammation.
The SCD diet is still under-researched, not quantified in any way, and lacks the benefit of ongoing evaluations and updates. Our family still turns towards science to find more answers and options in the future. Genetic and microbiome research, and possible pharmaceutical breakthroughs will hopefully bring many avenues for relief and even a potential cure in the future. Nutrition is finally being further explored as a viable option or adjunct for treatment.
In the meanwhile, how did this "prove it scientifically" mother deal with her doubts? How did sleepless nights of self-questioning turn to hope and optimism? I learned to measure success by a new variety of parameters. I measure our SCD success by the freedom it gave my child to enjoy and pursue all the activities that he is curious and passionate about, and his freedom to enjoy wellness without dependencies on medications.
I am grateful to all the people that shared their SCD successes, as they provided the hope we needed when we desperately decided to give it a try. At some point in the future, the accumulation of individual SCD stories may become measurable, quantified and legitimized by science. Until then I continue to whisper to myself small words of encouragement and measure success one day at a time.