Cindy Frei's Story
Two years into the SCD Diet and Caleb is doing great! He is completely medication free and is healthy strong and active. The diet works but it takes patience, patience and patience. Stick with it. It's a journey and a new healthy lifestyle. Believe that i
It all happened in slow motion.
We had been sitting in the waiting room at Children's Hospital with other anxious parents for what seemed like days. It had really only been about an hour or so. Then, we finally saw our name on the board, indicating that our son's procedure was complete and we could go meet the doctor.
From that moment, everything became fuzzy and time seemed to be stop. To be honest, I have a hard time remembering the details. All I recall is being told that Caleb had come through the procedure fine, but that he had Crohn's disease. I knew it was a chronic illness, but didn't know much about it at that time. He was in recovery and we could go in and see him.
It took a couple of days for the news to actually sink in. It took a couple more of intense research to fully comprehend the magnitude of what my son would face the rest of his life.
For the last 10 years, I had woken up every day with the goal of doing everything in my power to keep my son safe, to keep him healthy, and ensure he was happy and secure. Now, in a matter of a flash, it was all gone. An autoimmune illness had taken over and control.
I was scared to death.
What Do You Do After Your Child is Diagnosed With Crohn's Disease?
I did what any Type A, driven, controlling, protective mother would do. I learned everything I could about Inflammatory Bowl Disease. What caused them? Why? What were common treatments? What were the side effects? I joined online supports groups, read books and talked to other parents.
We had a follow up meeting with our GI Specialist a week later. Based on the colonoscopy and Caleb's blood results, he was advising drug therapy to reduce the inflammation in his body. I had already read about the variety of anti-inflammatory drugs and knew their side effects and immune suppressing implications.
I decided to pursue a different approach – one that aligned more closely with my natural and holistic instincts. This involved managing his disease primarily through diet. My GI Specialist was on board, so long as we monitored Caleb's blood work carefully. We decided to take out all dairy from Caleb's diet, along with most gluten. We already ate a pretty clean diet, but going forward there would be no more fried food, sodas etc. I also planned a trip to New York to visit a Chinese Doctor who specialized in chronic illness (who I had used for my daughter's Lyme Disease). I started Caleb on Chinese Herbs to help reduce the inflammation in his body and help increase his digestion.
The next month, we did blood work and Caleb's inflammation levels had dropped all the way down. They weren't quite at normal levels, but we were pretty excited.
They remained that way for almost two years.
Caleb Fell Out of Remission
Then, as any chronic disease can and will, it reared its ugly head.
Caleb's inflammation levels started to rise. The doctor was alarmed, as was I. He told me about an elimination diet that was having great results with IBD patients. Due to its highly restrictive nature, it was very difficult to follow, especially for kids, The diet, called The Specific Carbohydrate Diet, eliminated all grains, gluten, complex carbohydrates (rice, corn, potatoes), sugar, dairy and preservatives. Basically, it cut out all foods that kids traditionally eat. If you're familiar with the Paleo diet, it's very similar.
Complex carbohydrates, that are not easily digested, feed harmful bacteria in the intestines, causing them to overgrow and inflame the intestine wall. The diet works by starving out these bacteria and restoring the balance of bacteria in the gut. This reduces inflammation in the body and is why the diet is so helpful for anyone who struggles with inflammation or digestive issues.
I felt we had no choice, so we jumped in. Caleb agreed as well.
Starting the SCD Diet
Before I even got home, I had purchased Elaine Gottschall's book, Breaking the Viscous Cycle, which tells the story of another mother, just like me, struggling to help her child with a debilitating case of Ulcerative Colitis.
After failed attempts with drug therapy, Elaine (the mom) faced surgery to remove her daughter's colon. After desperate inquiries with specialist after specialist, Elaine had been given the name of 92- year old Dr. Sidney V. Haas, MD, in New York City. Dr. Haas had developed a nutritional approach to intestinal healing. He put her daughter on a special diet and within weeks, Judy's neurological problems had diminished, her intestinal problems improved, she started growing again and within two years, she was symptom free. By this time, Dr. Haas had passed away and Elaine felt she had an obligation to carry on his legacy. This is how the SCD Diet came to be.
When we arrived home, we emptied the house of everything that had sugar, gluten, grains and preservatives. It didn't leave much. I decided to go on the diet with Caleb, so that I could support him and he knew we were in this together (which we are).
The first couple of weeks on the diet were hard. I'm not going to lie. They were hard on Caleb and me. I was desperately trying to find recipes to cook and bake for him and he was just hungry all of the time. Luckily, there is a very strong online community of other parents on the SCD Diet who provided great support during this difficult time (and continue to do so).
Falling into an SCD Rhythm
We finally fell into a rhythm. We found great recipes for cookies, cakes, bread, crackers, marshmallows & more. I started making homemade yogurt and bone broth to help with the healing process (which is an integral part of the diet). It felt good to feed my son such whole, healthy foods that I knew were healing him.
Four weeks later, we went back to have our first appointment since Caleb's inflammation levels had risen and since we started the diet. I was holding my breath, not sure what the results would be. Unbelievably, Calebâs c-reactive protein (one of the markers which measures inflammation in his body) had fallen from 19.2 to 6.5.
We were ecstatic (and relieved). The diet was working. I remember sobbing when I got the results. I felt like I had been holding my breath for months and now I could finally let it go.
There was hope.
We plowed along for some time, cooking, baking and cooking some more. After all, there is very little to buy in stores today that doesnât have sugar, gluten or some preservative in it. Thereâs plenty of great gluten free food â" but itâs all filled with sugar and preservatives. So, we have to cook almost everything our kids eat.
A Nagging Feeling Inside
Caleb was doing really well physically on the diet, but socially and psychologically, he was struggling. Between school bake sales, birthday parties, sleepovers and more, he was having a hard time navigating a world filled with junk food. He kept saying, he just wanted to be like a âregular kid againâ.
Every day, I was in Facebook IBD support groups talking to other parents whose children were sick. Some were using drug therapy and didnât know about the SCD Diet. Others were on the SCD Diet, but were having a hard time finding recipes and making all of the food. There was hardship everywhere I turned.
I decided then that I wanted and needed to do something about it. I wasnât quite sure yet what it was. It took some time to come into focus. I saw Caleb struggling, feeling like a social outcast and knew there were hundreds of thousands of other kids just like him. I saw exhausted parents, weary to the bone from all of the cooking, and I knew there must be a way to help.
Then, it came to me.
I Would Start a Company to Create Healthy Fast Food For Kids
I would create a company to make healthy fast food that any child on a special diet could eat. It would all be grain, gluten, sugar, dairy and preservative free. It would be typical kids food that I know Caleb would want to hang out with his buddies and eat. It would look and taste just like kid's fast food. It would also be marketed and branded that way – with big bold colors. In fact, I ended up creating a "marvel-esq" cartoon character of Caleb as the logo. I would sell it frozen, so there would be no cooking involved for the parents. All a parent or kid had to do was pop it in the microwave or oven.
Caleb's Cooking Company was born.
I partnered with a chef named Travis Bettinson who specializes in cooking SCD food. He had been cooking SCD food for kids with Crohn's and Colitis at Camp Oasis (camps for kids with IBD) for years. He also did all of the cooking for a recent study at Seattle Children's Hospital, studying the effects of the SCD diet on IBD.
I became a member of DC Union Kitchen, a food incubator in Washington DC, which provides businesses with a best-in-class, professionally managed commercial kitchen for production. They also provide distribution and have dozens of relationships with retail partners in order to bring products to local and national outlets, including 20 Whole Food Markets.
Most importantly, we created Caleb's Club, an exclusive online club just for kids with chronic illnesses, where kids get together, hang out, share funny videos, images, music and experiences. Caleb runs the club and the goal is that no child should ever feel alone or like an outcast again.
We decided on our first products we would bring to market. I asked Caleb what food he missed the most and that helped drive our decision, combined with Travis's already successful recipes.
We decided on:
Non-dairy Tomato & Sausage Pizza
Bean & Pork Enchiladas
We knew that our food not only had to taste good, but it had to look good as well. We are finally in business and selling our fabulous SCD food online (and soon in a store near you). If you are on the SCD Diet and your kids miss regular packaged kids food, check us out - at https://calebscookingcompany.com/
Two years into the SCD Diet and Caleb is doing great! He is completely medication free and is healthy strong and active. The diet works but it takes patience, patience and patience. Stick with it. It's a journey and a new healthy lifestyle. Believe that in your heart and you and your family will succeed.