Avi Beach

Avi Shapiro, 15, on a beach in New York, weeks after starting novel diet.

When Avi Shapiro, 15, began complaining of an ache in his stomach, the last thing his mother thought could be the cause was a chronic disease. But after several trips to the doctor, that’s exactly the diagnosis they received.

“I thought the tummy ache would go away, or that maybe he was lactose intolerant,” said Ingrid Elliott, Avi’s mother. “My next thought was, ‘If it’s anything, I hope it’s celiac disease.’ I know how to deal with that. I am gluten intolerant so I know it’s something we could treat with diet.”

After multiple visits to see their pediatrician and a trip to Seattle Children’s for an endoscopy and a colonoscopy, the results were confirmed. Shapiro’s intestines were severely inflamed. He was diagnosed with Crohn’s disease, a form of Inflammatory Bowl Disease (IBD).

According to the Crohn’s and Colitis Foundation of America, as many as 700,000 Americans may be affected by Crohn’s. And although it’s unclear what causes an individual to have Crohn’s, doctors believe Crohn’s occurs because something goes awry between a child’s genetic makeup, their immune system and their microbiome.

“About 25% of Crohn’s diagnoses occur during childhood,” said Dr. David Suskind, a gastroenterologist at Seattle Children’s. “Typically we see two spikes in onset, one in the 8 to 10 age range and the second in the early teens. The incidence also seems to be increasing. Although we’re not sure why, we think it might be related to environmental factors like diet and the overuse of antibiotics.”

The perfect match for treatment

Avi and Suskind at Seattle Children's

Avi and Suskind at Seattle Children’s.

Avi and his family chose to receive care at Seattle Children’s Inflammatory Bowel Disease Center. Suskind talked the family through a few different options for treatment. They could either start Avi on a regimen of medications and steroids, or they could treat his disease with a novel nutritional therapy.

“If you look at the standard treatment for IBD at most centers, diet doesn’t play a role. What we do at Seattle Children’s is very different,” said Suskind. “We’re finding that for some patients, diet can be the key. We start by giving parents information about the pros and cons of all treatment options, and then ask them what they want to try. We’re supportive of either medication or diet, because we know that different treatments work for different patients. We just want to ensure we’re aligned with what works best for the family.”

Almost five months prior to Avi’s diagnosis, the family was blindsided by a medical diagnosis of a different kind for their youngest son, Micah. To treat his condition, doctors at Seattle Children’s needed to give him steroids. They saw the harsh side effects of steroids firsthand and from that experience wanted to avoid steroids for Avi, if at all possible.

The family decided to try the nutritional therapy, in which they had two options to choose. The first was a diet consisting of 100% formula. The second option was a specific carbohydrate diet (SCD), a restrictive diet that limits grains, and instead focuses on fruits, vegetables, and nuts. The SCD eliminates a lot of foods found in a typical American diet, including simple sugars, grains, and most dairy products, as well as all additives and preservatives.

Seattle Children’s is one of the only centers in the nation to offer the SCD diet to patients and families as a treatment option for Crohn’s and ulcerative colitis. With a team of doctors, nurses, nutritionists and psychologists, children and their families are educated about the diet and supported through the transition. The IBD Center team designs a complete nutrition plan for each patient to ensure they get enough calories and nutrients. According to Suskind, there’s mounting evidence that certain nutritional therapies can reduce inflammation in Crohn’s disease and help heal the intestines.

“We’re seeing such success with our nutritional program because of the interest and commitment from patients, as well as a support system at Children’s comprised of nurses, nutritionists, doctors and the IBD community,” said Suskind. “We are able to bring our experience and knowledge together as a team. In addition, our patients have developed a supportive infrastructure outside the hospital walls. Currently we follow more than 30 to 40 patients using the SCD therapy who connect and work with each other. They share recipes and help each other on the day to day aspects of following the SCD.”

Changing their diet without changing flight plans

After choosing the SCD route, Avi’s family was immediately presented with another challenge. They previously booked a trip to France for vacation and were scheduled to leave within the week.How would they travel overseas for two weeks, while transitioning to SCD?

They decided, with Suskind, to start Avi on a diet of formula to make the switch easier while they were traveling.

Unfortunately, Ensure, the formula Avi needed to take in replacement of solid foods, wasn’t available in France, so the family carried the formula in checked luggage and shipped an extra supply overseas. Within a few days of starting Ensure, Avi felt better.

“We had suitcases full of Ensure for the whole trip,” said Elliott. “Everyone was getting amazing multi-course meals. Avi was crestfallen at first, but then he was fine after that. He’s tough and determined, and motivated to feel better. It took a lot of fortitude to do it.”

Avi in France

Avi poses on a boat in France.

But, after nine weeks on formula, Avi had enough. With only three flavors to choose from on the formula diet, Avi was ready to transition to SCD – a decision that was a turning point for him.

It only took a few months on SCD before Avi’s labs came back normal. Today, he’s adjusting to the new diet, and although he occasionally misses popcorn at the movies, he’s doing really well.

“The diet can seem daunting in the beginning, but we have developed new habits,” said Elliott. “We have routines around cooking and grocery shopping. Once we figured it out, it became second nature. It doesn’t feel like we have a sick kid. Today, he’s not just doing well, he’s thriving. It was a miracle we found Dr. Suskind. If we would have gone to another hospital, we would have never heard about this unique diet and Avi might not feel how he does today.”

“Even though it was hard at first, I don’t think about all the foods I’m missing out on,” said Shapiro. “My intestines are healthy! And as long as I stay on SCD, I feel completely healthy and normal.”