Avi Shapiro, 17, suffered from Crohn’s disease. He achieved remission through a unique diet called the specific carbohydrate diet (SCD). Now, he has made it his mission to share the benefits of the diet with other kids like him.

Avi Shapiro knows his way around the kitchen. While the average teen might be fishing around their pantry for a bag of potato chips or a box of cookies, Avi is in the kitchen whipping up ingredients for his next delicious concoction. Depending on the day, he might prepare homemade marshmallows, a serving of spaghetti squash pesto or a scrumptious stack of waffles baked to perfection.

The effort that Avi puts into cooking these delectable dishes isn’t purely for pleasure or practice to become the next winner of “Top Chef.” For the 17-year-old, cooking food has become a lifestyle that he has learned to embrace over the last three plus years to remain healthy after achieving remission from Crohn’s disease, a form of inflammatory bowel disease (IBD).

“I learned that being able to cook is a valuable skill to have,” said Avi. “Knowing the types of ingredients to buy which support my well-being and getting to create and eat meals that I actually enjoy feels truly amazing.”

A healthy helping of care

Before Avi discovered the remedy that would lead him to remission from Crohn’s, he suffered from the painful symptoms associated with the condition.

In Crohn’s disease, swelling and redness occurs in the wall of the digestive tract. Both the inner lining and deeper layers of the wall become inflamed, and over time, this can damage the tissue and cause sores or ulcers. People with Crohn’s experience abdominal pain and recurring looseness of bowels because the inflamed intestine cannot absorb water and nutrients like it should.

Previously, treatment for IBD was limited and usually involved the use of steroids or medication, which can often lead to life-long side effects. Medication and steroids also only suppress the immune system and don’t treat the underlying issue of the microbiome, the bacteria that live in the digestive tract.

Avi and Dr. David Suskind, a gastroenterologist at Seattle Children’s, in 2015.

With this in mind, Dr. David Suskind, a gastroenterologist at Seattle Children’s, was determined to find better and more effective treatment options for IBD. This search led him to discover that an innovative diet alone, called the specific carbohydrate diet (SCD), could bring pediatric patients with active Crohn’s and ulcerative colitis into clinical remission.

SCD is a nutritional therapy that removes grains, dairy, processed foods and sugars, except for honey. The diet focuses on natural, nutrient rich foods including vegetables, fruits, meats and nuts.

Avi and his family first learned about SCD when he met with Suskind and began receiving treatment at Seattle Children’s Inflammatory Bowel Disease Center. As a leader in nutritional therapies, Seattle Children’s is one of the only centers in the nation to offer SCD to patient families as a treatment option for Crohn’s and ulcerative colitis.

When given the choice to pursue either a regimen of medications and steroids or try the novel diet as a treatment option, Avi chose SCD.

“Starting on the diet took some getting used to, but looking back, I’m grateful my family and I chose that path because I was able to reach remission,” said Avi. “Now, there are days that go by where I don’t even think about my disease. I can go about my daily life while still getting to eat good food.”

Dedication to a new diet

Avi in 2014 as he was beginning SCD.

While working to establish an entirely new way of eating, Avi and his family encountered a few challenges along the way.

“It was very overwhelming at first, but I knew it was a drastic change our family had to make,” said Ingrid Elliott, Avi’s mother. “However, one of the most important things about making SCD sustainable is that it has to be a family project. It’s easier for the child if everyone in their household is on the diet, and it’s easier for the parents who provide the food on a daily basis.”

Elliott said the key was developing a system where the whole family is involved.

“Everyone chips in with dinner — I usually make a big salad every night, my husband, Joel, cooks meat or fish on the grill, then I roast or sauté some veggies,” said Elliott. “It’s all about keeping it basic and creating simple meals that we all can enjoy.”

Suskind understands the challenges some families face when beginning the diet; however, he believes the benefits outweigh the difficulties they may experience initially.

“How dietary therapy works in IBD is by eliminating foods that are detrimental to the gastrointestinal (GI) tract — this includes food additives which are used to add texture and tastes to foods, as well as extend its shelf life,” said Suskind. “Some of these food additives have been shown in animal models to break down the mucus lining of the GI tract and allow for bacteria to instigate an immune reaction.”

In addition, foods change the type of bacteria in the intestines. By altering a patient’s diet, the patient is able to change the bacteria in their intestines from dysbiotic, or “bad” bacteria, to eubiotic, or “good” bacteria. To explain this mechanism in the simplest terms, Suskind uses an example involving two vastly different animals.

SCD focuses on natural, nutrient rich foods including vegetables, fruits, meats and nuts.

“We know that a tiger eats meat and a cow eats hay. If the only food source available is hay, the tigers would probably not survive, while the cows would thrive,” said Suskind. “The same occurs with bacteria; each type of bacteria likes to eat certain types of nutrients in food, so when you change the types of food you eat, you make some bacteria increase and others decrease. That’s why the diet works in IBD — it’s shifting the type of bacteria from one that instigates an immune reaction to another that doesn’t instigate an immune reaction.”

Suskind reminds his patient families that nutritional therapy is a lifestyle change that can take some time to adjust to. With families like Avi’s, he’s glad to see how much they have embraced the diet and the difference it has made for Avi’s health.

For Avi and his mom, the ‘proof is in the pudding.’

“When Avi went into remission and there were no signs of the disease in his body, it was incredible to see that our family was able to participate in making that a reality,” said Elliott. “Although there were some initial challenges, it was worth it. The diet is a remarkable gift.”

Avi adds, “Being able to treat my Crohn’s without having to go on heavy duty medication is really important,” said Avi. “It’s something that I’m so thankful for.”

Cooking up a sweet idea

While Elliott began incorporating SCD into her family’s lives, she found solace in a Facebook group for SCD families. Being a part of the group provided ideas and information on SCD, as well as comfort because she could relate to many of the other parents’ experiences.

While Elliott had the opportunity to engage with other parents whose kids were on SCD, Avi realized there weren’t any resources to connect with other kids like him.

Avi serves as a leader and role model for other kids on the diet.

In spring of 2016, Suskind led a continuing medical education conference on dietary approaches to IBD for the medical community. Avi was a part of the patient panel during the conference where he shared his personal experiences with SCD. After the panel, a nutritionist approached him with a compelling idea.

“She said that after listening to the providers talk about how difficult the diet can be for both kids and parents, she knew of a number of resources that existed to help parents,” said Avi. “Then she asked me if I knew of any resources for kids. When I told her I didn’t, she suggested that I think about starting a peer support group for SCD patients at Seattle Children’s. I immediately thought it was an excellent idea.”

When Avi first began the diet, there weren’t many kids he could relate to.

“I remember feeling intimidated by the diet at first and there really wasn’t anyone who could show me it would be okay in the long run,” said Avi.

To gather more insight, Avi shared the support group idea with Suskind who was eager to help brainstorm engaging ways to bring kids on SCD together.

“We thought, what better way to support kids, but also get them to show up, than to create a cooking group,” said Avi. “We could cook, eat some food, talk about SCD, and have a great time.”

Suskind knew the value that the cooking group could potentially bring to his patients on the diet.

“I thought that the cooking group would allow patients to engage with one another in a peer-to-peer setting,” said Suskind. “With Avi leading the group, the patients would have an example of someone who was doing the diet and thriving — it encourages them to think, ‘I can do it too.’”

Kids connect over culinary creations

After deciding to host the classes at the Eat Well Be Well studio at Seattle Children’s, Avi needed to figure out the format of the class.

The first SCD cooking group class at Seattle Children’s Eat Well Be Well studio.

“I had this idea of focusing on one topic and recipe for each class based on the time of the year,” said Avi. “For our June class this year, I had a delicious marshmallow recipe to share. Since it was close to the Fourth of July holiday, I thought creating SCD-friendly s’mores would be fun. You’d think making marshmallows would be impossible on the diet with all the sugar restrictions, so I wanted to show them that it actually wasn’t.”

To spread the word about the cooking group, Elliott took to the SCD families Facebook group and invited families to join.

To date, Avi has hosted three classes and the number of kids attending each class continues to grow. With a wide range of ages from 7 to 17, the kids also vary in the length of time they’ve been on SCD. Some are more experienced, having been on the diet for a year or two, while some are just starting out.

Beyond being the leader of the class, Avi also serves as a mentor for the kids.

“Avi has wonderful qualities and one of them is his desire to give back,” said Suskind. “As an older teen who’s been on SCD for many years, when the younger kids in the group see him, they see someone who did it and succeeded, and that inspires them.”

Suskind provides support during the cooking group class.

Suskind attends the class to offer support and assist in making sure every kid has the opportunity to participate. His role also allows him to put down his provider hat for a couple of hours and enjoy the experience alongside his patients.

“I have a lot of fun in the classes,” said Suskind. “It’s a relaxed and engaging environment, and it’s great to see my patients enjoying themselves. Some of them are even surprised to see me in jeans and not in my usual scrubs!”

For Suskind, attending these classes is meaningful to the work he does as a provider. He believes it’s important for patient families to keep in mind that their doctors, nurses, and medical team, are just regular people too.

“As medical professionals, we hope resources like this will allow patient families to become more comfortable with their providers and more engaged in their care,” said Suskind. “An important part of practicing medicine is making sure that it’s a team approach. It’s not just one person dictating to another person — it’s coming together and moving forward as team.”

A perfect pairing of parent-to-parent and peer-to-peer support

While the kids are cooking up a storm in the kitchen with Avi, Elliott typically gathers the parents together in a separate area to chip away at the burning questions some have about SCD, while getting the opportunity to learn from one another’s experiences and stories of diagnosis.

Ashley Sutton, mother of 7-year-old Sophie, shares the impact that the group has made with Elliott: “I found that talking with you and other mothers that have shared this experience, to be empowering and for a lack of a better phrase…it made my heart happy.”

“We begin the parent sessions by going around the room and generating a list of topics that parents are interested in talking about,” said Elliott. “We try to run through as many topics as possible. In the past we’ve discussed ways to deal with special food around the holidays, friends and family who may not understand the diet, planning for a trip, cooking in bulk, and how to create meals for families that are vegetarian.”

Elliott feels grateful for the open dialogue and valuable information that is shared during these sessions.

“There’s a lot of wisdom in the group,” said Elliott. “Some of the stories I’ve heard have been healing and inspiring; everybody has different experiences, perspectives, and ideas to share. It’s really been a team approach, which is emblematic of how the diet works best.”

The value that these sessions bring to parents is evident through the emails that pour into Elliott’s inbox with nothing but praises.

Dawn Locke, the mother of 13-year-old Steven, shared a message with Elliott saying, “I am so appreciative of this group and really enjoy talking with the parents. I value how this cooking group is not only giving our kids the tools they need to manage this disease, but it is giving us tangible support and true reminders that we are not alone.”

Touching messages like this remind Elliott of how far Avi has come since day one of the diet.

Avi encourages more kids to join the group at Seattle Children’s, and hopes this will inspire others to spread the benefits of SCD nationwide through more hospital programs and support groups.

She has noticed significant changes in Avi — not only with his physical health, but with his sense of responsibility in maintaining it.

“I think the main difference I’ve noticed in Avi after being on SCD is how he’s learned to become responsible for his health,” said Elliott. “It has empowered him to know he’s the one in charge to keep himself healthy, which is something he didn’t have to do before.”

Avi has taken his diagnosis in stride, and in every class he leads, he’s eager to share his success with SCD.

“First off, I want these kids to know that they can go to school regularly, do the diet, and live a totally normal life just like any other kid,” said Avi. “Second, I want them to know that SCD works, my Crohn’s is in remission, and now I’m healthy and vigorous. It’s a privilege that I’m able to share the benefits of this diet with other kids who are going through what I went through. It’s truly life-changing.”