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 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 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.”
Wow!! That’s awesome!! I sure wish I had heard about this when my husband was diagnosed with UC 11 years ago. He’s been on every type of oral medication, and now has been put on Humira injections. Because of all the meds he’s been put on, he now has an additional diagnosis of PSC (which will cause liver failure). I’m so happy for this family though, to see their son healthy and happy without medication.
Julianne Smith, it is never too late to change things up. I work with people everyday who decide that are willing to do things differently, because they want different results than they are getting. Feel free in email me at Healthand Harmony10@gmail.com if you would like some support in that new chapter.
This article brings joy and tears to my eyes at the same time. Our son, almost 15, was diagnosed last year in July 2014 with Crohn’s at Children’s Mercy Hospital in KC, MO. We chose the formula plan followed by the SCD diet. He stayed on Ensure for 12 weeks and never wavered. We now follow the SCD diet way of eating for most of our family. I am so thankful we were able to avoid steroids and medications at the time of his hospitalization and pray we can continue to do so. This article gives me hope that others can see the truth that FOOD DOES PLAY a HUGE role in Crohn’s and other autoimmune diseases. We are so thankful for the SCD diet tho we did not receive any support and help learning the SCD diet. We were told to buy the book and the rest was up to us. I was the sole researcher and preparing foods this way was a new way of life and routine we had to learn. It was a HUGE learning curve in the beginning! Thank you for this article! It is so very exciting to see this information put out into circulation that there are other options beyond medication!
I have two friends who overcame Crohn’s and Colitis through Macrobiotics. No drugs at all. They were very, very, sick, and are now completely healthy and can participate in the world.
So happy for all of you! My son was diagnosed with Crohn’s at about age 12. We found and started the SCD diet 5 months after his diagnosis, he will be turning 17 this month. Finding support out here on the east coast has been extremely difficult but continue to talk to as many people as possible about SCD. So excited that the west coast mainstream medical field is acknowledging and supporting SCD, hoping it will be that way soon on the east coast! Thank you again for sharing!!
I’m glad Avi’s story is bringing joy and inspiration. Many people do use SCD to reduce the other medications required to treat IBD, and sometimes patients can get off other drugs with the support of SCD. There are some great resources for SCD available online for those who want to learn more:
1. http://gutharmony.net/index.php/category/about/ The site is new and
open to all. It describes the process of bringing SCD to Seattle children’s
Hospital and focuses on empowering SCD users and simplifying SCD
routines. Anyone is welcome to post questions.
2. https://www.facebook.com/groups/SCDFamilies/ A closed support group on
FB. The group accepts ONLY parents of children’s that have medical diagnosis
of IBD. Parents that apply must enable their FB messaging to receive
communication from the moderator.
3. http://www.breakingtheviciouscycle.info This site describes the book that originated the diet, Elaine Gottschall’s “Breaking the Vicious Cycle.”
4. http://pecanbread.com An information clearinghouse about SCD for parents of children with IBD.
At the age of 16 my son’s bowel perforated and he had emergency surgery. Then was diagnosed with Crohns. He has been on immuran for years and has two fistula’s. He is very depressed and angry about having this disease. This diet really interests me and I am going to do my homework. I am going to educate myself and my family in hopes for a better life for my son. Is it possible that he will be able to come completely off his meds? If so that would be a dream come true. Thank you for putting this article out so we can all improve our loved ones lives.
Just curious about Ensure as it has carrageenan in it which is a gut irritant
http://www.crohnsforum.com/wiki/Carrageenan
Hi. Can this diet be published for the public or could you work in conjunction with the Children’s in Philly? Thanks, jen
http://www.breakingtheviciouscycle.info
This is the diet. So glad the medical community is finally paying attention
How do I find out more about the SCD? I have had Crohn’s since first grade. Actually was diagnosed with Colitis as Crohn’s was unknown at that time. However, Doctors figure it was indeed Crohn’s not Colitis. I struggled throughout my entire childhood. I am now 57 and am struggling more than ever. At this point I am willing to try anything to achieve some relief.
This is great that the Specific Carbohydrate Diet is getting notice by mainstream western medicine. The diet was actually first documented on the 1920s, so it is not new at all. For those of you that want to learn about it, Read Elaine Gotchall’s Book “Breaking The Vicious Cycle” or check out the website: http://www.breakingtheviciouscycle.info
Our 13 yr old son was diagnosed with Chron’s Disease over the summer, and we, too, decided on the liquid diet for 10.5 weeks followed by a strict SCD diet. He has done miraculously well with this, as he is slowly gaining weight, feeling better, and lab tests are heading in the direction of healing. Can’t wait until we get him into full remission. That’s the goal. This is not an easy path, though I suppose somewhat easier than the path of full lifetime of medication, considering that medications don’t work well forever and put a different strain on the body. This is such a complicated disease, and everyone’s bodies seem to respond differently to different things. There are some really good books out there about the SCD diet, including one called Cooking for the Specific Carbohydrate Diet, and paleo recipes can be easily modified to meet the requirements. Pinterest is also a good source for recipes. Some of our favorites are banana bread, chicken parmesan, green beans, homemade jello, bone broth, and apples and peanut butter. Food choices are limited, but with a little creativity and a lot of persistence, this can certainly work out.