Dr. David Suskind is leading a national effort to integrate nutritional therapy into clinical care for patients with inflammatory bowel disease (IBD). For many of us using diet therapy to help manage Crohn’s and Colitis, he is our hero. We are challenged almost daily by traditional medical institutions, often highly influenced by the powerful pharmaceutical industry, and are extremely thankful to have a leader as passionate, smart and driven as Dr. Suskind. He is empowering and inspiring.

Dr. Suskind is Director of Clinical Gastroenterology at Seattle Children’s Hospital and Professor of Pediatrics at the University of Washington School of Medicine. I had the honor of spending an hour on the phone with him, discussing the details of his latest study on the Specific Carbohydrate Diet (SCD), his childhood, the controversy around diet therapy and more. The SCD Diet is based on the chemical structure of foods and only allows monosaccharides (have a single molecule structure that allows them to be easily absorbed by the intestine wall). It eliminates all grains, gluten and sugars, as well as most dairy from the diet.

I tried to put myself in your shoes and think of as many questions as I could on as many different topics to ask Dr. Suskind. If you have other questions you would like asked, please leave them in the comments below and I will schedule another interview, ask those questions and get some answers.

Cindy Frei:  

Where did your passion for helping kids start? Where did that originate?

David Suskind:

As for many, it probably started with my parents. I know I’ve been a very lucky individual. I was born to a phenomenal mom and dad, who themselves worked very hard to make things better for people. When I was young, I spent a lot of time overseas and got to see the issues and problems there and saw how wonderful we had it, in terms of just life and resources and opportunities. That gave me the desire to continue to give back, because when you have a lot, it’s nice to pay it forward. That’s where I think it all started. Both my mother and father worked in Thailand, where I was born, and they worked in malnutrition. That’s where I think my passion for nutrition, helping people, and working with kids came from.

Cindy Frei:  

Why inflammatory bowel disease?

David Suskind:

It’s funny because I actually didn’t start in inflammatory bowel disease. I actually started in liver disease, and then I was drawn to not only the issue, the conditions that surround IBD, but really to the patients and the families themselves. As time went on, I just developed a further passion for it and was able to see the impact that this research had on families. It spurred me on. Why IBD? Because there’s a lot of need and there’s a lot of opportunity for making things better.

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Cindy Frei:  

How about the SCD Diet? When were you first exposed to it? Where did you hear about it, and what made you grab onto it?

David Suskind:

In terms of SCD Diet, I’ve always been interested in nutrition and actually prior to the SCD Diet and working in that area, I was Chair of the Nutrition Committee here at Seattle Children’s Hospital. Then one day, Tali Guday and her family, came and said, “This diet really works.” I was intrigued. I was fascinated, and that’s when I started the research. It just continued from there.

Cindy Frei:  

What has been the most interesting part or has touched you the most about the SCD Diet in your work?

David Suskind:

When I look at nutrition and look at the impact it has in IBD, but also in all medical conditions, you see a great opportunity, because not only do you see that nutrition works and nutrition has a great impact, but actually it comes back to the primary cause of IBD, which is the fecal micro biome. By studying nutrition, not only are we helping individuals in the here and now improve their disease, but we’re actually really coming to what is the cause? What is the trigger of IBD? The fecal micro biome is that.

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Cindy Frei:  

Why does the SCD Diet work for some people and not for others?

David Suskind:

This is why nutrition has to be studied, and this is why one study, two studies, three studies is never going to answer the full question. This is a continuum of studies that need to be done, hundreds, and thousands. Everybody’s IBD is different. Everybody as an individual is different. When we look at IBD, we see there are over 200 different genes associated with them, but on top of that, everybody’s micro biome is different. That interaction is extremely important. Why doesn’t diet work for everybody? It may be related to the genetic issue that is driving the disease, or it may be related to how we’re shifting the micro biome in relationship to that genetic issue. In essence, there’s a huge amount of opportunity and study that needs to go on to really find out why diet doesn’t work for everybody and what diet may be best for any one individual. It may be that it isn’t the SCD for one individual. It may be a different modification of diet that needs to occur to get them into clinical remission.

Cindy Frei:  

Diet therapy, as you know, is still very controversial. Why is that? Do you think it’s because of the power of the pharmaceutical industry?

David Suskind:

It’s a great question, and a hard question. The world is a very complex place. I think it’s not just one force that is driving it, meaning it’s not the pharmaceutical industry alone. It’s many forces combined to make what the world what it is. I think that dietary intervention is a difficult intervention for many individuals. We offer dietary intervention to any individual here who wants to do it, but it’s still a rather small percentage. About five, maybe ten percent of our population that does it, which really tells us that diet is important, but it may not be the treatment that every individual wants.

As a society, we have to say, diet is important. This is really something that needs to be studied and investigated. Not only saying that, but then driving the research either through discussions or through donations or financial contributions. The research that we’re doing here, yes, it started by myself driving it forward, but it would not have reached where it is today without the contributions of those people who wanted to see this research being done. It really takes a society, a group who wants to push this forward to get the answers.

Cindy Frei:  

What should parents say to a doctor who isn’t supportive of the SCD Diet or diet therapy? What’s the best place or resource to direct him or her on the science behind the diet?

David Suskind:

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I would say the NIMBAL website is the best resource, but I am biased. I think we are all continually learning, and there is still so much to learn. 

Being able to get a resource where you’re able to not only use diet on a day-to-day basis, but understanding what the science is behind the diet is very important. On the NIMBAL website, we have a research section, and we’re listing the studies that have been done, not only clinical studies, but also the basic science studies that focus on nutrition and IBD. There are many, but there are still not enough. We still need a lot more work to be done.

Cindy Frei:  

Simply speaking, can you explain how the SCD Diet works in controlling and managing IBD?

David Suskind:

It’s a great question. There are a number of mechanisms by which diet works. It’s likely the SCD diet works by not only changing the fecal micro biome or the bacteria within the GI tract. As you and many people know, the fecal micro biome is this diverse world within our GI tract, made up of a hundred trillion bacteria with diverse different species. Some of them are helpful, and some of them can instigate an inflammatory response. Diet actually shifts the type of bacteria you have in the GI tract. With the SCD, we believe it’s shifting it to a less inflammatory community of bacteria, but it’s probably not only the micro biome.

In addition, the SCD Diet removes many foods that are known to break down the intestinal integrity, or the wall that keeps out the bacteria from the body. There are many foods like emulsifiers and food additives that have been placed into the diet of a lot of processed foods that have been shown to break down that wall and make for a leaky gut, for lack of a better term. It’s probably those two components, the changing of the micro biome, as well as the breakdown of the wall, which can have a positive or negative effect on IBD.

Cindy Frei:  

  Tell me a little bit about the PRODUCE study and how it’s going so far.

David Suskind:

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The PRODUCE study is a phenomenal multi-center study, which is looking at how the SCD affects individuals with Crohn’s disease and Ulcerative Colitis. 

It is phenomenal primarily because it is a push by the medical establishment, medical world to really start answering the question of how diet affects patients with IBD. This is the first of its kind.

Cindy Frei:  

Are there any other studies in besides yours and the Crohn’s and Colitis Foundation study?

David Suskind:

Actually, there has been a significant push with a number of studies that are being done on diet and IBD. We ourselves have four additional studies here at Seattle Children’s, looking at diet and IBD. The University of Washington, a fellow by the name of Tim Zisman has two studies that are undergoing. There are multiple other studies across the nation that have begun, as well. I think for patients who are interested or individuals who are interested, the best way of finding out these studies are by going clinicaltrials.gov. You can get a list of all the studies that are being done in the US in any area.

Cindy Frei:  

Oh, okay. That’s interesting. How does Seattle Children’s Hospital compare to others in its work with IBD?

David Suskind:

I think we’ve had a very supportive hospital, division and very supportive patient population. We have been very lucky as a center to have all the pieces fall into place rather well. 

We have a hospital, which really wants to make sure and advocate for the patient, as well as advocating for interventions that are nutrition-based. Our hospital actually has made a new kitchen, which produces all the food, which is fresh, for patients and families, as well as staff. The other phenomenal thing about our hospital is that through our research and through what we’ve been able to show the hospital, they’ve become very supportive of the concept of dietary therapy in IBD and actually produce SCD foods for individuals who are in the hospital who want to start the diet or who are on the diet.

Cindy Frei:  

That’s great. That’s one of my hopes – to try to get SCD food into some of the GI units of hospitals. What’s your hope for the future, or if you were to look five, ten years from now, where would you hope SCD or diet therapy would be?

David Suskind:

My hope is multifold. My hope is that the SCD is a part of any center’s treatment options and care. My hope is that we are studying the SCD further so we really know the impact of the different foods that we’re eating. I know from the studies that we’re doing that there are some foods that are SCD illegal that we’ve been able to add in without issue. Making this diet more doable for patients, making it easier for patients is another hope and desire. I think another and extremely important hope and desire from not only the SCD, but the research that is being done in SCD is really giving us a clear idea of the cause, the etiology of IBD, because we do know that the genes are an important component of IBD, but we also know the micro biome is. You’re really studying the micro biome in IBD, and I think that’s going to give us answers for a cure one day.

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Cindy Frei:  

There’s many on the SCD that have concerns around nutritional adequacy of the SCD diet. If you have a child who’s already struggling with low weight and nutrition, is the diet safe?

David Suskind:

Just like any therapy, dietary therapy has to be tailored for the individual. There are individuals who should not be on the SCD. Patients who are significantly malnourished, with stricturing disease should not use the SCD. In addition patients with abscesses should not use the SCD as primary therapy. Treatment needs to be tailored to the individual; it needs to be personalized. For example for patients who are malnourished, there is EEN or Exclusive Enteral Nutrition which has been shown to have a very positive effect with clinical and biochemical remission in at least 80% of patients. From there patients can go on to the SCD. Medicine needs to really focusing on the individual to make sure that the dietary therapy is right for any patient at any one given point in time.

Cindy Frei:  

Any advice for parents just starting the SCD Diet?

David Suskind:

I think making sure that the child is wanting and able to participate is important. I think that we never want to push any type of therapy that may backfire. I think giving the parent, as well as the child, a little bit of not having to make it perfect at first. Making sure that they know that it will be difficult and there will be bumps in the road when starting the SCD, but like anything, the more you do it, the longer you do it, I think the easier it gets. Giving themselves and their family a break and not expecting too much too quickly.

Cindy Frei:  

Pam Ferro and I are starting to work together to raise awareness around SCD and the Autistic community. They’re seeing tremendous improvement in autistic symptoms with kids on SCD. Kids that are moving from non-verbal to verbal, and repetitive movements resolve and cognition is improving, really dramatic results. Have you worked with or heard about SCD with the autistic community or other conditions utilizing the SCD Diet?

David Suskind:

Yeah, I definitely have heard of it. I don’t have any personal experience with it. It would be outside of my area of expertise. Hopefully, just like in the IBD world, there will be individuals in the Autism world that will take this cause up and further research. It is the push forward of the families. It’s the push forward of individual investigators that hopefully will make that work.

Cindy Frei:  

Have you discovered any connection between the micro biome and behavior?

David Suskind:

There are definitely studies out there showing a link between the micro biome and behavior. The dilemma, like so many things, is that it’s preliminary, but unfortunately, it’s an area that I don’t have a huge amount of knowledge or expertise in. I wouldn’t be surprised that it has a significant impact. We do know that bacteria make pro-neurotransmitters, so the precursors to the neurotransmitters, so does it have an impact? Probably.

Cindy Frei:  

Is there anything else that we might have missed that we want to touch upon?

David Suskind:

The key really is to make sure that patients advocate for themselves, that they learn as much as their healthcare providers know, and that they work as a team with their healthcare providers, because nutrition, diet, is a lifestyle change. The doc is definitely there to help and make sure things go well, but nobody knows everything.

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Especially in terms of nutrition, being an advocate for yourself is very important. This is something I think is new for many healthcare providers, but if patients are positive and proactive, they can definitely get their docs onboard.

Change comes. It always comes very slowly, but it comes. I really do think that in the next five, ten years that dietary therapy will be a central part of everybody’s therapy.

Even if individuals are not on the SCD as their primary therapy, making sure individuals eat an overall healthy diet, removing as much of the food additives and increasing as much of the fruits and vegetables in an individual’s diet is going to have a big impact on IBD itself. Yeah, I think that may be the biggest message.

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An Interview With Dr. David Suskind: Why Diet Therapy Helps IBD
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