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Stanford pediatric gastroenterologist answers your questions on inflammatory bowel diseases

Stanford pediatric gastroenterologist answers your questions on inflammatory bowel diseases

sick_kid_072313While nearly every adult and child experiences stomach issues once in a while, millions suffer from serious autoimmune problems in the intestine, such as celiac disease, and inflammatory bowel disorders, including Crohn’s disease and ulcerative colitis. These chronic digestive diseases, which have no known medical cure, commonly require a lifetime of care for patients.

Ongoing research at Stanford and elsewhere aims to forge new avenues for the diagnosis, therapy and prevention of these diseases. At Stanford, KT Park, MD, an instructor in pediatric gastroenterology, studies the pharmaco-economics of various therapeutic and diagnostic strategies for chronic gastrointestinal diseases, with particular interests in Crohn’s disease, ulcerative colitis, celiac disease and chronic abdominal pain. He is also an attending physician for the gastroenterology and hepatology services at Lucile Packard Children’s Hospital.

For this month’s Ask Stanford Med, we asked Park to answer your questions on advancements in research and treatments for pediatric gastrointestinal diseases. He responds to your questions in a two-part Q&A, first discussing research on fecal microbiota transplantation, the role of diet in treating Crohn’s, and IBD in the developing world.

Migdalia Ramos asks: Why isn’t fecal microbiota transplantation (FMT) seriously researched as a treatment for children with IBD?

You are correct in that the representative literature on fecal microbiota transplantation in IBD is lacking, although one small observational study in children was recently published. The paucity of data doesn’t  mean that scientists and IBD clinicians aren’t thinking about it. As you may know, FMT – after much advocacy by patients, various advocacy groups, and gastroenterology societies such as the American Gastroenterological Association – is now approved by the U.S. Food and Drug Administration for recurrent Clostridium difficile (C. difficile) infections and colitis, subject to ongoing regulatory oversight. Over 14,000 Americans die from C. diff annually. In fact, almost all major FMT literature is in the treatment of recurrent C. difficile colitis, which has over a 90 percent efficacy rate. Despite the success in eradicating C. difficile, FMT cannot be assumed to be safe or effective as a first-line therapy option in IBD, much less IBD in children. A recent systematic review (subscription required) which summarizes what is known and studied regarding FMT and IBD is published in Aliment Pharmacol Therapeutics and available (login required) for free on Medscape.

For now, I offer two additional items to consider. First, in the United States, FMT as per the FDA is considered an investigational new drug. As such, researchers are subject to the same jurisdiction as with any novel pharmacological agent. For clinicians, patient safety has to always take priority. At the moment, I know of one phase I study, which was approved by the FDA for research after two years of rigorous review, evaluating the safety and efficacy of FMT in ulcerative colitis in adults led by researchers at the University of Chicago. Second, despite the seemingly slow beginnings, I think there will be a future for FMT in IBD, but only after experience and applicability have been shown in recalcitrant C. difficile infections. Consider an editorial earlier this year in the New England Journal of Medicine, discussing the history and the future potential of FMT in gastrointestinal diseases. Like you, I’m hoping for and working to support the data needed to establish safety and standardization of FMT for adults and children with IBD in the foreseeable future.

EC Smit asks: Why isn’t diet part of the treatment plan for Crohn’s disease when people who have excluded known gastrointestinal irritants, such as gluten and carrageenan, have found relief and remission?

Let me first try to address your concerns and questions with a concession. Interventional dietary alternatives in the treatment of IBD are often underemphasized. Knowing this, our Stanford group is longitudinally recording and making some headway in characterizing how specific and modified carbohydrate diets have impacted health for patients with Crohn’s disease. We’re still in the early phases of our prospective study, but we hope to gain more momentum.

With that said, I understand your perspective. Presently, the medical community in the United States can place more focus on pharmacological therapies than nutritional ones. I think this tendency may have to do with two important considerations. First, although Crohn’s disease is a gastrointestinal disease, it is in essence an autoimmune problem. Conventional and experiential wisdom tells us that controlling immune dysregulation requires immune-modulating agents, such as drugs that can help the body stop attacking its own cells or block the biological response that causes inflammation. And historically, we have found success with this established framework – as most Crohn’s patients achieve sustained remission following an evidence-based treatment plan. Despite the potential severity of the initial disease presentation, most patients return to living life without a noticeable difference in their overall quality-of-life.

Second, patient tolerance and continued adherence to the type of diet programs shown to be potentially effective in Crohn’s disease are difficult, to say the least. As you may know, the Specific Carbohydrate Diet (SCD) is one purported dietary intervention for Crohn’s disease. Although substantially more efficacy data are needed, we know that the SCD dietary plan is a very restrictive low carbohydrate diet, which is difficult to maintain strict adherence for patients, especially among children and adolescents. Similarly, elemental or polymeric diets, which have been reported to be helpful in active Crohn’s disease, are also difficult to perpetuate on a day-to-day basis for long-term disease management. For clinicians, we have to do our part in informing patients of all the alternatives while helping patients and their family to optimize daily quality-of-life.

Antonio Murcia asks: I want know what is known about ketogenic diet and very low carb diet (like paleo diet) to prevent inflammation in Crohn’s disease. Can they be a good way to manage the condition?

Very low carbohydrate diets, like the paleo diet, or the ketogenic diet have not been proven to be effective in the maintenance of Crohn’s disease, and there is one study reporting disease non-response. Most evidence in dietary therapy for Crohn’s lies in the elemental formula diet. Also, there are case reports of the Specific Carbohydrate Diet inducing Crohn’s disease remission. Please refer to my more detailed answer to the previous question regarding therapeutic diets and IBD.

Raj Kmar asks: Is there a difference in  the presentation of IBD among children in developing and developed countries?

This is a great question. In developing countries where access to care is difficult, we are not able to precisely estimate even the prevalence of IBD, let alone accurately describe any potential differences in the clincal presentation. In developed countries, the prevalence of IBD may be as high as 200 per 100,000 persons. My guess is that the overall presentation developing countries is similar to that of Crohn’s and ulcerative colitis presentation in the United States – abdominal pain, diarrhea, bloody stools and various signs of underlying inflammation.

However, marked differences could happen in the overall management of IBD, from initial diagnosis to ongoing maintenance treatment. For example, there have been case reports from developing countries of children with underlying IBD who were initially misdiagnosed for infectious colitis (e.g., parasites, tuberculosis, and enteric bacterial pathogens). I can see how this could be quite common because clinical intuition tells us that common things occur more commonly. In the developing world, infections rather than autoimmune diseases continue to be the primary cause of mortality and morbidity. In the case reports above, these patients often had concomitant gastrointestinal infection and underlying gut inflammation from undiagnosed IBD. The available literature also suggests that medical management is not always readily available. Patients who have been diagnosed may not have access to maintenance medications, and may have to rely more on steroids and surgery.

Sher Curly asks: I am also interested in FMT for treatment. I am curious whether you feel the potential for side effects is more, less or the same than traditional medications especially anti-tnf and 5ASAs.

This is a great question, but I don’t think anyone can offer any specifics at this time regarding the comparative effectiveness between FMT versus other conventional therapeutics. As remarked in my answer above, there is no consensus about how FMT might work best in the management of IBD. (Please refer to the previous systematic review I referenced.)

Standardization in FMT is lacking at the moment. So it is difficult to predict what type of maintenance FMT schedule (for example one-time vs. serial therapy), routes of delivery (naso-duodenal or gastric tube versus colonoscopic introduction versus enema) and donor screening regimens, and fecal preparation protocols are optimal for the various types of IBD. Different people have different disease severity with different areas of gastrointestinal tract affected. Similar to when classical pharamco-therapy options in IBD are considered, the goal of future FMT use in IBD should be to tailor an individualized treatment strategy that is specific to the unique patient profile and preferences – minimizing side-effects and risks while maximizing chances for sustained disease remission.

@LV2EVOLVE asks: Can #IBD mimic inflammatory pseudotumor cerebri?

As you know, pseudotumor cerebri is a condition where the intracranial (inside the skull) pressure increases, often without an identifiable cause. Pseudotumor cerebri is associated with severe headaches, among other neurological symptoms. While pseudotumor cerebri is not identified as one of the common extra-intestinal manifestations of IBD, there have been multiple case reports and editorials of pseudotumor cerebri occurring in the context of IBD, most often as a potential side-effect from corticosteroids (or steroids) and mesalamine.

If you’re not having a known IBD medication-related pseudotumor cerebri, it’s important to have a full consultation with a neurologist. Recurring headaches and pseudotumor cerebri are non-specific, and can occur from multiple triggering factors. A final note is that IBD can elevate systemic inflammation within the body’s blood vessels, even those that supply the brain, which can potentiate pseudotumor cerebri or even more serious vascular complications. So, the best advice is to make sure that the IBD is as well controlled as possible to avoid the systemic inflammatory effects itself.

Previously: Ask Stanford Med: Pediatric gastroenterologist taking questions on inflammatory bowel diseases, Chat with Stanford pediatric gastroenterologist on celiac disease research archived on Storify, Living the gluten-free life, Spreading awareness of inflammatory bowel disease, one bathroom stall at a time and Getting to know – and thanking – the faces of Crohn’s disease
Photo by Loren Kerns

8 Responses to “ Stanford pediatric gastroenterologist answers your questions on inflammatory bowel diseases ”

  1. Lenore Shapiro Says:

    You should check out The Foundation for Nutrition and inflammatory
    Bowel Diseases in Children,(NIBD) and the work they are doing with
    Nutrition research and juvenile IBD.
    Their website is and they are a national resource link for CCFA under kids and teens.

  2. Carol Frilegh Says:

    The SCD (Specific Carbohydrate Diet) is NOT a low-carb diet. It restricts a category of carbs (polysaccharides) and allows monosaccharides which are more easily digested. The daily amount of permitted carbs is not limited and the diet is designed to be balanced and nutritious. At the beginning, a full range of allowed foods is not given immediately but reached with gradual increases as tolerated. There are hundreds of recipes, some compliant ready made food. It is really so inaccurate that professionals mistakenly say SCD is Low Carb!

  3. tlam Says:

    After 30 years w crohns and 2surgeries I am essentially cured w the SCD. These doctors have NO IDEA what they are talking about. Fully 1/3 to 1/2 of my calories are from carbs in fruit. Doyyourself a favor and stop listening to the docs and go get the scd book.

  4. Maggie C Says:

    Please be aware that the paleo diet is by no means a low carb diet. It’s a grain-free diet (or low-grain, depending on your choices), but paleo dieters eat many many carbs in the form of high-carb vegetables at every single meal. Thanks!

  5. Laura Says:

    Thank you for addressing IBD treatments beyond the standard medical model of pills and injections.

    It is incorrect to state that “the SCD dietary plan is a very restrictive low carbohydrate diet, which is difficult to maintain strict adherence for patients, especially among children and adolescents.” First, as noted in several of the above comments, SCD includes tons of carbs, but only “specific” ones, as the diet’s name indicates.

    Second, as the parent of an adolescent on SCD, I can assure you that the incentive to stay strictly on the diet is enormous, namely, NOT BEING SICK ANYMORE. SCD eliminated all symptoms within a very short time. My teen did her own research into the side effects and costs of the current pharmaceutical treatments for Crohn’s, and is fully on board with SCD. It hasn’t been a problem for her at all. Her diverse group of friends includes kids who keep kosher, have milk or nut allergies, or who often bring exotic lunches prepared by their immigrant parents. Most of her friends are familiar with the Paleo diet which is similar to SCD. She can even eat at the most popular and ubiquitous fast-casual restaurant, Chipotle.

    I should add that we keep a SCD home and put a lot of effort into cooking and shopping to give us all a delicious and satisfying diet. The popularity of Paleo has inspired manufacturers to offer products that are also SCD-legal, such as no-sugar-added bacon from Gwaltney. Several recipe bloggers have provided us with excellent guidance and recipes, and are even compiling their own cookbooks.

    Please continue to accumulate data about dietary treatments for IBD. May I suggest creating a fact sheet for your patients to make them aware of the options? The “low residue” diet is really a lot more restrictive than SCD and Paleo!

  6. Diane P Says:

    It is high time that doctors start including additional treatment to their severely sick patients and get beyond medicine alone. The Specific Carbohydrate Diet is a wonderful nutritious diet that millions of IBD patients use around the world to sustain a healthy and normal life. When doctors misrepresent information that they’ve overheard rather than investigate fully for their sick patients, they are committing them to a lifetime of hell. SCD and meds should be the answer provided by all GI’s.

  7. Michelle Brandt Says:

    We are no longer taking questions on this topic.
    -Scope editor

  8. London Says:

    I am sorry, but after reading the comments above I feel that I need to stand up for Dr. Park. He did not say that the Paleo or SCD diet does not work. He is saying that there is hardly any actual medical evidence that it works. The study that he shared a link to above shows that 40% of people following the Paleo diet achieved remission as opposed to the placebo group in which 30% of people achieved remission. It’s not staggering. A comment above stated, “When doctors misrepresent information that they’ve overheard rather than investigate fully for their sick patients, they are committing (condemning) them to a lifetime of hell.” My argument is that by you asking the doctor to report that the SCD or Paleo diet work just by hearing your success story, you are being hypocritical. He has no evidence to say that it does work. He would be condemning them in a way by reccomending something that he does not know works.


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