Crohn's and Colitis Foundation of America Features Article 
about the Specific Carbohydrate Diet
by Erin, March 2014

During a recent web search about the Specific Carbohydrate Diet (SCD), I was pleasantly surprised to come across an article on the Crohn's and Colitis Foundation of America’s (CCFA) website entitled, “The Specific Carbohydrate Diet: Does it Work?” (http://www.ccfa.org/about/news/scd).

From what I have read on the Long Island List Serve since I began the SCD 2001, many people on the SCD have been frustrated at the lack of response from the CCFA in past years as they have received little to no response from their letters, emails, and phone calls asking the CCFA to provide its constituents with information about the SCD. It seemed strange that a foundation devoted to researching Crohn’s and colitis in order to find a cure for these diseases would be silent on such a promising treatment. It looks like we SCDers have finally been acknowledged by the CCFA, and I was happy to see that Debra Gordon had written an article that was generally fair, if also a tad negative toward the SCD. Publicity is publicity, however, and I hope the article will educate the millions of people who suffer with digestive illnesses, so they will finally have the option of trying the SCD. To keep the diet under wraps would be truly sad for all of the people who think they have done everything they can to deal with their disease only to continue to endure pain, weight loss, surgery, medicinal side effects, and many of the other consequences of current mainstream treatments of Irritable Bowel Diseases.

As I read the article, a few points jumped out at me and I would like to go through these in a little more detail. First, I noticed that the author quoted doctors who were largely unfavorable toward the SCD. I have heard through the Long Island List Serve of doctors who are very supportive of the SCD, but I did not see any of these doctors quoted. The ones who were referenced brought up several issues with the diet that are not entirely correct. Arthur D. Heller, M.D. said of the SCD, "'Foods are excluded,’ he says, ‘because of their purported inability to be digested well. But of the foods allowed, legumes are known to contain certain carbohydrates that are not well digested by humans. And while the diet prohibits regular sugar, it allows most fruits and fruit juices, 

which are high in fructose, or fruit sugar. Not only is fructose dense in carbohydrates, but fructose malabsorption can cause cramps and diarrhea, intensifying the very symptoms the diet is designed to alleviate.’" Technically, the SCD excludes foods based on their long-chain carbohydrate make-up, not because of their “purported inability to be digested well.” This is the foundational principle of the entire diet: exclude all long-chain carbohydrates and the bacteria in the digestive system will not have the fuel they need to overgrow. It is this overgrowth of “bad bacteria” that causes IBD symptoms. Some people have problems absorbing the fructose in fruit, but this is very rare and if this is discovered while on the diet, the person simply eliminates fruit from their diet until they are able to tolerate it at a later time.

While the article acknowledges that part of the reason the SCD is not successful for all people is because of its requirement for strict adherence, it also quotes Dr. Loftus, who says, "In my experience, for every patient I see who tried the diet and it worked, there are three to four others who tried it and it didn't work." This disparaging comment could deter people from trying the diet, when they really should be encouraged that if they follow the diet strictly for a month or more they will be almost certain to see results. In my experience, the main reason the diet does not work for people is because they have not committed to following it 100%, not because it arbitrarily works for some people and just doesn’t work for others. There may be a few people who did not respond well to the diet for some reason, but this seems to be a rare occurrence. The SCD requires absolute adherence, but is there anything in life that is worth achieving that doesn’t require some hard work? As a person continues eating 100% SCD food, the benefits far outweigh the work that is involved. If living a normal and healthy life is your goal, there is a huge chance that you will be able to achieve it using the SCD. And for me, having a life free of medication, surgery, pain, immobility, side effects, and limitations is completely worth the extra food preparation – that is what motivates me to stay on the SCD 100%. Life has given me some lemons and I’m happy to take the effort to make lemonade!

I was happy to see that doctors are starting to see the biological proof of the theory behind the SCD: “Drs. Loftus and Sandborn note that some aspects of the theory behind the SCD make sense. For instance, current thinking holds that IBD is caused by an abnormality that prevents the immune system in the gut from shutting itself off when it encounters bacterial or viral threats, real or ‘imagined.’ So if you starve the bacteria in the gut via this elemental diet, says Dr. Loftus, there may be fewer stimuli, resulting in less inflammation.”

Dr. Bousvaros is also quoted as being concerned that children on the SCD are not getting enough calories. This is surprising to me, because the diet actually offers many sources of calories, such as nuts, cheeses, and whole milk yogurt. There are many reports of people of all ages gaining their much-needed weight back within weeks or months of beginning the diet, and I know from experience that it is easy to even gain a little too much weight if you don’t balance the calories out correctly each day (something that many underweight people with IBD would cheer over!). And as for Dr. Bousvaros’ concern that the SCD could be “psychologically stressful” for children, I would think that finally gaining weight back, and being free of the limitations of pain, diarrhea, medication and surgery would be far more freeing to a child than psychologically stressful. If the child is supportive of the diet, and they can learn to be confident in what they are eating and why they are eating differently from other children, the SCD can be a very positive experience for them.

I am glad that the word is out about the SCD in the Crohn's and Colitis Foundation of America community, and I applaud Debra Gordon for her research and boldness in writing this article. If the difficulty of the SCD is the number one reason people are not successful on the SCD, I hope that through this website I can make your own journey with the SCD easier, and thus increase the chances that you will stay on the diet. Please know I am here to help! Let me know on Facebook if you have questions, need encouragement, or have any ideas I can implement on this site to help you succeed on the SCD.

Erin at NoMoreCrohns.com

---

The following excerpts from an article on the Crohn's & Colitis Foundation's website show encouraging
news about the CCFA's willingness to consider the SCD as a valid treatment approach. This study has come
about at the insistence of patients who have found health and success on the SCD. We applaud this study and
hope it will result in the SCD becoming a mainstream treatment option for all people with irritable bowel diseases.
See our Recent Research ​page for more information about the National Study of Dietary Interventions.

---

First-Ever National Study of Dietary Interventions to Treat Crohn's Disease Receives Funding
March 24, 2016
​
Patient-Centered Outcomes Research Institute awards CCFA $2.5 million to study diet as a tool for managing Crohn’s disease symptoms
​

"NEW YORK, NY – For the first time ever, dietary intervention will be the focus of a major national research study of patients with Crohn’s disease. The Crohn’s & Colitis Foundation of America (CCFA) announced today that it was awarded $2.5 million from the Patient-Centered Outcomes Research Institute (PCORI) to study the effectiveness of the specific carbohydrate diet and Mediterranean-style diet to induce remission in patients with Crohn’s disease. A patient-generated research question posed through CCFA’s patient-powered research network(PPRN), CCFA Partners, served as motivation for this study concept. "

"The study seeks to compare the effectiveness of the specific carbohydrate diet and a Mediterranean-style diet in inducing symptomatic and clinical remission and in reducing the mucosal inflammation in patients with active Crohn’s disease. The specific carbohydrate diet was selected because of its popularity among patients and the evolving medical literature suggesting potential therapeutic benefit. The Mediterranean-style diet was chosen as the alternative diet based on the strong evidence of its role in overall health, indirect evidence suggesting a potential benefit for Crohn’s disease, and easier implementation in routine life."

"Patients will enroll in the clinical trial at local clinical sites and will be randomly assigned to one of the diets. Meals will be provided at no cost for six weeks through a meal delivery service, Real Food Works, and patients will have the opportunity to continue purchasing meals afterward. Patient-reported outcomes will be used to assess disease activity on a weekly basis using the CCFA Partners infrastructure. Disease activity will also be assessed by the treating physician before the study begins, at six weeks, and 12 weeks. Mucosal inflammation will be assessed by measuring the concentration of calprotectin in the feces at baseline, six weeks, and 12 weeks."

To read the entire article, visit the Crohn's and Colitis Foundation.

---

Mention of the SCD in a CCFA Brochure

The CCFA includes a minor reference to the Specific Carbohydrate Diet on page 9 of its 2013 brochure about irritable bowel diseases. This is encouraging because it shows that the SCD has been followed successfully by so many people that it cannot be ignored. We agree that any discussion of how to deal with Crohn's and other IBDs must, in all fairness to the patient, mention the SCD!

---

A Place on the CCFA Website to Share Your Thoughts on the SCD

Place your comment on "benthehood's" post of January 4, 2017 where he discusses improvements to his health after trying the SCD for a month. You must be part of the Crohn's & Colitis community to comment.