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Practice Applications Case Study| Volume 115, ISSUE 8, P1226-1232, August 2015

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The Specific Carbohydrate Diet for Inflammatory Bowel Disease: A Case Series

Open AccessPublished:July 22, 2015DOI:https://doi.org/10.1016/j.jand.2015.04.016
      The pathogenesis of inflammatory bowel disease (IBD) is thought to be multifactorial, involving a genetically susceptible individual being exposed to a yet-to-be identified environmental trigger or set of triggers. There is growing evidence that IBD may be a disease of Westernization associated with diets high in refined sugars; bread and cereals; proteins, especially dairy; and n-6 polyunsaturated fatty acids acquired from highly processed seed oils. However, the evidence is often low quality, conflicting, and inconclusive.
      • Wong S.H.
      • Ng S.C.
      What can we learn from inflammatory bowel disease in developing countries?.
      • Sartor R.B.
      Clinical applications of advances in the genetics of IBD.
      • Bernstein C.N.
      • Shanahan F.
      Disorders of a modern lifestyle: Reconciling the epidemiology of inflammatory bowel diseases.
      • Chapman-Kiddell C.A.
      • Davies P.S.
      • Gillen L.
      • Radford-Smith G.L.
      Role of diet in the development of inflammatory bowel disease.
      • Asakura H.
      • Suzuki K.
      • Kitahora T.
      • et al.
      Is there a link between food and intestinal microbes and the occurrence of Crohn's disease and ulcerative colitis?.
      The Specific Carbohydrate Diet (SCD) is a dietary program that claims to induce and maintain drug-free remission in patients with IBD. It was initially developed by gastroenterologist Sidney Haas in 1951 and later popularized by biochemist Elaine Gottschall in the book Breaking the Vicious Cycle: Intestinal Health Through Diet.
      • Haas S.V.
      • Haas M.P.
      Management of Celiac Disease.
      • Gottschall E.
      Breaking the Vicious Cycle.
      The diet allows carbohydrate foods consisting of monosaccharides only and excludes disaccharides and most polysaccharides (such as linear or branch-chained multiple sugars or starches). The diet is supplemented by homemade yogurt fermented for 24 hours to free it of lactose, a disaccharide not allowed in the SCD. Recommended cultures include Lactobacillus bulgaricus, Lactobacillus acidophilus, and Streptococcus thermophilus. The SCD allows almost all fruits, vegetables containing more amylose (a linear-chain polysaccharide) than amylopectin (a branch-chained polysaccharide), nuts, nut-derived flours, dry-curd cottage cheese, meats, eggs, butters, and oils. It excludes sucrose, maltose, isomaltose, lactose, grain-derived flours and all true and pseudograins, potatoes, okra, corn, fluid milk, soy, cheeses containing high amounts of lactose, as well as most food additives and preservatives. The typical starting dieter begins eating foods that are thought to be well tolerated, including cooked, peeled, and seeded fruits and vegetables, and over time other foods are added slowly to partially liberalize the diet.
      The SCD is not a low-carbohydrate diet, but rather a diet that is predominantly composed of monosaccharaides, solid proteins, fats, a high ratio of amylose to amylopectin vegetables, fruits, and nuts. Gottschall
      • Gottschall E.
      Breaking the Vicious Cycle.
      hypothesized that patients with IBD can only optimally absorb the monosaccharides glucose, galactose, and fructose due to a dysfunction of the host’s disaccharidases that are necessary for digestion and absorption of disaccharides and high amylopectin foodstuffs. This dysfunction is posited to arise from excessive mucus production preventing the brush border intestinal enzymes from making contact with the disaccharidases and amylopectin causing maldigestion. Further, toxic substances produced by dysbiosis of the luminal microbiota (eg, the overgrowth of yeast and bacteria) in the small intestine may cause damage to intestinal cell membranes and destroy brush boarder enzymes.
      • Gottschall E.
      Breaking the Vicious Cycle.
      A diet containing carbohydrate from primarily monosaccharide sources such as fructose (as in fruits and honey) and higher amylose:amylopectin vegetables, butter or oils, and solid proteins could optimally nourish a patient with IBD and result in lower amounts of disaccharide sugars entering the colon, preventing and reversing a significantly altered and dysfunctional microbiota postulated to be present in the gastrointestinal tract of patients with IBD.
      • Gottschall E.
      Breaking the Vicious Cycle.
      Neither the characteristics of patients who are following the SCD nor the benefits of this diet have been well described in the medical literature. Herein, we report on the largest series of patients with IBD following the SCD to date and describe their clinical characteristics.

      Patient overview

      We collected survey data from patients with IBD following the SCD living within the continental United States. Subjects were recruited through advertisements posted on SCD message boards and websites as well as through our own gastroenterology clinics. Subjects mailed their medical records and filled out a structured survey of their medical history, a 3-day diet diary, and a validated disease activity index. The modified Harvey-Bradshaw Index was used for Crohn’s disease (CD),
      • Harvey R.
      • Bradshaw J.
      A simple index of Crohn's-disease activity.
      the St Mark’s Index was used for ulcerative colitis (UC),
      • Powell-Tuck J.
      • Bown R.
      • Lennard-Jones J.
      A comparison of oral prednisolone given as single or multiple daily doses for active proctocolitis.
      and both indexes were used for cases of indeterminate colitis (ID). Presence of gastrointestinal symptoms within 1 week of the data collection was assessed with the use of a structured survey called the Gastrointestinal Symptom Severity Checklist, which is designed similarly to validated Gastrointestinal Symptom Rating Scale but expanded to include additional symptoms that may not be captured by the Gastrointestinal Symptom Rating Scale.
      • Svedlund J.
      • Sjödin I.
      • Dotevall G.
      GSRS—A clinical rating scale for gastrointestinal symptoms in patients with irritable bowel syndrome and peptic ulcer disease.
      In addition, on the Gastrointestinal Symptom Severity Checklist each subject is asked to rate one symptom at a time on a visual analog scale from 0 to 10, with higher scores corresponding to increasing severity and frequency of the symptom. The subject’s quality of life was assessed by a validated instrument, the Short Quality of Life in Inflammatory Bowel Disease Questionnaire (SIBDQ).
      • Alcala M.
      • Casellas F.
      • Fontanet G.
      • et al.
      Shortened questionnaire on quality of life for inflammatory bowel disease.
      Subjects also rated their self-adherence to the SCD and the effectiveness of the SCD on a visual analog scale of 0% to 100%.
      Subjects were included in the study if they had documented IBD by a physician within the United States and reported to follow the SCD. All diagnoses of IBD were confirmed by review of endoscopy, radiology, and pathology reports by a board-certified gastroenterologist who specializes in IBD at Rush University. Remission was defined as a Harvey-Bradshaw Index <5 for CD and St Mark’s Index <4 for UC. Both surveys needed to reflect remission for ID.

      Ethical Considerations

      The Rush University Medical Center Institutional Review Board approved the study protocol and all participants provided written informed consent (and child assent, if appropriate).

      Intervention results

      We obtained data on 50 cases in remission: 36 subjects had CD, 9 subjects had UC, and 5 subjects had ID. The subject demographic characteristics and disease locations are given in Table 1. The mean age was 36 years (range=10 to 66 years). Twenty-nine subjects (58%) were female. Of patients with CD, the most highly represented subtype was colonic disease in 16 patients (three of whom also had upper GI involvement) and ileocolonic disease in 14 patients (three of whom also had upper GI involvement). Of the patients with UC, six had left-sided disease and two had pancolitis. All subjects were in remission: the mean Harvey Bradshaw Index was 0.9 (range=0 to 4) and the mean St Mark’s Index was 1.4 (range=0 to 3).
      Table 1Demographic characteristics of a cohort of 50 patients with inflammatory bowel disease in remission following the Specific Carbohydrate Diet
      Case no.DiseaseLocationAgeSexDuration of disease (mo)Duration of diet (mo)Level of educationForbidden food(s)Medication(s)
      1UC
      UC=ulcerative colitis.
      Pancolitis56M
      M=male.
      28876CollegeNoneLDN
      LDN=low-dose naltrexone.
      2UCRectosigmoid56F
      F=female.
      384216CollegeNoneNone
      3UCPancolitis41F369CollegeNoneMesalamine (Asacol
      Asacol (Warner Chilcott Company, LLC).
      ), LDN, azathioprine
      4UCRectosigmoid35F10882CollegeNoneLDN
      5UCRectosigmoid38F20440CollegeNoneMesalamine suppositories
      6UCRectosigmoid41M4813Graduate degreeNoneMesalamine (Lialda
      Lialda (Shire US, Inc).
      ), mesalamine enema
      7UCRectosigmoid32F1327CollegeNoneInfliximab
      8UCProctitis35M244Graduate degreeNoneMesalamine (Lialda)
      9UCPancolitis25F3242Graduate degreeNonePrednisone (1 mg), sulfasalazine (Azulfadine
      Azulfadine (Pfizer, Inc).
      ), mesalamine enema
      10CD
      CD=Crohn’s disease.
      Ileocolonic29M32419Graduate degreeNoneMesalamine (Pentasa
      Pentasa (Shire US, Inc).
      ), infliximab
      11CDColonic61F3610High schoolNoneMesalamine
      12CDColonic48M246Graduate degreeNoneNone
      13CDIleocolonic27M1568CollegeNoneAdalimumab, LDN, budesonide
      14CDColonic40F7260Graduate degreeChocolateNone
      15CDUpper GI
      GI=gastrointestinal.
      +colonic
      10M6039Middle schoolIce creamNone
      16CDUpper GI+ileocolonic11F248Middle schoolRiceMesalamine (Asacol)
      17CDIleocolonic31F15614CollegeNonePrednisone (1.5 mg), infliximab, LDN
      18CDUpper GI+ileocolonic11M247Middle schoolNoneNone
      19CDUpper GI+ileocolonic9M8466Middle schoolNoneNone
      20CDIleum52M3614CollegeNoneMesalamine (Pentasa)
      21CDUpper GI+ileum49M3845CollegeNoneNone
      22CDIleocolonic41M19231CollegeNoneBalsalazide
      23CDUpper GI+colonic13F3614Middle schoolCream, canned vegetables, eucharist hostNone
      24CDIleocolonic44M34872CollegeCoffeeNone
      25CDColonic19F241CollegeNoneNone
      26CDColonic37F3616Graduate degreeNoneNone
      27CDIleum65M420132Graduate degreeNoneMesalamine (Asacol), mesalamine enema, colestipol
      28CDIleocolonic49F12012CollegeEspresso6-MP
      6-MP=6-mercaptopurine.
      29CDColonic44M3002CollegeNoneNone
      30CDColonic30F3614CollegeCoconut water, chocolateMesalamine (Lialda)
      31CDIleocolonic31F132111CollegeNoneNone
      32CDColonic39M276158Graduate degreeSalad dressingNone
      33CDIleocolonic58F38424Graduate degreeNoneLDN
      34CDIleum51F486Graduate degreeNoneNone
      35CDColonic43F249CollegeNoneNone
      36CDColonic29F3617CollegePotatoesNone
      37CDUpper GI+ileum19M3613High schoolBrown rice, corn6-MP
      38CDUpper GI+colonic52F168162CollegeMatzah once a yearNone
      39CDColonic42F4810Graduate degreeNoneMesalamine (Asacol)
      40CDColonic49F244CollegeNoneMesalamine (Lialda)
      41CDColonic59F8412CollegeMilk, candy, cookiesMesalamine (Lialda)
      42CDIleocolonic11F248Middle schoolNoneLoperamide (Imodium)
      43CDIleocolonic15F126High schoolNoneMesalamine (Asacol), 6-MP
      44CDGastric12M3622Middle schoolSchool lunchesNone
      45CDIleocolonic29M6060Graduate schoolNoneLDN, adalimumab
      46ID
      ID=indeterminate colitis.
      Sigmoid to distal transverse, rectal sparing31F846Graduate degreeNoneMesalamine (Asacol)
      47IDRight colon17M608High schoolCorn tortillas, potatoesMethotrexate
      48IDRectosigmoid56F4816CollegeNoneNone
      49IDPancolitis, sparing rectum39M24072Graduate degreeSpelt bread, raw milk, baked goodsNone
      50IDRight colon, rectosigmoid46M10848CollegePizzaHydrocortisone enema
      a UC=ulcerative colitis.
      b M=male.
      c LDN=low-dose naltrexone.
      d F=female.
      e Asacol (Warner Chilcott Company, LLC).
      f Lialda (Shire US, Inc).
      g Azulfadine (Pfizer, Inc).
      h CD=Crohn’s disease.
      i Pentasa (Shire US, Inc).
      j GI=gastrointestinal.
      k 6-MP=6-mercaptopurine.
      l ID=indeterminate colitis.
      The mean GSSC score was 27.1 for CD, 25.9 for UC, and 13.6 for ID (range=0 to 144), reflecting mild gastrointestinal symptoms. The individual symptom scores are shown in Table 2.
      Table 2Gastrointestinal Symptom Severity Checklist (GSSC) results for cohort of 50 patients with inflammatory bowel disease in remission following use of the Specific Carbohydrate Diet
      GSSC itemCrohn’s Disease (n=36)Ulcerative Colitis (n=9)Indeterminate Colitis (n=5)
      % >0Mean% >0Mean% >0Mean
      Upper abdominal pain or discomfort27.80.633.30.720.00.2
      Lower abdominal pain or discomfort44.40.855.61.420.00.2
      Upper abdominal cramping16.70.411.10.100
      Lower abdominal cramping22.20.422.20.600
      Pain associated with eating11.10.422.20.400
      Bloating30.61.333.31.240.00.8
      Belching33.30.733.30.620.00.4
      Passing gas66.71.877.82.240.00.6
      Excessive gas overall38.91.266.71.220.00.2
      Heartburn16.70.633.30.720.01.6
      Indigestion13.90.333.30.700
      Nausea13.90.622.20.620.00.4
      Nausea associated with eating13.90.511.10.320.00.4
      Frequent bowel movements13.90.933.30.620.00.2
      Vomiting13.90.40000
      Alternating bowel movements between constipation and diarrhea22.20.433.30.820.00.2
      Constipation >70% of the time22.20.511.10.300
      Diarrhea >70% of the time33.31.011.10.100
      Irregular bowel habits30.60.833.30.420.00.2
      Infrequent bowel movements27.80.533.30.700
      Hard stools36.11.033.30.720.00.4
      Watery stools47.21.644.40.920.00.6
      Soft stools41.71.666.73.660.01.4
      Passage of mucous in the stool19.40.533.31.320.00.2
      Passage of blood in the stool (without presence of hemorrhoids)27.80.833.30.820.00.2
      Straining with bowel movements38.90.911.10.400
      Fecal urgency41.71.466.71.140.01.0
      Bowel incontinence13.90.50000
      Sensation of incomplete emptying of bowels38.90.755.60.820.00.2
      Loss of appetite11.10.522.20.200
      Weight loss27.80.955.61.840.01
      Decreased food intake because of symptoms13.90.611.10.100
      Difficulty swallowing2.800000
      Pain with swallowing000000
      Food coming up to mouth2.80.10000
      Acid taste in mouth5.60.10020.01.6
      Intolerance to multiple foods38.91.833.30.720.01.6
      Overall86.127.188.925.980.013.6
      Patients following the SCD in remission had a high quality of life with a mean SIBDQ score of 60.9 (range=35 to 70). The results for the subscales of SIBDQ are given in Table 3.
      Table 3Short Quality of Life in Inflammatory Bowel Disease Questionnaire (SIBDQ) of a cohort of 50 patients in remission following use of the Specific Carbohydrate Diet
      Patient’s conditionSIBDQ Subscale Scores (mean±standard deviation)
      BowelSystemicEmotionalSocialTotal
      Overall (n=50)18.9±2.411.7±2.216.7±3.313.5±1.160.9±6.5
      Crohn’s disease (n=36)18.8±2.611.9±2.116.6±3.513.5±1.360.9±6.9
      Ulcerative colitis (n=9)18.4±2.111.3±2.316.7±2.713.4±0.959.9±5.7
      Indeterminate colitis (n=5)20.4±0.911.6±2.917.2±3.414.0±0.063.2±4.3
      The breakdown of medication use among the subjects with CD and UC are given in Table 1. In the CD group, eight subjects were taking immunosuppressive medications and only one patient was not steroid-free and was taking prednisone at a dose of 1.5 mg daily. Nineteen subjects with CD were not taking any medications for their IBD. Past medication use in this group before starting the diet included mesalamine-based drugs in 15 subjects, prednisone in 12 subjects, budesonide in two subjects, 6-MP in four subjects, infliximab in one subject, certolizumab in one subject, ciprofloxacin in four subjects, and metronidazole in six subjects. In the UC group, three patients were taking immunosuppressive agents and only one patient was not steroid-free and was taking prednisone at a dose of 1 mg daily. One subject with UC was not taking any medications. Prior use of medications in this subject included prednisone, 5-aminosalicylates, and 6-MP. In the ID group, one subject was taking an immunosuppressive agent. Two subjects with ID were taking no medications. Prior use of medications in this group included prednisone and mesalamine drugs in both subjects and infliximab and ciprofloxacin in one subject. Therefore, out of 22 patients who were taking no medications at all, 16 had discontinued all steroids (14 were taking prednisone and two were taking budesonide), three had discontinued TNF inhibitors, and five had discontinued 6-MP and had remained in remission.
      The mean time the SCD was followed was 35.4 months (range=1 to 216 months). Forty-four subjects (88%) reported eating the SCD yogurt, 33 of whom (67%) ate it daily. Twenty-six subjects (52%) reported using a supplementary probiotic. The most common probiotics used were Lactobacillus and Acidophilus species (13 CD patients and four UC patients) and Saccharomyces boulardii preparations (4 CD patients and one UC patient).
      Patients’ self-rating of compliance with the SCD diet on a visual analog scale of 0% to 100% had a mean adherence rating of 95.2% (range=71% to 100%). The Figure shows an example of a 3-day diet diary of one of the subjects in the study that is an accurate representation of the foods allowed on the SCD. Although the diet requires strict adherence, there were still 16 subjects (32.1%) (12 CD patients and four ID patients) who reported occasional ability to eat some “forbidden” foods (Table 1). Of these 16 subjects, 14 had CD and two had ID. All subjects were eating SCD yogurt and had been following the SCD diet for at least 8 months. Seven (43.7%) of these 16 patients who were eating “forbidden” foods were also taking some type of maintenance medication (Table 1).
      FigureActual 3-day food diary for one patient following the Specific Carbohydrate Diet demonstrating a representative menu.
      Day 1
       Breakfast2 eggs, yogurt with farmer’s cheese, honey
       LunchCube steak, apples, green beans, carrots
       DinnerSteak, carrots, green beans
       SnacksGrape juice, gelatin, peanut butter brownies, apples
      Day 2
       Breakfast2 eggs, yogurt with farmer’s cheese, honey
       LunchSteak, apples, asparagus
       DinnerTurkey burger (no bun), apples, carrots, boiled shrimp
       SnacksPeanut butter brownies, grape juice
      Day 3
       Breakfast3 eggs, yogurt, honey
       LunchChicken thighs, asparagus, baked apples, honey
       DinnerPork with pineapple, carrots, asparagus, peaches
       SnacksPeanut butter brownies, grape juice
      Table 4 shows the reasons that patients started the SCD. Forty-one patients (82%) reported that one of the reasons they started the diet was fear of long-term consequences of medications. Other common reasons included the belief that the SCD was more effective than medications (64%), medications were not effective (64%), adverse reaction from a prior medication (56%), and recommendations from Internet forums (44%).
      Table 4Reasons reported by cohort of 50 patients with inflammatory bowel disease in remission for choosing to implement the Specific Carbohydrate Diet (SCD)
      ReasonCases (n)%
      Fear of long-term consequences of medications4182
      Efficacy of SCD compared with medications3264
      Medications not effective3264
      Adverse reactions to medications2856
      Recommendation from Internet forum2244
      Recommendation from family/friends1530
      Breaking the Vicious Cycle book
      • Gottschall E.
      Breaking the Vicious Cycle.
      48
      Cost of medications12
      Seeking alternative treatment to medications12
      Fear of need for surgery24
      Fear of colon cancer12
      Mean time for food preparation per week was 10.8 hours (range=0 to 32 hours). Twenty-four (58.5%) of 41 adult subjects were able to hold full-time jobs while implementing the diet. Mean time to see some improvement when following the SCD was 29.2 days (range=1 to 180 days). Thirty-three subjects (66%) noted complete symptom resolution, which did not occur until a mean of 9.9 months (range=1 to 60 months) after starting the SCD. Patients’ self-report of the effectiveness of the SCD was obtained via visual analog scales: SCD was rated as a mean of 91.3% effective in controlling acute flare symptoms (range=30% to 100%) and a mean of 92.1% effective at maintaining remission (range=53% to 100%). Subjects reported a mean of 40% difficulty rating in following the diet (range=0% to 100%).

      Discussion and lessons learned

      This is the first clinical description of a large series of patients with IBD following the SCD. Our survey results suggest that SCD can potentially be an effective tool in the management of some patients with IBD and specifically in patients with colonic and ileocolonic CD who made up the majority of our study group. A highly educated group of patients follow the SCD; all but one of the adults in our study had a college or graduate degree. Our results also suggest that in some patients with moderate to severe disease who follow this diet, discontinuation of immunosuppressive agents has been feasible.
      One of the strengths of our study is the verification of the diagnosis of IBD in all of the patients with medical record reviews by an experienced gastroenterologist who specializes in IBD. Our limitations include the choice of our subjects, all of whom were in remission, biasing our findings toward including patients with IBD who have benefited from SCD and were following it for months. Nevertheless, we now show that at least a subgroup of patients with IBD may notably improve as a result of following the SCD and/or dietary interventions in general. Our findings enhance those of prior limited case reports of dietary therapy with SCD and other dietary interventions.
      • Suskind D.L.
      • Wahbeh G.
      • Gregory N.
      • et al.
      Nutritional therapy in pediatric Crohn disease: The specific carbohydrate diet.
      • Fridge J.
      • Kerner J.
      • Cox K.
      The Specific Carbohydrate Diet—A treatment for Crohn’s disease?.
      • Nieves R.
      • Jackson R.T.
      Specific carbohydrate diet in treatment of inflammatory bowel disease.
      • Olendzki B.C.
      • Silverstein T.D.
      • Persuitte G.M.
      • et al.
      An anti-inflammatory diet as treatment for inflammatory bowel disease: A case series report.
      • Gonzalez-Huix F.
      • de Leon R.
      • Fernandez-Banares F.
      • et al.
      Polymeric enteral diets as primary treatment of active Crohn's disease: A prospective steroid controlled trial.
      Other, more long-term diet interventions that are not SCD have shown promise in a very limited number of subjects.
      • Jones V.A.
      Comparison of total parenteral nutrition and elemental diet in induction of remission of Crohn's disease.
      • Chiba M.
      • Abe T.
      • Tsuda H.
      • et al.
      Lifestyle-related disease in Crohn's disease: Relapse prevention by a semi-vegetarian diet.
      Further evidence suggesting diet can be an effective treatment for some patients with IBD stems from the fact that diet has the potential to change the intestinal luminal environment, specifically the intestinal microbiome. Our prior preliminary findings
      • Kakodkar S.
      • Mikolaitis S.L.
      • Engen P.
      • et al.
      The effect of the Specific Carbohydrate Diet (SCD) on gut bacterial fingerprints in inflammatory bowel disease.
      • Kakodkar S.
      • Mikolaitis S.
      • Engen P.
      • et al.
      The bacterial microbiome of inflammatory bowel disease patients on the Specific Carbohydrate Diet (SCD).
      hint at a change in the microbiome of patients with IBD who follow the SCD. If following the SCD changes the microbiome significantly and/or reverses some of the dysbiosis reported in patients with IBD, this may be a low-cost intervention to induce and maintain remission with little or no known adverse reactions. As such, further interventional studies of SCD and diet therapies in general for IBD are urgently needed.

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