IBD Nutrition Navigator^™

In the Precontemplation stage, individuals with ulcerative colitis or Crohn's disease may not yet recognize the impact of diet on their condition. The focus here is on education and awareness – helping patients understand how certain foods can influence their disease activity. Healthcare providers can offer information about the potential benefits of dietary changes, such as reduced flare-ups and improved overall gut health, encouraging patients to consider the link between their diet and their disease.

Moving into the Contemplation stage, patients start to acknowledge that their current dietary habits might be affecting their disease. They weigh the pros and cons of changing their diet, such as the effort involved in altering eating habits against the potential for symptom relief and better disease control. At this point, it's crucial to offer support and detailed information about how specific dietary changes can lead to improvement in their condition. Success stories or testimonials from other patients who have successfully managed their symptoms through diet can be particularly motivating.

In the Preparation stage, patients decide to take action. This stage involves planning and setting achievable dietary goals, with the help of a dietitian specializing in IBD. It's also a time for patients to learn about meal planning and preparation that aligns with their dietary needs, and to seek support systems, whether through healthcare providers, support groups, or family and friends.

The Stages of Change model also includes Action and Maintenance stages, which don’t map to the “interest” section. In these stages , patients actively engage in their new dietary regimen and work to sustain these changes over the long term. This could involve regular monitoring of symptoms to assess the impact of dietary changes, adapting and refining their diet as needed, and finding strategies to manage social and emotional challenges related to dietary restrictions. Continued support from healthcare providers, along with education about how to handle potential relapses or periods of increased disease activity, remains vital. Successfully navigating these stages can lead to a significant improvement in quality of life and disease management for patients with Ulcerative Colitis or Crohn's Disease.

Often, a strong support network can make a critical difference. As mentioned earlier, a patient may not know their way around the kitchen but may have friends or family who can help them get started. One patient who decided to start dietary changes shortly after an exhausting hospital stay had an uncle and aunt living close by who helped, including making soups as soon as she returned home. Over a period of weeks, she recovered enough strength to begin making meals with them, eventually taking over the process after having returned to work. 

In contrast, a well-off, motivated couple wanted to use a therapeutic diet for their 10-year-old son who has Crohn’s. The couple could afford the food, or to even hire someone to cook, and they can also understand the underlying science. Unfortunately, they both had long commutes and work days. Also, having moved for their jobs, their local support network was weak in regards to family and close friends. As a result, they wouldn't be able to assist with the socio-emotional challenges their son would face in school. Although they were able to make healthier dietary adjustments for their son, using a therapeutic diet wasn’t feasible at that time.

A person’s daily schedule is an important consideration. Many health dietary options are available but several take more time in terms of preparing food. Having a schedule that allows this time is an important consideration. With planning, many working people (often with the help of their support networks) have figured out routines that allow them to always have food available. This may include spending time over the weekend to bulk prepare food. More recently, as healthy food options become more available, working people have been able to find more meals at restaurants and supermarkets.

Cooking skills are helpful, but motivation is key. Many people with little to no cooking experience have learned to prepare meals after being diagnosed with IBD and have shared their recipes online or in cookbooks. Learning to cook simple dishes and navigate the kitchen is empowering and grounding, as it involves physical activity. That said, patients shouldn't feel they have to rush into anything, especially if their energy level is low. The opportunity to prepare food is always there. It helps to remind patients that want "do everything they can" and "do it right now," that a combination of patience and slow, steady changes may be best.

Many of the dietary options for IBD involve do require at least some kitchen access. In addition, healthier food does cost more. Fresh fruits and vegetables – which may be cooked, softened, or even blended for patients with active symptoms – may be harder to find and prepare than fast food. However, compared to only a few years ago, even healthier foods as well as many organic choices are more accessible and available at large, not-so-expensive stores. (In the U.S., Costco, Target and Walmart come to mind). With dietician guidance and budgeting guidance on food selection, it is possible to eat healthier foods for many people. 

Up to 14% (1 out of 7) people with IBD in the U.S. are estimated to be food insecure. This often overlaps with overall financial distress and not being able to afford healthcare, including medication. It is important to recognize the context in which people live. If someone is experiencing financial insecurity, their overall stress levels will be much higher and it’s important to have a social worker or other healthcare team member help them coordinate resources for overall IBD care.

(Note: to encourage eating healthier foods, the U.S. government provides incentive programs and online resources for people using the Supplemental Nutrition Assistance Program, or SNAP.)

Determine whether primary or adjunctive therapy is most appropriate given the selected dietary option and patient interest, resources, and disease state. All dietary options may be used adjunctively. Exclusive enteral nutrition or a therapeutic diet may be considered as primary therapy for select patients, depending on disease severity and risk factors for progression.^1,2

Suggestions for assessing and monitoring the primary use of a therapeutic diet are described in Process for Assessing Efficacy of a Therapeutic Diet as Primary Therapy.

Advantages of Primary Therapy:

• Minimal side effects
• Minimal risks when implemented to be nutritionally complete, with objective monitoring of disease to avoid the risk of progression
• Pharmaceutical options can be reserved until necessary, potentially limiting progressive loss of response
  

Disadvantages of Primary Therapy:

• Response time may be slower or incomplete without pharmaceutical therapy, risking disease progression
• Very symptomatic patients may not tolerate many foods initially, making it difficult to include a healthy diversity of foods without pharmaceutical therapy to help manage symptoms
• Dietary therapy requires careful and strict adherence when used as primary therapy
  
  

Advantages of Adjunctive Therapy:

• Combination therapy affords the opportunity to target inflammation through two different pathways.  Dietary therapy manipulates the microbiome and its byproducts to alter the resulting interactions of the gut microbiome and immune system, while pharmaceutical therapies alter the binding or release of immune-mediated inflammatory cytokines. Using them in combination provides a dual approach which may result in a greater response.^3,4 
• Combination therapy may resolve symptoms and inflammation more quickly.
• Combination therapy may afford a more rapid inclusion of a wider diversity of foods and expansion of diet.
• Dietary therapy may delay loss of response to biologics.^5,6 
• Dietary therapies which incorporate more fruits and vegetables, while decreasing sugar and eliminating processed foods and additives may further improve overall health in addition to improving the symptoms of IBD.
  

Disadvantages of Adjunctive Therapy:

• Significant dietary changes may not be worth the effort to some patients if remission may be achieved with medications alone.‍

Ideal Candidate for Primary Therapy

The ideal candidate for primary therapy is a highly motivated patient with mild-to-moderate disease with resources and support. The ideal candidate is seeking to manage both inflammation and symptoms and should be at low risk for noncompliance. Patients falling slightly short of this ideal may still be capable of using nutritional therapy as primary therapy but are at higher risk for disease progression. When using EEN or a therapeutic diet as primary therapy, close monitoring is very important to mitigate the potential for progression.

Noncompliance Risk

Patients using EEN or a therapeutic diet as primary therapy should be informed that diet is their medication, and they must commit to following it with the same compliance as they would when using pharmaceutical therapy.

Risk of noncompliance increases as interest wanes and/or resources decrease. Patients with a lower interest level are at a higher risk of noncompliance. Lack of resources/means can also contribute to noncompliance. Patients with a higher risk of noncompliance should consider adjunctive therapy or closer monitoring.

Existing Patients on Pharmaceutical Therapy

Nutritional therapy should be considered adjunctively for all patients on pharmaceutical therapy who have not reached their goals of clinical and endoscopic remission. Adding a therapeutic diet or other forms of nutritional therapy may help to achieve higher levels of remission,⁷ prevent loss of response to biologic therapy,⁵ reduce the amount of pharmaceutical therapy required to maintain remission,⁸ or provide salvage therapy for patients failing biologics.^6,9,10 Some reserve nutrition as a last resort for non-responsive patients. Although it remains an option in this setting, patients will likely be better served with an early introduction.

Process for Assessing Efficacy of a Therapeutic Diet as Primary Therapy

Agree on a time frame to evaluate the effects of dietary therapy. Twelve weeks may be a reasonable period to assess the potential impact of a therapeutic diet. As dietary therapy may be a slower process, evaluation of less than 12 weeks may not be sufficient for a full assessment, although markers and symptoms are expected to trend down in the first 3-6 weeks.¹¹

Manage expectations with cautious optimism. Inform the patient beforehand that while some patients do well on diet alone, many patients will still need to add pharmaceutical options if diet alone does not adequately manage inflammation. Needing pharmaceutical help is not a failure caused by any patient action, but rather the nature of an often progressive disease. The goal is remission.

Monitor inflammation and symptoms throughout the evaluation period. A potential starting timeline may look like the following:

• Baseline: Evaluate symptoms and standard of care labs. Make sure to include markers of inflammation specifically (CRP, fecal calprotectin, CBC and iron studies and, if available, intestinal ultrasound or other diagnostics) within the first few weeks.
• 3 - 6 weeks Trend: Evaluate again at 3-6 weeks to note the trend of pertinent lab findings
• Assessment at 12 weeks: Evaluate overall impact of dietary changes

Address concerning changes as medically needed and allow patients to change course when desired. 

Consider monitoring high-risk patients (patients with more complex disease or those at higher risk for non-compliance) more frequently than low-risk patients (patients with milder disease and who are more likely to be compliant).

At the end of the evaluation period, assess the impact of diet in a similar manner to other therapeutic options, examining both objective and subjective parameters including the following: symptoms, inflammatory markers, emotional stability and disease scores. In both pediatric and adult patients, it’s important to assess feelings about dietary therapy at each check in point. After a transition period of a few months and if one feels better and observes subjective and objective improvement, they frequently report improved quality of life.

• If inflammation is trending in the right direction with no concerning issues, consider the continuation of nutritional therapy as primary therapy.
• If progress is insufficient or concerning issues are present, consider pharmaceutical therapy (in combination with or as a replacement for nutritional therapy)
• Pediatrics: If the restrictions of a therapeutic diet are creating a burden on the child emotionally/psychologically, consider switching to a healthy diet in combination with pharmaceutical therapy. Therapeutic diets can always be an option later if/when the child is ready for it.
• If progress is good but still short of expectations, consider consulting an IBD-trained dietitian for dietary adjustments to improve results.

Disease State

Type (CD vs UC)

Exclusive enteral nutrition is well researched in induction of remission in pediatric CD with over 80% achieving clinical remission, leading to its recommendation for primary therapy in this setting. Exclusive enteral nutrition has not been well researched in UC, and thus is not routinely recommended.  More research is needed to evaluate the potential of EEN in UC. The adjunctive use of EEN for 7 days in acute severe hospitalized adult UC patients significantly reduced length of stay, increased albumin, decreased CRP and fecal calprotectin, and lowered colectomy/hospitalization rates at 6 months,¹² illustrating the potential value of EEN in the management of UC. The European Society for Clinical Nutrition and Metabolism (ESPEN) recommends EEN only adjunctively in severe UC.¹³ 

Location

Initially, EEN was shown to be more effective in ileal Crohn’s disease than colonic. However, more recent analyses, including patients with isolated colonic disease, have found similar rates of remission, putting forth the concept that EEN may be effective regardless of disease location.¹⁴

Severity

Mild to Moderate Disease

With good compliance and monitoring, EEN may be considered as primary therapy to induce remission for select pediatric and adult patients with mild to moderate disease at lower risk of disease progression. See Age-related Considerations below and the Primary vs Adjunctive section for more detail.

• Exclusive Enteral Nutrition is recommended as a primary treatment for induction of remission in mild to moderate pediatric CD.¹⁵
• An Australian and New Zealand IBD working group includes recommendations for the use of EEN in adults with CD to induce remission.¹⁶
  

Moderate to Severe Disease

Pharmaceutical therapy is most frequently utilized first-line in moderate to severe disease. However, EEN may be considered as primary therapy for induction of remission and resolution of symptoms for select highly motivated patients at a lower risk of progression with close follow-up and monitoring.¹⁷ EEN may be used adjunctively for a potentially faster rate of remission or deeper level of remission and tissue healing.

Complicated CD  (Fistulas, Abscesses, or Strictures)

Adjunctive Nutritional Therapy, particularly EEN, may be especially beneficial in this population to promote tissue healing and fistulae closure and to reduce the need for surgery.^16,18,19

Pre-Surgery

Exclusive Enteral Nutrition and PEN improve the outcomes of surgery and should be considered as adjunctive therapy in all pre-surgical patients.^10,20,21

Age

Exclusive Enteral Nutrition is recommended internationally as first line therapy for induction of remission in pediatric CD given the high rate of efficacy (over 80%), low side-effect profile, and additional benefits of resolving nutritional deficiencies, improving growth and weight gain, improving bone health, and mucosal healing.²² Therefore, pediatric patients who are malnourished or exhibit delayed growth or picky eating habits may especially benefit from induction of remission with EEN.

Although EEN is less extensively researched in the adult population, EEN has demonstrated efficacy in inducing remission in several trials of adult patients with CD.²³ Efficacy has been further demonstrated in adult patients with CD patients refractory to anti-TNF therapy,^9,10 and in adults with complicated disease, resulting in significant differences in fistula closure, abscess resolution, and reduction in the need for surgery.^16,18,19 Exclusive Enteral Nutrition may be considered less often in the adult population due to concerns with compliance or palatability.²⁴ However, a publication by an Australian and New Zealand IBD working group provides recommendations for the use of EEN in active adult CD for the following clinical indications: induction of remission, as a bridge to medical therapy, preoperatively, and in the management of abdominal abscess or fistula.¹⁶

Disease State

Type: CD vs UC

Therapeutic diets have been primarily researched in Crohn’s disease (CD). However, SCD, modified SCD, IBD-AID, and AIP have all included ulcerative colitis (UC) patients reporting similar success to CD, although overall sample sizes are very small. Trials of a modified therapeutic diet, SCD vs MED, and MED vs standard diet in UC patients are ongoing. 

Mild to Moderate Disease

With good compliance and monitoring, some may consider a therapeutic diet as primary treatment for select pediatric and adult patients with mild to moderate disease at lower risk of disease progression (see Primary vs Adjunctive Therapy).

• A therapeutic diet may be considered as primary therapy to induce remission for select patients unwilling to use EEN as induction therapy.^25-27
• A therapeutic diet may be considered as primary therapy for maintaining remission in those who have induced remission with either EEN or a therapeutic diet (see Process for Assessing Efficacy of a Therapeutic Diet as Primary Therapy).

Moderate to Severe Disease

Pharmaceutical therapy is typically utilized first-line in moderate to severe disease. However, therapeutic diets may be considered as a primary long-term therapy option in select patients who have induced remission with either EEN or a therapeutic diet. Although pharmaceutical therapy is most often used in this setting, it is worthwhile to consider the added benefits of the adjunctive use of EEN or a therapeutic diet at the onset rather than preliminarily exclude it given the primary use of medications (see Primary vs Adjunctive Therapy).

Age

Pediatric Considerations

It is important for pediatric patients to be willing participants in a nutritional treatment plan and nutritional therapy should not be undertaken solely based on the desire of parents. Teen patients who are not committed will likely have poor compliance. If the child/teen is not willing to commit fully for at least the evaluation period, a therapeutic diet may not be the best option. However, lifestyle changes may be better accepted, and family support may be higher in pediatric patients, as parents are often willing to make more sacrifices for their children than they would make for themselves.

Adult Considerations

The majority of nutritional trials are in pediatric populations; however, emerging data suggests similar potential in adults. Although sample sizes are small in all of the therapeutic diet trials, there are reports that include adults for the SCD and CDED therapies, and the IBD-AID and AIP trials are specific to adults. A larger trial specific to adults is the DINE CD trial, comparing SCD with MED. 

The safety of nutrition with potential benefits, regardless of age, offers a basis for nutrition as a viable option in adults. One consideration in the adult population is that compliance may not be as high as in children where parents are supervising. However, adults can fully comprehend the goals and, therefore, may be more fully committed. Pediatric patients are often offered nutritional therapy shortly after diagnosis, with the opportunity to make a difference early in the disease course. Adult patients often only come to nutrition when they are out of other options, so their disease state at the time of initiating nutrition may be more advanced than pediatric patients. Dietary options may be particularly important for the increasing population of older IBD patients (>60 years of age) in whom greater caution with immunosuppressive therapies is exercised.²⁸ 

When undertaking any dietary intervention, it is important to work with an IBD-trained dietitian to ensure a balanced and nutritious dietary plan for nutritional adequacy. There is always a potential concern for nutritional deficiencies when significantly altering dietary patterns, particularly when certain groups of foods may be avoided or eliminated, and thus this is a well-recognized potential concern for therapeutic diets. 

However, as these dietary plans significantly increase vegetable and fruit consumption and encourage intake of nutrient-dense foods while decreasing or eliminating sugar and bread products, they are likely an improvement to overall nutrient intake compared to standard dietary intake. As noted by Pace et al, “now with less than 20% of individuals consuming a healthful diet, an emerging epidemic of vitamin and micronutrient deficiencies is again arising in the United States….[T]he majority of the United States population is under-consuming key nutrients such as vitamin D, calcium, potassium, and fiber from their diet, despite overconsumption of daily calories.”²⁹

As an example of a therapeutic diet, the SCD, has been found to be overall nutritionally adequate when undertaken in an appropriately balanced manner, although insufficient RDA intake of vitamin D,^30,31 calcium,³⁰ and folic acid³¹ has been noted. In an evaluation comparing sample menus from the therapeutic diets (SCD, AIP, IBD-AID, and CDED) the nutritional adequacy of the USDA General recommendations was examined.⁴³ Macronutrients were met with the notation of insufficient fiber intake. Most micronutrients were met, with the exception of vitamin D and calcium, while some were deficient in omega-3 fatty acids and zinc. As standard milk products, which are fortified with vitamin D, are limited or excluded in all therapeutic diets, it may be prudent to supplement vitamin D and calcium while following either a therapeutic diet or a lactose-free or dairy-free diet. Baseline nutrient deficiencies are common in IBD and should be assessed and repleted, as noted in the prior repletion of vitamin D and iron in the AIP trial.³²

Although more studies may be needed, when implemented properly, low FODMAP has been found to be nutritionally adequate, with no significant differences in dietary or nutrient intake between low FODMAP and habitual diet in the short or long term.^34,35

As many processed foods high in sugar and low in fiber are now available gluten-free and sometimes marketed as “healthy,” the nutritional adequacy of the gluten-free diet is questioned. It is important to monitor fiber intake as well as micronutrients that have been found to be deficient, including Vitamin D, Vitamin B12, folate, and minerals, such as iron, zinc, magnesium, and calcium.^35,36 It has been suggested for individuals following a GFD to also adhere more closely to a MED for greater health benefits and to improve nutritional adequacy.³⁷

Nutrition planning is a fluid process where patients may fluctuate between a maintenance nutritional option and another to address a more acute need, depending on their current state of health and personal life factors. For example, during symptomatic periods, patients may benefit from reverting from a maintenance dietary pattern to one of the following options below:

• EEN or PEN to reduce inflammation
• Safe foods
• Options to improve persistent GI symptoms

The following tools can be useful for identifying trigger foods for improving persistent GI symptoms and for identifying safe foods for use during symptomatic periods:

• Elimination Diet
• Food and Symptoms Diary