Crohn’s Disease Exclusion Diet: Tips and Troubleshooting

In our overview post, ICN registered dieticians went over the Crohn’s Disease Exclusion Diet (CDED), including when and how it may be used as part of IBD care, how the diet is structured, and what CDED users can expect to eat and drink when following the diet. In this post, we’re sharing some common hurdles that patients and families may face, including tips for navigating when kids don’t like CDED food or shakes, successfully shifting to a CDED lifestyle, coping with “giving up” favorite foods, what happens if things don’t work out, and how to assess whether the CDED or another dietary therapy is right for you/your child.

🥛 What if the CDED nutrition shakes are unpalatable?

The foods allowed on the CDED alone, especially in Phase 1, will not adequately provide a growing child with many of the essential vitamins and minerals they need. That is why the addition of a nutritionally complete shake is a critical part of this dietary therapy. It is not uncommon to dislike these shakes, especially at first! Here are some tips that can help make drinking CDED nutrition shakes easier:

• Use a straw – Drinking through a straw, instead of right out of the carton, will reduce your ability to smell the shake, which can significantly reduce the flavor!
• Change the texture – Blending your shake with ice to make a milkshake or warming it up to make hot chocolate (if you have a chocolate flavor) can help change the taste experience.
• Plug your nose – Many patients find this silly, but it is also a very effective way to reduce the shake’s flavor and can be helpful when you just don’t want to taste it. Give it a try!
• Reframe your shake – Think of your shake not as food, but rather medicine, because it is. Reframing the CDED as medicine to help improve your IBD outcomes and manage your immediate symptoms, can help put the purpose in its rightful place. None of us like taking medicine, but we do it because it can help us; the same is true for these shakes.
• Find your motivation – Some people respond very well to a reward system. A simple yet effective idea is to make a chart where you check off each carton of shake consumed in a day. When all the boxes for the day are checked you get a reward (or you can work towards an end-of-week reward). Figure out what would best motivate you or your child if you are having trouble with shake acceptance.

If you have tried everything and are still having difficulty with shake acceptance, discuss this with your dietitian. Together we can consider alternative shakes or other ways to ensure your child is getting adequate nutrition. It is important to note that active inflammatory disease may increase nutrition needs beyond what a growing body already requires. So, working with your Registered Dietitian and IBD team to find the best treatment plan for your child or teen is important.

🍳 How do we transition into the CDED when it is so different from how our child currently eats?

Change is hard! Planning and preparation can help set you up for CDED success. For instance, if your child doesn’t eat many of the mandatory or allowed foods on the CDED then you may need to gradually implement the diet. Working on adding one new mandatory or allowed food at a time, to see if the child can grow to accept these foods, is what would be suggested. Meanwhile, work with your team to determine a more appropriate treatment plan for right now. Regardless, transitioning into the diet will require adjustments in many areas and re-establishing expectations with your child will be important. Here are some tips for a successful CDED transition:

• Food is medicine – Thinking of and talking about the foods and nutrition shakes you eat and drink on the CDED as medicine that you are putting in your body to help treat IBD can be helpful.
  • Note: The way we talk about foods matters. Try your best not to refer to foods as “good” or “bad.” Foods that are not allowed during the CDED are not necessarily “bad” foods, they just do not serve a purpose while we are trying to limit exposure to dietary components and get disease into remission.
• Form new habits – Involve your child in creating new eating and drinking habits as it can help reduce the shock of suddenly getting so much of their nutrition from liquid in Phase 1. Many families opt to include a smaller amount of food with a full nutrition shake at normal meal/snack times. This can help the diet to feel as normal as possible.
  • Note: It is not recommended to allow “grazing” on nutrition shakes. This can promote a lack of appetite at mealtimes and supplement burnout.
  • Note: Nutrition shakes are perishable so please follow the instructions for refrigeration after opening.
• Set new (food) expectations – Talk with your child about trying new foods and how their taste buds will probably need several tries to get to know and enjoy new foods.
  • Note: Giving children some choice around which new meals/foods they try can help with willingness to try new things.
• Make it family-style – It is recommended that whenever possible, sit-down family meals be made CDED compliant for everyone. This is because there are going to be many situations where your child is not going to be able to eat what everyone else around them is eating. Providing these opportunities for normalcy will improve your child’s experience, mental health, compliance, and connection to you. 

🍎 Are we going to have to give up all our favorite meals/snacks during the CDED?

Below we have shared several CDED swaps for some common meals and snacks:

*Homemade recipes for these items are available.

Ask your dietitian for recipes and meal/snack swaps that are compatible with the CDED phase you are currently in. In addition, a selection of CDED compatible recipes can be found using the Gut Friendly Recipes tool on the Crohn’s & Colitis Foundation website (you will be asked to log in or set up a free account to use this resource).

Image from: Crohn’s & Colitis Foundation

🍗 What if we try the CDED and it doesn’t work?

If the diet fails to improve your symptoms or disease, or if you are not able to stick to the diet, there should be no shame around this. The CDED is hard. Taking on this diet will result in a complete lifestyle change that may not be realistic or feasible for many families of children and teens. That is okay!

Your child’s (and your own) mental and physical wellbeing, outside of IBD, is very important! Having a poor experience with a dietary therapy can have lasting negative effects. Each family, with the support of their IBD team, including a dietitian and psychologist, should carefully consider options and discuss ways to keep life as normal as possible if choosing to use a dietary therapy like the Crohn’s Disease Exclusion Diet.

🍌 Comparing the CDED to other IBD dietary therapies – which one is right for us?

As a patient or a caregiver of someone living with IBD, we know it can be frustrating to look at the various dietary therapies and see how they differ in their allowed and disallowed foods. You might wonder how all of the diets can be effective. Ultimately, they all exclude some potentially inflammatory dietary components.

The first study reporting results of the CDED was published in 2014, and it is still a therapy that is being studied today. As more research on the CDED and other dietary therapies become available, it is possible diets will change. At this time, the CDED dietary therapy is being used internationally as both mono and complementary therapy to help manage some forms of Crohn’s disease. If you are interested in the CDED, or any other dietary therapy for treating and managing IBD, we recommend making an appointment with your IBD team (including a dietitian if you have one available to you) so you can ask questions, assess options and get more information.

Please note:

The information in this post is of a general nature. This advice will not apply to every single patient with IBD. The nutritional needs of people living with IBD vary greatly. Nutrition needs may change over time. It is the hope of the ICN Registered Dietitian group that all patients with IBD will have access to nutritional support as part of comprehensive IBD care. If you are seeking support from a registered dietitian, ask your care team what resources are available at your center. If necessary, you may receive a referral. If you are looking to find an RD to work with on your own, the Academy of Nutrition & Dietetics has a “Find a Nutrition Expert” option on their website (eatright.org/find-a-nutrition-expert).

Get #InTheLOOP with more posts by Registered Dietitians on the ICN blog >>

⏰ Take Action! No effort is too small, because everything we do in ImproveCareNow is magnified by the efforts of thousands of other improvers! Here are some ways to find & give help:

💚 Young patients (14+) with IBD can join the Patient Advisory Council 

💙 Caregivers of young people with IBD can join the Parent/Family Advisory Council

💚 Eligible individuals can participate in Current Research Opportunities

💙 Anyone can support ImproveCareNow with a tax-deductible general donation or donation to the Richard B. Colletti Family Fund

💚 Anyone can sign up for blog updates and stay #InTheLOOP with our IBD stories

💙 Anyone can download, use & share our free, co-produced IBD resources

💚 Anyone can connect with our welcoming & supportive community and receive IBD resources, community stories, and ICN updates & opportunities by joining our CIRCLE