Disordered Eating in Crohn’s Disease and Ulcerative Colitis
While I work hard to provide you with accurate and up-to-date information at the time of publishing, as time passes some information may no longer be relevant or accurate. The field of medicine is a constantly evolving science and art. Thankfully! In 1951 a woman was given a lobotomy to treat her ulcerative colitis. That wasn't even that long ago!
Have you ever cut out entire food groups or severely restricted the amount of food you eat because of your Crohn’s disease or ulcerative colitis? Have your IBD symptoms caused you so much pain and discomfort that you fear eating or have avoided meals all together? Do you obsess over “safe” foods or try to control your symptoms when you are out with other people by eating at specific times or avoiding food until late in the evening when you’re home for the night? If you relate to any of these thoughts or behaviors about food then you may want to read on.
Is Disordered Eating Present Within the IBD Community?
Disordered eating is a term used to described a wide range of abnormal eating behaviors and thoughts about food that do not fall under the rigid criteria that must be met to diagnose eating disorders like anerexia nervosa or bulimia nervosa. Most people who have disordered eating do not meet the criteria of anerexia or bulima but that does not mean there is not a problem.
Some people living with IBD who suffer from disordered eating may meet the criteria for a diagnosis of OSFED (formerly known as EDNOS) but not everyone will. No matter the case, EVERY person living with Inflammatory Bowel Disease who is struggling with disordered eating is deserving of help in order to improve quality of life.
What Causes Disordered Eating to Develop in Patients with Crohn’s or UC?
What the studies say
I don’t think I could have said it any better than when I wrote this post a few years ago. I highly recommend reading it because I think many patients will relate to how pain, symptoms, side-effects of some medications, and other things about life with IBD could contribute to disordered eating.
When I was first diagnosed with IBD as a child I was told to eat a low residue diet. My doctor named off a few food items that would be “safe” for me to eat, one of them being white rice. I heard that and took it to an obsessive level and all I ate was white rice. I was desperate to make my pain and suffering go away and I clung to the idea that this food was the only thing that I could possibly eat without suffering. My focus on controlling symptoms and pain with dietary restriction began back then and I imagine if I had better education about diet, nutrition, and Crohn’s disease that it probably would not have happened.
An article published in Advances in Nutrition in 2013 about youths and young adults who have diet-related chronic health conditions focused on their risk of disordered eating. They noted some causes and risk factors in patients with Crohn’s disease and ulcerative colitis listed below:
The article also mentions how coping with a chronic illness can even lead to disordered eating, especially in adolescents since it is a time of rapid growth and development accompanied by socialization and individuation. Other notable things mentioned are malabsorption and nutrient deficiency leading to delayed growth, the increase in caloric needs during a flare-up and post surgery recovery, and low tolerance to foods because of pain. In addition inflammation and severity of disease may call for dietary management through tube feeding, liquid diets, and TPN; therefore management of IBD may involve a prescribed dietary regimen.
On top of dietary management treatment of IBD typically involves a pharmacological agent; steroids being one that can cause body-image issues. The article goes on to mention the unpredictable nature of Inflammatory Bowel Disease from symptoms to complications which can lead to psychological and social stress for patients. All of these things can increase the risk of developing disordered eating in people who have been diagnosed with Crohn’s disease or ulcerative colitis.
Another study which was published in Appetite Vol. 84 aimed to answer these 3 questions:
- Are disordered eating practices a feature of GI disorders?
- What abnormal eating practices are present in those with GI disorders?
- What factors are associated with the presence of disordered eating in those with GI disorders?
Though the study had limitations they concluded that disordered eating occurs more often in people who have GI disorders compared to healthy controls but the direction of the relationship between disordered eating and the GI disorder was unclear and that there are implications for further research to be done.
At Rush Medical College a review of 4 pediatric patients aged 14-15 who had both Crohn’s Disease and anorexia and/or bulimia found that one of the patients who was followed had stopped taking her medications to treat her Crohn’s disease so that she could keep her weight below a healthy level. Following these 4 patients who had eating disorders also showed that it is important for physicians to be aware of the possibility of an eating disorder in adolescents who are not responding to treatment in those who have signs and symptoms of an eating disorder.
So is it the chicken or the egg? Eating disorders can certainly develop as the result of having IBD but both may exist in the same patient without being caused by the other. For instance a person who has anorexia or bulimia may be diagnosed with IBD later on. I think it goes without saying that their IBD was not caused by the eating disorder. Alternately a patient who has already been diagnosed with IBD may be diagnosed with an eating disorder later on that was not caused by their Crohn’s disease or ulcerative colitis.
Do Patients Have the Wrong Idea about Food and IBD?
When looking for information about diet and IBD most patients turn to the internet yet the vast maority of information that exists there on the topic is misinformation written by unqualified authors.
A quick google search about diet and IBD led me to these headlines:
10 Foods to Avoid if You Have Crohn’s Disease
Crohn’s Disease Diets: What to Eat and Not Eat
Ulcerative Colitis Diet Plan: Best and Worst Foods
Ryan Schultz Cures Himself of Crohn’s
A Paleo Diet Helped James Heal His Crohn’s and Other Issues
Best Diet to Heal Crohn’s Disease and Top Foods You Must Avoid
One site I came across written by a “doctor” recommended long-term fasting, herbal remedies, massage, and a very restrictive diet. None of these recommendations have any scientific evidence to support healing intestinal inflammation and some of these diets can be very dangerous (long-term fasting in a patient with higher calorie needs, certain herbal supplements, unnecessary food restriction, etc). Unfortunately other patients are often responsible for a lot of the misinformation about diet and IBD on the internet.
Many patients admit they are more likely to trust other patients
instead of their doctors when it comes to dietary recommendations. When they read articles written by poorly informed patients making claims about inducing or maintaining remission or treating or curing their IBD things can get dangerous. If patients make decisions about their health based off of this misinformation they may restrict their diet unnecessarily, stop taking their medications leading to worsening of disease, or develop an unhealthy relationship with food.
It is no wonder that so many patients have the wrong idea about food and IBD with all the inaccurate information about it on the internet. Not only that but a lot of these articles may instill unnecessary fear in patients. Titles like Top Foods you Must Avoid, or Best and Worst Foods can mislead a patient into thinking that they have very little options when it comes to eating.
What Should Patents Do?
Severe food restriction is the number one cause of weight loss in patients who have inflammatory bowel disease (4) yet your body requires more calories when disease is active. You need certain nutrients that play a role in quieting the immune system and healing ulcerated tissue so following the advice of many of the articles published online can create bigger problems for you.
Proper education on the relationship between food and inflammatory bowel disease is important to help patients understand what to eat and to help prevent disordered eating. Naturally patients want to avoid foods that cause them symptoms when there is active intestinal inflammation present or another problem (like a stricture) however many patients fear reintroducing those foods back into their diet once the issue resolves.
Some foods may always cause a patient symptoms regardless of disease activity so it is important to make sure you are getting the right nutrients and enough calories if you have to avoid certain foods that cause discomfort.
Here is what the CCFA has to say about diets for IBD:
There is no evidence to suggest that any particular food or diet causes, prevents or cures IBD. There is no one special IBD diet. A few diets are advertised specifically for managing IBD, including the Specific Carbohydrate Diet™ and The Maker’s Diet. It is important to note that people may report success with these and other diets in alleviating symptoms, but there has been no scientific evidence supporting these diets. Additionally, the diets may be very restrictive and difficult to follow.
This is what we know currently but research is ongoing. Things to remember:
- Patients require more calories when inflammation is present.
- Getting the right nutrients helps your body heal ulcerated tissue so it is important not to severely restrict food.
- There have been no positive studies that any particular diet can treat IBD beyond helping to alleviate symptoms in some patients.
- Consider the source – do not follow the advice you find on the internet written by unqualified authors.
- What works for one patient regarding symptoms may not work for you.
- No that patient did not cure their disease.
- No that patient did not heal themselves of Crohn’s or UC.
It isn’t always easy to figure out how to eat or what to eat when you have inflammatory bowel disease. Certain foods may aggravate symptoms, eating may cause pain, you might lose your appetite during a disease flare, and you may find that what bothers you one month may have no effect on you the next. Working with a registered dietitian is a good option for patients who need help meeting their daily calorie and nutrient requirements. They can also help you determine which foods are causing you symptoms and make recommendations on what to eat that might help alleviate them. Beware of people who call themselves nutritionists. Anyone can call themselves a nutritionist but to become an RD requires extensive education.
Develop a good relationship with your GI and communicate any thoughts or questions you have on the role of food and IBD. Ask them for information or resources and make sure they monitor you for nutritional deficiencies and correct any that you have.
If you think you have developed disordered eating or an unhealthy relationship with food bring it up to your primary care doctor and your gastroenterologist. They can help you overcome this or refer you to other specialists who can.
This post was edited on 1/10/2020 for appearance, grammar, and clarity, as I transfer my site from Tumblr to WordPress and rebrand Inflamed & Untamed
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1. Quick, V. M., C. Byrd-Bredbenner, and D. Neumark-Sztainer. “Chronic Illness and Disordered Eating: A Discussion of the Literature.” Advances in Nutrition: An International Review Journal 4.3 (2013): 277-86. Web. 1 Feb. 2016.
2. Satherley, R., R. Howard, and S. Higgs. “Disordered Eating Practices in Gastrointestinal Disorders.” Appetite 84 (2015): 240-50. Web.
3. Strokosch, Gary, and Cathy L. Joyce. “Inflammatory Bowel Disease and Eating Disorders.” Journal of Pediatric and Adolescent Gynecology 9.3 (1996): 154. Web.
4. Mikolaitis, Susan, RD, LDN, and Ece Mutlu, MD. “FAQs on Inflammatory Bowel Disease, Diet and Dietary Supplements | Rush University Medical Center.” Rush University Medical Center. Web. 20 Feb. 2016.