Today’s topic is one near and dear to me. As a dietitian, I would ideally love everyone to love “all the foods” and “all the foods” to love everyone back. Working in digestive health the past 25 + years, I realize life doesn’t always allow for that.
As a young dietitian, the thought of working in an area that involved ‘elimination diets’ was not on my radar. In fact, as a general rule, the more complicated and restrictive nutritional recommendations were in certain disease states such as advanced kidney disease and diabetes, the least interested I was in working in that area. Although, I could see benefit to these nutritional interventions, it broke my heart that so many foods were removed or modified from a diet. Again, my wish is that everyone could tolerate & enjoy food freely.
But, then, after my intestine was strangled by scar tissue (scar tissue from a previous ovarian cyst surgery) that resulted in about 6 feet of small intestine being removed, I experienced food intolerance for the very first time. Pain that stops you in your tracks after eating isn’t fun. I learned pretty quickly that a Mexican Burrito and/or 2 Egg McMuffins were not a good idea. Ever. HA! But, I also learned that I could take a bite or two of my husband’s burrito or make my own egg sandwich and still have a pain free day.
Given the degree of small intestine that I have left, I am at a greater risk for dehydration. Since my surgery, I have experienced gastroenteritis which has resulted in dehydration, followed by fainting, and they, maybe a trip in an ambulance to the local hospital for IV fluids. My poor husband, seriously, he has been my side kick through all of this. He is a keeper. I will add that I have not been in an ambulance now for many years! Small victories, friends, small victories.
Do I experience food fear? Yes. I am fearful of meat that is undercooked. I try to minimize my risk of foodborne illness because when I get sick, I get really sick. I can’t say I fear onions–but I definitely prefer they are not in my food. And I can tell you my intestines prefer that onions are not in my food either. As a general rule though, I have not found food fears to rule my life or affect my everyday life. I am careful when I travel out of the country—but I still travel. And, I am thankful for that.
I have, however, worked with a number of clients over the years where food fears have literally stopped them in their tracks. They arrived at my door, with a diet history of only 6-8 ‘safe’ foods and their quality of life and nutritional status was poor.
There has been an emerging interest in exploring food fears in individuals with GI disorders. In my opinion, as health professionals and as patients, we need to understand that some level of food fear is normal when eating causes pain or distress. However, when food fears begin to rule your everyday life decisions, amp your stress or add anxiety to your daily life, impact your ability to eat a nourishing adequate diet …it’s time for help.
Today I am extremely fortunate to share a Q + A with Tiffany Taft, PsyD, a licensed clinical health psychologist and the Director of Psychogastroenterology Research at Northwestern University Feinberg School of Medicine. Dr. Taft is a well-known psychologist working in psychogastroenterology and is also a GI patient herself, having inflammatory bowel disease and eosinophilic esophagitis. I really welcome her insights on this topic via her personal and professional lens. Here is our discussion on food fears in GI disorders.
Kate: In my opinion, when food is a perceived trigger to pain, it makes sense that some level of food fear would be somewhat normal–even protective possibly, helping an individual steer clear of foods that don’t seem to work for their body. What are some signs that food fears are becoming unhealthy or negatively impacting total health?
Dr. Taft: Food concerns are a perfectly normal reaction to feeling pain or other unpleasant symptoms after eating. We are hard wired to avoid foods that make us sick. It goes back to the primitive days of humans where if you ate some berries or rancid meat and you threw up, you’d know to avoid those berries or cook your meat better. To this point, seeing the berries might make you nauseous. This mechanism is meant to keep us alive. When we look at food as a trigger for non-life threatening, albeit unpleasant, symptoms through this type of threat lens we can get into trouble. I think most patients with digestive symptoms go through a phase of trying to figure out their food triggers. Most settle on maybe excluding a few foods or limiting them to special occasions. Overall they’re able to go about their lives with little disruption and they may notice they feel better. Others eliminate foods, even if that food triggering symptoms is inconsistent. Every patient I see who has eliminated a food – let’s say bread – I will ask “do you get sick every time you eat bread?” And the majority will say something like “well sometimes I’m ok.” So it becomes really confusing about what foods are truly in need of reduction or elimination. As food fears become unhealthy, thoughts about food become overwhelming, meal planning or grocery shopping becomes anxiety provoking, and the “safe foods” list grows shorter and shorter even when the evidence to support eliminating foods is weak or inconsistent, and the person is still experiencing symptoms.
When a process as natural as eating becomes overwhelming, or even scary, it’s time to evaluate how well the plan is working and make changes.
Kate: There has been emerging research and interest in the GI community for assessing for ARFID (Avoidant restrictive food intake disorder) and eating disorders in those with GI conditions such as IBS and chronic constipation. What are your thoughts on this topic?
Dr. Taft: This is a tricky area. We use the term “disordered eating” which is very different than “eating disorders” in terms of anorexia or bulimia nervosa, which are highly stigmatized conditions. Disordered eating develops in people with chronic digestive diseases not because they are worried about their body shape or appearance, but because they’re trying to prevent pain or other unpleasant symptoms that are highly distressing. This is adaptive to a point, but when we cross a line into highly restrictive and unhealthy diets resulting in significant weight loss or nutritional deficits, we consider that disordered eating is an issue. ARFID is a term introduced in the DSM-5 (psychiatric manual for mental illness) that mostly applies to children who are picky eaters. Recently ARFID has been expanded into the GI community to describe a patient who is restricting their diet so much, and is unable to reverse these restrictions even with evidence to show their behaviors are causing more harm than help, beyond what would be considered “reasonable.” What is considered “reasonable” leaves room for interpretation and variability, which is what is difficult about pathologizing human behavior. I think this is where disagreements can come up between a patient and their physician, or others in the patient’s life for that matter, about what is a reasonable response to chronic vomiting or excruciating abdominal pain. Patients are probably going to be labeled with ARFID who really don’t meet the criteria and I’m not sure that this helps improve patient experiences and outcomes. However, there are a percentage of patients with chronic digestive disease that absolutely have ARFID and need the proper help. I think this will take some time to get right.
Kate: As a GI psychologist and patient, what would be some general advice to offer a new patient with a complicated GI disorder?
Dr. Taft: I would recommend doing your own assessment of possible trigger foods and safe foods. Because usually we can identify a few problem foods, maybe if I eat too much of it I have a problem but if I keep it to a small serving I’m ok. Then there will be your go-to foods if you’re experiencing symptoms so you have that safety net to go to at the necessary times. As you’re doing this, remember that a food setting off symptoms one time does not mean it’s an actual trigger food. Don’t eliminate foods without doing a lot of test runs. And before you eliminate a food entirely, try cutting your serving in half first. Pay attention to what else you’re eating with that food. Sometimes it’s not the bread, but the bread plus the butter that caused symptoms. Also pay attention to your eating behavior. Am I eating quickly? Am I chewing thoroughly? Am I eating even after I feel full? These all can be triggers of gut symptoms, regardless of what food we’re eating. Also realize that identifying trigger foods may not yield 100% relief in your symptoms. There will likely be inconsistency in how food affects your gut. Instead of needing to know every possible food, accept some gray area and do the best you can without letting diet and food consume your thoughts.
If you find yourself spending hours researching foods, thinking about foods, planning your meals and you feel anxious, depressed, or frustrated then your diet strategy probably isn’t working very well and it might be time to make adjustments to how you’re approaching using diet to manage symptoms.
Kate: I would add, consider working with a GI dietitian to help you identify possible food triggers too–and to help guide you also on eating a well-balanced and nourishing diet. For a listing of GI dietitians, check out my listing here. If you feel you may need an assessment by a GI psychologist, check this listing here or discuss your concerns with your physician.