GI Disorders + Food Fears

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.

Featured image Photo by NordWood Themes on Unsplash

23 replies on “GI Disorders + Food Fears

  • Lisa Morris

    I wish there was a dietician in my area that knew about Fodmap. Ones I know and have checked out don’t really know anything or have only “heard “of it. I have been doing the diet for about a year and was told to try it by a gastroenterologist that really o lay had a paper about it that she handed me. I found You from doing research and you have helped me the most, so Thank you!!! Wish I could work with a dietician as I am deficient in a lot of vitamins. I too had emergency surgery due to scar tissue strangulation of my small intestine after ovarian cyst surgery. I have had problems ever since but it’s just been in the past four years that I am trying to figure it out as I had to have a resection surgery to my colon because of re accruing diverticulitis. I also have low energy and just can’t seem to get my body back to a healthy point even with all kinds of supplements.

    Reply
  • Lisa Morris

    I wish there was a dietician in my area that knew about Fodmap. Ones I know and have checked out don’t really know anything or have only “heard “of it. I have been doing the diet for about a year and was told to try it by a gastroenterologist that really o lay had a paper about it that she handed me. I found You from doing research and you have helped me the most, so Thank you!!! I have a hard time trying to add new things back because My digestive system feels better and I’m afraid to mess it up! I don’t have constipation but the D that I still can’t seem to figure out what sets it off sometimes. Wish I could work with a dietician as I am deficient in a lot of vitamins. I too had emergency surgery due to scar tissue strangulation of my small intestine after ovarian cyst surgery. I have had problems ever since but it’s just been in the past four years that I am trying to figure it out as I had to have a resection surgery to my colon because of re accruing diverticulitis. Because of this I stay away from nuts ( unless it’s a butter and creamed) , seeds and kernels. I also have low energy and just can’t seem to get my body back to a healthy point even with all kinds of supplements.

    Reply
  • Diana Studerus

    Great Article! Thanks a lot for sharing your thoughts and all the time and energy you both invested in writing! Really helpful for me and hopefully also my patients…
    Warm regards from switzerland

    Reply
  • Deb

    This is an excellent discussion. Thanks again for your attention to all the GI issues. I’ve been eating low FODMAP for 3 years, due to s severe case of IBS, and have found very little tolerance for adding back in most FODMAPS. I never completed more than one day of a challenge. That said, the symptoms vary in severity, so I keep trying small amounts of things I miss. What I’ve learned, and this will not apply to everyone, is that my digestive system in general moves so slowly, that if I eat a small amount of a FODMAP and it goes well, I need to wait several days to a week before trying another thing. Otherwise, for me it’s the same as FODMAP stacking. For example, within the past 10 days, I ate 3 slices of pink lady apple, a little larger than “allowed” portion of coconut milk, and 2 cups of popcorn, all several days apart, and my system rebelled in a big way. So pertaining to this article, I have faced a LOT of food fear, which I am still working to overcome. The biggest problem for me continues to be social engagements. Every time I attend a wedding, I’m sick for a week, even being “careful.” And I plan all dinners out several days apart, just in case. I’ve become more accepting, but I find this the most difficult part of IBS.

    Reply
    • Mary A. Taylor

      I too have found that although I can tolerate some things that are not low FODMAP, a few days in a row will put me over the top. This is frustrating but at least helps to have figured it out.

      Reply
  • Melanie

    Deb, I can identify with a lot of what you wrote. I have had IBS-C and reflux for over 15 years (and occasional gastritis the past couple of years), with very changeable symptoms. Some periods of lots of discomfort and IBS-D. Eating mostly low FODMAPs and GF and watching quantities usually help a lot but not always. I never finished the challenges for complex reasons. Diet is not the total solution; stress – including food fear – is a big issue.
    Kate, thanks for a great article!

    Reply
  • Ingrid Kannel

    I have IBS and GURD. I have lost a lot of weight, I’m too skinny. I do worry every time I open the refrigerator. I end up eating all day long in order to gain weight and I don’t have a dishwasher. I will try eating smaller meals, but that would mean I’d definately eat consistently.

    Reply
    • katescarlata

      When I was pregnant with my son and needed an emergency small intestinal resection–I had zero appetite. I too felt like I needed to eat constantly–it felt like another full time job! I hope you have a dietitian to help provide some easy snack options that don’t require the need to wash a ton of dishes and can help you eat to fuel your body.

      Reply
  • Lynn

    This really hits home for me. It’s almost a year ago that I was diagnosed with Gastroperisis. I’ve really had to change my diet and having a gluten allergy and lactose intolerance on top of it has made eating very difficult. I’ve been a member of a CSA share for years but now I’m having issues and they think I’m having a flare up of my intestines and have to go on a bland diet. Besides being limited to what I eat, I now also seem to be having bowel incontinence. I’ve been asked to limit my protein as well as having to stop eating tomatoes – and that news came after making a chili as well as spaghetti sauce. That just adds to my issues of not wanting to eat. But I’m thankful for the dietician I’ve been working with for quite a while. She helps to calm me down and find a solution that will work with my restrictions and getting me to feel comfortable about eating.

    Reply
    • katescarlata

      Thanks for sharing your struggles–it’s not always easy dealing with gut issues. Pelvic floor physical therapy is another potential therapy to discuss further with your doctor to see if that may add some help in your treatment plan.

      Reply
  • A.

    Hi Kate, I can really absolutely relate to this topic after going through a period of really restricting what I ate for quite some time, and this was before it being suggested that I follow restrictive diets like FODMAP and for SIBO. My diet became nutritionally unsound.
    I now eat a much more varied diet though i’m still ‘afraid’ of some food and drink and see a homeopath who is helping my body to act differently and not overreact to what I eat and drink. I am also being helped with hypnotherapy to help manage stress overload, which plays a big factor in many digestive disorders, and this too is helping, so I thought I’d share.

    Reply
    • katescarlata

      Thanks so much for sharing your lived experience. So important for others to hear–as people feel alone in their journey! I am so glad you tried gut directed hypnosis–it is quite effective for symptom management for so many!

      Reply
  • Anne Burnham

    Excellent balanced discussion – sympathetic to a wide variety of issues folks have. Thank you! Its really a bonus too that you both have had your own issues to widen your experience . Thank you for the care and aid you are giving people.

    Reply
  • Susan Hennessy

    Thank you so much, Kate, you have given me hope. I knew I was anxious about food, but not FEAR. Eating out is such a challenge, but I’ve learned to be careful. Having said that, I often slip and suffer. If I slip off the FODMAP several days in a row, I REALLY suffer. It’s so good to know I’m not alone, so thank you to those who reply.

    Reply
  • Eileen Curran

    Interesting article with some helpful pointers.I have wondered why some times the food does it cause a reaction and I am OK, and other times not at all, even resulting in a flare-up. I guess there are other mediating factors that we are not aware of……but we so want our lives back we focus on what we control: our food intake. Lately I have been eating mostly cereal……and sometimes I begin to hate food, and eating. Where is the pleasure in that?

    Reply
    • katescarlata

      Living with food fears and disdain for food is certainly not enjoyable and impacts your quality of life. Ask your doctor to refer you to dietitian and/or possibly GI psychologist to help you!

      Reply
  • Debbie Owens

    This article resonates with me on so many levels. I have had IBS-D since I was a teenager…so that’s about 45 years. Over the years, I have identified and removed many triggers – but still experience issues when I do not control the food that has been prepared. Like so many have reported, eating out or at someone’s house is a horrifying experience (if possible, I bring something I can eat.) I was diagnosed with diverticulosis 4 years ago, and had back to back episodes of diverticulitis. Followed by another 3 months later. I know the symptoms and am so careful about the “do not eat list” for that as well. This year, I ate a a local restaurant and became violently ill. I have had food poisoning before and have successfully treated it in the past myself; however, this time it got out of control, set off my diverticulitis and to make a very long and frightening story short – ended up in the hospital and almost died. 5 days in ICU. They were able to identify campylobacter. My kidneys quit functioning, my BP crashed and I was isolated until they could identify the culprit. I then missed 9 weeks of work while I recovered. I have never been so sick in my life. Since the event, my gut has not been the same. I can “feel” the foods processing – it feels like hot lava stones and the pain is nearly unbearable. What I was able to eat before the event is no longer true. I finally went and saw my Gastro and he’s treating me with a regimen of nortryptiline and Xifaxan. While the pain has gotten better, it is not gone. I am afraid to eat all but about 6 things that don’t seem to hurt me. I will never eat chicken again – the very smell of it makes me nauseous. I have been struggling with meal planning and shopping. I don’t enjoy eating any more. My doctor provided me with your website and I have learned so much already – thank you! I have an appointment with a nutritionist this afternoon and having read this I think it will help me to better discuss my situation more directly. Any other suggestions will be most appreciated. Bless You!

    Reply

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