"PHANTOM LIMB" FEEDING

In June’s blog post, “When Food Hurts,” I wrote about how we might consider feeding ourselves when food causes digestive distress - because of an untreated chronic gastrointestinal condition, for instance. But I thought it would be interesting to explore the flip side of that: What happens when the digestive condition is effectively treated or managed and food that was once “off limits” can now be eaten freely? Is it the relief we might expect? Or are there other feelings that might surface in response to such “food freedom”? 

When I work with clients who have been suffering for an extended period of time with undiagnosed, untreated digestive distress, the focus is so often on what cannot be eaten - what must be avoided to prevent exacerbating the symptoms and how the client can structure their life around these limitations. But when foods that historically caused pain no longer have the same effect, I have seen a sort of “phantom limb” effect: There is an expectation of distress and pain, but none exists. And as relieving as this may be on the one hand, it can feel disorienting and frankly, a little disturbing, to live in the absence of the expected reactions. It’s like a familiar structure is no longer present; something that governed nearly every aspect of meals is no longer there to provide a sense of stability and direction when it comes to feeding.

So now there is the opportunity for clients to create a new frame and set of guidelines around how they choose food, but it can feel overwhelming at first and stimulate new, unfamiliar feelings of being nourished, of feeling a different kind of fullness and satisfaction, and of being deserving of this kind of food. And these feelings, while perhaps “good” may also feel overwhelming, scary, and unwelcome. There might be complicated feelings about a food that once felt so bad suddenly feeling and tasting really good. And perhaps even fear about new potential repercussions, like weight gain.

And while it might make practical sense to start incorporating all the once-unsafe foods back into the diet once it is physically possible, it may not be emotionally possible or tolerable right away. The same can be said for “fear foods” with clients have who have suffered from eating disorders. Just because they come to nutrition therapy for help with the eating disorder doesn’t not necessarily mean they are emotionally prepared to introduce these fear foods; they may introduce them more slowly, on their own terms, even when they are physically capable of handling more. And this process might take longer than a regularly scheduled introduction of fear foods, but in my experience, it is also a more effective, long-lasting result.

The same can be true for re-introducing foods that once caused physical pain. This is not to say that we don’t also find ways to make sure the client is properly nourished with energy and nutrients in the interim; it might just be with a more limited spectrum of foods right off the bat. It might also take many introductions of the same food before there is trust that this food is safe. Just like a young child learning to eat solid foods: There are multiple studies suggesting that it can take up to 20 times of introducing a food before a child accepts it as part of their regular food repertoire. Some of the clients with whom I’ve worked have carried digestive distress with them since early childhood, so in some ways, eating without pain and introducing foods really might feel like the first time. And so we proceed accordingly.

A final note about foods that have caused pain in the past: Let’s take something like ice cream. There may be a lingering sense of waiting for the other shoe to drop. So ice cream hasn’t caused pain for the first 10 introductions, but what about the 11th? And the 12th? There can be a sense of foreboding around a food that one has had to avoid for so long. And keep in mind, there is no requirement that any particular food be re-introduced, despite its safety, as long as energy and nutrient needs are being met with other comparable foods. Yes, it can be something to work through and explore, but I have found that making any food a requirement tends to have the opposite effect and lacks true, meaningful integration.

LOOKING BEYOND FOOD: A PARADOX

It feels a little blasphemous writing this as a Registered Dietitian Nutritionist, whose days are centered around helping clients explore their relationships with food and ease their ability to eat, and eat well, with attention to both satisfaction and nutrient/energy needs. But as I continue to work with clients who suffer from co-occurring eating disorders/disordered eating and gastrointestinal symptoms and disease (both diagnosed and undiagnosed), it falls upon me to hold space to consider that, rather than specific foods causing the issues, it is often underlying structural, chemical, and neurological conditions (or all 3!) that give rise to symptoms, symptoms for which food plays a mere supporting cast member role.

Let’s take an example like SIBO, or Small Intestinal Bacterial Overgrowth, a condition where bacteria that typically live in the large intestine migrate to the small intestine and cause bloating, distention, gas, abdominal pain, and a host of other symptoms unique from client to client. When someone suffering from SIBO eats, their symptoms generally get significantly worse, leading some to believe that the food itself is causing the distress and then eliminating food categories and volume as a result. However, once SIBO is accurately diagnosed and treated (including the underlying cause), most people can return to eating food without pain or complication.

So while it’s vital to acknowledge the reality that eating and eating certain foods can increase physical pain in the body (see the post When Food Hurts), it’s equally important to distinguish between the food being the cause of that pain and the underlying conditions that are the real culprits. Otherwise, we risk demonizing a large swath of foods unnecessarily, creating a risky scenario for disordered eating, nutritional and energy deficiencies, psychological distress, and increased difficulty re-introducing foods once the underlying condition is treated and better controlled or healed. And equally important, if we do need to limit certain foods to minimize pain and distress while the underlying condition is being evaluated and treated, the gold standard is always going to be finding alternative sources of energy, rather than simply eliminating foods, to keep the body and brain as functional as possible and minimize complications down the road.

Similarly, one of the golden rules of feeding during clinical nutrition training in a hospital setting, as I had so many years ago, is this: If the gut works, use it! This held true for some of the sickest patients we saw. Parental nutrition, or feeding intravenously, was only used as a very last resort because once we stop passing food through the gut, it becomes increasingly challenging to re-introduce food without significant complications and distress almost as severe as the distress that led to stopping PO feeding (food by mouth) in the first place.

Consider how this applies in a restrictive eating disorder: The less food passes through the gut, the more the body adapts to an under-active digestive system, including slower motility, fewer digestive enzymes produced, interrupted insulin secretion, and a whole host of other adaptations - a sort of “use it or lose it” scenario. Re-introducing food to a sluggish or inert digestive system that is under-resourced and functionally challenged can be a tedious, distressing, and long road. So for all these reasons, whether we are addressing an eating disorder, a digestive condition, or a combination of the two, it becomes crucial to find alternatives and substitutions for foods contributing to discomfort, rather than simply eliminating them all together.

And more importantly, the faster we can evaluate and treat the root cause of the distress (SIBO, IBS, IBD, MCAS, or a whole host of other potential conditions), the more quickly we can work to manage those conditions while maximizing the food diversity and volume to continue meeting nutrient and energy needs.

This is not to say that there are not certain underlying conditions that absolutely warrant avoidance of particular foods or food groups indefinitely (Celiac Disease and IgE food allergies come to mind), but even these conditions have a root cause beyond the food itself: Abnormal immune responses, that will likely some day in the not-to-distant-future have treatments that allow foods to be consumed without injury or threat. Even in our current GI climate, there are new enzymes that can assist with consuming foods formerly off-limits to people, those who follow a low-FODMAP diet for instance (a topic for another post!)

So let’s consider not demonizing the foods themselves, but conceptualizing the GI distress our clients face as underlying conditions that deserve thorough evaluation and treatment, of which food avoidance or adjustment may play a minimal supporting role.

WHEN FOOD HURTS

I’d like to discuss a topic that nearly everyone has experienced at some point in their lives, but that many others live with chronically: Negative physical reactions to consuming food, even very nourishing food. So often we talk about hunger and we might assume that the natural anecdote to hunger is, ultimately, to eat. But what happens when eating regularly leads to symptoms like reflux, gastric and abdominal pain, bloating, distention, gas, constipation, diarrhea - the list goes on.  Despite these being very common occurrences for a large number of people, it can take months, years, sometimes decades to address the underlying causes - of which there can be many - and receive appropriate treatment and relief. Hunger can be painful, but so can nourishment. And determining the right way to balance hunger and nourishment has physiological repercussions but also psychological underpinnings, often from our earliest feeding experiences.

For conditions like Irritable Bowel Syndrome or IBS, for instance, a cluster of symptoms affecting up to 15% of the US population, it wasn’t until the last few decades that many clinicians began to recognize it as something clinically valid and not all in patients’ heads, given that the effects don’t show up on any diagnostic test or exploratory procedure. Diagnosis is instead a process of elimination and treatment is based on careful monitoring and evaluation of a patient’s individual triggers. For some, triggers might be alcohol or caffeine. For others, fried/fatty foods or even food volume can have a tremendous impact. And for many others, stressful situations can induce a flare of symptoms, seemingly out the blue. What’s even more challenging, however, is that the root cause of IBS is still being researched. We know that people with IBS have an inherent disconnect between the Central Nervous System, or the brain, and the Enteric Nervous System, or the nerves that weave throughout the gastrointestinal tract. We also know that, as a result, the gastrocolic reflex in people with IBS is dysfunctional, meaning that when food enters the stomach, the colon contracts in spastic ways that are not seen in typical digestion. 

The gut nerves of people with IBS are more sensitive to the presence of food, or liquid, or gas, and so normal digestion and colonic contractions often feel particularly painful. There is also ongoing research suggesting that the gut microbiome, or the population of bacteria that lives in the digestive tract, is notably different in people who suffer from IBS. Whether this is causal or an effect of IBS remains to be seen. But what I see over and over are eating disorder clients who also suffer from very real, very painful gastrointestinal conditions like IBS and slip through the cracks because many of these symptoms mirror those symptoms inherent in eating disorder behaviors and recovery. So it follows that re-introducing food in someone who has a condition like IBS might be more viscerally painful, and this requires tremendous sensitivity and attention. There may be foods that an IBS-sufferer genuinely cannot eat without experiencing exceptional flares, and this is not because it is a so-called “fear food” as a part of the client’s eating disorder. It’s incredibly important to listen to the client and believe the client when they report that eating certain foods causes intolerable pain, and to help discern which symptoms might be driven by an underlying condition and which might resolve with eating disorder recovery.

Another condition I see more and more frequently in my practice is Mast Cell Activation Syndrome, or MCAS, which research shows likely impacts 20-25% of the eating disorder population. This is an immune condition where immune cells called “mast cells” over-react to environmental triggers, including food, can manifest in nearly every organ system in the body, including the gastrointestinal tract. It can be brought on by trauma or stress, like that of starvation in an eating disorder, or by infections like mold toxicity, Lymes Disease, and even COVID. Because MCAS is still in its infancy as far as research goes, it is often overlooked or even dismissed by clinicians, and remains an undiagnosed factor impacting how clients are or are not able to eat. For this reason, MCAS can both precipitate eating disorders or manifest as a result of them.

So if conditions like these are overlooked, not only do we run the risk of a missed diagnosis, but we allow our clients to needlessly suffer, sometimes for years, while they shuffle in and out of eating disorder treatment. And while neither IBS nor MCAS is 100% curable as of this publishing, there are very well-studied, viable ways to manage and treat these syndromes and significantly improve the ability to eat for many who suffer. Working with an eating disorder team that is trained in recognizing and treating these conditions is vital to make sure the entire person is being considered.

A final word about conditions like these that impact the digestive tract: Many people have suffered from these conditions since their earliest years, sometimes since infancy, and their experiences, whether conscious or unconscious, have had a tremendous impact on every aspect of their lives, including how they formed their earliest relationships and how they continue to move in the world as adults. It is said that the way we do one this is the way we do everything, so it becomes quite crucial to look at our patients through this lens, in order to understand how we can best assist and how we can use the clinical relationship to heal, too.