What if it’s not an eating disorder?
Mainstream medicine and psychiatry actively harm patients who have physical illnesses wherein the origin of the illness cannot be identified through mainstream screening and tests. Rather than admit to a level of complexity that is beyond current understanding, these illnesses are somatized—meaning the patient is told that they have no underlying real disease and therefore it’s a psychiatric problem that needs to be addressed. Psychiatric misdiagnoses and psychoactive prescriptions are what await patients with any disease that is not readily revealed with the biomarker tests of today.
Even with chronic conditions such MS and lupus, where it’s possible to reveal physical damage measurable with today’s screening tools, if these patients have atypical symptoms then they don’t receive the screening and are often misdiagnosed with psychiatric disorders as well.
Which begs the question, have you been misdiagnosed with an eating disorder?
Wait, what? Is that possible? Yes, it is.
Some Context
No one knows the cause of eating disorders. I have identified an underlying commonality in its expression: the misidentification of food as a threat, but I don’t know what causes that misidentification any more than the next person.
No one knows the cause of almost every chronic condition out there be it categorized in the mental health or physical health arenas. It’s very likely that each chronic condition has its own multiple inter-related causes.
We are all immersed in the paradigm of modern medicine that is founded on Pasteur’s germ theory. That’s 165 years of simplicity that is elegant, but also flawed. It’s binary, like so much of modern western thought. There is a pathogen (a disease-causing micro-organism) and a host. Kill the pathogen, while not killing the host, and the host is cured.
My investigations on the up-to-date research available for common viruses such as SARS-CoV-2, Varicella zoster (chickenpox/shingles), the entire suite of Herpesviridae, Cytomegalovirus, respiratory syncytial virus, a whole cluster of oncoviruses (cancer-causing), etc., and their persistence within our bodies beyond the initial acute infection, strongly suggest that both our biome (persistent bacteria) and virome (persistent viruses) have catalyzing abilities for both mental and physical chronic conditions.
It’s our relationship to these long-term persistent squatters that may define how a chronic illness is expressed. It’s not binary and our complex living ecosystem dynamically adjusts and modulates. Chronic illness in this context is more about our own system expressing its challenges in adjusting to the ways of the squatter. While yes, these squatters can be messy and a few actively and progressively damage the immune system, for the most part it’s our own immune systems being zealous that will explain the symptoms we have.
I have come to believe that there is almost no such thing as an auto-immune disease, except in rare instances. By far the vast majority of the conditions where the medical establishment believes that the immune system has somehow turned on itself, likely reflects an immune system that has correctly identified a squatter. The problem is the dearth of accurate biomarkers that can reveal the squatter’s location. The immune system knows; the medical establishment does not.
Of course, uncovering the squatter doesn’t solve anything. We know that Epstein-Barr virus (EBV, a herpesvirus) is implicated in its causative role for the development of so many conditions from MS and dementia to nasopharyngeal cancers and lymphomas. Over 90% of the adult population has EBV as part of their virome. There is no cure and no vaccine for EBV either.
Knowing EBV is a catalyst for getting an MS diagnosis changes nothing about living with MS. Furthermore, knowing you likely have EBV in your body doesn’t tell you anything about whether it will be a catalyst for MS or any other condition for you in your lifetime. It’s not prescriptive and the presence of the pathogen may not mean the onset of any disease whatsoever.
The drastic fall-off-the-cliff reduction in cervical cancers thanks to the HPV (human papillomavirus) vaccines is one of our more recent examples of what modern medicine can do when it’s at its best. Another example is the eradication of many stomach ulcers and stomach cancer with the use of antibiotics against Helicobacter pylori infection. We also have the successful treatment protocol for HIV which knocks down viral load so that a regular life expectancy may be realized.
Microorganisms and viruses are much more sophisticated than we have recognized. Prevention with vaccines that truly ensure the virus cannot take up residence (like the HPV vaccine), or non-pharmaceutical interventions (such as condoms to prevent HIV infection), or antivirals for life to knock down the viral load in the system—these are the limits of our virus squatting treatments to date.
All this to say, if a squatting virus ends up being implicated as a catalyst for eating disorders, there is no way to un-infect you and there might never be. There may be something developed akin to PrEP (pre-exposure prophylaxis) as for HIV where it’s 99% effective for preventing inital infection, or perhaps there would be an effective vaccine so future generations don’t experience eating disorders. Maybe there would be an antiviral cocktail that could knock down viral load thereby removing all the immune-driven symptoms that we currently define as an eating disorder.
What Does All That Actually Mean?
Recent studies implicate some of these persistent viruses in the development of conditions we have always thought to be purely of the mind: from anxiety and depression to psychosis and schizophrenia. Unfortunately, the literature on any correlations of infection and subsequent onset of an eating disorder is at the case study level with one recent epidemiological study uncovering some increased prevalence for those either hospitalized with an infection, or treated with anti-infective agents and the development of subsequent eating disorders:
“Severe infections that required hospitalization were associated with an increased risk of a subsequent diagnosis of anorexia nervosa by 22% (HR, 1.22; 95% CI, 1.10-1.35), bulimia nervosa by 35% (HR, 1.35; 95% CI, 1.13-1.60), and eating disorder not otherwise specified by 39% (HR, 1.39; 95% CI, 1.23-1.57) compared with adolescent girls without hospitalizations for infections. Infections treated with anti-infective agents were associated with an increased risk of a subsequent diagnosis of anorexia nervosa by 23% (HR, 1.23; 95% CI, 1.10-1.37), bulimia nervosa by 63% (HR, 1.63; 95% CI, 1.32-2.02), and eating disorder not otherwise specified by 45% (HR, 1.45; 95% CI, 1.25-1.67) compared with adolescent girls without infections treated with anti-infective agents.”
Being Haunted by the Hong Kong Study
I have referenced the study of patients in Hong Kong in other papers here on this site where the subjects expressed no desire for thinness or fat phobia. I have used this study as an example of how these conditions are both experienced and explained within the context of the culture in which the patient resides. [2]
This study has haunted me in recent years because I now realize that these individuals were diagnosed with anorexia nervosa on the basis that the medical establishment could not uncover any physical reason for the gastroesophageal symptoms they were experiencing.
The patients had an aversion to eating because they experienced physical discomfort, bloating and pain. In other words, these patients are not necessarily an example of a culturally-defined experience for the expression of anorexia nervosa. The patients were told the origin of their physical symptoms was somatic. But what if the origin of those physical symptoms was an immune response to a resident pathogen? The conclusion from this study is that the subjects must be mentally ill (with an eating disorder) because the roster of biomarker and screening tests did not uncover a physical reason for their symptoms but that’s just an absence of evidence not evidence of absence.
Myalgic Encephalomyelitis
ME, often referred to as ME/CFS (chronic fatigue syndrome), is a list of symptoms that are bundled up and given the name ME. The underlying cause or causes are unknown and therefore it is yet another set of observable and life immiserating symptoms that are often dismissed as “anxiety.” I will not link to the examples of deaths that have occurred at the hands of medical professionals when patients with ME have been hospitalized and then starved to death on the basis that they are faking their symptoms. They can be found by searching using a few keywords, if you are interested in learning more: ME, inquiry, hospital, denying NG tube feeding, death.
People with severe ME often have gastroparesis (slow emptying of the stomach) to the point that they are unable to keep any food down. They often also deal with mast cell activation syndrome (MCAS) which generates systemic allergic and allergic-type reactions to many foods. The level of exhaustion they experience, which is more akin to a feeling of being heavily drugged or poisoned than to anything approximating actual “exhaustion,” can further make eating too difficult to achieve. These patients either starve to death at home, or are actively denied sustenance and starved by healthcare professionals who insist they are not unable to eat, just choosing not to eat.
The inability to eat due to physical symptoms such as gastroparesis, fecal dumping (for another day), and/or MCAS reactions is not limited to the symptom cluster of ME. This can also occur for patients with Ehlers-Danlos, MS, Lupus, Crohn’s, ulcerative colitis…
The Disappointing Conclusions
If you avoid eating because you have really unpleasant symptoms and you know that the reason is something physical but you’ve been assured “you’re fine” and the professionals are telling you it’s anxiety or an eating disorder, don’t despair.
Realistically, even a correct diagnosis will result in no real solutions or cures. It might be possible to lower the symptoms with or without the elusive diagnosis. Whether you can locate a professional who will look beyond the can’t-be-bothered diagnosis of anxiety or a mental disorder, you can work on symptom alleviation and this site can help with that even if you are confident you don’t have an eating disorder.
This site can also help if your chronic condition (diagnosed or suspected) is in the mild to moderate range. Severe gastroparesis and extreme exhaustion that render eating an impossibility do require hospitalization and emergent intercession (fluid replenishment, NG tube or parenteral feeding, close medical monitoring, etc.).
The dominant neoliberal framing that we can diet and exercise ourselves back to health tends to fast track many patients with chronic conditions from mild/moderate symptoms to severe. Prioritizing rest and refeeding may set the stage for a period of remission and at the very least keep any worsening of the symptoms off the table.
Too Weak and Fatigued to Eat
If you have ME and that poisoned-exhaustion experience is your primary problem for being able to eat enough to support your body’s energy requirements, ignore the myriad healthist books, podcasts, vlogs and sites that recommend either a) elimination diets, and/or b) curative elimination diets (paleo, autoimmune, low histamine, FODMAP, vegan…).
Ultra-processed foods provide net better levels of energy. These foods are highly digestible and very little of your own digestive enzymes and energy will be needed to transform the food into energy. Although profoundly counter-intuitive in our healthist society that puts foods in a hierarchy of good to bad, ultra-processed foods also give you an opportunity to lower the energy needed to prepare the food (washing, chopping, cooking). Ultra-processed foods are also useful for gastroparesis—smaller volume of food with higher net energy absorption.
Look out the Food Fears Series for more background and information on ultra-processed foods in recovery, or symptom management.
While the graded exercise and cognitive behavioural therapy prescription for ME has been thoroughly debunked as a viable treatment, many physicians continue to advise patients they should exercise and get therapy. If you feel far worse or have flares of your symptoms when you exercise, then don’t. If you want more information on this, read the following paper.
MCAS And Food
Mast-cell activation syndrome occurs with several chronic conditions including, but not limited to, Ehlers-Danlos, multiple sclerosis, ME, long Covid and lupus. Mast cells are the engine of immune responses and when they are highly active then we see allergic reactions.
It needs to be a whole other paper to discuss MCAS. In very basic terms, it is the immune responses driven by mast cells (primarily) that cause symptoms. As mentioned, I hold that it’s the underlying virome (+ genetics + other factors) causing the excessive immune activity as the immune system works to keep the offending persistent viruses at bay.
Symptoms of MCAS are all over the map: tachycardia, postural orthostatic tachycardia (POTS), low blood pressure, numbness, tingling and joint pain, fainting, shortness of breath, gut bloating and pain, gastroparesis, gastroesophageal reflux, constipation, diarrhea, swelling, memory loss, itchiness, hives, flushing, watery eyes and nose…
One of the first go-to treatments for MCAS is to apply either the low-histamine diet and/or the FODMAP diet despite the fact that these options are underwhelming for outcomes:
“We found that histamine and other biogenic amines are present in a vast majority of foods. Available reference sources do not reflect a homogeneous consensus, and the variation between foods makes it impossible for dieticians to accurately estimate amines content to correctly advise patients”
Translated, the above study (and there are several others with similar conclusions) confirmed that lists of so-called low-histamine foods and high-histamine foods are neither dependably low nor high in actual histamine content with any degree of certainty.
“The RCTs on the low FODMAP diet are characterized by high risk of bias. The diet has not been studied in a randomised, controlled setting for more than 6 weeks and trials examining the effect of the important reintroduction period are lacking. There is a risk that the symptomatic effects reported in the trials are driven primarily by a placebo response.”
The biggest drawback with restrictive diets to manage symptoms, in addition to the fact that they don’t really perform as advertised, is that food is energy. Energy is needed to support the immune system doing its job.
While not being exposed to some chemical triggers found in food may mean that your immune system is less active, and therefore you suffer fewer symptoms, the immune system is also being undermined with that lack of energy that is needed to address resident pathogens in the system. It is a quintessential catch-22.
When you have symptoms in reaction to eating certain foods, it’s not the food causing the symptoms. For emphasis: the symptoms are generated by the immune system and yes, those symptoms may be life threatening if it includes anaphylaxis.
Yet not only do low-histamine and FODMAP diets further weaken your body’s ability to keep virome activity at bay, but they are also designed to create a loop of increasing anxiety and food avoidance for those predisposed to the anxiety spectrum. Diet restriction to limit immune-generated symptoms is always a high-risk/low-benefit proposition.
Severe MCAS is a predicament. It’s almost impossible to identify the underlying pathogens that may or may not be generating an overly active immune system. And even if there is a likely culprit, commonly SARS-CoV-2 these days, it still means the cause is basically out of reach when it comes to treatment or cure. Although it should be flagged here that using antibiotics, or antivirals such as valacyclovir, Truvada etc., do seem to help some in lowering their immune reactivity it’s not terribly predictable who may or may not respond well.
For most with MCAS they find no relief with antibiotics or antivirals, or at least from those options that are more readily prescribed by a few in-the-know physicians.
The predicament for severe MCAS is that certain foods create an immune response that is life threatening. These foods cannot be safely consumed. If you are in this situation, then get as much energy in as you possibly can using limited foods that will not put your life at risk and use nutritional supplements and digestive enzymes, in consultation with your primary care provider, to try to expand the range of foods you can safely consume.
As with ME (or MS, Lupus, EDS), if you are currently experiencing mild or moderate symptoms, now is the time to protect and support your immune system as best as you can. Rather than using the restrictive diets as the first line of defence, consider investigating all the digestive enzymes and supplements that can help support the pathways of histamine through the body. DAO enzyme, quercetin, bromelain, papain and ficin are some of many options to support how the immune system creates, uses, destroys and excretes histamine. Rather than not exposing the immune system to food, the approach is more one of trying to buoy up the immune system so that food can be eaten and it doesn’t generate extreme immune reactions.
Supplementation with B vitamins, keeping in mind that many with MCAS react poorly to standard B vitamins and need to have methyl-free versions of the B suite, and vitamin C (known to help the histamine pathways), might also be warranted.
Both H1 and H2 histamine blockers as well as cromolyn sodium are three primary over the counter or prescription options used to lower the symptoms of immune reactivity in MCAS. H1 histamine blockers are antihistamines, most commonly either the second-generation options of loratadine or cetirizine. Be careful with cetirizine as daily use followed by cessation can result in really unpleasant extreme itchiness as part of withdrawal. H2 histamine blockers are the ones used for gastroesophageal reflux and include famotidine, cimetidine, nizatidine and ranitidine. These are all over the counter options, but prescription options are available for H1 and H2 histamine blockers if your symptoms warrant more suppression.
Cromolyn sodium is specifically a mast cell stabilizer used to treat lung, skin, eye and nose allergic symptoms. Over the counter is available as eye-drops only. Unfortunately, although well tolerated, there are severe supply quality and availability issues for both over the counter and prescription options these days. Thankfully, it appears as though the flavonoid quercetin is more effective than cromolyn sodium for blocking cytokine release from mast cells. [5] Histamine participates in the cytokine network.
Therapy
Many with chronic illness are resistant to seeking psychotherapy. This reticence is understandable as often therapy is wielded as a go-away prescription and denies them their physical reality and suffering. Patients are dismissed with the advice to seek out therapy for their “anxiety.”
You cannot think or feel your way out of any chronic condition, no matter the underlying cause or causes.
But I do encourage those with eating disorders and all the other chronic conditions (whether diagnosed or suspected), to consider therapy not because “it’s just anxiety,” or “it’s all in your head there’s nothing wrong with you,” but because your mind supports your body as much as your body supports your mind.
Your reality is yours to navigate and therapy is a tool for doing so when you are the one who sets the goals. And if structured therapy with a therapist has been a failure for you in the past, then consider books, podcasts, videos and the like. There are even a few series on this site to help get you started: No Before Times to Be Had, Knowing and Nudging Terroir and Envirakido. Perhaps steer clear of the marketing systems touting brain retraining as the ultimate cure, as these have heavily oversold outcomes and cost too much.
Chronic conditions narrow possibility, psychotherapeutic investigation broadens possibility. In these circumstances where it may seem you’re on an inexorable path to increasing disability, consciously fostering and encouraging possibility is more of a necessity than a luxury.
Seeking therapy for chronic illness (diagnosed or suspected) is not recommended on this site as a minimization of the real physical symptoms and challenges you face.
Avoiding Food to Tamp Down Immune Responses
You may have restrictive eating behaviours that don’t meet the threshold for having an eating disorder. And those behaviours may have arisen because you will be killed by the immune response if you do eat the offending food (allergic reaction). You may have restrictive eating behaviours because the immune response symptoms are not immediately life threatening (e.g. constipation or bloating), but they are miserable.
You may have been misdiagnosed with an eating disorder and you really have an underlying chronic condition that results in symptoms of gastroparesis, MCAS, brutal exhaustion, etc.
Restricting food types and/or level of intake, no matter what is really driving those behaviours, will not restore or renew your health. You may be forced to do so because the immune system will kill you with the response it generates to the food in question. Every step you take in figuring out how to ease and/or suppress the immune system responses so that food restrictions can be removed from the equation moves you in the right direction. Ideally having a cure for the underlying cause or causes for the immune system’s reactivity would be optimal but, as I’ve said above, that is not on the horizon for any of the chronic conditions I’ve been discussing here.
I want you to know that I know it sucks.
If you’re dealing with physical symptoms after you eat certain foods, then everything short of anaphylactic symptoms (wheezing, shortness of breath, low blood pressure, swelling of the face, mouth and tongue) needs to be managed with everything you can throw at it short of restriction. This applies to those with eating disorders, those misdiagnosed with eating disorders, and those dealing with one or more chronic conditions that are the likely culprits for the food reactions.
And one final reminder for those who may see themselves in my above descriptions of chronic conditions:
ultra-processed foods are superfoods
Stay energized as best as you can.
Breithaupt L, Köhler-Forsberg O, Larsen JT, Benros ME, Thornton LM, Bulik CM, Petersen L. Association of exposure to infections in childhood with risk of eating disorders in adolescent girls. JAMA psychiatry. 2019 Aug 1;76(8):800-9.
Lee S. Anorexia nervosa in Hong Kong: a Chinese perspective. Psychological Medicine. 1991 Aug;21(3):703-11.
Martin IS, Brachero S, Vilar EG. Histamine intolerance and dietary management: A complete review. Allergologia et immunopathologia. 2016 Sep 1;44(5):475-83.
Krogsgaard LR, Lyngesen M, Bytzer P. Systematic review: quality of trials on the symptomatic effects of the low FODMAP diet for irritable bowel syndrome. Alimentary pharmacology & therapeutics. 2017 Jun;45(12):1506-13.
Weng Z, Zhang B, Asadi S, Sismanopoulos N, Butcher A, Fu X, Katsarou-Katsari A, Antoniou C, Theoharides TC. Quercetin is more effective than cromolyn in blocking human mast cell cytokine release and inhibits contact dermatitis and photosensitivity in humans. PloS one. 2012 Mar 28;7(3):e33805.
