Last but not least, this is Part 3 of my Mast Cell Activation Syndrome series, find Part 1 here and Part 2 here. In this post, I will discuss the potential role of nutritional strategies and stress management for symptom management in MCAS.
At For a Digestive Peace of Mind, my practice in Medway, Massachusetts, we have been following the research on Mast Cell Activation Syndrome (MCAS) closely as we work with digestively challenged folks that often present with complex clinical symptoms, including those seen in MCAS. To learn more about our practice, click here.
Today, I am excited to share two Q & A sessions, one with Wendy Busse, a registered dietitian and nationally recognized expert in food sensitivity nutrition care. She specializes in helping food sensitivity clients eat healthy and enjoyable meals. Her specialized nutrition consultative services are provided through videoconference allowing her to work with clients regardless of their location. You can learn more at WendyBusse.com.
I have also interviewed Lawrence Afrin, MD, a well-known hematology and mast cell expert of Armonk Integrative Medicine. Dr. Afrin is the author of the book, Never Bet Against Occam, an interesting book about Mast Cell Activation (I read it in 2 nights!) which includes some of Dr. Afrin’s patient’s case studies. Learn more about Dr. Afrin here.
Food intolerance and MCAS
Like most areas of MCAS, the role of food intolerance is largely unstudied in the medical literature. This paper provides a general review of food sensitivity (including histamine, salicylates and more) and is worth a read. From my clinical experience, some MCAS patients find reducing histamine containing foods helpful for symptom management, but diet needs are very individual. I talk a bit about histamine intolerance in this post.
Why might histamine trigger symptoms?
The accuracy of DAO testing, however, has been questioned.
Histamine toxicity, can present as a form of food poisoning, also known as scombroid poisoning. In scombroid poisoning, bacteria in decaying fish releases high levels of histamine. This high level of histamine intake, elicits a response that can resemble an allergic reaction. Left-over protein rich meals are discouraged in those with histamine intolerance, as protein rich foods increase in histamine content the longer they sit in the refrigerator. Freezing cooked protein meals vs. storing in the refrigerator is one way to slow the histamine production.
Does diet help with mast cell activation disorders?
Giving the variability and complexity of mast cell activation disorders, I have learned that diet should be individualized and as liberal as the patient can tolerate. In a few cases, my clients seem to benefit from a low histamine diet but too be very honest, there is limited and outdated information on the histamine content of foods.
Stress can contribute to mast cell degranulation (activation of mast cells) so it makes theoretical sense to minimize personal stressors when/if possible! Stressors for MCAS patients run the gamut from typical stressors (illness or psychological stress) to even the presence of odors of perfume or paint or the change in room temperature. The reality is, stress is a major problem these days for many of us, so finding individual stress management strategies is essential. Yoga, deep breathing, meditation, or limiting outside commitments, are some ways to better manage stress.
In this next section, I have the two Q and A sessions which further addresses the role of stress and nutrition for MCAS. A big thank you to Dr. Afrin and Wendy Busse for their contributions.
My Q & A with Lawrence Afrin, MD
Kate: Can you explain in layman’s terms how stress may impacts MCAS symptoms?
Dr. Afrin: Many of the body’s various organs (e.g., brain, endocrine glands, etc.) react to physical stressors (e.g., surgery, trauma, major infections) and psychological/emotional stressors by outputting a variety of signalling molecules/chemicals — variably labeled as hormones, mediators, cytokines, etc. — which, among many other effects, can bind/dock with corresponding receptors on the surface of the mast cell, causing activation of the mast cell and thus production and release of more mediators which in turn can directly or indirectly lead to a wide range of symptoms associated with mast cell activation.
Kate: Do you think it is plausible that intestinal distention via gas or a large stool burden in the colon can trigger mast cell degranulation in the colon? (I asked this as so many of my patient’s also present with constipation!)
Dr. Afrin: Yes, it is “plausible” that intestinal distention might be able to trigger colonic mast cell degranulation. Whether such triggering actually is present in any given patient is another matter entirely.
Kate: Based on your clinical experience, what is your advice to patients about diet interventions for MCAS?
Dr. Afrin: In my experience, occasional MCAS patients find “low-histamine diets” (the specific nature of which seems to vary substantially from one author to the next) helpful. Other MCAS patients find other diets helpful, and most MCAS patients find diets of any sort generally unhelpful (not necessarily hurtful, just unhelpful).
In general, dietary interventions should be viewed as exercises in service of “Step 1” in managing mast cell activation disorders, namely, identifying triggers as precisely as possible, and then avoiding them. In other words, if a high-histamine-content food such as cheese or wine or shellfish or aged meat is found to reliably trigger a flare of symptoms, then that food should be avoided (whether one wants to call that a “diet” or not). All a patient with a mast cell activation disorder can do with regard to diet is avoid “extreme” diets (obviously!) and consider each dietary intervention as, well, an intervention akin to a medication intervention: if it has not *clearly* providing *significant* benefit after 1-2 months, it should be abandoned and the patient should consider moving on to another intervention/trial.
Kate: Stress management requires an individualized approach, can you elaborate on this particularly in MCAS?
Dr. Afrin: Different patients can be triggered by very different stressors, and different stressors can easily require very different “management tips” even among patients who share the same stressors but who nevertheless have very different histories.
One of the greatest challenges to MCAS patients and the health care professionals who try to provide care for them is that this disease, much more so than most other diseases (in my experience, anyway), is extraordinarily variable in its behavior (as a direct consequence of the known biology of the disease), and thus “the devil [in managing this disease] is in the details.” Obvious “tips” include: (1) identify stressors/triggers as precisely as possible and then do one’s best to avoid them, and (2) identify interventions (pharmaceutical, dietary, and/or otherwise) which will best control the patient’s inappropriate mast cell activation so that stressors which previously would have triggered inappropriate mast cell activation will no longer do so (or at least do so less severely and/or frequently).
My Q & A with Wendy Busse
Kate: From your experience, do you think patients with MCAS benefit from diet alteration?
Wendy: Diet is a common trigger, so identifying triggers can reduce symptoms. Dietary patterns – such as how often you eat – may also be important. The best diet is individual, and it takes experimentation to figure out what works. However, too much searching for the “right diet” can lead to stress, a limited intake and ignoring other important areas, such as self-care. Support from a registered dietitian can help you experiment with your diet, without jeopardizing your health.
Kate: Realizing there should be an individualized approach for mast cell activation syndrome patients– but do you find some overlap with foods that tend to be the most bothersome?
Wendy: In my experience, alcohol is the most common dietary trigger. Chocolate is probably second. However, I don’t like listing other foods, because these foods get labelled as “bad,” as illustrated by this story. I was speaking with a group of mast cell patients at a conference, and one of the ladies pulled a banana out of her bag. Three of the five in the group gasped, and one said – you shouldn’t eat bananas. The lady replied, “I can eat bananas, they don’t bother me.”
Kate: If you had to provide a patient with mast cell activation syndrome nutritional tips to guide them to better health, what would they be?
Wendy shares 8 key tips:
- Be careful with elimination diets. Elimination diets are promoted as a holistic and safe treatment for every chronic condition. Unfortunately, they can lead to malnutrition, food fears, social isolation and can be a time, stress and financial burden. Elimination diets need to be done carefully and continued only if the elimination is truly helpful.
- There are no proven tests to pinpoint food sensitivities. You can spend your money on IgG, MRT, kinesiology, etc. but these tests are not standardized, and each will give a different answer. Testing can lead to unnecessary restriction and confusion.
- Make one change at a time and learn to look for patterns. Haphazard diet changes and constantly thinking about your symptoms is stressful, confusing and expensive. A calm, systematic plan is much easier. Be patient- this can be a long, but very worthwhile, journey.
- Take a break from internet research. The internet is a blessing and a curse. Too much research about food or symptoms will leave you exhausted, confused and afraid. Limit your research and learn how to find helpful information, without getting sucked into the nonsense.
- Many events trigger symptoms, not just food. Your body is affected by things you can see—like food, the weather or stress—and things you can’t see—like hormones and infections. Most people focus on food because it is easy to control, but it may be something else.
- Meal planning is essential. Constantly worrying about what you will eat at upcoming meals is tiring. Meal planning reduces stress, saves time and money.
- Incorporate self-care strategies into your day. Self-care strategies will help you deal with the fear and frustration that are common with food sensitivity.
- Work with a health coach, such as a registered dietitian. A dietitian can help you make a meal plan, stop internet confusion, figure out what foods agree with you, and most importantly get started on your healing journey back to healthy, enjoyable meals. Registered dietitians have rigorous university training and are regulated by their professional colleges.
Kate: What are some of the top myths you think patients gather from the Internet when it comes to mast cell activation syndrome and diet?
Wendy: Some diseases – such as diabetes- are well understood, and doctors can give patients firm facts about the disease and how to treat it. Mast cell activation syndrome is not yet understood very well, so myths flourish. The three most common myths that I hear are:
- Everyone with mast cell disease should follow a low histamine diet. Some patients feel better on a low histamine diet, but not everyone. It is worth trying a low histamine diet, but it should be stopped after four weeks if it is not making a noticeable improvement. If it helps, keep in mind that the low histamine diet is not an exact science, so some experimentation is needed to find individual tolerances and expand the diet.
- Diet will cure mast cell disease. Many people want diet to be the cure because it is the only variable they can control. However, diet is not the cause, so it can’t be the cure. Dietary changes can reduce symptoms, but many other variables are involved.
- Histamine releasing foods should be avoided: Certain foods (e.g., egg white, strawberries, etc.) are said to release histamine in the body. However, this theory is not supported by research. The theory was proposed and eventually became “fact.” Over the years, the histamine releasing lists have gotten longer and longer, as people add to them. Rather than “histamine releasing foods,” a more accurate title is “foods commonly reported to be problematic.”
Kate: Do you have some key strategies for stress management that you recommend to your clients?
Wendy: Self-care strategies are essential for everyone, especially if you have a chronic disease. When I develop action plans with clients, self-care strategies are just as important as food-focused strategies. These strategies help clients become aware of their racing thoughts, realize how damaging they are and gradually pay less attention to them – which helps them make thoughtful decisions rather than reacting impulsively to life events. This is the basis of meditation and mindfulness. It’s a lifetime journey! Some common self-care strategies are:
Establishing a daily breathing practice:
- Rhythmic, deep breathing and bringing your attention to your breath (feeling it leave or enter the body) calms the nervous system and refreshes the mind. There are many different breathing techniques and instructional videos on the Internet. Yoga teachers can be a great help.
Mindfully complete tasks:
- For me, the most helpful meditation is doing everyday chores mindfully. I decide on the tasks – for example, washing the dishes, wiping the counters and sweeping the floor. As I am doing a task, I say words (usually in my head) related to what I am doing – plate, fork, bowl (whatever word pops into my mind, the exact word is not important). These words quiet my racing thoughts. I also try and experience the physical sensations – the heat of the water, the sound of the tap running. If I get distracted by an impulsive thought, I bring my attention back to my task with a related word. Sometimes the impulsive thoughts lead to impulsive actions – for example seeing cookies on the table and eating one. I remind myself to carry through with my plan – dishes, counter, floor – before deciding on my next activity…which hopefully includes a cookie 😊
Although there is much work to be done in the understanding and treatment of MCAS, I have witnessed my clients experience vast improvements in their quality of life working with a physicians that specialize with mast cell disorders as well as with supportive health care providers including registered dietitians.