Diagnosing Mast Cell Activation Syndrome (MCAS) – Update and diagnosis confirmation

Two weeks ago, I flew up and back in a day to see Dr. Larry Afrin, a well-known physician, and researcher in Mast cell diseases and Mast Cell Activation Syndrome (MCAS). My appointment was a follow-up to my visit in June 2015. Originally, I was not sure if flying to Minnesota again would prove helpful, or at least not at this point. All my lab tests were negative, other than for one mast cell mediator and I had not retested. We also did not have the results from any of my previous biopsies that Dr. Afrin requested to have stained for mast cells — or so I thought. The day before my appointment, I received confirmation that Dr. Afrin’s office was able to stain tissue samples from a colonoscopy eight years ago for mast cells and the results proved helpful — I have a diagnosis. What the official diagnosis was, I was unsure until my appointment the next day.

I left at 8 am the next day, flew to Minnesota and arrived a few hours before my appointment later that afternoon. My follow-up appointment was uneventful, other than Dr. Afrin showing me my biopsy results and allowing me to read the lab report stating that every single section of my GI tract was positive for too many mast cells. Tissue samples were taken from 10-12 different spots along my intestinal tract. Based on the positive findings from each tissue sample stained and the positive lab test for one mast cell mediator, Dr. Afrin felt as though we did not need to stain additional biopsies, such as the bladder, uterus, or upper GI.

Tissue samples from my 8-year-old colonoscopy stained for mast cells

Confirmed – Diagnosis #2001 Mast Cell Activation Syndrome (MCAS)

 

How can a healthy lifestyle help when you have MCAS?

Interestingly, Dr. Afrin and I also discussed how much lifestyle can play a role in helping manage symptoms and issues related to MCAS. We explained my lab tests and that a plausible reason they did not equate with the same results as my biopsies are because I’ve remained consistently active since I was a kid. Dr. Afrin mentioned that exercise is one of the best things we can do for our mast cells; however, there is a small percentage that would not have the same benefit. Similarly, I shared with him that I notice a huge difference when I do not regularly engage in high-intensity exercise and he shook is head in agreement. We did not discuss the reason(s) that high-intensity exercise can or cannot help MCAS symptoms in further detail, but my guess is that I’m not alone in this finding either.

Managing symptoms of MCAS and its related issues and conditions is complicated. Not one therapy, medication or approach works for everyone with MCAS. Stress is the number one trigger for MCAS reactions. Stress includes normal daily stress, environmental stress, trauma, illness, lifestyle choices, and toxicity. Many times, stress to our bodies is out of our control. Other times, we can do a lot more to decrease the stress that our bodies feel. Consistent exercise is by far one of the best things you can do for taming mast cell reactions, as well as the severity of them. Of course, there are those who are allergic to exercise; however, it ‘s hard to say if the allergy is due to deconditioning or something else, mainly because many people (MCAS or not) have not engaged in consistent and regular exercise for most of their lives. My mother and grandmother were two of those people. Both used to tell me how they didn’t like to sweat, or do that “exercise thing” I do. I’ve always wondered if their dislike of exercise or sweating stemmed from undiagnosed MCAS. Maybe both my Mom and Gram experienced allergy-related reactions to heat, sweating, or another component of physical activity.

Personally, I get itchy and have some issues when I exercise. I usually do not stop unless my heart rate increases faster and higher than normal. Usually, I try to modify what I do or slow down during a specific session. Sometimes all I can complete is “Just 5 Minutes” of something; however, something is better than nothing — even if I can only do bridges while laying in bed. I can imagine that some people may feel as though they cannot exercise at all because they feel allergic to it. The good news is that by using an integrative approach to managing MCAS-related symptoms during exercise, most people can find ways to engage in regular activity again. With proper guidance from your physician, and counseling from MCAS (or EDS) knowledgeable physical therapist or health coach, there are many ways to modify exercise — starting very slow is key. Additionally, regular exercise can also help manage symptoms associated with POTS and autonomic dysfunction, known as Dysautonomia (POTS is a type of Dysautonomia), another condition related to Ehlers-Danlos Syndrome (EDS). POTS/Dysautonomia are also associated with Mast Cell Activation Syndrome (MCAS) as well.

What are mast cells and how can they cause so many problems?

Mast cells are our allergy and inflammatory cells; a type of white blood cell and a primary component of our connective tissues. The process of mast cell activation “is a standard process and is protective of the human body. Mast cells are the cells that are the initial contact with an allergen or bacteria or other perceived threat. When that happens, they degranulate, releasing a ton of chemicals, which then begins the chain reaction that is as our immune system.” Dr. Theoharis Theoharides (Dr. Theo), one of our speakers for Wellapalooza 2015 and a mast cell researcher, describes Mast Cell activation below:

“Mast cells are the “universal alarm cell” that starts the inflammatory cascade. They can be triggered by infection, allergens, environmental factors like pollution, or even emotional stress. Once that happens, mast cells set into motion a series of inflammatory reactions, including the activation of immune cells and the release of tumor necrosis factor-alpha (TNF-alpha), a pro-inflammatory protein, or cytokine.”” – What is Mast Cell Activation Syndrome (MCAS)” – Wellapalooza.com.

Problems arise when mast cell activation progresses from a healthy and protective process to a dysfunctional, multi-systemic disease caused by our mast cells becoming overly sensitive and reactive. Some patients with MCAS have too many mast cells in affected organs, as in my personal case with MCAS — I have too many mast cells throughout my entire GI tract (shown above in image of pathology results). Too many mast cells found in the organs of those with MCAS, shouldn’t be confused with Mastocytosis, a proliferative bone marrow disease that is caused the bone marrow overproducing too many mast cells. The mast cells in patients with Mastocytosis are often deformed and do not function properly.

Similarly, my bladder also has dysfunctional mast cells. Too many or overly reactive mast cells in the bladder are linked to a condition called Interstitial Cystitis or IC (AKA – painful bladder syndrome). A few of my other organs that have become infiltrated with too many mast cells are my uterus and eyes. Many people with MCAS also have autoimmune conditions such as hypothyroidism, other endocrine problems, Lupus or Rheumatoid Arthritis (RA). Fibromyalgia and Chronic Fatigue Syndrome (CFS) are quite common as well and have been linked to mast cell activity. While MCAS itself is not an autoimmune condition, it is often the catalyst that turns the autoimmune switch on for related conditions.

My personal philosophy on managing my mast cell issues

I view my mast cells for what they are and the job they are made to do in my body – the initial contact with an allergen or bacteria, resulting in a protective process that is designed to keep my body and immune system healthy. Even though my mast cells are dysfunctional, I still focus on tactics that I know work best to help calm my entire system. For me, working to calm my whole system, helps decrease the sensitivity and reactivity of my mast cells, but it’s far from a cure. Calming techniques such as regular exercise, yoga, mindfulness exercises, adequate sleep, proper nutrition and hydration, and time to myself — alone and without noise — help reset my system and maintain stability or my body’s “homeostasis.” Dietary options have become an even larger portion of trying to control MCAS, but finding what works can be quite challenging – it’s all about trial and error. Personally, I do best on a mostly liquid diet and by eating whole foods. I try to focus on eating foods that are not processed or fried, and I eat little dairy and gluten. Sugar is by far my biggest downfall; even still, we use raw sugar cane, honey, and a lot of coconut products as sweeteners at home. Some people follow a low-histamine diet while others follow an anti-inflammatory paleo diet — the key is to find what works for you.

Standard approaches to treating MCAS are to use medications such as Asprin and other non-steroidals. Prostaglandins are a type of mast cell mediator released during degranulation and non-steroidal medications such as Ibuprofen (brand name is Motrin or Advil) act as a prostaglandin blocker. Other routine therapies for MCAS are Quercitin, a natural antihistamine, and cromolyn sodium or Gastrocom often used to help for those with MCAS-related GI issues, such as leaky gut and Gastroparesis (slow-motility). There’s also the typical combo of Zantac and Zyrtec or Prevacid and Claritin that many do well with; however, it’s critical that you work with your physician to find the right combo, dosing, and amount of medication that is best for you.

Another class of drugs that works well for some patients are benzodiazepines. Benzodiazepines include medications such as Valium, Xanax, and Ativan, which act as mast cell stabilizers, in addition to their intended mechanism of action. Similarly, that has proven helpful to a number of patients is Atarax, a strong antihistamine commonly used for eczema and psoriasis; it’s also proven been reasonably successful for people with Interstitial Cystitis (painful bladder syndrome). Stimulants like Adderall, Vyvanse and Ritalin also provide some patients relief and are considered to help stabilize some mast cell activity. Last, there are more serious medications that have worked well for certain subsets of mast cell patients. One of those drugs is called Gleevac or Imatinib. Pharmaceuticals in this class of are used to treat a variety of conditions, including leukemias, aggressive Systemic Mastocytosis, and myeloproliferative diseases; used often in conjunction with chemotherapy drugs. Medicines in this class have also been used to treat Chronic Fatigue Syndrome in some studies in Europe and have done fairly well.

Moving forward

After the flu shot in October 2014, my mast cell issues turned into a whole different ball game – nothing like I have experienced before. I now have flares with POTS, when I did not before and daily life has included more struggles than I’m used to having to deal with on a consistent basis. I’ve learned to manage by listening to my body, versus chasing side effects that often end up being medication related versus condition related. For me, taking any medication always feels like a catch 22 and is an incredibly delicate balance. Of course, life and different triggers can set things off, so it’s imperative to learn how to go with the flow. When you live with a chronic medical condition(s), such as MCAS or Ehlers-Danlos Syndrome (EDS), life is a constant state of ebb and flow – you can either fight against it or learn to go along for the ride.

While I’ve learned how to go along for the ride fairly well, I realize that I need to calm my system down and helps it return to a more manageable homeostasis. My plan includes returning to my previous “normal” amount and intensity of exercise. My husband and I are also meeting with a nutritionist who has worked successfully with mast cell patients. Our hope is that she can help us better prep our kitchen for cooking meals and snacks that the kids like and I can eat.

FullSizeRender-5And … I decided (along with my husband) that going on a seven-day yoga retreat at The Mindfulness Center may be the exact “medicine” that I need — at least, right now. The retreat is in March and is at Blue Spirit in Costa Rica. The plan is to give my body a break by fully submerging in what I know works best to help it return to stability.

Helpful Links: 

– “What is Mast Cell Activation Syndrome (MCAS)?

– “What is Mastocytosis?

– “Mast Cells in Gastrointestinal Disease

– “Intestinal mast cells in gut inflammation and motility disturbances.”

– “Mast cell activation disease: a concise, practical guide for diagnostic workup and therapeutic options.”

Interstitial Cystitis (IC) and Mast Cell Activation Syndrome

– “Mast activation diseases & functional GI disorders – common comorbidities to Ehlers-Danlos Syndrome.”

– “If you cannot connect the issues, think connective tissues.

– PDF with three articles discussing EDS/Joint Hypermobility and Functional GI Disorders

– Post – “Why being hypermobile can be a pain in the gut.”

– Post – “Diagnosing Mast Cell Activation Syndrome (MCAS) – Part 1/4

– Post – “Diagnosing Mast Cell Activation Syndrome (MCAS) – Part 2/4

– Post – “Diagnosing Mast Cell Activation Syndrome (MCAS) – Part 3/4

– Post- “Diagnosing Mast Cell Activation Syndrome (MCAS) – Part 4/4

Resources:

Mast Attack.org

Mast Cell-Aware 

Dr. Theo’s site for publications on mast cell activation & related conditions

The Mastocytosis Society

– EDS Natural Healing Brochure

Wellapalooza – Integrative Health and Wellness Conferences (& Retreats) for persons living with chronic illnesses, such as MCAS and Ehlers-Danlos Syndrome (EDS)

– Post – “Top 10 Nutrition Tips for living well with Ehlers-Danlos Syndrome.”

Original post on EDS Wellness Facebook Page