Tag Archives: mcas

Eosinophils & Mast Cells

Primal Trust & Healing MCAS

I have waited to post about a new program I have been involved with called Primal Trust. I wanted to see if this program is all that I hoped it would be, and GOOD NEWS, it is!

For any of you who have read my blog and my quest to find healing, I have found Primal Trust to be the most comprehensive and supportive program I’ve been a part of. It is the creation of Cathleen King, DPT (Doctor of Physical Therapy) based upon her experience with healing from Lyme Disease and multiple other diagnoses.

She has combined brain retraining, nervous system regulation, vagal toning, and what she calls “true self discovery” – what could also be called psychological and emotional inquiry – into a supportive community and healing platform.

The program is completely online and laid out in levels, with multiple classes in each level, to create increased capacity in the nervous system, to rewire brain firing patterns and to increase emotional regulation. The classes are sometimes live and sometimes recorded. And there are study pods and study groups available to deepen the understanding of the class.

Since Dr. Cat (as she is affectionately called) has been teaching iterations of Primal Trust for several years, she now has other Mentors and Ambassadors who also teach live classes and manage study pods. Each of these individuals have the experience of chronic illness and have gone through the Primal Trust program. Their stories of healing are quite compelling, and I have found them to be honest, truthful, and most of all compassionate.

For those of us with chronic illness, there is nothing more disconcerting that to reach out for help, and be told “it’s all in your head,” or be met with a harsh comment about why you haven’t healed yet. I have never found that in this community.

Being in a safe space with other “fellow travelers” as I like to call the other participants in the community, has allowed me to find comfort and healing while also feeling safe. This has helped my nervous system to calm down.

I am participating in a once-a-week study pod with 25 other participants. I have a study buddy that I connect with once a week to discuss the homework and the exercises, and in general to co-regulate. I continue on a daily basis to practice the various exercises that Dr. Cat has found worked to help her heal, and that other participants have also followed.

I began this program in August of 2025, and it’s not sold as a “quick fix.” It does require ongoing participation and commitment. I have found that I have a much better understanding of what my triggers are, especially emotionally AND how I can get my nervous system back into regulation.

I’ve experienced much better sleep at night. Insomnia, or awakening with anxiety, has been a big issue for me with MCAS. I am now able to calm myself and get back to sleep for a valuable night’s rest.

The surprising healing that I’ve experienced is that my pollen allergies have been milder this spring than they’ve been in literally decades. I wasn’t even looking for healing in that area, and am thrilled with that revelation!

I will be continuing to update you with further healing stories from my healing journey with Primal Trust. In the meantime, if you want to check it out, do so here!

Eosinophils & Mast Cells

MCAS and Another Diagnosis!

I recently wrote a blog post about the “Cascade of More Diagnoses” with MCAS. I’ve recently added another diagnosis: Kidney Stones! This is one that I never thought I’d be writing about.

For those of you who read my blog, you may remember that I have an autoimmune diagnosis called IgA Nephropathy that affects my kidneys. This diagnosis is apparently independent of kidney stones, and isn’t linked to the production of stones from what I’ve been told. My mother had kidney stones in her 80’s from dehydration, so that shouldn’t made for a genetic link, also from what I’ve been told. So, I needed to figure out why I’m suddenly producing stones and what can be done about them.

I have been going through various testing, a CT scan, and meeting with doctors to determine the cause of the kidney stones and whether surgery will be necessary. The cause has come down to my limited diet, full of too much protein, as the culprit. As those of you with MCAS know, wanting to add new foods to your diet and actually being able to do so are two different realities.

I have a urologist who doesn’t understand, and quite frankly isn’t willing to learn, about MCAS. He thinks I just need to get on a medication “like the ones people take with an organ transplant” to stop my body from reacting. In the next sentence, he will make fun of me for being so sensitive and inquire why I can’t just drink orange juice. Geez! I’ve dealt with this kind of gaslighting and ignorance from doctors for years, but it still doesn’t make the experience any less frustrating. He’s known as an expert surgeon with kidney stones however, so for now I’m putting up with him.

Then, I have a nephrologist who is completely open to learning about MCAS and has been a lifesaver. He’s willing to allow me to determine how and when I’ll add more foods to my diet, and whether or not I’ll be able to tolerate medications like Allopurinol to lower the uric acid in my system. I wish all doctors were like him, and I’ve told him such.

The nephrologist has the job of determining what’s causing the kidney stones and how to cease them from reoccurring. The urologist will determine what to do about the two large stones that are currently embedded in the walls of my kidney and whether “blasting” them, taking medication to shrink them, or going through a surgery to remove them is the best course. For now, I’m not willing to do anything invasive, and medication is a tough choice. I’m drinking more water and waiting to meet with my urologist in a few weeks to get his opinion.

My mast cells have gone crazy with the passing of the kidney stones, no doubt thinking that they need to protect me from this force from within. I’m grateful for Benadryl, but taking it makes it difficult to carry on with life. Mast cells are wonderful when they behave correctly, but goodness they can create a firestorm when they are activated and degranulating.

I am taking care of myself by sleeping more and letting my body do its best to move beyond the pain of the passing of the stones. Thank goodness for family and good friends to help me through the emotional piece of this also – getting another diagnosis isn’t what anyone wants!

Emotional Aspects of Food Allergies, Eosinophils & Mast Cells

MCAS and Stress

Mast Cell Activation Syndrome (MCAS) is not only a creator of stress, but it also is affected by stress. In our fast paced world today, it may seem impossible to not feel stressed; however, if you have MCAS finding ways to mitigate your stress will help your symptoms to at least calm down if not disappear.

I’ve found there are two types of stress that affect me with MCAS: physical stress and emotional stress.

Physical stress can come from a car accident or a fall, a virus, surgery or overdoing exercise. I have had experiences with all of these, and having a mast cell degranulation in addition to falling down and scraping my knees can feel overwhelming!

My mast cells are only trying to protect me, yet they frequently overdo the protection. I find myself having to manage the cuts and bruises, and then taking a Benadryl or Zyrtec to calm down the nausea and gut issues from the mast cells “helping” me to heal. My cuts heal quicker than my nervous system from the overdose of chemicals that the mast cells release. In this heightened state, my mast cells become more sensitive. Things that usually wouldn’t bother me (foods, smells, heat, exercise) might suddenly trigger symptoms. It’s a feedback loop that’s difficult to get out of.

Chronic stress shifts the immune system toward a more inflammatory pattern which can then yield brain fog, fatigue and GI symptoms. With all of this issues, my sleep is then disrupted, which triggers more mast cell reactivity in my nervous system.

It’s easy to fall into the trap that MCAS is just a physical issue. I’ve found that isn’t entirely true. Emotional stress also needs to be managed to give the body a better chance at being stable and able to withstand physical stress and to not fall into the feedback loop of reactions.

I recently sold my home that I’d lived in for over 30 years, and purchased a new townhome to downsize. The stress of this move showed me how much my emotional state affects my mast cells. I was making lists of everything that needed to get done, and it felt overwhelming. My fear was that I was never going to get everything accomplished and that the house wouldn’t get on the market before the start of summer. All of these scenarios were running in my head, while also recognizing that I needed to find a place to move into. How would I do both things at once? Thankfully, I have good friends, a good therapist and a mother who loves to be a companion looking at new places to live! One day at a time, I was able to get all of this accomplished, even though it took about 6 months from start to finish.

Slowly my body is getting into a calm balance. It has been difficult to get my mast cells to recognize that they don’t need to overprotect me. The best way to show that to them is to have a daily practice of calming exercises.

I learned how important it is for me to continue my Zhineng Qigong practice daily when I have emotional stress occurring. I’ve added a breathing practice, and vagal toning exercises to help calm down my nervous system which also helps to calm mast cell activation. If I can calm down my stress response, my mast cells don’t feel the need to protect me so much, and my capacity to withstand a physical stress is greatly enhanced.

Here’s to a slower and calmer approach to life!

Eosinophils & Mast Cells

MCAS and the Cascade of more Diagnoses

Mast Cell Activation Syndrome (MCAS) is still in its infancy in the world of health care, but recognition of the condition has come a long way in the last 20 years . When I began having symptoms, no doctor had a name for what I was experiencing. One GI doctor called my diagnosis an “Unnamed Cellular Disorder”. Different sources state the name Mast Cell Activation Syndrome was created in 2007, while the diagnostic criteria wasn’t proposed until 2010. I began having symptoms, while unrecognized at the time, in the early 2000’s. And as the years went by, some of the symptoms I was experiencing weren’t just from the MCAS, but from other issues that sourced from inflammation or cellular miscommunication.

Because of the length of time that I’ve had MCAS, I have also had the experience of new diagnoses being given to me. I believe all of these new diagnoses source from the inflammation that MCAS creates in my organs and my skin, along with a nervous system that views everything as a “tiger” instead of an innocuous item. These tigers can be food, scents, pollen, stress, and they can also be innocuous things, but my body has a difficult time differentiating the two. The result is that my body remains in a cycle of inflammation and other conditions end up being diagnosed.

The first additional diagnosis I received was for Eosinophilic Esophagitis (EoE). This one makes sense to me. All of the inflammation in my esophagus created the need for more powerful cells to show up and mitigate the issue. Sadly, eosinophils hung around for a long time in my esophagus doing more damage than good. I had one endoscopy in 2011 where I had 80-90 eosinophils per high powered field in my esophagus! No wonder I was so miserable! The good news is that since then, I have gotten much better at controlling the mast cells, through the correct antihistamines and mast cell stabilizers, and my last endoscopy in 2024 showed no signs of EoE! That is a big accomplishment!

Another diagnoses that I have received since the MCAS diagnosis is Blepharitis, which is an inflammation of the eyelids. It sounds fairly innocuous, however I can attest that it’s only a daily regimen that I have to keep this issue from affecting my ability to see. I do lid scrubs twice a day and hot compresses on my eyelids once a day to keep my eyes and eyelids in good shape. Summertime with pollen in the air makes this condition get worse, so I have to be careful being outside too much when pollen counts are especially high.

I had Rosacea diagnosed several years before I had MCAS diagnosed, and I’m convinced my facial skin was so red from all the heat in my stomach and intestines. This skin condition can be very painful, and it was for me until I began to research and find the right skin creams, moisturizers and soaps to use on my facial skin. Again, this takes a daily routine that isn’t varied, and a commitment to do it daily. I can say that almost every MCAS patient I have met has told me they have also been diagnosed with Rosacea.

As the years went by with MCAS, I got diagnosed with IgA Nephropathy, a kidney autoimmune condition where blood and protein is found in the urine. This can be a benign illness, or one that leads to kidney failure. I got this diagnosis about 6 years ago, and now have to see a Nephrologist every year to have blood and urine tests to see how my kidneys are functioning. Interestingly, for me, it’s not a trajectory downward, but rather a situation of one year it looks like I’m getting better and the next year it looks worse. My doctor is wonderful and is not a catastrophizer, which is very helpful to calm me down when the test results don’t look so good. Since I’m unable to take medications orally without impacting my sensitive stomach, and my diet is still very narrow and filled with too much chicken (too much protein in the diet can make test results worse), I’m really unable to do anything about this diagnosis. And that helpless feeling isn’t very comfortable for me. I do a daily Zhineng Qigong practice that has been shown in their research to assist the kidneys in healing, and other than that I continue to try to find a new food that I can tolerate so I can lower my animal protein intake.

A skin condition called DSAP (Disseminated Superficial Actinic Porokeratosis) is my latest diagnosis. This creates circles on the areas of my skin that have had too much sun exposure, which for me is my arms and legs. I’ve been given a prescription of Lovastatin Cream that is helpful, but does nothing for the lesions already on my skin. The cream is to prevent more lesions from appearing, but for me it probably prohibits about 50% and my skin still looks a little frightening. People with autoimmune issues are more likely to receive a diagnosis of DSAP. One diagnosis leads to another and to another.

All of these issues with my skin and my kidneys comes down to too much inflammation in my body. Mast cells are such a wonderful cell, but too much of a good thing isn’t good! I’ve found that worrying makes everything worse, so I continue to do my Zhineng Qigong practice daily, try to keep my life to a minimum of stress, and enjoy each day! I will continue to share what I’ve found that works for me to mitigate the symptoms of MCAS on this blog, and if YOU have found anything that works for you, please contact me at Nicole@AllergicChild.com.

Coronavirus COVID-19, Eosinophils & Mast Cells

New book for “the Sensitive Patient”

The 2024 book, The Sensitive Patient’s Healing Guide by Neil Nathan MD, is a great resource to assist patients with multiple sensitivities understand what’s going on with their body in addition to finding a path to healing. While Dr. Nathan has focused much of his practice on patients with Lyme Disease and Environmental Toxins, I’ve found that his understanding of the manifestations of symptoms of extremely sensitive patients (such as myself) is very affirming. I’ve been told by well meaning doctors and nurses that there’s no way anyone could be as sensitive as I am. Not helpful!

His book, Toxic: Heal Your Body from Mold Toxicity, Lyme Disease, Multiple Chemical Sensitivities, and Chronic Environmental Illness, introduced me to the concept of Cell Danger Response, which I wrote about in a previous blog post.

Dr Nathan is on the forefront of understanding what no western medicine doctor that I’ve seen understands – that the symptoms I experience aren’t “all in my head” and that it is possible to be extremely sensitive to scents, chemicals, foods, pollens and more. For me, even the smallest amount of a new food can send my body into a mast cell reaction.

By reading this book, I’m getting more of a vision of what’s going on in my body with the various systems and cell reactions – the limbic system and the vagus nerve affect the messages that my brain and my gut are sending and receiving; the mast cells are releasing chemicals believing my body is under attack (even when it’s not) and needs to be defended. All of these mixed up communications create a firestorm inside my body that continues to create more and more sensitivity. No western doctor has ever offered me anything other than a medication. This book offers many more paths to try to get the communication corrected between systems and cells including frequency specific microcurrent (FSM) and other new devices to help appropriately stimulate the vagus nerve and quiet the autonomic nervous system.

This book is comprised of chapters written by experts on a particular topic. For example, Annie Hopper, the founder of DNRS (Dynamic Neural Retraining System) writes a chapter on the Limbic System and Stephen Porges, PhD writes a chapter on Polyvagal Theory. There is a great and VERY thorough chapter on Mast Cell Activation Syndrome written by Beth O’Hara who created Mastcell360.com. Getting detailed descriptions from these expert’s research and findings added to my understanding of these topics. Also, each expert gives a long list of potential modalities that they’ve found have helped their patients to heal. Also, Long COVID is mentioned frequently in the book, since it was just written last year. As I continue to pursue new modalities to try, it’s wonderful to get more options.

The book also goes into the various triggers that can create sensitivity such as emotions, genetics, viruses such as COVID, hormones and more. If you’ve been trying to get a diagnosis of what’s ailing you, I’d highly suggest reading this book. Many of the chapters also have a list of symptoms to assist you in discovering what could be at the source of your illness.

P.S. I did not receive any remuneration for suggesting this book. It is suggested based upon my experience of it being a valuable source of information.

Coronavirus COVID-19, Eosinophils & Mast Cells

Mast Cell Activation Syndrome and Post COVID-19 Illness

A recently published article by Dr. Lawrence Afrin, the author of Never Bet Against Occum: Mast Cell Disease and the Modern Epidemics of Chronic Illness and Medical Complexity, and two other mast cell doctors, have found a consistency of symptoms of Mast Cell Activation Syndrome (MCAS) and those of “long-haul COVID-19”. They also postulate that those patients with severe COVID-19 symptoms of hyperinflammatory cytokine storms may in fact have undiagnosed MCAS, a chronic multisystem inflammatory disease.

If you are not familiar with the illness of Mast Cell Activation Syndrome, it is a beast of an illness to live with and to diagnose, mainly because the symptoms can look like so many other illnesses. (I have written a series of informational articles about MCAS here. )

For some people, the symptoms of MCAS aren’t enough to actually seek medical care. They may have an occasional stomach ache, or rash, and have never needed to become a detective to determine why they were able to eat blueberries, for example, last month and this month their stomach hurt horribly after eating them. Or the few hives that they get in the autumn season aren’t enough to bother them. Yet underlying these symptoms and others, the body’s mast cells are overreactive, while the person will declare themselves perfectly healthy. Then, when the body begins to fight off a virus such as COVID-19, the body overcompensates its response to the viral load and releases thousands of chemicals (cue the cytokine storm) that end up doing more damage to the body than the virus itself.


SARS-CoV-2-Reactive T Cells Found in Patients with Severe COVID-19

Recent statistics regarding COVID-19 suggest that only 15-20% of patients will experience a severe form of the illness. It is interesting to note that previous research on the prevalence of MCAS in the developed world is 17%, with the abundance of individuals unaware that the symptoms they are experiencing are in fact from mast cells acting abnormally.

Any virus would call forth a response by mast cells in order to heal the body. The problem with MCAS individuals who remain undiagnosed and therefore untreated, is that their mast cells are dysfunctional and react inappropriately to COVID-19 causing thousands of chemicals to be released into the body.

Fatal cases of COVID-19 are frequently caused by cardiovascular conditions, and heart damage has been one of the frequently cited long-term affects of the illness. Mast cells play a significant role in cardiovascular complications seen with COVID-19 such as pulmonary embolisms. Additionally, mast cells patients frequently cite “brain fog” as one of their symptoms, a common complaint of long-haulers with COVID-19.

Fatigue is a classic symptom of MCAS, frequently made worse by insomnia. Once again, these are common complaints of individuals who are still experiencing symptoms months after being diagnosed with COVID-19. In the research report, the doctors provide a table of symptoms by organ/system comparing MCAS with COVID-19 patients. The similarities are striking.

For individuals in the midst of the virus, doctors are finding that medications used to mitigate the symptoms of MCAS, inhibiting mast cell activation, are also helping COVID-19 patients: cromolyn; leukotriene inhibitors, dexamethasone, low-dose naltrexone, quercetin, and H1 and H2 blockers (antihistamines such as Zyrtec and Pepcid). These drugs might mitigate the severity of the illness, helping patients to not progress to the severest form of the disease.

An interesting note in the article concerned MCAS patients who had been previously diagnosed and were being treated for their mast cell activation. When these patients tested positive for a COVID-19 infection, all fared well enough that the doctors stated that “none have required mechanical ventilation, let alone died”. Their conclusion was that the patients had their mast cells at least partially controlled so that they did not suffer the most severe courses of the disease, but that they were still at increased risk for suffering from the post-COVID-19 illness.

For those of us with a diagnosis of MCAS, the volume of research that is currently occurring on COVID-19 will undoubtedly help us to have more understanding of our illness. And hopefully, a cure!

You can read the full article, Covid-19 hyperinflammation and post-Covid-19 illness may be rooted in mast cell activation syndrome in the International Journal of Infectious Diseases.