All About Mast Cell Diseases + A Short Book Review

As I have said in a quite a few of my posts- I am always trying to “crack the code” on myself. My physical and physiological state has not been optimal for a while as I struggle with symptoms that pop up frequently.

Very recently, I heard about mast cells and how they can pose health problems for some people. I ended up reading a lot about the topic on the internet and also bought a book on it. In doing this, I am led to believe that I may have a mast cell issue.

For this post, I will be talking all about mast cell diseases (in a simple way!) and provide a review of the book I read.

What mast cells are and do

Mast cells are found in our connective tissue which means that they are in multiple areas of the body. These areas include our nerves, respiratory system, digestive system, urinary tract, uterus, endometrial tissues, blood vessels and near the skin.

The mast cells defend against substances (also called antigens) that can tick off our system. When these cells are ready to “fight,” they release the chemicals that they contain. The chemicals include histamine, interleukins and heparin.

When the aforementioned chemicals come out of the mast cells, we may end up feeling uncomfortable mental and physical effects. Because of this, we have come to learn that mast cells are responsible for allergic and other inflammatory reactions.

About mast cell diseases

Some people have a harder time than others when it comes their mast cells. They may have too many of them and/or they overrespond to certain agents that bind to them. This is when one is considered to have a mast cell disease.

In the mast cell disease category, there are variants. These include systemic mastocytosis, cutaneous mastocytosis, smoldering mastocytosis, mast cell sarcoma (extremely rare with a poor prognosis) and mast cell activation syndrome (MCAS).

All but MCAS involve having too many mast cells. MCAS is when one has a normal amount of mast cells but they hyper-respond to various substances.

Symptoms for mast cell diseases can include the following:

• Itching
• Flushing
• Diarrhea
• Blood pressure issues
• Shortness of breath
• Body pain/aches
• Brain fog
• Fatigue
• Nausea and vomiting
• Bloating
• Lightheadedness/dizziness
• GERD
• Mood swings
• Sore/swollen throat
• Heart rate issues
• Chest pain
• Uterine and/or ovary cramps

As you can see, there are a lot of symptoms that people with mast cell diseases may end up dealing with. Again, this is due to these cells being in many places of the body.

Although all of the mast cell disease can have the symptoms listed, the ones that occur in the mastocytosis variants are typically worse and in some cases-life threatening (i.e. anaphylaxis). They can also cause organ damage.

There are many things that can trigger mast cell reactions and they differ from person to person. These triggers can include the following:

• Different types of food
• Infections (bacterial, viral and fungal)
• Stress
• Weather changes and extreme temperatures
• Certain medications
• Environmental allergens (i.e. pollen)
• Chemicals (such as the ones found in cleaners)
• Fragrances
• Exercise
• Insect bites

The time before a reaction from any of the above things can range from a minute to 24 hours later.

Diagnosing mast cell diseases involves multiple steps. The following is the pathway to a diagnosis:

1. Talking to a doctor about all of your symptoms is how to get the ball rolling on a mast cell diagnosis. There should also be a discussion on one’s medical history as that can be of help too.

2. Getting a comprehensive work-up done is the second step if the doctor is on board with the possibility of a mast cell disease. This may include mental health testing, blood work, physical examinations, endoscopies, echocardiograms, skin prick tests, CT scans and more. Doing all of this will help to rule out any other problem that may be causing the symptoms.

This step is also when a serum tryptase level should be looked at. If the level of this is high, it likely indicates a mast cell problem.

3. Once a mast cell disease is figured out to be the likely cause of the symptoms one is experiencing, a response to treatment for it needs to be seen. If one responds well to the treatment and sees their symptoms clear up or greatly reduced, a mast cell disease is given as a diagnosis. If a person doesn’t get better after trying the treatment, an adjustment in the treatment may be done or another diagnosis may be looked into.

Mast cells and women’s health

There are not very many studies on this topic. This seems to be the norm when it comes women’s health and it is unfortunate!

What researches have found out is that female sex hormones (estrogen and progesterone) may make mast cell diseases worse. This is typically the case when sex hormones are high. This may show up as having worsening asthma during parts of one’s cycle, having more severe PMS/PMDD and having a higher reaction to allergens.

Mast cells also may be found in endometrial tissues, the uterus and ovaries. Since this group of diseases cause these cells to be overreactive and/or there are too many of them, these are also areas where discomfort can happen.

Mast cells and COVID-19

There has been some buzz about a correlation between mast cell diseases and COVID-19. Some hypothesize that they may play a role in severe COVID infections and post-COVID syndrome.

The idea for post-COVID syndrome is that it is due to a hyperinflammatory response. This is why the symptoms (i.e. brain fog, fatigue, rashes, respiratory issues and more) seem to be similar to that of a mast cell disease.

It is important to note that some people who begin to grapple with mast cell issues after recovering from COVID-19, may have had it before. Their symptoms could have just gotten worse due to the infection which made things more noticeable and uncomfortable. As with all other infections though, the mast cell issues could be caused by COVID-19 in some people.

Treatments

There are a variety of different medications that can treat mast cell diseases. The medications are in different drug classes which makes them target different issues. People with mast cell diseases need more than one medication to treat the assortment of symptoms they have.

Here are some examples of treatments for mast cell diseases and what symptoms they help with:

• Benadryl, Claritin, Zyrtec or Allegra- These help with itching, flushing, sneezing, runny noses, headaches, abdominal pain, sometimes nausea and brain fog.
• Pepcid- This may help with GERD and abdominal pain.
• Singulair- This helps with asthma symptoms.
• Cromolyn sodium- This helps with GI flare ups.
• Quercetin- This supplement may help with brain fog.
• Prilosec and Nexium- These two medications are to help with GERD symptoms.
• Aspirin- This may help with brain fog and pain. It also is considered a general mast cell stabilizer (stops the cells from overresponding).
• Prednisone- This corticosteroid may help to calm the immune response down.
• Tyrosine Kinase Inhibitors (chemotherapy)- These may help in the symptoms of advanced mastocytosis.
• Adopting a low histamine diet- This kind of diet involves eating foods that are considered to be low in histamine. Some people this to be too restrictive and/or not helpful though.

It is important to talk to your doctor about the best treatment for you. Also, do some research of your own to figure out what you would even be willing to try.

Short book review

I had the distinct pleasure of reading, Mast Cells United by Amber Walker. It took a couple weeks for me to actually pick it up and starting reading it but boy when I did-I could not put it down!

I was hooked almost right away when I read the author’s story of her “abdominal attacks.” GI related issues have been my main problem for the past six years now and knowing that she got to the bottom of her flare ups-intrigued me.

So I read all the way to the end in a few days!

The detail that Amber put into her book is amazing. What you see on mast cell diseases on the internet are just summaries. This book provides even more information so that you can understand things better in regards to what may be happening in your body.

My favorite parts of the book are the sections on medications, supplements and holistic healing practices that may help in the management of mast cell diseases. The topics/information is right up my alley so I thoroughly enjoyed reading them.

Everything you could ever want to know about mast cells and mast cell diseases is probably in this book. It is just so extremely well researched and organized. I would highly recommend it for others who are looking into a mast cell disease diagnosis.

Next steps for me

When looking back on my life from a medical standpoint, I really believe that I have some degree of mast cell activation syndrome. I think that pregnancy and giving birth made it worse (I still love my son to pieces!).

The GI flare ups I get are horrific. I remember getting them going back many years but the past few years has been the worst. They involve gassiness, severe cramping, extreme nausea and bloating. Yuck!

Some days I even go into full body distress where it feels like every part is getting attacked. I will have the GI issues along with limb/joint pain, rashes, hives, tingling feet, headaches, chest pain, high heart rate, shortness of breath, back pain, ovary cramps and loose stools.

I am not going to get my hopes up too high when I treat myself as if I have a mast cell diagnosis. I am just going to see what happens. If it helps-great. If it doesn’t help-onto the next possible treatment (s).

So here is what I am going to do about this whole mast cell thing:

• I will not be seeking diagnosis because my doctor would never allow it (he doesn’t believe in it).
• I will be treating myself with some OTC treatments which include vitamin C (I will boost dosage to 2000 mg), Claritin (I will boost this to 10 mg a day) and Pepcid (40 mg a day).
• I will look into doing regular meditation and listening to binaural beats.
• I will look at my environment and diet to make any necessary changes that will reduce possible triggers.

In conclusion

The study of mast cells is interesting. Those little things can be pretty pesky!

If you are reading this and resonate with any of the symptoms I listed-make sure to look into mast cell diseases further. You deserve to feel well and live the best life possible.

Thanks for reading!

#foodallergytesting #allergytesting #antihistamine #mastcells #mastactivationsyndrome #mastcellsunited #pmddtreatment #histamine