Mast Cell Disease Day is October 20th every year. Since I have a lot more to say than one day will hold, I’m breaking the rules and declaring October MCAS Awareness Month! This year, we’ll be focusing on bringing awareness of the effects of Mast Cell Activation Syndrome on the female reproductive system. We began with my own personal history with these issues and continue the discussion below.
Continuing our discussion of the effects of mast cell activation syndrome on the female reproductive system, we now turn to the most recent research for elucidation on menstrual related complaints in women with the condition. Research points to a prevalence of mast cell activation syndrome (MCAS) in the general population, however this newly recognized group of conditions is thought to be massively underdiagnosed by leading researchers and clinicians. Are they missing a huge opportunity in gynecology to discover and properly treat unwitting sufferers of this complex condition? How does this help menstruating women who don’t have MCAS? Let’s find out.
Many of us with MCAS (including myself) like to think of MCAS primarily as a disease featuring histamine overload. It’s not unusual to hear one of us say something like “I’m allergic to my own period,” but it’s really a bit more complex. Let’s see if we can’t break it down into a language we can all understand and discuss some possible solutions while we’re at it!
In case you’ve never heard of mast cell activation syndrome, let’s do a quick review. MCAS is a mutlisystemic condition featuring chronic, inappropriate mast cell activation. Mast cells (immune modulating white blood cells which control the flux of dozens of chemicals in our bodies) begin to act erroneously, dumping excess amounts of chemical mediators, such as allergic reacting histamine, inflammation producing cytokines and significant quantities of heparin, which aids in the coagulation of blood. There are many other mediators which can be involved, but for the purpose of this discussion, they’re the most important.
During the diagnosis of certain gynecological conditions, are doctors missing MCAS (pronounced as “em-cahs”) patients by failing to recognize its menstrual related symptoms? Is medicine missing an opportunity to easily treat these symptoms? Doctors Afrin and Dempsey seem to think so, as it’s the central focus of their most recent research on the effects of antihistamines and mast cell stabilizers on dyspareunia (painful intercourse), dysfunctional uterine bleeding (DUB), and vaginitis (idiopathic inflammation of the uterus that results in discharge, itching and pain). These complaints are common and widespread among MCAS patients and the science is clear on the involvement of mast cells in the genitourinary system (the genital and urinary organs).
Like the Gastrointestinal system, the genitourinary system is a bigger target of increased mast cell activity due to its connection with the outside world. It’s within our bodies, but exposed to outside influences. Amber Walker notes in Mast Cell United that “some women with MCAD report allergic reaction with semen contact and/or allergies to condoms.” this is consistent with my own experiences and anecdotal reports I’ve heard from other MCAS patients.
Walker notes that “histamine is implicated in aspects of arousal-related sexual behavior” and tends to drive libido. Interestingly, anecdotal information indicates that female patients with MCADs may experience increased libido. However, some patients report a decrease in libido. This difference could possibly be accounted for by the influence of mast cell degranulation on the autonomic system and the vagus nerve, which is suspected to reach and interact with our reproductive organs. The influence of histamine can create neuralgia and contribute to the formation of autonomic dysfunction, such as POTS, a common comorbid condition to MCAS.
Human mast cells also have receptors for many sex hormones and they can exert a powerful influence on degranulation. Walker notes that estrogen, estradiol, luteinizing hormone and follicle-stimulating hormone all increase mast cell degranulation, while activation of progesterone and testosterone receptors have an inhibitory effect. Since these hormones vary throughout the 28 day cycle of growing the uterine lining, ovulation and then menstruation, it’s easy to see why certain periods of the menstrual cycle can increase degranulation and the symptoms of MCAS. It also explains why chemical birth control helps to attenuate some of these effects.
Furthermore, mast cell mediating prostaglandins have been implicated in premenstrual syndrome. The cramping and bloating associated by PMS may be associated with mast cell degranulation. Given how misbehaving mast cells like to go to extremes, this may account for the increased pain and bloating many women with MCAS experience.
Doctors Lawrence Afrin and Tania Dempsey feel it’s quite likely that women who suffer with premenstrual syndrome, premenstrual dysphoric disorder, dyspareunia and other common menstrual related health problems likely suffer from mast cell activation syndrome, especially if they have other classic symptoms of MCAS. These women could benefit from the treatment of their symptoms with systemic antihistamines and mast cell stabilizers, such as diphenhydramine (Benadryl), quercetin or cromolyn. Recently, they conducted a small study of women who suffer from these symptoms. Participants saw symptom improvement when using an intravaginal method of application.
These simple treatments seem by far preferable to the way my own symptoms were treated throughout my lifetime, which began with controlling my symptoms with the use of chemical birth control and finally at age 42, a total hysterectomy. My symptoms of DUB and dyspareunia were completely resolved after receiving a total hysterectomy. Total hysterectomy also helped to dramatically reduce my symptoms of PMDD, but was more of a half measure. I still struggled with mood swings around my ovulation cycle, but still experienced changes in my emotions and ability to control them. However once I started treating myself with quercetin (a mast cell mediator) and ample levels of Zyrtec (cetirizine), an antihistamine. I can’t imagine anything but a hysterectomy and the opportunity to remove all the scar tissue they found (not to mention having to separate most of my organs from each other and all that scar tissue) having fixed my dyspareunia.
Of course, we are finding out from the recent Afrin and Dempsey study that such a radical procedure is not necessary to control and treat MCAS related symptoms. I had my hysterectomy out of sheer desperation and the belief that I had endometriosis. After analyzing tissue sample after tissue sample, not a single cell of endometrial tissue was to be found among what they pulled from me, confirming my problem had never been endometriosis.
Despite giving up my uterus, mood swings around apparent cycle changes remained, even if they were greatly lessened. My bouts of recurrent vaginitis were not, at least not until I got my levels of antihistamine and mast cell mediators to an uptake level to calm these angry mast cells; a scenario consistent with Afrin and Dempsey’s findings.
Does MCAS cause Endometriosis? That is a question that doesn’t seem to yet be answered. While mast cells are implicated in the inflammation inherent in endometriosis (not to mention any other condition featuring inflammation), it is not yet clear if mast cells can actually cause endometriosis, though the question has been studies, at least by one research team.
Dennis Kirchhoff found that while he couldn’t quite answer whether mast cells could be implicated in the inception of EMS, they do play a role in the disease and targeted mast cell treatment could be beneficial to patients with EMS.
With both groups of patients benefiting from targeted mast cell treatment, it almost seems a moot point of whether one causes the other, but of course working toward prevention and possible cures demands these questions be asked and answered.
Why all the scar tissue?
You may be asking yourself at this point, if she didn’t have endometriosis, where did all that scar tissue come from? I don’t really have an answer, but of course I have a theory. My best guess is excessive retrograde menstruation, which could have been made worse by the release of heparin from my misbehaving mast cells. Heparin thins the blood and prevents clotting. Retrograde menstruation describes the phenomenon of menstrual blood flowing back into a woman’s body during menstruation and carrying with it tissue from the endometrium (uterine lining). It was a theory originally introduced to explain endometriosis, however it was later discovered that retrograde menstruation occurs in all women to varying degrees. Why endometriosis occurs in some women while not in others is still not clearly understood.
Interestingly, MCAS has also been found to cause hypercoagulability (too much clotting) and may contribute to the formation of large clots as a feature of dysfunctional uterine bleeding. Once again, I have experienced both. In my earlier years, clotting was a real issue, while as my MCAS problems grew; my blood became thinner and thinner. These things make me wonder if perhaps MCAS has disease stages or phases of some kind.
The effect of hormones on mast cell activation is well established. “Sex hormones modulate immune and inflammatory cell functions, including mast cell secretion, and are regarded as responsible for gender and menstrual cycle phase-associated differential susceptibility and severity of some autoimmune and inflammatory diseases. Chronic urticaria is approximately twice more frequent in women than in men.” (Kasperska-Zajac). It stands to reason that this natural bodily process would become heightened in women with MCAS.
It seems there are vastly more questions than answers on the subject, but one thing remains clear. MCAS can exert powerful influence on menstrual related symptoms. Until recently, these symptoms were often considered idiopathic or were attributed to endometriosis: However, based on recent research and my own experience, it is clear that these symptoms can and do exist in extremes in MCAS and may be considered symptoms of the condition.
Knowing this could help more women than those with MCAS. From these findings, it could benefit all women who experience bloating and cramping during the premenstrual portion of the cycle and exploring mast cell mediators or antihistamines with your doctor could be beneficial for all women.
Join us for our next post on MCAS and the female reproductive system as we delve into the topics of fertility and pregnancy. Does MCAS affect fertility? Is pregnancy complicated by MCAS? I hope to address these questions and more as the series continues throughout the month of October and beyond.
References and Related Resources
- Afrin, Lawrence and Dempsey, Tania. “Mast Cell Activation Syndrome (MCAS) Questions Answered.” Jul 24, 2018.
- Afrin, Lawrence and Dempsey, Tania. Taylor and Francis Online. “Successful Mast-Cell-Targeted Treatment of Chronic Dyspareunia, Vaginitis, and Dysfunctional Uterine Bleeding.” 9 Apr, 2019. doi.org/10.1080/01443615.2018.1550475. 10 Oct, 2019.
- Endometriosis Foundation of America. “Sampson’s Theory of Retrograde Menstruation.” 10 Oct. 2019.
- Kasperska-Zajac, A, et al. Journal of Dermatological Science. “Sex Hormones and Urticaria.” 16 May 2008. DOI: 10.1016/j.jdermsci.2008.04.002 10 Oct. 2019.
- Kirchhoff, Dennis, et al. Taylor & Francis Online. “Mast Cells in Endometriosis: Guilty or Innocent Bystanders?” doi.org/10.1517/14728222.2012.661415
- Walker, Amber. Kindle Direct Publishing. Mast Cells United: A Holistic Approach to Mast Cell Activation Syndrome. Mar, 2019. Pgs 159-163.
*Please note this post contains affiliate links and was updated and verified for accuracy on 11/17/19. Thank you.
If you suffer from a mast cell activation disorder (MCAD) such as mastocytosis or mast cell activation syndrome (MCAS you may benefit greatly by taking quercetin, even over cromolyn. I recently found this bioflavonoid in my search to improve my own struggle with an as yet diagnosed mast cell condition and have been very impressed with the initial results. In this post, I will discuss the properties quercetin possesses, what’s been found in laboratory testing regarding the supplement, my own experiences with the supplement and whether it might be right for you.
What is Quercetin and how does it work?
Quercetin is a flavonoid. Flavonoids are powerful antioxidant and anti-inflammatory compounds with mast cell inhibitory actions. Mast cells are immune cells critical in the pathogenesis of allergic, but also inflammatory and autoimmune diseases through release of histamine, as well as many pro-inflammatory cytokines such as IL-8 and TNF. Quercetin can effectively inhibit secretion of histamine, leukotrienes and PGD and is actually more effective than cromolyn (the only prescribed mast cell stabilizer) in inhibiting IL-8 and TNF release from LAD2 mast cells stimulated by SP. Moreover, Quercetin reduces IL-6 release from hCBMCs in a dose-dependent manner. Quercetin inhibits cytosolic calcium level increase and NF-kappa B activation. Interestingly, Quercetin is effective prophylactically, while cromolyn must be added together with the trigger or it rapidly loses its effect. In two pilot, open-label, clinical trials, Quercetin significantly decreased contact dermatitis and photosensitivity, skin conditions that do not respond to conventional treatment. In summary, Quercetin is a promising candidate as an effective mast cell inhibitor for allergic and inflammatory diseases, especially in formulations that permit more sufficient oral absorption (Weng & Zhang).
Quercetin is also a powerful anti-viral. New research on the role of quercetin in preventing viral illness was presented in February 2007 at the American College of Sports Medicine conference in Charlotte, N.C. Another study conducted at Appalachian State University in N.C. demonstrated that quercetin reduces viral illnesses and helps maintain mental performance in individuals under extreme physical stress (Needs). As an antioxidant, it prevents and cleans up cellular oxidative stress, has powerful mood enhancing properties much like an MAO-I and can help with issues such as chronic fatigue and cognitive dysfunction.
How It Helps
Once you begin taking quercetin, you’ll notice changes happening in stages. While I felt the immediate boost of quercetin’s antioxidant powers at work through added physical and mental energy, improved mood and mental clarity, it took a good 2-3 weeks before I began to notice any real improvements in my allergic symptoms. I’ve provided a week by week breakdown below.
- increased physical and mental energy from day 2
- mast cell headache stopped around day 4
- Blood pressure came up by end of week, reducing need to supplement with oral rehydration salts (ORS) daily
- Heart rate stabilized, EVEN DURING EXERCISE
- Skin grew somewhat firmer, more elastic and youthful looking and not as dry
- Eyes started focusing properly, vision became clearer
- increased nasal drainage occurred for a few days as inflammation cleared
- I began having a harder time falling asleep
- Interstitial cystitis (IC) symptoms reduced, but still having 1-2 accidents a week.
- Able to go out and eat without taking benadryl, but still wearing mask on high pollen days without payback
- Increased sense of smell and taste
- Improved mental clarity and concentration
- Sleep issues persist
- Stomach functioning better, less heartburn, pain, upset. More regular bowel movements, less abdominal discomfort
- Continued firming of the skin
- Bone pain disappeared
- Loss of light sensitivity, can open curtains wide, don’t need to dim devices anymore
- Soreness in breasts that I’ve lived with for decades disappeared
- Brain Fog continues to decline, aphasia and language problems greatly reduced, easier access to short and long term memories
- Sleep issues persist and anxiety levels are climbing
- IC/Bladder problems ceased, span between urination now 4-6 hours, vs 2-3.
- Exercise time has almost doubled. Working out 90 minutes 5x week with no payback, building muscle faster.
- Digestion seems to be running almost normally. Waking hungry, getting hungry every 4-5 hours, had to increase calories to what an average sedentary person would eat, rather than disabled.
- Starting to feel manic and triggered (PTSD symtoms) due to loss of sleep. Went off of MAO-I to see if it helps.
- Spent 5 hours on my feet in 77 degree weather!
- No longer need to supplement with ORS unless doing extremely strenuous activity or out in heat sweating all day.
- Able to go outside on low pollen day without mask, all day without too much payback (1-2 days, vs. 1-2 weeks in the past)
- No longer reacting to the heat/sun
- Still struggling somewhat with sleep and mood, but it is improving slightly. May take weeks to get old MAO-I out of system so it’s no longer competing with Quercetin, if this is the problem.
What It Hasn’t Helped
Entering week 6, I’m still having a lot of problems reacting to food, almost any kind of food. I have a very short list of what I can eat. I’ve probably complicated matters by going a little nuts with my food choices at the festival we attended on Saturday, too. My understanding is the tummy and food reactions can often be the last frontier, so I’m not surprised I’m still struggling with this and frankly, the quercetin may not be enough to completely clear things up, or may not until after pollen counts have come way down for a while. I could increase the dosage I’m on, but until I get my head around why it’s causing a flare in my anxiety/PTSD and how to address that component, I don’t really want to risk it, because I don’t enjoy inhabiting that very dark place where I’m plagued constantly by the nightmares of years of abuse, neglect and rape. It is not unlikely that I will need a combination of quercetin and cromolyn to fully address all of my symptoms no matter how much I’d prefer to take the all natural route.
There are also some diet issues that I suspect I have that may never change regardless of what medication I’m on. I suspect that I have mycotoxin allergy or sensitivity and may never be able to eat these kinds of foods and of course I have plenty of genuine allergies, fructmal (fructose malabsorption, though I don’t care for that term because it leaves out all the other carbohydrates I can’t process), and occasional slow gastric emptying, which is a pretty good indication that I might have gastroparesis, so it’s likely there’s no supplement or drug out there that’s going to give me back a normal diet and perfectly functioning digestion.
How to Take Quercetin
Quercetin is best taken with Vitamin C or Bromelain, which helps with absorption. The quercetin complex I am taking has both, along with some calcium, rutin and citrus bioflavonoid. Recommended dosage is 500-2000mg per day, divided up into 2-4 doses. For example, a daily dose of 500mg may be taken as 125mg four times a day (Mast Attack). I am currently taking 500mg twice a day, once in the morning and once in the afternoon, as I’m trying to take it earlier in the day to try to avoid the sleep issues I am having.
My list doesn’t cover subluxations and dislocations because while I haven’t had any of the doozies that I usually get during flares, I still get them everyday. Being that I have EDS, this is simply how life is and more than likely no supplement will ever change that. For this reason, I couldn’t possibly address this the way someone with a mast cell condition alone could.
While the sleep issues are somewhat problematic because they trigger my anxiety/PTSD, these symptoms are so far still pretty mild, if a bit concerning if I can’t get them under control. I will come back to update you about it (feel free to ask in the comments, if I have not as brain fog still sometimes wins out). It’s also the only negative in a sea of positives. The level of energy I feel from taking quercetin rivals the energy I felt before I became ill and got my first diagnosis of fibromyalgia, back when I was working out almost every day and was on weight watchers back in 2007 and my bowels haven’t run this smoothly since before I can remember, so long as I stick to a very strict diet of about 20 items. I was amazed that it improved my skin’s elasticity, given that I’m a zebra, and it even shrank the size of my nose (I guess it was always inflamed and I didn’t even realize it). The return of a closer to normal return of cognitive function is an amazing blessing, providing me with much more time to work, create and interact with others on a higher level than I’ve been able to in years. The reduction in pain due to inflammation and my IC is no joke, either.
I feel freer to move and enjoy life and even though I’m struggling some with the symptoms of PTSD, my overall outlook and disposition are much closer to the “real me.” I feel like it may give me a real chance at having a life back and definitely confirms for me just how much mast cell was contributing to my overall disability. I’m really looking forward to my appointment with the mast cell specialist and getting further assistance with this issue to see how we can further improve upon these changes. I definitely recommend quercetin for mast cell conditions and even for use in EDS, POTS, autoimmune and other inflammatory diseases, given the powerful reduction in cytokine production, pain relief, boost to cognitive function and immune boost it provides.
Not a lot had been studied regarding interactions with other medications, however there are a lot of theories about how quercetin might interact with a wide swath of medications. WebMD does a decent job of listing them, so I leave this link for you to explore the list: Quercetin Interactions. As always, it’s very important that you take all this information to your doctor, so they can help you decide whether or not it’s worth giving it a shot. While I do take many of the meds listed, my doctor and I decided it was indeed worth the risk and I have been taking quercetin for over a year with no change to my drugs or their side effects, but we’re all very individual. Please, speak with your doctor before deciding to take quercetin and provide them with all the information you can find so they can help you make the best decision possible.
Five Month Update
It’s early December now and I’m happy to report that quercetin has indeed continued to work its magic. In just the last few weeks, I’ve retested a few things and I’m happy to have them back in my life, such as coconut oil and bananas. I no longer have to fight with break through bouts of heartburn and I’m having far fewer mystery reactions. I can also leave the house without needing to recuperate for days, which is a major win. I’ve even been able to get away with eating out without any serious repercussions, but I’m trying to keep this activity to a minimum to allow my body to heal. What I’m hearing from other patients is that if I ever want a chance at a semi-normal baseline again, this extreme deprivation gives me the best chance. So far, it seems to be working. So I’m going to keep up with the low histamine diet and mask and keep taking my quercetin and other MCAS meds without attempting to step down, for somewhere in the neighborhood of 1-2 years. I will continue to report in, but I wanted to let you know it is working and I continues to make headway in this battle with MCAS.
Regarding my flare in PTSD and anxiety symptoms; if quercetin was responsible for the issues I was initially having dropping my MAO-I did the trick. I was only on 15 mg mirtazipine, about enough to help me sleep and provide a very slight, anti-depressant and anti-anxiety effect, but I suppose combined with the quercetin, it could have been enough to throw things out of wack which my ultra-sensitivity to psych meds. I haven’t heard anyone else complain about this that wasn’t on an MAO-I.
Finally, I switched to taking quercetin in pure powder form. I was looking to save money, but I actually think I ended up boosting its effectiveness: Because it’s not water soluble, I started mixing it in healthy fats to consume it, and I suspect this is helping my body to absorb it better. I put it on a biscuit with some grass fed butter, toss it in with my quinoa breakfast bowl with the olive oil, I put it in my coffee with some almond milk, or in my cereal… you get the picture.
Looking for other effective treatments for MCAS, MCAD or mastocytosis? Check out my comprehensive guide: MCAD: Medications and Treatments
Eight Month Update
I’m thrilled to announce I’m finally gaining back some foods! I can now eat bananas, use and eat coconut products, eggs, and a handful of other things that were causing pretty serious reactions. I also took a very unintentional 2 week break from quercetin (I got a counterfeit bottle) and was amazed by how well I survived it. I had issues, but no severe reactions to anything at all! This strategy seems to be working and I’m very hopeful.
Tried and True Recommendations
Getting a bit fed up with counterfeit products and looking for ways to get paid for the valuable information I provide on the Zebra Pit without actually hitting up the people I serve, I’ve decided to join the Amazon Associates program so I can list the products I’ve tried that have worked well for me. Below are my Tried and True Recommendations for Quercetin. I will add on as I try new things, as it seems inevitable that my regular brands run out and I have to go back to the drawing board. If you use the links below, I will receive a modest comission for the sale and you will receive my undying gratitude for helping to keep the Zebra Pit going.
Solgar Quercetin Complex with Ester-C® Plus, Unique Synergistic Formulat Immune Health Support, 100 Vegetable Capsules is a high quality quercetin complex that offers quick, effective relief. It comes with a number of other mast cell mediators and substances that are excellent fighters of histamine and inflammation, such as Vitamin C, Rutin, Bromelain, and rose hips. I tolerate it just fine, but others may have problems with one or more of these added ingredients, so I usually recommend you start with an unadulterated quercetin powder or tablet instead, which I have listed below. If you already take some or most of these other ingredients, however, it’s an affordable way to get them all in in just2 easy to swallow capsules.
Quercetin 500mg 200 Capsules – NutrissenceFor the price, this quercetin was surprisingly effective. I only took one bottle, but the results were consistent enough to prove that the quality was there! Nutrissence offers a genuine quecetin capsule that’s free of additives for an affordable price. Worth side-stepping the hassle of dealing with powders? Quite Possibly! Let’s just hope it stays in stock!
Maximum Strength Pure Quercetin Dihydrate Powder, 100 gram, Powerfully Supports Energy, Immune Health and Antioxidant, Non-GMO and Vegan Friendly This bulk powder from Micro Ingredients is my standard go-to, as you can literally see and taste the purity and freshness. Buying the bulk powder is also one of the most affordable ways I’ve found to source quercetin. The only draw back? Quercetin is a slightly oily, chalky powder that’s a bright yellow, so it can be a bit messy. It’s oil soluble, though so you can mix it into any fat containing food to help your body absorb it better and it has no detectable flavor or odor.
BulkSupplements Quercetin Dihydrate Powder (100 grams) is another affordable powder that’s just as good as the one from Micro Ingredients. Since places frequently run out, it can’t hurt to have too many vetted brands and Bulk Supplements has never let me down with their quercetin or other powders!
Mast Cell Activation Disorders can be quite complex to treat. Able to attack any system in the body, there’s a wide range of symptoms one must account for when treating these disorders. In my previous posts, we discussed how eating a low histamine diet can help you avoid flares, along with other ways to avoid triggers and prevent flares. The final components to achieving the best health possible with MCAS are therapeutic and rescue medications. Given the complexity of the disease, the list of medications used to treat the disease is not a short one.
I will be covering a wide range of drugs, available by prescription and OTC. Try as one might, a MCAD usually requires the assistance of a physician to treat, given the complexity of these disorders and the need for specific medications at doses that are usually not available without a prescription (and shouldn’t be taken at higher doses without a physician’s supervision). Dr. Afrin and his peers state in a 2016 article for the NIH that “Recent mutational studies revealed that each patient has an individual pattern of genetic and epigenetic alterations which may affect the intracellular signal transduction pathways and receptive sites involved in sensory perception. As a consequence, mediator formation and release as well as inhibition of apoptosis and/or increase in proliferation are determined by individual genetic and epigenetic conditions and represent potential targets for therapy. Hence, there is need of highly personalized therapy for the disease.”
Two doses should be carried by all patients with a mast cell disorder at all times, even if previous anaphylaxis has not occurred (though frankly my immunologist disagrees with this statement, so don’t be surprised if yours does, too). Both the patient and family members/caregivers should be trained on administering epinephrine!
To see a video on how to inject the EpiPen®, click here.
There are a wide variety of antihistamines available. Unsurprisingly, many people with MCAD find that there are one or two in which they react, so it’s good to have options! Sometimes what you’re reacting to are the additives, such as dyes or preservatives. Try additive-free options to see if the problem clears up. These options can be a little more expensive, but worth a few more pennies if you find one histamine works better for you over another without the fillers.
H1 antihistamines: Benadryl (diphenhydramine), Atarax (hydroxyzine), Tavist (Clemastine), Allergra* (Fexofenadine), Claritin* (Loratidine), Xyzal* (levocetirizine), Zaditor (Ketotifen) and Zyrtec* (cetirizine). In technical terms, H1’s block mutual activation of mast cells via H1-histamine receptors. They antagonize H1-histamine receptor-mediated symptoms (Afrin, et al.). In laymen’s terms, they help alleviate allergic symptoms such as itching, abdominal pain, flushing, headaches and brain fog. Unfortunately, long term use of antihistamines is also associated with cognitive impairment (TMS), something people with MCAD already struggle with, so the use of an antioxidant to help counteract these problems is really helpful.
While generation 2 antihistamines (denoted by an asterisk*) are less likely to cause drowsiness and usually are longer acting, first generation antihistamines are faster acting and better in emergency situations. However, the preference is to treat MCAD with second and third generation antihistamines (Afrin, et al.) and use first generation antihistamines as rescue, or “as-needed” medications when second and third generation antihistamines aren’t enough.
For some patients facing serious and constant anaphylactoid reactions and dysautonomic states, sometimes continuous diphenhydramine infusion is used. “In a small series of ten MCAS patients suffering almost continuous anaphylactoid/dysautonomic flares, continuous diphenhydramine infusion at 10–14.5 mg/h appeared effective in most patients at dramatically reducing flare rates and appeared safely sustainable at stable dosing for at least 21 months (Afrin 2015). Stabilization has enabled successful trials of other helpful medications, but no patient has yet successfully stopped continuous diphenhydramine infusion. (Afrin, et al.)”
Ketotifen also has mast cell stabilizing properties. Mast cell stabilizers prevent the release of mediators. The oral formulation is not available in the US, and has to be obtained from overseas or compounded, if possible. Dosing is usually started at 1mg twice daily and increased in increments of 1mg twice daily until desired effects are noted and balanced with an acceptable side effect profile. As described by Afrin, single dosing is usually 6mg or less, and can be taken up to four times a day, according to Mast Attack. Ketotifen eye drops are available in the U.S. and can help with ocular symptoms such as dry, itchy, watery, swollen, irritated eyes. My eyes were so degraded by histamine; they would no longer focus properly, getting stuck frequently on one focal point and causing blurred vision. So long as I remember to apply my ketotifen drops twice a day, they operate normally and I can even wear contacts again.
H2 antihistamines: Work much the same way as H1’s and are used to treat gastrointestinal symptoms such as reflux, stomach pain, diarrhea, itching, flushing, headaches and brain fog. They include Zantac (Ranitidine), Axid (Nizatidine), Pepsid (Fomotidine), and Tagament (Cimetidine), (TMS).
If H2 antihistamines aren’t enough to combat GERD (heart burn that occurs 2 or more times per week), a proton-pump inhibitor like Nexium can be added, though I’d use caution with this if you have a stomach condition that causes low motility such as gastroparesis. Proton-pump inhibitors can slow motility further, as can anti-histamines, which usually aren’t a negotiable medication for masties. Instead, try addressing the problem with diet, which will be covered in part 3 of this series, or other natural remedies which aren’t harmful to motility, covered in Natural Treatments for Gastroparesis Part Two.
Stinging Nettle Tea: Despite the reputation of its scratchy leaves, stinging nettle has surprising antihistamine properties and makes a nice, mild tea. Drunk daily, it helps to mediate allergic respiratory and gastric symptoms and can even alleviate the symptoms interstitial cystitis, a common condition for masties.
Mast Cell Stabilizers
Mast cell stabilizers help to regulate the release of chemicals from mast cells, reducing symptoms overall. Unlike antihistamines, stabilizers take time to work, often needing weeks or even months before seeing significant improvement of symptoms. The first significant improvements I noted when taking the naturally occurring mast cell stabilizer quercetin was in my energy levels and brain fog. It took time before seeing other symptoms begin to change (see my full account here). My understanding is that this is common with all mast cell stabilizers. It can take 4 months or more before knowing how well they may help.
Cromolyn: The most well known mast cell stabilizer is noted to block mast cell receptor 35, which is increased when IgE is present. Cromolyn has extremely poor absorption, with 98% of oral doses being excreted unchanged. When inhaled, absorption increases to around 5%. Oral dosing is from 100-200mg 2-4 times daily. When nebulized, dosing is usually 20mg 2-4 times daily. Of note, patients usually experience a resurgence of symptoms when first starting the medication that may last 3-4 days (MA).
Quercetin: A natural bioflavinoid, quercetin can effectively inhibit secretion of histamine, leukotrienes and prostaglandins and is actually more effective than cromolyn (the only prescribed mast cell stabilizer) in inhibiting IL-8 and TNF release from LAD2 mast cells stimulated by SP. Moreover, Quercetin reduces IL-6 release from hCBMCs in a dose-dependent manner. Quercetin inhibits cytosolic calcium level increase and NF-kappa B activation. Interestingly, Quercetin is effective prophylactically, while cromolyn must be added together with the trigger or it rapidly loses its effect. In two pilot, open-label, clinical trials, Quercetin significantly decreased contact dermatitis and photosensitivity, skin conditions that do not respond to conventional treatment (Quercetin and MCADs). It also proved very effective in treating my symptoms of interstitial cystitis, firming up my skin and lessening the frequency of my subluxations.
Vitamin C: This vitamin works in two ways to help MCAD patients. It causes increased degradation of histamine while also decreasing histamine formation by inhibition of histidine decarboxylase (Afrin, et al.).
Pentosan: This medication is commonly used in interstitial cystitis, a mast cell disorder that affects the genitourinary tract. Though Pentosan seems to be most effective in the GU tract, some patients report decrease in other symptoms while on this medication (MA).
Leukotriene inhibitors: help with respiratory symptoms and overall mast cell stability. Singulair (Montelukast) is the most common Leutotriene (MA).
Third and Fourth Line Medications
Third and Fourth Line Medications come with a variety of risks to patients and are so named because they are only utilized when outcomes are poor when utilizing first and second line medications traditionally used to treat a condition.
Aspirin therapy (under direct supervision of a physician): A useful tool if prostaglandins are elevated. Helps with flushing, brain fog and bone pain, if aspirin is tolerated. In MCAS patients for whom aspirin is inappropriate (such as those with low platelets or decreased kidney function), COX2 inhibitors like Celebrex are sometimes used (MA).
Acute and chronic immunosuppressive therapies: Are considered second and third line medications sometimes used when autoimmune symptoms are present or no other medications have been effective. These therapies include Glucocorticoids, azathioprine, methotrexate, ciclosporine, hydroxyurea, and tamoxifen. The effectiveness of these therapies can be moderate to having no effect at all (Afrin, et al.).
Omaluzimab (Xolair): An anti-IgE monoclonal antibody, it is not entirely clear why this medication works for some and requires more study. It has an acceptable risk-benefit profile and should be used for 3-4 months before determining effectiveness (Afrin, et al.).
Tyrosine Kinase Inhibitors: Traditionally chemotherapy drugs, imatinib and dasatinib have been used as a last resort in MCAS patients. Patients on these medications require careful monitoring for pulmonary and renal issues. All chemo patients are at increased risk of infection (MA).
I recently received this information from a researcher on twitter and wanted to include it here. Normally, I’d include the information and not the full graphic, but I’ve decided that all the information on here is really quite useful. I do want to point out a couple of things. First, not under the cannabinoid receptor agonists that it isn’t just CBD that’s essential to treating mast cell activation, but several components found in the marijuana plant. I point this out, because a lot of people use CBD oil and miss all the other great benefits of marijuana. You may be doing yourself a major disservice if you’re using a CBD oil versus an MMJ oil or smoking or vaping the whole bud and you have an MCAD.
I also find it extremely interesting that the reason that tricyclic antidepressants work is because they reduce mast cell activity. They’re used heavily in ME/CFS and fibromyalgia, which are not considered to be MCAD, but should they?
There are many more drugs which can be taken to treat specific symptoms and of course many for comorbid conditions, but these are the most important drugs to know about when attempting to address the overall symptoms and mechanisms behind these disorders. Treat the problem of misbehaving mast cells and you will need to treat fewer symptoms overall. The most important medications in the arsenal against misbehaving mast cells are mast cell mediators and H1 and H2 antihistamines. Other medications are symptom specific and should be used when appropriate to achieve the best results. Be sure to work with a qualified specialist to help you decide which are best for you and at what dose.
September is Interstitial Cystitis month and before the month gets away from us completely, I wanted to talk about this little known syndrome that was my constant companion for the last several years. While the mechanisms behind IC aren’t always clear, it is becoming widely considered to be the work of misbehaving mast cells, as IC is frequently a comorbid condition to all known mast cell activation disorders.
IC is also among the conditions that were found to be driven by duplicate tryptase genes in a familial study sponsored by the NIH, now known as hereditary alpha tryptasemia syndrome (HATS). With ever mounting evidence that HATS is a mast cell activation disorder in and of itself, it will be interesting to see what the future classification of this syndrome looks like.
The current estimate is that 1 to 4 million men and 3 to 8 million women have symptoms of IC. Interstitial Cystitis is marked by bladder pain and irritation, urgency and the need to urinate frequently. Basically, it feels like having a Urinary tract infection 24/7. For most sufferers, it begins with the need to urinate somewhat more frequently, which can lead to feelings of urgency. As this urgency builds, it can become painful. Sometimes this urgency never ceases, and the bladder signals the need to urinate as soon as it is emptied (Urology Care).
I’m not sure when I developed interstitial cystitis, but I know it’s been over a decade since I first noticed that my trips to the bathroom were becoming at first more frequent and then more urgent, interfering with my job and other aspects of my life. Then a few years ago, I developed what I thought was a bladder infection, but when I got tested at the doctor’s office, I was told it was negative. When I asked what I was supposed to do about the burning pain in my bladder, I got the usual shrug which indicated that I should just live with it like I do everything else. The pain never really went away after that. It just got duller or sharper.
I didn’t realize how dangerous it could be to have a bladder in constant distress until I started urinating blood. Apparently my next bladder infection went unnoticed and quickly became a serious kidney infection. After that, the bladder irritation was so severe that it felt like I had to pee as soon as I lifted my bottom from the toilet. I lived in constant agony. When I finally found a new GP, I asked for a referral to a Urogynecologist to get to the bottom of my pee-pee problems.
Since there was some weakness in my pelvic floor, the urogynecologist wanted to start with pelvic floor therapy and prescribed oxybutynin for me to help get the bladder spasms under control during my rehabilitation. In two days, the angry hive of bees in my bladder fell silent. I was in therapy for three months. My pelvic floor showed marked improvement in testing and I was thrilled to see great improvements in the bedroom and the bathroom. As soon as I went off of the medication, however, the pain and burning returned. So did the incontinence in some instances. It was as if I’d changed nothing.
By this time, I had strongly begun to suspect the culprit was MCAS and IC, so I made an appointment with an immunologist and began to read up on these conditions. The low histamine diet is a popular intervention for IC and MCAS, so it was a first line defense for me. I also decided to try quercetin, not only for my IC, but for a multitude of other symptoms I’d begun suffering with since the onset of spring and pollen. Within two weeks of starting quercetin, my IC pain and incontinence were completely resolved, almost as if they had never existed in the first place.
More than likely my interstitial cystitis is here to stay, so I’m incredibly grateful to have found some effective treatments for it so I don’t have to think too much about it anymore. For some, the pain of interstitial cystitis is only part time instead of the constant onslaught I experience. Regardless, it is a disabling syndrome that causes interruptions in sleep, work, relationships, and leading a healthy life. We have to do a better job of getting to a diagnosis earlier and getting relief for patients sooner, even if that means just trying out a mast cell stabilizer to see if it works. I’m sure someone will come tell me why that’s a phenomenally bad idea, but right now, I fail to see why once infection has been ruled out. After all, I’m not sure I would even have this diagnosis yet if we didn’t know what effectively took care of it and what didn’t. That’s my two cents. Take it with all the salt you’d like!
In March, I started writing a piece on my newfound love and respect for long hair and what it symbolizes for me. Since then, I’ve entered into a long term flare that forced me to recognize that all the little allergic reactions I was having to various things was having a much bigger impact than I wanted to admit. It was time to change my ways. Since I react to hair dye, this meant giving it up.
There are only a few ways one can choose to go gray: You can let your roots grow out and live with the bag lady look until it grows out. You can spent $500 at a salon getting your natural colors blended through your dyed hair in a mutli-dye process, returning 2-3 times more for touch ups. Or you can shave your head and start over entirely. I chose to shave my head, as I can neither afford to spend a small fortune on hair services at a salon living on disability, nor should I put myself through additional exposures. Shaving my head was not an easy decision, despite it being the only real option.
To better understand what it cost, I wanted to share what I started working on in March, but never shared. It highlights the complexity of hair in society and the personal reasons why growing my hair out was so meaningful to me. For those who read this blog regularly, you won’t be surprised to know it has something to do with overcoming an old trigger.
Here’s what I wrote in March
I’ve been thinking a lot about my hair lately. It’s always been a complex subject for me. Hair is one of those things you may think you don’t pay any attention to, but you’d be kidding yourself. Hair is a highly political thing. The way we choose to wear our hair signals much to other people, whether we choose to believe it or not. In the African American community, this is no secret. While African American and Indigenous American hair has layers of complexity tied to history and heritage that are unique to those cultures, all hair, how we arrange and cut it, is used as a tool of style, of conformity or rebellion, of cliques and individuality, and it may signal a return to one’s roots and heritage or a desire to be modern or even radical.
As a girl, I grew my hair out and permed it regularly. In the 1980’s, this is what we did. Only when I hit my teen years and my desire to reflect on the outside how I felt on the inside grew, I began playing with various cuts and colors, from black streaks in my blondish-brown hair to shaving it into a Mohawk to dying it radical shades of red and purple. Unlike now, dyeing your hair in rainbow colors meant something. It was a cultural and political statement. Then I met my first husband, who insisted that my hair match the status quo and once we were married, put a moratorium on all haircuts. By the time I left his controlling, abusive ass, I had hair that touched my ass. The day after I left him, I had my hair cut to a chin length bob.
Despite my Native American roots where long hair is a long held tradition for both sexes, I came to detest long hair. On a woman, it came to symbolize not just conformity, but oppression and misogyny. I went back to experimenting with radical cuts that were asymmetrical and even shaved my head and frequently wore Chelsea or Pixie cuts.
It wasn’t until the mid 2000’s that I allowed my hair to grow to my shoulders again, but even then I felt out of place and ended up cutting it after a short time. It wasn’t until it occurred to me that I’d allowed my first husband, who had so thoroughly controlled my every move the year we were married, to continue controlling me by allowing him to shape how I felt about my own hair, that I was able to let go of my preconceived notions about what it meant to grow out my own hair.
The desire to grow my hair out came about because of other controlling factors in my life; my health. There’s the idea that short hair is easier to care for, but in many ways, it’s not. It requires being washed sooner because it gets dirtier sooner and usually requires more product to style. It also needs styled every day, as the bed head is daily and it is INSANE. I wanted to grow my hair out because I suspected it would make my life easier.
I also went through a period where I was losing my hair because of vitamin and mineral deficiencies, not to mention the copious myofascial adhesions all over my head from joint dysfunction in my TMJ and occipital regions. Once I began correcting those issues, I started to experience a lot of new hair growth that produced beautiful, healthy hair. I wanted to grow it out and see what it looked like. I also knew it would save us money, as short hair requires regular haircuts, while you can go much longer between cuts when you have long hair.
Given these factors, growing my hair out felt like a triumph and a necessity, but I had to overcome my old bad tapes about what hair symbolized. I wasn’t sure I’d come that far, but I had to try it to see. In part, the act of growing it out exclusively for me helped to heal some of that old damage. It wasn’t for a mate or to attract a mate or because someone told me I should do it. It was solely because I felt it was the best thing to do for me. My husband, who lived through my constant nervousness and insecurity about my shoulder length hair in the mid 2000’s, remains carefully detached and silent about my hair. I don’t know if this is because he fears I’ll cut it if he expresses pleasure in it or if he really doesn’t care, but it works, even though sometimes I crave his input and occasionally wonder if he dislikes it.
Somewhere along the way, I realized that growing out my hair actually helped me to take back more of the power that he had stripped from me so long ago. Femininity is thought of as inherently weak, but women know this is a lie constructed to control and cage us. Our strength has nothing to do with the length of our hair or the color on our cheeks and eyelids. I thought I’d accepted and understood this, but I hadn’t really fully internalized it until I adopted the practice of wearing my own hair long again.
Now, as my hair stretches toward the middle of my back, I look in the mirror and sometimes remember the young woman with hair down to her ass and the powerlessness she was steeped in. I still cry for her sometimes, but she is no longer me, no matter how much we look alike. Nearly three decades later, I may possess a frailty of body that young woman would have had a hell of a time swallowing, but I also possess wells of inner strength she never knew existed.
I also see more clearly my Native American roots, which has always been a distinct point of pride for me. I always loved listening to my father talk about his Cherokee grandmother’s long hair, still solidly black long after her face grew withered with age. It probably doesn’t make a whole lot of sense to others, but it somehow makes me feel a little closer to the culture for which I’ve always craved being apart. Our hair was one of the first things settlers took from us when attempting conversion. I may be more white than indigenous in both how I was raised and in genetic makeup, but in my overall values, I am purely indigenous.
Shaving My Head
It’s amazing to think something we grow naturally can mean so much, but it does. That MCAD robbed me of my long, beautiful hair is a bitter pill that I’ve been trying to swallow since I shaved it off and shipped it out to be made into a wig for someone else on the first week of June. Every time I look in the mirror, I see a different person. She is nearly bald and looks like she has mange in bright lighting, as the purely silver portions of her hair disappear in reflected light. Once it grows out, it still won’t be the same, as it is now dark gray in some sections and silver in others instead of the dark brown I am used to. I have aged at least 10 years overnight, my smooth Ehlers-Danlos face an odd juxtaposition to my melanin depleted hair.
It’s not really the effect of aging that bothers me. My plan was to quit dyeing my hair around age 50 and I’m only 4 years shy of that goal. I know it’s not cool to admit in the age of gray hair acceptance that seems to be sweeping the nation, but there’s a sea of difference between me and those other women, the sea of Choice. I loved my shaved head when I chose to do it. Being forced to do it because of my health, not so much.
My Facebook friends and my partner were all very cool about it, of course. They showered me with compliments, assured me that I looked even better with a shaved head than I did with long hair. I suppose I needed that support. I realize now that I’d dissociated just to deal with the act of cutting it off, even though I gave myself weeks to prepare. They told me to wear it with pride, and I assured them I would, as I’ve had the cut before and that didn’t really bother me. But it did bother me and still does. It bothers me a great deal that my hair was gone and so many people were saying they didn’t even like my long hair when I had loved it. Do I believe them? Not really. It’s hard to internalize any truth that doesn’t feel genuine to you, at least not for any length of time.
After that, I kept my opinions about my hair to myself and suffered in silence. I even decided not to post about it. The thing is, these feelings have stuck with me. The inch of growth I’ve seen over the last six weeks has only highlighted how painful the next two years will be. I try to look forward to all the different styles I can choose in the meantime, but the fact is that I dread the portion of the growing out process where it’s long enough to tickle and annoy my face, but not long enough to put up and I worry I won’t be able to get through it again, given the sensitivity of my skin.
I bought hair chalk to play with, hoping that it will help me feel more amicable toward my hair. My natural hair color works great for it and I love to play. But when I go to play with my hair or see a new updo I’d really like to try and it hits me that my hair is gone, things like hair chalk is little consolation. I’d rather be using the $100’s in hair supplies I have for my long hair. Instead, all the curling irons, straighteners, accessories and products will sit and rot while it slowly grows.
I have every intention of growing my hair long again, but the reality is you can never go back home. Will I even like it long now that it’s salt and pepper gray? Will it behave the same being completely natural or will the wiry curly bits finally have their way? Will I look more like the Crypt Keeper than the Lilly Tomlin I’d love to look like?
In the big picture my hair is really just a tiny thing I’ve lost to my illness. It pales in comparison to my severely restricted diet, losing my career, being trapped in the house for everything but necessity and so many other things. It may never be the same, but it will grow back and maybe I will love it even more, with its pretty silver. At this point, I’m not yet prepared to embrace it. It represents yet one more thing chronic illness has robbed me of in a long list that’s been rapidly accumulating lately thanks to my MCAD and while I have to take it, that doesn’t mean I have to be happy about it.