If you’ve ever spent time reading about allergies, you might have come across people talking about Mast Cell Activation Syndrome (MCAS). People with Mast Cell Activation Syndrome often struggle just to obtain a diagnosis – due to the complexity of the disease and the lack of awareness within the mainstream medical community, patients can go months, if not several years, without relief for their illness.
I’ve written extensively about MCAS, including its links to other conditions like Ehlers-Danlos Syndrome and toxic mold exposure. And while we’ve certainly come a long way in understanding this barely discussed disease, it remains a frustrating condition with no definitive cause or treatment.
But recent research indicates the emergence of a new therapeutic target for MCAS – toll-like receptors. Here, we’ll discuss how toll-receptors contribute to MCAS as well as the various treatment methods for this disease.
Mast Cells in Innate and Adaptive Immunity
Your immune system has two main branches of response: innate and adaptive immunity.
Innate immunity is a rapid, nonspecific response system that is your first line of defense against invaders. Think cough reflex, your skin, stomach acid, or mucus. All of these are designed to actively clear or eliminate pathogens.
The second response is called adaptive immunity. This is a slower but precisely targeted response mediated by lymphocytes called B and T cells. Adaptive immunity develops over a period of time, but results in the generation of effector cells. Some of these effector cells persist after the infection and form the basis of lifelong immunological memory of the invading pathogen. Commonly, people think of these as the antibodies that are created after we are exposed to an illness for the first time.
The two response systems were once considered separate, with adaptive immunity thought of as more sophisticated and potent of the two. However, researchers are noticing they are extensively interdependent – and one of the key players in this crosstalk is a class of proteins called toll-like receptors.
What Are Toll-Like Receptors?
If mast cells can be thought of as peacekeepers (like our soldiers and police), then toll-like receptors (TLRs) are likely the equivalent of a smart home security system. Similar to how today’s security systems are packed with sensors that alert you to intruders as well as natural disasters, TLRs recognize foreign invaders in your body and send out signals that activate mast cells.
TLRs accomplish this feat by detecting and binding to structurally-conserved molecules unique to foreign microbes, called pathogen-associated molecular patterns (PAMPs). Essentially, TLRs latch on to PAMPs to call attention to them.
These PAMPs are found among many microbes, and include:
- Bacterial lipopolysaccharide (LPS) – A toxin found on membranes of gram-negative bacteria.
- Lipopeptides – Structurally-diverse metabolites produced by bacteria and fungi, helps them during colonization of new habitats and during formation of biofilms.
- Lipoteichoic acid – Cell wall component of gram-positive bacteria that plays important roles in infection and inflammation.
- Peptidoglycan – A bacterial cell wall component.
- Bacterial flagellin – A globular protein that is a significant contributor to bacterial invasion, and has also emerged as a potent immune activator.
Most microorganisms – viruses, fungi, bacteria, and protozoa – express PAMPs, which means TLRs are able to sense just about any infection we might encounter. This is a valuable aspect of our immune systems because backup sensors don’t provide sufficient protections against most infections when TLRs are absent.
Let’s take a look at how toll-like receptors help your body fight infections.
Toll-Like Receptors: The Link Between Innate and Adaptive Immunity
Mast cells express multiple classes of pattern-recognition receptors (PRRs), including TLRs. Most people’s mast cells express TLRs 1–10, although there have been variations seen in studies.
Upon binding to PAMPs, all known human TLRs except TLR3 activate downstream signaling. This results in cascading reactions where mast cells mount an immune response. Mast cells can participate in direct defense against the pathogen in two ways: phagocytosis and reactive oxygen species (ROS) production.
Mast cells can also produce antimicrobial peptides or extracellular traps to kill organisms. However, due to the relatively small number of mast cells, indirect effects of coordinating host innate and adaptive immune responses may be more important.
In the indirect method, mast cells initially release small sacs called granules, which contain inflammatory mediators like histamine. These mediators can increase blood flow to the site of infection or enhance epithelial cell mucus production which can physically expel the pathogen. This is followed by the secretion of cytokines, chemokines, and lipid mediators, initiating the process of inflammation.
The secretion of chemokines and cytokines activate the T cells and B cells of the adaptive immune system. Mast-cell derived cytokines and chemokines enhance the migration of dendritic cells to the site of infection, where they ingest the pathogen. This is the start of the adaptive immune response.
In other words, TLRs act as a link between your innate and adaptive immunity.
Toll-Like Receptors and Mast Cell Activation Syndrome
Chronic exposure to environmental pathogens like toxic mold can trigger the activation of TLRs, which activates mast cells that start the inflammatory process. Without removal of the trigger, mast cells can become overactive in some individuals, leading to the development of mast cell activation syndrome (MCAS).
The chronic inflammation that results from this vicious cycle could explain some of the symptoms we see often in patients with MCAS, such as brain fog, fatigue, skin rashes/hives, and swelling/edema.
9 Treatments for Mast Cell Activation Syndrome
While there is no cure for MCAS there are a number of tools you can put into place. Which work best differ from person to person, so it’s best to experiment.
Many are able to gain control of their MCAS with trial and error. Identifying and avoiding triggers that cause MCAS to flare up is of utmost importance. People with a non-aggressive form of MCAS usually see improvements within the first four weeks of treatment.
Here are some treatment options I recommend for patients with MCAS. If you know an environmental toxin is your trigger, then some of these suggestions might not apply to you.
1. Eat a Low-Histamine Diet
First things first, you need to get your histamine levels under control. One way to do this is by doing a “low-histamine diet,” which is an elimination diet with the goal of reducing the histamine from the foods and beverages you consume.
For my patients, I suggest keeping a daily health journal, where they can jot down all the specific foods they ate along with symptoms as they appear. If you’re interested in doing a health journal, It’s best to make these notes in chronological order, so you can identify any patterns and deduce the source of your symptoms.
Now, you’re probably wondering: Which foods are approved for a low-histamine diet?
There’s no one list that serves as a go-to reference when it comes to low-histamine diets. I list general food rules for patients with MCAS in my article, Mast Cell Activation Syndrome (MCAS): When Histamine Goes Haywire.
For more detailed lists, I recommend The Histamine and Tyramine Restricted Diet by Dr. Janice Joneja or the Food Compatibility List from the Swiss Interest Group for Histamine Intolerance.
Note that these lists should only serve as a foundational guideline. There is no guarantee that you will see benefits or that all of the “allowed” foods will not trigger your MCAS symptoms because you have your own list of sensitivities. What makes one person sick may not affect you in any way, so the best thing you can do is to track your own responses as best as possible.
To avoid the risk of malnutrition, confusion, or overwhelm, you may want to seek the help of a registered dietician or a physician who is familiar with treating MCAS. It’ll take some experimentation and a lot of patience, but a low-histamine diet could help you understand and identify some patterns in your sensitivities.
As someone who’s had to work through my own personal food sensitivities, I promise taking the time to get to the bottom of this is worth it. Your health and wellbeing are worth it!
2. Use a DAO Enzyme Supplement
Diamine oxidase (DAO) is the main enzyme responsible for degrading histamine. However, in patients with DAO deficiency, this degradation activity is impaired, leaving histamine to run amok. The resulting symptoms are those we often associate with an allergic reaction or MCAS.
That’s where DAO supplements come in.
Similar to how lactase enzyme supplements relieve symptoms of lactose intolerance by raising lactase levels, DAO supplements increase the DAO levels in the digestive tract. By reducing the level of histamine entering the bloodstream, the total level of histamine in the body also decreases. This can provide some people with symptom relief.
There are a number of DAO supplements available over the counter, but be careful – ordering from Amazon may be convenient, but it’s also where fake and/or poor-quality supplements run galore. Whenever you buy supplements, I recommend buying professional-grade products directly from the producer or one of their trusted suppliers.
The DAO supplement I approve of for my patients is Histamine Blocker. With 20,000 Histamine Degrading Units (HDUs) per serving, this unique patented formula replenishes the DAO levels in your body so you can combat excess histamine in your food.
For more information on the mighty DAO enzyme, read my article, Boost Your DAO Levels to Fight Histamine.
3. Use Antihistamines and Mast Cell Stabilizers
Because DAO in supplements has such a short half-life, it cannot enter the bloodstream to reduce the amount of histamine produced within the body. This means that excess endogenous histamines need to be addressed by other methods, such as natural antihistamines and mast cell stabilizers.
You’re probably more familiar with antihistamines like Benadryl. These drugs provide relief from allergy symptoms by competing with histamines for occupation of histamine receptors on cells. While you may want to keep medications handy in case you need immediate symptom relief, some reports suggest that the body can build a tolerance to these drugs, requiring more potent medications. If possible, try to start with natural sources of antihistamines and try to address the underlying causes.
Natural sources of antihistamines are:
- Vitamin C
- Stinging nettle
- Butterbur
- Bromelain
- Local raw honey
- Probiotics
- Astragalus
On the other hand, mast cell stabilizers prevent degranulation and stabilize the cell, preventing the release of antihistamines. Quercetin is a powerful, well-known, natural compound that exhibit mast cell stabilizing activities. Other mast cell stabilizers you might be familiar with include resveratrol, luteolin, and curcumin.
Having to take so many supplements can be overwhelming, especially if you’ve just been diagnosed with MCAS. I get it. Nobody wants to spend hundreds of dollars on dozens of supplements each with different directions. You’d be spending all day taking them! You don’t have time like that.
That’s why I recommend Hist Assist, a blend of flavonoids, antioxidants, enzymes, and botanicals that provide you with a comprehensive support for relief from MCAS symptoms.
4. Identify Sources of Toxins
There is no one single factor that has been shown as the definitive cause of MCAS. However, various microbes can disrupt the immune system and cause mast cells to go haywire.
One of the biggest environmental triggers of MCAS is mold, which I’ve written about in my article, Mold is a Major Trigger of Mast Cell Activation Syndrome. For patients with MCAS, it’s absolutely essential to reduce the body’s microbial burden. This could mean eliminating the source of the toxins or removing yourself from the building.
5. Increase Exercise & Sweating
You don’t have to spend thousands of dollars on trips to remote islands to experience the benefits of detoxification. Once you minimize inflow of toxins or triggers, you can take steps to mobilize toxins and enhance toxic outflow.
One of the best ways to “distress” the toxins in your body is to get the blood pumping through exercise. Sweating has been receiving a lot of attention in the recent years, with experts disagreeing on its ability to remove toxins from your body.
While it may not remove all pollutants, there are studies that show sweating is an effective and safe method for removal of:
In general, adults should aim for at least 30 minutes of moderate exercise every day. You can also try to sweat more with regular sauna sessions.
6. Promote Good Gut Health
The gut microbiome is another topic I’ve written extensively about. And although we’re still in the early stages of understanding the gut microbiome and its impact on our health, many experts agree that a skewed microbiome often results in illness, including inflammation.
Therefore, moving beyond calming hyperactive mast cells, restoring balance to body’s microbiome is essential. Diet is a huge factor, and I emphasize the importance of eating organic foods if and whenever possible. A plant-centric, low-carb diet will starve the bad bacteria while providing the good guys with energy to thrive.
To get a boost in restoring a healthy intestinal microecology, you can take a probiotic supplement like Probiotic Daily Essentials. Each capsule of this four-strain probiotic supplement is sealed in nitrogen-purged aluminum blister packs, protecting it from factors that compromise stability of probiotics.
7. Get Enough Sleep
In a world that idolizes intense productivity and doing “all the things,” it’s tempting to sacrifice sleep. But doing so can upset the circadian clock of mast cells, which regulates the severity of allergy symptoms throughout the day.
An interesting facet of allergic diseases is the variation in symptom severity throughout the day. Earlier studies showed that serum mast cell histamine levels were lower in the afternoon and highest at night. This is why many patients with allergies report experiencing “morning attacks” or sleep disruptions.
With irregular sleep patterns or poor sleep quality, mast cells can lose their rhythmicity, which means mediator release becomes uniform throughout the day. The bottom line here is that cultivating a good, regular sleep schedule and sticking to it can help keep your mast cells in check.
8. Reduce Stress
Chronic stress can kick your immune system into overdrive and allow troublemaking microbes to flourish. Stress can also contribute to mast cell degranulation, which causes them to release mediators like histamine. It only makes sense, then, for patients with MCAS to minimize stress as much as possible.
Triggers for MCAS patients can be wide-ranging, from physical or emotional stressors to the smell of perfume or even a change in room temperature. The reality is, MCAS is highly variable in its behavior. Thus, stress management for patients with the disease also needs to be personalized.
Similar to what I discussed in the “Eat a Low-Histamine Diet” section, I recommend that patients keep a daily journal of any emotions, events, or activities that triggered their symptoms. And remember, the devil is in the details. If you suspect that you are suffering from MCAS, it’s crucial that you provide your physician with a detailed list of triggers and symptoms.
Stress is a major problem for most of us, and many of us don’t have a healthy way of managing it. But it doesn’t have to be difficult, expensive, or time-consuming. For my tips on how to reduce stress, check out my article, Be Happier & Less Anxious with 7 Minutes a Day.
9. Low-Dose Naltrexone – The Surprising New Comer
Even with all the treatment methods outlined above, some people may continue to struggle with MCAS symptoms. Recent research shows that a novel use of low-dose naltrexone (LDN) may help some of these patients.
At first glance, LDN may seem like a strange drug of choice for treatment of MCAS. After all, naltrexone is a drug that was approved to help prevent narcotics and alcoholics from relapsing. As an opiate antagonist, naltrexone competes with opioid drugs for real estate on opiate and endorphin receptors. This helps patients feel less “high” from opioids or alcohol and reduce cravings.
So how does blocking opiate/endorphin receptors help MCAS patients?
LDN works in a different way. While it is still an antagonist for opiate/endorphin receptors, LDN appears to trick them into responding with an increased production of endorphins, the “feel good” chemical that is released during exercise.
More importantly, when LDN is used within a specific dosage window (typically between 0.5 mg and 4.5 mg), its binding of opiate receptors on immune cells can have a temporary immunoregulatory effect. The increased levels of endorphins stimulate the immune system by binding to regulatory T cells, which promotes an increase in T-lymphocytes. This upregulation of T-lymphocytes reduces cytokine and antibody production, restoring a more normal balance.
Additionally, LDN has anti-inflammatory effects. Recent studies have demonstrated this effect in patients with fibromyalgia, in which inflammation of the central nervous system is a common characteristic. When triggered by inflammation or infection, microglia and immune cells in the central nervous system increase their expression of TLR-4, which leads to an increase in the production of pro-inflammatory cytokines. As a TLR-4 antagonist, LDN blocks this cascade of inflammation. You can find out more information about LDN by reading my article, Low Dose Naltrexone: The New Treatment You’ve Never Heard Of….
In one 10-week pilot study, 8 women with fibromyalgia were given a 4.5 mg oral dose of LDN every night. The serum levels of several pro-inflammatory cytokines, such as interleukin (IL)-6, IL-1β, IL-2, IL-15, IL-17A, and tumor necrosis factor (TNF)-ɑ decreased significantly. Researchers also found that the patients who took LDN had a 15% reduction of fibromyalgia-associated pain and an 18% reduction in overall symptoms.
We have a lot to learn about LDN, and studies using LDN as a treatment option for MCAS is extremely limited. In a case study reported last year, one patient with severe MCAS and postural orthostatic tachycardia syndrome (POTS) experienced significant and sustained improvement using a combination of LDN and intravenous immunoglobulin (IVIg) therapy. The doctors overseeing her case hypothesize that by blocking TLRs that stimulate mast cell activities, LDN reduced the patient’s neuroinflammatory pain.
The doctors also reported successfully using LDN and antibiotics to treat another patient with POTS and MCAS.
Can LDN Treat Mast Cell Activation Syndrome?
Is LDN the inexpensive, safe, and effective therapy for MCAS we’ve been looking for all along? Of course, we’ll need more evidence, but based on the evidence so far, I believe LDN has the potential to treat a wide variety of conditions.
A word of caution when adding any supplements or medications: It might be tempting to take as many things as possible to relieve yourself of your symptoms, but people with MCAS can react to all sorts of things, even herbs. Slow down and take it easy. Start with one supplement or herb at a time and see how it affects your body.
Living with a chronic illness like MCAS can make you feel pretty discouraged. But there are things you can control. With the addition of healthy lifestyle choices and medications, you can stabilize mast cells and bring balance to your immune system.
Now I want to hear from you. Have you been diagnosed with MCAS? What have you tried for treatment of MCAS in the past? Have you ever tried low-dose naltrexone for MCAS or another condition? Let me know in the comments!
References:
https://www.ncbi.nlm.nih.gov/books/NBK27090/
https://www.ncbi.nlm.nih.gov/pubmed/9851930?dopt=Abstract
https://academic.oup.com/femsre/article/34/6/1037/592387
https://www.ncbi.nlm.nih.gov/pubmed/11944187
https://www.nature.com/articles/emm2017172
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3645001/
https://www.cell.com/immunity/fulltext/S1074-7613(08)00315-4
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3343118/
https://www.ncbi.nlm.nih.gov/pubmed/17490952
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3764846/
https://www.ncbi.nlm.nih.gov/pubmed/22505948
https://www.ncbi.nlm.nih.gov/pubmed/23213291
https://www.ncbi.nlm.nih.gov/pubmed/22253637
https://www.ncbi.nlm.nih.gov/pubmed/10415589
https://www.ncbi.nlm.nih.gov/pubmed/18662331
https://www.ncbi.nlm.nih.gov/pubmed/19453963
https://www.ncbi.nlm.nih.gov/pubmed/19629762
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5489802/
Thanks so much for this! Lyme and mold brought out my mcas. I’ve been doing a ton but this article is great. Any suggestions for the eyes? My eyes are my one major symptom left with all the lyme/mold/candida/mcas treatment. They are always red with pterygium. I do castor oil now and all my supps to stabalize my mast cells. Still irritated but with no pain.
Becky perhaps you could try Cromolyn eye drops? They’re a mast cell stabilizer for the eyes.
Ketitofen eye drops helped. For mast I’ve been trying cromolyn sodium Pepcid and Allegra, with diet changes. Still no major improvement yet and Zafirlukast… Btw, Dr. Jill, one question please. if I have to have a procedure with contrast, will steroids be enough to stop the de granulation ? I have to do a cerebral angiogram and am concerned. I had a ct angio in June w contrast and seem much more reactive since. Thank you for any suggestions. I appreciate all the wonderful information you share.
Dear Jill,
76yrs old, with allergic history since teens, increasing severity last 2-3 yrs, pollens, scents dyes/ smells, hot/cold, humidity, fatigue, ‘allergic to e’thing!’
Foods, many medications, additives, even guar, zxanthum, etc ect! After study & reading deeply, I am convinced there is mast cell at play. How can I find a diagnosis, most dr’s not interested!
Have major op shortly, helpful with anaesthesia to be confirmed, & supported appropiatley! Thanks,Marj Drewitt, Australia.
You can reach out to this society to obtain a list of physicians familiar with this diagnosis And another place would be looking for a mast cell activation support group on Facebook for your region of Australia, I have found this even more helpful! Good luck! https://mastocytosis.org.au/
Hi Jill. I have been ill for years, (I’m 31) and was recently diagnosed with CIRS, MCAS, and I have chemical sensitivities. I have tried everything but have recently realized, mold has been at the root cause of my problem as I have the “dreaded” HLA gene. I have been following all of you articles for some time and I want to say it’s such a relief to find all of this information in one place. I knew it was a matter of time that functional medicine mapped out the pathways. Several things that hay help you. My mast cell is activated from many stresors, but the biggest is mold. As you say, it is directly correlated with mold exposure. Another thing that sends my mast cells awry, is using too many mycotoxin binders such as csm and charcoal. One of the biggest things in treatment to grasp, is that ultra low doses of binders flair my mast cells. I think this is an important phenomena do note. In addition, I have been on LDN for a month taking 1.5 mg and working my way up to 3mg. I would have to say, other than xolair (which I couldn’t tolerate after 3 months) LDN has been the most impressive. It can cause insomnia however, so I have had better success taking in morning but based on studies, seems lke 9pm is optimal for blocking receptors.
I love your information! You are helping more people than you think.
Thank you, Jim! Yes, it is very important to start binders slowly and work up with MCAS. Thank you for bringing awareness to the sensitivity that MCAS patients experience…
I tried LDN also. 1.5 working up to 4.5. The first 3 weeks I only slept 2 hours each night and that was in 1 to 4 minute increments. Every time I would drift, I would wake up! I thought it was supposed to help me sleep so I’m glad to see your thought about insomnia related to LDN. Also, it changed my nerve pain from sharp burning to dried out and sticky. Not sure which feels better! LDN was my “last resort” — I’ve tried most of the RX, supplements, and OTC, diet, etc.
Hi Susan, Unfortunately not everyone tolerates LDN but that doesn’t mean that other options will not help you.
warmly
Dr. Jill
I have MCAD that developed after going through five months of treatment for a bacteria from lime disease. And I am suffering a great deal in pain all over my body with severe two and three months at one time elevated high blood pressure and then crashing high blood pressure, cannot be then warm water cannot rob my scan cannot smell any kind of sense or perfumes or deodorants am allergic to almo I have MCAD that developed after going through five months of treatment for a bacteria from Lyme disease. I am suffering a great deal in pain all over my body with severe two and three months at one time elevated high blood pressure and then crashing high blood pressure, cannot be then warm water cannot rub my skin cannot smell any kind of sense or perfumes or deodorants I’m allergic to medicines, supplements, vitamin C, histamine blocker, it’s affecting my eyes, my face has blotches on it the size of quarters and nickels my face burns all the time. I live in Central Florida and I desperately need help and cannot come to Colorado. Can you please please send me the name of somebody who can treat me no one in the area knows what to do and it’s been going on for 3 years! [email protected]
Hi Susan
LDN does not work for everyone but there are many other options to treat MCAS
warmly
Dr Jill
Dr Jill
Do you do patient video appointments?
Or can you recommend some one closer?
Hi Kelly
Dr. Lawence Afrin and Dr. Theoharides are excellent with MCAS
Hi Dr. Jill,
I am a Physician (Pediatric Oncology/Hematology) and have developed fungal illness that resulted in 2 large fungal balls in my maxillary sinus that were surgically removed.
I am on many good supplements, have had my home remediated by professionals and lavage my sinuses twice a day with Citridrops and buffered saline in distilled water. I am still symptomatic but am improved.
The odd thing is that for the past 9 months on CBCs every three months, I have had Zero eosinophils. This is confirmed by microscopic exam of the blood smear by Pathology.
I have never seen in my practice any patient with zero eosinophils and none of my colleagues have either. Do you have any experience with this and what causes it and what it indicates?
Thank you.
Deborah L Carter MD
Thanks for sharing Dr. Carter… Ideologies might include Cushings, steroids, immune suppression (common with aspergillosis) or systemic infection.
The company may have remediated the mold but have all the mycotoxins been removed. Ie remove/replace carpet, drapes, upholstery, hvac system. The long term exposure to multiple mycotoxins can deplete and suppress one’s immune system, energy ATP production, etc.
Dr. Jill
I am so happy to get this information from you! I think you are the answer to a million prayers and am certain God is leading me. I was diagnosed with MCAS in March of 2019 (one month before turning 60). I have had gastrointestinal issues my entire life (IBS diagnosis at 22) and after a very stressful year was diagnosed with lymphocytic microscopic colitis in March 2018. I am passionate about good health and so I eat extremely clean (scrutinizing even more since colitis diagnosis) and exercise regularly.
I received the MCAS diagnosis from Dr. Afrin who really wanted me to try the H1 and H2 blockers one by one. I am not ready to try those yet. I’ve read the entire LDN book and many publications etc (I am a retired dentist and biochemistry major so have some medical knowledge). After all of my research I decided that I had nothing to lose by trying LDN and asked my local gastroenterologist who agreed to my request to try LDN.
On April 5th I started taking 0.5mg since I am very sensitive to medication and am planning on increasing only by 0.5 each month. I have read many of Dr.Weinstock’s and Dr. Theoharides publications as well as yours. I had the great pleasure of getting to hear Dr. Theoharides in Seattle at The Forum for Integrative Medicine. I currently am taking several supplements but no other drugs besides the LDN. I really believe that Dr. Theoharides NeuroProtek product is helping me (only started in October). Also I take 2000mg of Vitamin C with dihydroquercetin, C3 curcumin, and 4000 to 6000 IU of Vitamin D3. I’ve read that these are all good to stabilize mast cells and reduce inflammation and I believe they do help.
I am counting the days until I get to meet you in person. My husband and I are fortunate enough to be coming to the Swiss mountain clinic during your first week that you are hosting. I have been stalking your website and instagram and though I haven’t met you yet I can see the genuine loving and compassionate person that you are. I have been sharing your information with so many others and in particular my own family. Our youngest son, Trey is graduating from a masters of Pharmacology program in a few weeks and will begin LSU medical school in July. If he is fortunate enough to become even half the doctor that you are he will be very blessed. You are truly changing this world for more people than you know! I have learned so much through my own health journey but the more I keep learning the more I realize how much I do not know. I will keep in touch and let you know how my trial with LDN goes. I am feeling super hopeful. Another thing I am trying is red light therapy, which has been shown to reduce inflammation in some instances.
Best to you and so grateful for your wealth of information!
Peggy
Thanks for sharing your story, Peggy! Please do keep us posted on how the treatment goes… I love red light therapy! Use my Sauna Space every day!
Thank you for the wonderful post, as always. I have severe MCAS, among many other completely debilitating conditions. I’ve been on 4.5mg LDN for 5 years and it has and zero affect on the MCAS, or anything else, unfortunately. Glad to know it can help some. Since you don’t work with new patients anymore, do you have anyone who you’d recommend for someone who is 100% bedridden and in critical shape?
Many thanks for your wonderful work!
Hi Jill, I tried using LDN but had headaches every day and so much of my hair fell out that I gave up on it.
LDN is NOT appropriate for everyone…
Hi, I Have Lyme, Bartonella and other co infecfions as well as MCAS. My MCAS was severe and was treated by LLMD with H1 and H2 antihistamines, DAO and Cromolyn Sodium and diet. At one point I only had 16 safe foods. Now that I’m far along in treatment and in remission for Lyme, Babesia and Mycoplasma, they started me on LDN while I’m finishing Bartonella treatment. I’ve noticed the most improvement during Bart treatment and the introduction of LDN. In fact, I am off low histamine diet, off H1 H2 antihistamines and Cromolyn Sodium. I still use DAO supplement. I still have a couple food sensitivies that aren’t histamine foods but am exploring Dr Steven Gundry’s plant paradox notion. I’m hoping to get much more but improvement when I heal from my long Lyme treatment.
How did you get into remission from Lyme? I have Lyme and MCAS but Bart is my biggest problem I think and it makes the MCAS just go insane. My “no” foods list is incredibly long and I have to show the waiter a huge allergy list every time I go out, it’s rather embarrassing.
Hi Deb how did you get tested for lyme?
I can’t find a Dr to help me I have 4 safe foods.
I just need help.
If you are in the US, Anylabtestnow.com has a reliable lyme test, no prescription needed. Its expensive, but that’s how I got my diagnosis, also check out global lyme alliance to find a local lyme practitioner. . .best
Yes, I have MCAS, POTS, h-EDS and mycotoxin illness. I believe all were triggered by living in mold. I tried LDN recently to treat and it made me worse!!😩 My worst symptoms is pain and inflammation and it made my pain worse and it made me lose more foods that I once didn’t react to. My doctor thinks my mast cells reacted to it something about the shift in the immune system. Perhaps my body couldn’t handle it. I even started out at 0.5, and went down to 0.25mg, but after 2.5 months I had to quit. I still can’t get my mast cells stabilized now and I felt they were under control before LDN. I’m very frustrated to say the least. Hoping for more answers. Wish LDN would have helped. We are also trying to treat the mold with binders, but I keep reacting to everything we try. I hope I’m not a lost cause. 😢
yes, start slowly and continue trial with different anti-histamine and mast cell stabilizers and you should be able to find something that helps…
I have been on LDN on and off for about 5 years. I believe it has helped me in may ways. I was diagnosed with MCAS a year ago, and have been dealing with CIRS, EDS, Lipidema, Lyme and Mold illness as well. Presently dealing with Afib and high B.P. which I feel is related to the EDS and CIRS. So with all that I have been feeling pretty well overall which surprises the Docs when they see my reading from blood work, et.c. In other words, they’re amazed I feel as good as I do!
I do want to comment on your website. The testimonials that you have on a rotation (on the right side) are VERY distracting when trying to read your blog. I have trouble focusing/concentrating at times and that constant motion makes it so I can’t read the wonderful information you have provided. So, is there another place I can read your blog that doesn’t have motion on the side? Thanks for all you do!
Thanks for your feedback, Jenny! …since the testimonies are only a tiny bar on the right as you scroll down I will not likely change it but I do appreciate your feedback 😊
Hi, Jenny. A quick suggestion/question: Might it help to cover the column of changing testimonials with an appropriately sized piece of cardboard when on this site? This is pretty low-tech, but as someone who gets ocular migraines from certain types of light and changes in light, I’ve found that avoidance helps me, so maybe this would help with the distraction issue, too. Wishing you the best, Jan
Thank you for this article and others mentioning EDS and its complications! Through the diagnosis of my teenage daughter, my son and myself have also been diagnosed. Those affected by these health issues are very frequently misunderstood in the medical community leading to other unhelpful and harmful diagnosis’s. It is a very difficult road to navigate medically, especially from a wholistic viewpoint. Bringing this to light in the functional medicine arena is a exciting. The EDS/MCAS/POTS community can really benefit from this information. It provides more alternatives to the sometimes unsuccessful treatment protocols. Thank you, thank you for bridging this gap!
As soon as I notice symptoms, I scan my “system” for any emotional blocks or resistance or any “resentment” or “fear.”
Then I grab the quercetin and Vitamin C. My body responds well to this as long as I stay alert. I use adaptogens as well.
For example, right now, after a great green and raw veggie salad with delicious roasted chicken, I sense the tingle in my face and the veins in my hands (a symptom I just learned about) which pop out when I’m experiencing a reaction.
Now I’m headed to the supplement drawer for Quercetin, and Vit C including slow release Vit C. I suspect that will help. And no more food till my puffy red face recedes (if it shows up in force). The first time the face rash showed I was a bit panicked! I have not tried DAO. A nutritionist diagnosed me a few years ago but my first real outbreak happened 2- 3 years ago at Christmas. The most effective first line of help seems to be Quercetin and Vitamin C and stopping the high histimine foods. And I always need to be aware of the emotional situation presence too.
Hi Dr. Jill,
Thanks for your many posts on MCAS. Have you had any luck with Dr. Theoharides’s Neuroprotek formula? I’m currently having some success with H1 antagonists for my MCAS issues (while working on underlying CIRS and Lyme). I would prefer not to stay on OTC antihistamines long term. Does Neuroprotek work as a substitute? Or can it partially substitute for H1 blockers?
Thanks again for all the great info!
Dr Jill I have been given Ldn by environmental doctor buscher in Redmond Washington but I haven’t used it yet I’m nervous too.. He also put me on compounded t3 which I have been using.. I live in Kuna idaho..im very toxic. I have mast cell activation disorder and chemical and electrical sensitivity bad and I have mold toxicity and candida.. I’m living where they cropdusting.. Well they cropdust all over Idaho.. I’m very toxic and I’ll Dr Jill please help me I don’t know what to take for mold toxicity just been taking activated charcoal.. I’m so toxic it gave me shingles on back of my leg and in my system.. I taste a metallic taste always and have no teeth left.. I’m being poisoned by something andante keep up with toxins and reaction. I have been taking allergdhq for histamine and milk thistle and pb8 probiotics and sometimes turmeric and magnesium at night.. I keep freaking out cause I’m so toxic and have yeast and rashes.. I have been taking clonzapam every three days it seems to calm things a bit but dontlast and I heard they are bad for you.. Can you please help me I say momma randomly outloud and not on purpose.. Mucus lining all seems to go together like the taste in my mouth is causing yeast and symptoms in vaginal area nose is dry inside and I have been having a weird symptom in left eye blurry and like something is pulling in outer part of eyeball on left eye.. It all seems to go with taste which I believe is toxins.. Heat in face an brain.. Please help me.. I don’t know what to take or do anymore..love candy.. Please email me at [email protected]
Dear J, Sorry to hear that your condition is debilitating. If you will send me a message, then we can compare notes and see if there are any physicians that I know of who might work for you. My good friend is for 20+ years also unfortunately among the worst of the worst of the worst, and she is the one that lived.
Don
[email protected]
Dr. Jill,
Thank you for all of the helpful information on MCAS. I had a tick bite in August 2019, TDAP vaccination in October 2019. Late November I had a sudden onset of swollen lymph nodes and rash. My PCP’s first thought was histamine reaction. These symptoms resolved in 10 weeks, followed by a sudden onset of gastroparesis and severe reflux (had to get IV fluids often for 7 weeks and no prior history). These symptoms are very slowly getting a little better, but the rashes have come back. I have a mold test scheduled for my house. Comprehensive stool test is good. Lyme’s test was negative. Heavy metals test was high in platinum and have treated that. No fungus.
What other tick borne illnesses should i be tested for to see if that is the source? I am on omeprazole (unfortunately) and an H2 blocker, getting ready to add an H1 blocker. should I go ahead and transition off of the omeprazole? the reflux is still significant, but wonder if the omeprazole is aggravating it.
I am eating about 10 foods, and have difficulty adding new ones, even low histamine foods.
Thank you,
Laura
Hi Laura
You may want to get a comprehensive panel from labs like IgeneX or Vibrant Lyme or Armin labs
warmly
dr Jill
Thank you.
I am on the omeprazole and quercitin, and added the zantac about a month ago and my reflux just seems to get worse. I have a telephone appointment scheduled with one of the dietitians that you work with to help figure out a plan to add foods so that my weight loss stops. Wondering what the logical next step would be. Should I add in and H1 blocker? or try to back off of the zantac or omeprazole? Or try something like the cromolin. Also want to have the HLA DR antibody tested that you mentioned in one of your podcast. I appreciate your knowledge so much.
Dr. Jill,
Thank you so much for all the information you have compiled on your website regarding MCAS, et al! What a blessing to have this helpful resource! I have been recently diagnosed with MCAS and have started oral Ketotifen (0.5mg/2x daily). I have taken LDN in the past for CFS and this article brought me to the following question, would you utilize LDN and Ketotifen simultaneously? I would like to bring your articles to the attention of my practitioner, who is very open to alternative and integrative therapies. Thank you again for sharing your research, knowledge and understanding! May God continue to bless you and your work!
My doctor just put me on LDN two weeks ago for continual reactions and already, I’m noticing a significant decrease in reactions, better sleep, and just in general, I’m feeling better–I think the massive inflammation in my body is starting to drop. I’m at 1 mg now and working my way up to 4.5 mg. It’s incredible…finally, a light in the tunnel.
Hi Dr. Jill,
Great article above! Thank you for all your efforts to help us patients find answers to the perplex queries of our health.
I am hopeful that in your future blogs, Piecemeal degranulation of Mast Cells would be a topic as I hope to understand if this explains why I feel a lingering feeling of itch after a random small exposure to a trigger.. Taking antihistamines at this point just doesn’t relieve me. Rather, what relieves me of this feeling is to ingest a bigger amount of any trigger, where I feel a boost of the allergic reaction, and this is where taking antihistamines at this point effectively relieves me. This is a very weird and tiresome approach as I don’t want to purposely ingest a trigger, but for now, I don’t have any other way to relieve me..
Very Hopeful,
Ruth
Hi Dr. Jill,
Great article above! Thank you for all your efforts to help us patients find answers to the perplex queries of our health.
I am hopeful that in your future blogs, Piecemeal degranulation of Mast Cells would be a topic as I hope to understand if this explains why I feel a lingering feeling of itch after a random small exposure to a trigger.. Taking antihistamines at this point just doesn’t relieve me. Rather, what relieves me of this feeling is to ingest a bigger amount of any trigger, where I feel a boost of the allergic reaction, and this is where taking antihistamines at this point effectively relieves me. This is a very weird and tiresome approach as I don’t want to purposely ingest a trigger, but for now, I don’t have any other way to relieve me..
Here’s the link to the NCBI article re: piecemeal Degranulation.
https://www.ncbi.nlm.nih.gov/labs/pubmed/15970657-piecemeal-degranulation-of-basophils-and-mast-cells-is-effected-by-vesicular-transport-of-stored-secretory-granule-contents/
Thank you!
Very Hopeful,
Ruth
Great information! I am interested in using the HistAssist for my MCAS symptoms. I have not been able to tolerate using OTC antihistamines (Zyrtec, Claritin, etc) so hoping this might help. I see the formula uses Pineapple. From my understanding, pineapple is a high histamine food source. How does this affect effectively using the HistAssist when one with MCAS needs to avoid high histamine foods and sources?
Dr. Jill,
Thank you so much for this informative article. I have histamine intolerance and knew about some of this, but not all of what you have here. But I have a question: can these things also help prople with systemic mastocytosis?
Hi Christina
yes, these tips may also help somewhat with systemic mastocytosis…
warmly
Dr. Jill
I stopped benzodiazepines 5 years ago. And after that i have developed all the symptomes of MCAS. I live om Norway. No one understand me. I ha d ro ho back om benzodiazepines after 5 years bedridden. Now they want me off again. It’s the only thing making me anke to eat everything i want get jo from bed . It’s possible for me to get out in the sun. Not so much anxiety, stomac pain is away, musckles relaxes and do much more.
All my symptoms started as soon as I was withdrawn from benzos too. Benzos keep a clamp on the mast cells so when they are removed they go haywire and MCAS can develop. Sorry you’re going through this.
Thank you so much for this article. I was diagnosed about 15 years ago with POTS after a case of mononucleosis. Since then I have struggled over the years with various health issues including daily headaches, stomach issues, “allergy” issues, etc. It wasn’t until a few weeks ago at an allergist appointment (where I went through my first allergy testing), that the allergist talked to me about the possibility of MCAS. It doesn’t seem like it would be mold related since my POTS came from mono, but would some of the same treatments work? For what it is worth, I only had 2 allergic reactions show up and they were VERY small. With my bronchitis episodes every spring, he is thinking MCAS might be the answer. Right now he has me trying Allegra during the day, Zyrtec & Singular at night, plus 2 nasal sprays and Zantac. It has seemed to help a lot so far. I would like to treat it more naturally, but the relief has been nice!!
I wonder if you have any experience using LDI (low dose immunotherapy) for patients whose MCAS was triggered by Bacterial LPS from dental cavitations. It seems to me that even after the cavitations are dealt with, the immune system can still be trigger happy and allow the mast cells to continue their rampage despite the lack of LPS.
Yes, LDI may be helpful
Hi Dr Jill,
I have had asthma and severe allergies since birth. Many tests were done for cystic fibrosis, etc and tonsils adenoids removed at 18 months as they could not figure out why I was sick all the time. Conventional treatments were not working. My symptoms although the sort of fit with asthma/allergies were atypical. I spent most of my childhood in hospital, in oxygen tents and on treatments. I had many allergy tests of course confirming environmental and animal allergies. My first anaphylactic reaction happened the end of aug’89, I was 14. I was intubated. I was then put on Intal (Cromolyn). I continued anaphylactic reactions here and there. I was exposed to mold and was again intubated the end of aug’96, I was 21. I was then placed on Singulair, advair and carried an epipen. Many reactions later, particularly after 4 in 1 month, I went to a different allergist/immunologist at age 40, 4 years ago. My triggers were bay leaves, senekot, advil, Montreal steak spice, assorted subs, dairy queen ice cream, mushrooms, mold and other environmental items. He diagnosed with MCAS. I am taking Singulair, adviar, reactine 20mg daily as well as prevacid. My usual emergency kit is nebulizer with ventolin, benadryl and epi pen. My reactions start with diarrhea, nausea, then shortness of breath, nasal congestion and sneezing, itchy throat and ears and hives. I have also had a bout of reactive arthritis putting me on methotrexate, plaquinil, prednisone and something else I cant recall. Also bouts of iritis and scleritis. If I don’t get enough sleep I get a headache and suffer from bouts of fatigue and achy joints here and there, but I keep going. My daughter is 24, allergic to eggs and has had 1 minor reaction of hives, shortness of breath and diarrhea after eating movie theater popcorn. My son has allergies/asthma and rhinitis, constantly congested. So here is hoping they don’t become as bad as myself. My tryptase was normal, has not been tested within 2 hours of a reaction, no 24 hour urine and my bone marrow test was negative. I have increased RF, eosinophils, colonoscopy showed increased eosinophils, some other inflammatory markers increased. CBC has some abnormalities usually too related to allergies/immune system.
Any other suggestions would be greatly appreciated. Thank you in advance.
Hi Rondele
Another cause of elevated eosinophils is parasitic infections. I suggest testing and treatment if necessary.
warmly
Dr Jill
I was diagnosed with MCAS last year and treated it mostly with diet and antihistamines. We then found we had a mold exposure and cleaned that up; so I focused more on detoxing from the mold and less about the histamine because my symptoms got better.
2 months ago I got very sick again. I have been through it all trying to figure it out. Headaches, diarrhea, heart palpitations, really bad anxiety, intermittent insomnia, and the list goes on. Over the past 2 months i keep coming back to MCAS but I couldn’t for the life of me figure out why I would be having such a flare of symptoms. My diet hasn’t changed, no new environmental factors, etc. BUT today I realized that all of my symptoms started when I started Invisalign. And with Invisalign you change to new trays every 2 weeks and a day or two after each change of tray I would get hammered again with intense symptoms. The latest being swelling of my tongue and throat. I looked up allergic reactions to Invisalign and saw many people post and explain similar symptoms to mine and then I remembered that I had MCAS! Have you ever heard of such a thing? Could it be that the constant exposure to the plastic of Invisalign is causing this??
Hi Anne
Yes, the plastic may contain BPA and other chemicals and I have seen some patients have a local reaction, although not as severe as the one you are describing
warmly
Dr Jill
I was diagnosed in Boston with MCAS in 2015. I was so sick with attacks of tachycardia, near syncope, shortness of breath , severe abdominal bloating and bright red hot flushing over face,neck and chest. I thought I was dying. Went to numerous specialists for a year. It was the most miserable time of my life. I’m an ICU nurse and I had to go out on disability because the attacks interfered with me being able to care for patients. Once I got on the right meds for me, it took over 2 years to really feel better. I have so many triggers. I currently take Claritin 3 times a day, Zantac twice a day, singulair once a day, ketotifen 2 times a day (which I get from Canada drugs online). Vitamin C seems to help also. I tolerate aspirin so they have me on 81 mg twice a day although I know it can be a trigger for some. I have to avoid heat, sun, cold (I get cold urticaria really bad) and anything with preservatives in it. No alcohol whatsoever! That was a huge trigger when I first got sick. It’s been a long journey and I’ve had to change my ways a lot! I have to rest when I’m exhausted and avoid stress at all cost. I had a serious reaction today and that is why I was on google. We were in Walmart in computer section and I’m not sure why or what triggered the reaction, but it’s happened before in electronic section of stores. Had to take meds and felt some relief within 15 minutes. Anyone have that type of reaction with large stores or electronic section. Lol. I know it sounds strange.
not at all… EMF exposure may trigger worsening reactions in MCAS patients
I appreciate 9 methods you share. It is of great help to me in the treatment of my illness.
Hi Dr. Jill,
I have no idea if I have MCAS or not. I am uninsured, so it’s nearly impossible to see an allergist, etc. I developed slight asthma 4 winters ago, when I was 32. While sledding and climbing uphill, I became very winded and short of breath. I’ve always taken good care of myself, eat a very nutrient-dense diet, take quality supplements, etc, so this asthma dx was astonishing. I don’t know how an adult woman suddenly develops asthma. Now, it comes and goes. I’ll go 6 months or more without needing my inhaler, then I’ll have a month like this last one where I needed it every 2-3 days. I often wake up around 3:00 a.m. with severe congestion, heavy chest, and/or wheezing and am unable to get back to sleep until I’ve used my inhaler. Zyrtec helps, but I try to avoid it as much as possible. This past year has been the most stressful year of my life, and I’m just now beginning to get it back. But I keep coming across MCAS, and I don’t know how to go about getting tested. Can you point me to the type of labwork I would need? Does what I describe sound like MCAS or just histamine intolerance or neither? Many thanks! Lindsey
Hi Lindsey
There are many reasons someone can develop new onset asthma as an adult but I 100% agree with you that you should look at possible root causes. Poor HPA axis dysfunction, environmental toxins or allergens are among the many reasons this could occur
warmly
Dr Jill
Thanks, Dr. Jill for all your good work. It is so refreshing to see an MD interested in MCAS and also caring enough to have a Q&A component on their site. Regarding LDN, I was an early adopter to LDN, on it for almost ten years. It gave me wonderful relief for fibromyalgia, until I went GF. After 6 mo., I no longer needed the LDN. I have always had IBS and fibro, and food intolerances from birth. Food sensitivities including histamine intolerance, IBS and thyroid CA as well as ADHD run in the family. I am on a strict organic, low hist, unprocessed diet, but have been troubled my entire life with intolerance to all fruit and acids, incl. ascorbic, citric, malic, acetic, etc. I was shocked to hear recently that citric acid is developed from mold for I am intolerance of mold as well. Despite quercetin and a host of H1, H2 products, one bite of blueberry, pear, or even watermelon will send my body into a fit of fibro, flatulence, and constipation. Does this make sense in some way? Since Jan 2019 when I had a cardiac ablation for arrhythmias (that was unsuccessful), I have been plagued with MCAS, and still trying to recover. I shall never stop experimenting to manage this MCAS. But I wonder what I can do for the inability to eat fresh organic fruits and acids? Can you advise? Thank you in advance for your thoughtful remarks.
Hi Peg, it may be related to salicylates or oxalates …
Hi Dr. Carnahan : My daughter has mast cell activation disorder , we went to Cleveland clinic and John Hopkins with no results, we live in Dallas Texas and UT southwestern will not even reply by to us even though my daughter sat down with the director of immunology Dr. Khan and had a major reaction in his office in front of him and had to go to the Emergency room right away. He did not even visit her at the emergency room….. she is taking all the mast cell medications , Cromolyn, Ketotephen, H1, H2, antihistamine and many others medications to be able to somewhat function, she is divorced with two little boys . My daughter did not try LDN ,but we are looking into HBOT , Hyperbaric Oxygen Therapy. Do you know if that helps or not? Thank you
I have not seen HBOT used specifically for Mast cell disorders
I have been going through this for almost 3 years now-I am allergic to benedryl so that’s sucks – my question for you though is- the first you recommend for histamine- you say sweet potatoes are risk and beans of all sorts listed as good- on every other histamine list sweet potatoes are recommended and beans are not can you explain why sweet potatoes would be a risk? I am lacking in so many vitamins and am allergic to most everthing- I haven’t reintroduced sweet potatoes yet
Thank you for your time
Karon
I would give the sweet potatoes a try if you are limited on options…
Dr Jill,
I have been seeing a research doctor for 2 years who is an immunologist. I started Seeing her in Jan 2018. She did extensive immune testing at that time. I started LDN in March that year. When I saw her in May 2019, my immune studies showed much better balance and function. And I was able to forego sinus surgery late in 2018 after years of infections. I also attribute this in part to the LDN.
Well, I’m not able to take ANY of those supplements, and am down to eating one food, again. I’m doing a juice fast to try to do some detox. I cannot even take antihistimines without reaction. I guess it is God and I to figure it out. I will try to exercise more and try to balance my autonomic nervous system, avoid stress. That’s what I have to work with. That’s what I’ll go with. I had tried LDN, and it made me worse, 10 years ago. I find that many things that work for other people….even “Thought Field Therapy”, if done too much, it makes things worse. All I can do is baby steps. I’m sure that others, here, will have some of the same experiences. Thank you for the article. It was still enlightening….though a little depressing for me.
You may try DNRS by Anne Hopper or desensitization therapy with a trained therapist. I am sorry you are experiencing such sensitivity… it can be difficult to get out of the cycle of reactivity unless you try to retrain your limbic system. Best to you in healing 😊
I believe I have MCAS, however my allergist tested my typtase and it was negative. So, I don’t know if it’s just a Histimine Intolerance. I only get a rapid heart beat. It’s happened when I’ve eaten almond butter, a yogurt drink, avocado recently and blueberries. My throat feels like it will close when I eat beans. This has been happening gradually for the last 7 months. Prior to this, I ate everything with no issues. I only eat chicken, turkey and eggs along with lots of cooked greens and broccoli. I’m just eating apples right now. I tried Quercetin and DAO. Both made my heart rate increase with just a little. I’m seeing another ND this month. The last one I saw told me to stop eating gluten and brown rice. I’m 96lbs and 5’2. I don’t want to lose any more weight. I react to a lot of things. If anyone has any other suggestions, I would definitely appreciate. This is very debilitating.
Is there a specific test for MCAS that I can ask my D.O. for? I believe I have it. Back broke out first, now my calves are covered in hives. Saw my NP this past Thursday, she thought it was this and suggested an ointment with botanicals from Vitamin Cottage. I also have Lyme and Babesia.
The itching is driving me nuts!
Hi Dawn, Diagnostic criteria for MCAS can be found here
Hi Jill,
I’m in my mid 50’s and was just diagnosed with Ehlers-Danlos syndrome and POTS last year. Horrible that it took so long and that Iwas forced to suffered through so many medical Drs referring me to psychiatric people because they thought I was a hypochondriac even after having dozens of surgeries, but be that as it may. Fortunately, I found someone who is helping me now, a Chiropractor and Dietary expert, but we are perplexed by my inflammation not responding to treatment. My inflammatory marker is almost 10 and my son has the same problem. I cannot afford the $3000 for genetic testing, and to what end? I’m considering the elimination diet for starters, but I was wondering if there are any Drs on the East Coast, Boston area, that can help with diagnosis and treatment? I went to the only geneticist in the area, but he just sent me on my way, said there’s no cure and to just treat symptoms, contact him if something severe happens (as if this chronic state I’m in isn’t bad enough!), then said, “Good luck”. What can I do?
Hi Lisa
You might try someone trained in functional medicine and can search by zip code at http://www.ifm.org
warmly
Dr Jill
My tryptase level was normal, but I feel like I have MCAS. I react to so many things and I can’t even handle tiny amounts of supplements diluted in water. Klonopin helps somewhat but not completely. This has been going on for 11 years and I don’t know what to do. Is there another test that I can try?
MCAS is a clinical diagnosis so normal try-taste does not rule out a mast cell disorder
I have Lyme and Bartonella and MCAS as a result. The weight will NOT stop piling on! Foods cause reactions, supplements, prescriptions, even vitamins do! I just had a reaction to high dose B5 that lasted a week long! So sick of this merry go round. I’ve been suffering with these symptoms severely for about 2 years straight now and Lyme since 2012. Don’t know what the magic bullet is. I’m trying to treat the Bartonella but MCAS has not improved in the slightest. Constantly finding new things I can’t eat/take on a weekly basis, constantly having setbacks, and most upsettingly, constantly having to restrict my intake due to weight gain (water retention that just accumulates and never goes away). In fact within the first year I got diagnosed with Lyme I put on 50lbs (probably mostly water) thanks to MCAS! It took five years to lose it and it’s a daily nightmare trying to keep it from inching up and up and up again. What a depressing life this turned out to be.
Hi Dr. Jill,
Thanks for your post on MCAS and I was wondering if it is possible for mast cells to react negatively initially to medications/supplements that are supposed to calm them down? I am a hypermobility/EDS person and I have tried ketotifen and quercetin, which both caused worsening symptoms (breathing and even GI issues), and now my allergist prescribed an ICS inhaler that is causing the same issue. If I push through the reactions, it does get better after a week or so, but I get pretty much back to where I started. I have seen a functional medicine person before and they even struggled with me (investigated food intolerances/allergies, lyme, mold, etc with no improvements)… Any thoughts?
Hi POTSgirl,
with MCAS it takes much trial and error and elimination of inert ingredients by compounding the formulas to see if that helps. It may take 10-12 different trials of medications, including compounded versions before finding what works best to control your symptoms. And if you have ongoing chronic infections or mold exposure, all bets are off until you fix the original trigger.
warmly
Dr Jill
have you been tested for the MTHFR gene mutation? It can cause alot of random reactions to medications.
also with the inhaler…I found out I had a Salicylic acid intollerace while I was being treated with inhalers. Evidently most inhalers have some form of salicylic acid in them (asprin) and will make asthma symptoms worse in a handful of people. and ICS inhalers did not work for me due to the MTHFR gene mutation.
just suggestions to research. I hope you find your answers you need!
I have been dealing with Interstitial Cystitis and gut issues for just over two years. I suspect that mast cell/histamine issues play a role because when I have taken Zyrtec daily for a over a year and it helps with the frequency issue. However I’ve gained 25 pounds in the last year and I highly suspect the Zyrtec is affecting my ability to keep my weight down. I’d like to switch to something else that would target the same issues. I have tried quercetin (quercetin by itself) twice and both times, within 3 to 4 days after taking it my urine smells really strong-like smoked meat. Do you have any suggestions for replacing the Zyrtec? I cannot take your Hist Assist because it has absorbic acid, which irritates my IC. I started LDN 2 months ago, I’m up to 3.5. It has really helped me with sleep but I have not yet seen help with the IC.
yes, interstitial cystitis is often exacerbated by mast cell issues. You can try plain Quercetin or compounded zyrtec or allegra or claritin
Hi Jill
Great info! I have Lyme, CIRS, MCAS and an autoimmune condition. I can only eat 3 foods and cant tolerate any supplements or meds. I have mast cells flaring in my esophagus and stomach if i eat even a trace of a trigger food. My microbiome is messed up, bile reflux, SIBO as well. Would taking a binder like charcoal be a good starting point for me? I tried LDN and was praying it would be my miracle medicine but it flared my TH1 immune response and made my autoimmune problem worse. I am really desperate. All my labs are off and feel im headed towards death. Also spent $50K last year on my health and dont have a single positive thing to show for it. ANy suggestions on a good starting point would be wonderful and i would be so grateful. thank you
Jason
It’s hard to say
I agree with you
I agree with you
MCAS has ruined my life. I’m suffering terribly from mold toxicity and have become completely bed ridden. I’m unable to eat anything. I’m down to chicken stock and boiled meat. I’m wasting away and dread waking up in the morning. If I eat so much as an organic green bean, I’m suffering from 160 beats per minute, trembling, and unable to talk. I went from happy to healthy to dying and unable to walk…. no doctor will treat me and I don’t know what else to do. I’m so weak from being unable to eat I can’t even stand. This is a slow and scary death. I’ve lost my home and everything. Wish you were taking new patients.
Sarah – I am so sorry to hear about your suffering. I suggest trying Dr. Theoharides or Dr. Afrin
warmly
Dr. Jill
In addition to mold remediation and mast cell supportive supplements, both of which improved my MCAS to a point, I found the Dynamic Neural Retraining System by Annie Hopper to be a tremendous help. It seems that after 2 years of crazy reactivity my nervous system needed a reboot. I also found that use of a PEMF mat cleared up some residual symptoms. 18 months after beginning treatment, I am symptom free. I am so grateful to have my life back.
I forgot to mention that slow and steady mycotoxin detox was part of my treatment also. But the DNRS was a game changer.
Hi Janice
Thank you for sharing your success! I agree that DNRS and other limbic retraining activities can help symptoms of MCAS
warmly
Dr Jill
Most people in my area have no knowledge of the fact that scalp therapy shampoos for fast hair growth (of course without any sulfates, parabens or DEA) are a thing. We all now may possess longer hair and achieve more options. Definitely worth searching.
Whether you’re assessing hair loss, damaged hair, preventing hair disorders, hair growth, hair and scalp care in general, very similar ideas become relevant.
As a general rule, you have to avoid hair products and treatments that contain chemicals like parabens, DEA and sulfates.
What’s beneficial for your hair is healthy for your skin as well.
It goes without saying your content on this page is so useful for multiple reasons. It steers away from the common errors and errors so many fall into: buying ineffective alternatives. Keep it up!
totally agree, Shemika! Thanks so much for sharing
I’ve been on LDN for 2 years. Honestly, I don’t know if it is working or not. I get the same neuro symptoms and my cycle is my biggest trigger. Antihistamines make me agitated and depressed so I am looking into a more herbal/holistic approach.
20 mg of claritin 2x a day
Ketotifen eye drops as needed
choline (1 x a day) paired with b2 (400 mg 2 x a day) helps with slow digestion&dumping syndrome and reduces intestinal swelling.
hydroxy andneo b12
Its the only relief I’ve found. I watch my diet super close…as well as any chemicals in my environment. I have a low salaclic (asprin chemical spelled it wrong lol) acid diet.
I’ve tried doctors and specialist and no one helped me. no one believed me. i had to keep trying things on my own till i found something that took away the swelling and i could breathe again? without this combo i will balloon up to 3 pants sizes larger, my face looks like the stay puff mashmellow man and i wheeze like nobodies business.
Hi Jill!
I’m dealing with chronic urticaria,stomach aches, lung flare ups, low blood pressure and more. I just found out I have hereditary alpha tryptasemia. I have super high tryptase. Some say this is a mast cell disorder and other put it in its own category… . Dr said xolair would help but I’m nervous about the side effects. Wondering if LDN would be a better choice? Thanks for listening 🙂
Ps: I forgot to mention I’ve tried histamines types 1 and 2, ketotifen and cromolyn but nothing has worked for the urticaria….
This information has provided hope for recovery from illness persisting from my covid-19 infection in March of 2020. Thank you. I believe this is a huge piece of my puzzle. I live in rural Arkansas where I cannot access healthcare for a multitude of reasons. Mainly because I haven’t been able to work in over a year now and cannot pay the tens of thousands I owe from the initial infection, where I was mocked, degraded, and treated in ways I still cannot process. The majority of people here do not believe the virus is real, even today. They worship Trump. I was a gymnastics coach. Now, I struggle to lift a gallon of milk. You have given me hope to continue to fight. Thank you.
Ive barely any words.. I’ve been searching for answers and you’ve given them to me. Reading this was check check check ✅ so many confirmations. Thank you!!