If you’ve ever experienced a runny nose, sneezing, or watery eyes, then you’ve experienced an allergic reaction. Allergens are bombarding our bodies all the time, and this reaction is a highly protective response by your immune system when mast cells sound the alarm.Mast cells, also known as “jack of all trades” immune cells, are intricately involved in your body’s allergic response. 1 They’re your first line of defense against foreign substances entering your body, and their central role is to protect you. Without them, your body wouldn’t even be able to heal from a wound. 2Mast cells are best known for the role they play in allergic and anaphylactic response. But, studies are revealing that they also play a significant role in immune activation, the development of autoimmunity, and increased inflammation. 3Unfortunately, mast cell disorders and mast cell activation syndrome (MCAS), in particular, are on the rise these days.
I believe it’s in part because of the constant barrage of environmental toxins, molds, and chemicals.Let’s take a look at what exactly mast cell activation syndrome is, how it might be causing your mystery symptoms, and what you can do.What is Mast Cell Activation Syndrome?Mast cell activation syndrome is an immune disorder. It’s just one type of mast cell activation disease.What sets MCAS apart from other mast cell activation diseases is that it isn’t caused by an abnormally large amount of mast cells, and it isn’t a result of pathogen infection. Instead, when you have MCAS, you have a normal amount of mast cells, but they’re overactive and malfunctioning.When your body is exposed to what it thinks is a threat, these overactive mast cells start to go haywire and secrete massive amounts of chemical mediators stored in the cytoplasm of your cells—degranulation. What’s meant to be a positive, protective response from your mast cells instead triggers both local and systemic negative effects.When chemical messengers are released into your body, they set off an alarm that triggers an immune system response. And when this response becomes chronic—the chemical messengers are set off too much, too often—the result is mast cell activation syndrome.
4Mast Cell Activation Syndrome and Chemical MediatorsMast cells are located near the border of just about every tissue in your body because they’re your first line of defense.Mast cells are especially concentrated in your:. Skin. Gastrointestinal tract. Lungs. Sinuses. Nervous system.
Reproductive organsBecause of their close location just below the surface of your tissues, mast cells are readily available to defend against foreign invaders as soon as they enter your body. 5If your immune system is working as it’s designed, it’s able to fight off these foreign invaders effectively. We see problems arise when your immune system goes into a constant state of reaction to allergens. When this happens, your body becomes flooded with histamine and other chemical mediators released by mast cells in response to the allergen.These mediators include: 6.
Histamine. Tryptase.
Chymase. Interleukins. Prostaglandins.
Cytokines. Chemokine. ProteasesThese chemical mediators are responsible for affecting early phases of allergic reactions. And once these chemical messengers are released into your system, they can trigger even more late-phase and systemic effects.When you have MCAS, you have repeated episodes of symptoms, although the organ systems that are affected and the combination of symptoms does vary.
Let’s take a look at the variety of symptoms caused by overactive mast cells.What Are the Symptoms of Overactive Mast Cells?Symptoms associated with MCAS are caused by large amounts of histamine in your body when mast cells become hypersensitive and overactive. Author: Jill Carnahan, MDDr. Jill is Your Functional Medicine Expert! She uses functional medicine to help you find answers to the cause of your illness and addresses the biochemical imbalances that may be making you feel ill. She'll help you search for underlying triggers contributing to your illness through cutting edge lab testing and tailor the intervention to your specific needs as an individual. She may use diet, supplements, lifestyle changes or medication to treat your illness but will seek the most gentle way to help your body restore balance along with the least invasive treatment possible. Jill is a functional medicine expert consultant and treats environmental and mold-related illness as well Post navigation.
Jill-Your presentation at the CIRS Conference was amazing! You are such a dynamic Physician, educator and healer. I am on moldy house #4. I keep jumping out of the frying pan into the fire.
I was treated with CSM 3 years ago when I was exposed to Chaetoneum. Initially, I would sweat profusely upon expose. Then I started having an immediate bowel movement when I was around something I didn’t like ( I have to laugh). Now, I have EMF sensitivity that is causing me to go into seizures. I just moved to a new area and am trying to find Integrative Health Care. Psychiatrists that understand the effects of mold are seemingly impossible to locate.
I am a mercury poisoned Dental Hygienist with MarCons and a husband that doesn’t want to move again. I am extremely resilient but I am at the end of my rope. Do you do phone consults? I am the poster child for CIRS and MCAS.Gratefully,Kay Helfant. My son had an illness 4 years ago that doctors never diagnosed however they speculated he had an undiagnosed case of encephalitis. Since then, he has experienced several ‘flare ups’ of a cognitive fog which eventually leads to insomnia, inability to find words, difficulty communicating and anxiety. He never had these issues prior to his illness four years ago.
We cannot find common triggers for when the flare ups happen. His symptoms match many of those you have listed in this article. We’ve been to 18 doctors in all different disciplines given his wide range of symptoms. Wondering if there is a list of doctors who specialize in mast cell activation diagnosis that I can take him to? Dr Carnahan,I am reading through the diet recommeded for MCAS by Dr Joneja in the link you give above and there are quite a few surprises on the list so can you comment? My wife follows a different list from Dr Ahern (in addition to strict Paleo) and it seems to help but the list in your link seems strange (why does it allow dairy, gluten and cashews for instance).I am specifically interested in why the following are restricted:Sweet potatoesBerries such as blueberries, blackberriesGrapesUnpasteurized honeyThanks for your help!
I don’t know if I just simply have a salicylate and histamine intolerance or if its mast cell activation. I just know that I react to many vegetables, fruits, preservatives,dyes, yeast, fermented things etc.
I have completely eliminated gluten products because I was getting brain fog so bad it felt like I got a concussion along with numbness and pins and needles. Although putting aside the gluten from food I still get flushing, burning skin, and onset of extreme anxiety. The thing that confuses me if how fast the reaction will come on it will take often less than a minute to start having my skin burn and when I react wrong to a food and get anxiety it happens in less than a minute to and sometimes will last all day so I try to be so careful what I eat. I don’t understand what would be causing me to get such fast reactions from food. Its been hard.
Wow, this article is amazing. I suffered for many years with chemical sensitivities, asthma, allergies & digestive issues.
For about 10 years I had even had seizures. Doctors said I had everything from Lymes disease to MS, but nothing was concrete. My husband & I operated a commercial cleaning business for 20yrs. Now he has a lot of the same problems as me. Doctors have been treating him for RADS, asthma & COPD. We found the only way to cope was to be guarded about our environment.
We discontinued our business, which helped me to improve, but he continues to decline. Thank you for the research going into understanding this growing problem. Thank you for this article Dr Gill. I saw 2 allergists here in quebec, canada, and have an appointment with a third one soon, since no one helped me, they only do the skin scratch tests to confirm i have pollens, dust, cats and seafoods ige mediated allergies. Now that doesnt help me at all with my mcas symptoms, i evrn had POTS symptoms last summer that fortunatly calmed down since my diet is very stable with testing every safe food separatly ( im eaTing about 30 different foods now). My question is: how do i make sure the allergist does me the good tests to diagnose possible mcas?
I cannot travel far to see a specialist, i cannot eat out and im a single mother of two. I do not take any medication. Im afraid to go back to the dentist ( had a cardio respiratory reaction with anesthesiant). My typical reaction is sensation that something is stuck in my throat. I have much itchiness and redness on the skin. Stomach pain.
Thanks for helping me. I was not aware that MCAS is related to inflammation my son’s allergies are always related to food and he always had vomits and diarrhea and very specific times rashes. I believe he had FPEIS to rice. We have controlled the trigger foods (no diarrhea or vomits anymore) but he’s still bloated and underweight but growing. One year ago he started with fevers that follow a pattern we are about to get a Periodic fever syndrome diagnosis.I really wonder if MCAS and PFAPA could be connected and maybe using some of the natural tratement that you mentioned could help.Btw PFAPA is controled with corticosteroids. Jill,I have been trying claritin once a day in the morning or Benadryl once in the evening (rather than the claritin) and I am noticing a MAJOR decrease in my night-time pain attacks due to my Crohn’s disease.
Since starting the histamine blockers listed above I have been able to stop taking nightly narcotics for the pain. I am also on Stelara so I need to figure out which is causing the breakthrough but the reason I tried this is because I was continuing to have pain despite the stelara. This could be a MAJOR breakthrough for me. I am going to do some experiments where I go off the histamine blockers for a week and see what happens, though I am reluctant to mess with a good thing. Very exciting.Eve. Carnahan,How does one get a diagnosis of MCAS? What specialist is likely to do the diagnosing or order more tests?
Immunologist, allergist, dermatologist? My PCP isn’t very open or helpful in discussing other possibilities of all of my vague symptoms. I have always had extreme/severe allergies that cause respiratory symptoms. I am very sensitive in general, to medications and environmental. I have seen an allergist off and on for about 15 years so I do have confirmed allergies.
Lately I have “unknown” allergens when I eat and cause nose stuffiness and some facial tingling but no answers as to what is causing itjust that I now need to carry an epi-pen with me. I have a chronic history of: joint swelling/inflammation/stiffness mainly in my hands and back, chronic headaches and 2-3 migraines a month, I bruise extremely easy, insomnia, i flush easily and get hives on my forearms, chronic vit D deficiency, osteopenia, and bone infections in the jaw (4 rounds of antibiotics for that). Starting in 2015 I noticed heart palpitations intermittently after I started antibiotics. They still come and go. Around the same time I started having low blood pressure and have had a few instances of passing out.
I was told by my PCP it’s probably just dehydration and to drink plenty of fluids. It’s frustrating to try to piece it all together and get answers. I don’t want to mask symptoms any longer. Love your article & it was recommended by my Rheumatologist. I’m labeled with lots of conditions, Unspecified IBD/IBS, Inflammatory Autoimmune Disorder, Chronic Migraines, CFS, Fibromyalgia & a mental case!
Recently diagnoised with Autoimmune Urticaria due to positive Basophilic Activation & a Mast Cell Disorder with extremely high IgE Fc Receptor AB & symptoms. Whatever the label is, it attacks my Skin, GI, Brain, Heart (Electrical) & my joints. I have 2 questions.1. Can this disorder cause lesions in the white matter of the brain on MRI?2.
Best approach in discussing Mast Cell Disorder with a doctor who is unfamiliar or doesn’t believe the condition exsists?Thank you for you time & education in these matters! I would say to really consider Lyme disease and co-infections, such as Bartonella, Babesiosis, etc. Lyme disease and its co-infections can cause all of those symptoms, including activate ‘autoimmune disorders’ in susceptible people. Possibly find a good Lyme Literate Medical Doctor (LLMD) or a Lyme Literate Naturopathic Doctor (LLND).
Unfortunately, the testing for these pathogens is poor, especially the tests from Quest and Labcorp. A good LLMD or LLND will use other labs, such as iGeneX labs, Galaxy labs, etc. There are other tests too, such as CD75 NK Cells test that seems to be better than most tests to help determine chronic Lyme disease, as well as how well your treatment is progressing. Hope that helps. Jill,Do you know if mast cell activation can cause fat malabsorption?
I had a 24 hour stool test come back positive for fat malabsorption but my stool elestace test was normal and hydrogen breath test was also negative. So it seems like it is not due to pancreatic insufficiency or SIBO. I also had a normal abdominal CT, colonoscopy and endoscopy so they don’t think it is crohn’s or UC. No classic gallbladder symptoms either so they are not sure what is causing the malabsorption. Mainly I have weight loss, diarrhea and left lower abdominal pain. I also have ehlers danlos and possibly pots. Thank you so much for your time!
Jill,Father to two year old with EoE. I noticed you mentioned that EoE may be associated to MCAS. I am curious as to your connection of the syndrome and the diseases (eosinophilic types) that typically are reactionary from IL-5, IL-13 and IL-33 proteins.
Is it possible that the underlying factor is the CAPN-14 gene or other genes usually associated to a specific organ tract? Or is MCAS associated with another gene and those organs? I have felt that histamines play a big part in EoE but I haven’t seen the scholarly connections between the two (H-1 and EoE). Jill,Thank you for your article.
I am wondering if MCAS can be triggered by extreme adrenal fatigue? My daughter suffered with all of the symptoms of MCAS and we were searching for a practitioner to help her with this when we ran across information on severe adrenal fatigue, which has many of the same symptoms as MCAS! Fortunately, treating her adrenal fatigue has stopped the symptoms of MCAS as well! No more daily hives! She is basically having salt daily and nano liposomal Vit C and starting glutathione. It’s amazing how much the salt helps!! So, just curious if there is a connection between these two issues?
I am the only one in my family that can’t handle the side effects of Synthroid. I get jitters, balance problems, and dizziness. I used to be on antidepressant but since I been off of them, all these symptoms happened. Still suffering almost 4 years now. I wake up with jitters, then it subsides when I get up.
I take Synthroid, then Lorazepam, wait an hour, eat breakfast and take Lisinopril (bp meds). The BP meds stops my heart racing and blood pressure going up from the Synthroid and the Lorazepam stops the jitters. When I wake up in the morning the BP meds and Lorazepam worn off and very bad jitters in the am. I got thru this cycle everyday. I feel the Synthroid causes my balance problem because back in 2007 I was on 150 Synthroid, was too high so they lowered and was fine, but was on antidepressant. The BP meds causes me dizzies cuz I never was on them in 2007, just had balance problems with no dizzies.
Today for the past 3-4 years both dizzies and balance problem. I hardly go out and need to stay on very low sodium diet to get less dizzy. If my BP reaches 105/65 and over, the dizzies get bad. Before ever on BP meds I used to be 120/70 with no problem. Now it feels like high blood pressure. I hate BP beds, makes me worse. I need help so bad, I don’t know what to do.
My psychiatrist wanted me to try Zoloft but scared cuz of possible hallucinations (not one of the common side effects, but I fear it) and dizziness where I have dizzies already. I don’t know what to do. Why can’t I handle Synthroid? The route cause of most of these symptoms and syndromes 61 different strains of the Epstein-barr virus and 15 different strains of the non rash shingles virus.
Medical science and Medcal Research cannot test for almost all of these 90 different strains and they are all viral infections. They are the underlining cause of Lyme Disease as well. Google author Anthony William and his book Medical Medium released in November of 2015. Lyme is not bacterial is an incredible claim to make and the detail in which the statement is presented in the book will unnerve those in the Lyme community because they traveled down the wrong road for the last 40 years.
Hi Dr JillI suffered an anaphylactic reaction to contrast media and iodine that messed me up. I was perfectly healthy before this and now got so many symptoms excersize intolerance, digestive issues, skin changes, loss of collagen in hands feet, it even gave me a dvt in the leg. I was so healthy before this and I marked off I was allergic to hey when I went for the cat scan. Can you reccomend what type of specialist i might want to see.to get tested. This happened to me four months ago in my home.
It was a delayed reaction and it happend like three nights in a row i had no idea what was happening to me. I appreciate suggestions you can give meMike. Jill,I am new to this. My 4 year old has been having reactions that have increased over time: flushed skin, all over itching, cough, dark circles under eyes, joint pain, constant stomach aches, irritabilityetc. She has been allergy tested for specific foods, molds, pollen, etc. All negative. Yesterday, her allergist discussed MCAS as the probable issue we are encountering.
Our next steps are to monitor and observe the foods she is eating and find the triggers and avoid them. (including activity and stress or frustration triggered symptoms have been observed.) In the mean time she is to take Zyrtec daily or Claritin, (this does not seem to make a difference.) and stop back in 6 months.I would like help in deciding what our next steps should be? What type of specialist(s) should I reach out to?
I would like some more secure answers and treatment. I want confirmation that this is indeed what we are dealing with. I want consistent effort in her care. I want alternative options for diagnosis and treatment. I need some more support and resources.
I am not confident in our current healthcare providers do to their lack of urgency for such a young girl to be experiencing MCAS. What can I expect for her/us? Will it continue to get worse? Is this precursor to something more?Your article and responses to others’ inquiring have so far provided me with more awareness on MCAS.Thank you,AmandaA very concerned Mother.
Thats alright! I’ve been having many of these issues myself for the past year. I can break out in rashes on my chest and or face and sometimes arms,i never know why. But recently i’ve realised i normally have face rashes,my resting hr is high of 120-125bpm,which flares my POTS symptoms. I feel nauseous,dizzy,the rashes can be itchy sometimes,i have IBS aswell and its normally after i’ve eaten food and weirdly enough,does not always happen the same way or always with the same food. I reacted to some food additives one day i believe and then a few days later i had something to eat with the same food additives and i didn’t have a reaction to that food. There are some things i’ll react too continuously eg.
Alcohol and such and alot of foods,such as apples. But some times,its really a mix and match of what i might react to that day. I’ve always had that though,just lately noticed the rashes and the tachy resting heart rate and very sick feeling all happen when ive eaten something my body decided not to agree with and even suffer with chronic reacurrent utis (looking into IC perhaps soon as we cant find a reason for it to be happening)My question is,i’ve always developed intolerences to things/allergies after a few months of eating/using them and then i always get continously sick if i have them after this has happened. Then i wait a few months i try the same food again and then sometimes i can be completely fine or get very sick.I’ve been considering looking into Mast Cell but always thought that you have to react to something each time,is this what happens? Or can it be just completely random luck? Jill,Someone mentioned to me that my 7 year old daughter’s “sun allergy” may be due to MCAS.
I looked it up and found your article. We have been dealing with eczema issues already for mainly the past few years. We are working with our integrative pediatric practice to try and figure out her root cause. She just had blood drawn for the ALCAT this week.
I have always questioned mold. How can we know if our house has mold or even her school? Can you give me anymore information on this sun allergy?
This just started in October this year at the same time she was taking some homeopathic metals drops from a Functional Dr we were seeing. Thank you so much for your help!
Hi I’ve stubbled across your paper on a bid to try and work out my symptoms and the fact that my body seems to be on self district ‘re reactions. I first started with latex reactions after dentist visits as a child. By my teen age yrs this was blisters and swelling. This in years since has lead to reactions to fruit mainly and some spices. In the last 2 years I now after a major rection to the dentist environment children being treated. They gave me a anti histamine which I also reacted to.
I’m now left that I react going into hospitals and have fits. I have suffered with Spontaneous (Idiopathic) Angioedema and Urticaria for more than 8 years. Facial swelling to the point of disfigurement and hives on my torso the size of dinner plates. I was tested for Hereditary Angiodema with results being negative. I was put on a regimen of Hydroxizine, Allegra and Zymetadine. While heavily drugged, I still had occasions of hives and facial or extremity swelling.I was put on injections of Xolair every 4 weeks (150 ml) and haven’t had any symptoms for more than 8 months.Anything else new for treatments? We sound the same, I have had chronic hives going on 5 years and have been on Xolair for 3 or 4 years now.
I also get two 150mg shots every 4 wks. It was a life saver for me as all the multiple other meds I was on at one time stopped working. I went to the ER covered head to toe in hives with trouble breathing. Epi and steriods did nothing, where in the past they worked. The ER then sent me away since they didn’t know what to do (scary situation) and told me to go see my regular doctor. I was super close to driving to MAYO clinic that day.
Luckily I was referring to a dermatologist who had one 150mg of Xolair and asked me if I wanted to try it (he had not given it to a patient before), I was desperate at this point and told him to go for it. Within 4 hours in was completely clear of hives.
JillI’m wondering if this might be my.problem. I have had chronic hives for going on 5 years with no reason why. I’ve taken a multitude of meds to control them.including 2 years of steroids mixed with other meds, finally they have me on Xolair, two shots once a month to control, although I still have break through hives. Could Mast Cell be the cause of this. I’ve had a partial knee replacement at 36 (March 2017), we were thinking due to the extended use of steroids (broke down cartilage).
I also have a multitude of other weird issue. And I need to find out what is wrong with me Thank you. Hello, Thank you so much for your article on MCAS. I have been trying to get symptoms under control for awhile. Wondering about palpitations. They were not mentioned here, but I have read in other places palpitations are common in MCAS. I have had many heart test and have been told by the cardiologist he is not concerned as there is nothing wrong with my heart.
Wondering about treatment for palpitations that worsen when eating or very hungry. PPI’s make the most difference – symptoms much less severe, but do not elevate them completely. Oral ketotifen (1mg twice per day) helped the first few days, but then stopped.
Have gone in circles with rheumatologist and family doc. Knees get watery, pain, unable to walk in a flare up. Thought dysautonomia was the culprit. Also started histamine blockers. Went to DNA expert. Told they could test for that but not treat, went, was told hearsay of my genetics and possibilities and testing was waived. Seen there is a DNA test for MCAD.
Mast Cell Activation Syndrome Glutathione
Kinda sore the experts railroaded me, presumably to set an example for going over the family crackpot. Any feedback is good.
Thank You Robert in ILL. Hi Jill,Love your article and can’t wait to show it to my hematologist and PCP. I just had a bone marrow biopsy and it was normal as I suspected. I have been diagnosed with multiple things that are on your list. I don’t get hives or a rash but I get this awful burning sensation from head to toe followed by nausea, vomiting, diarrhea, and horrible sharp pain in my abdomen. Sometimes I get a headache. I have been on Zyrtec and montelukast for several years.
Started having major flares starting last fall that kept sending me to the ER. I had stomach surgery in November due to failed nissen fundoplication which was undone and a Linx device was put around my esophagus. Since then I have only had one major flare and I think fewer flares is due to not being able to eat very much.
After this last flare a week ago I added Zantac 150 mg BID and it is helping tremendously. I still get some burning sensations and stomach cramping with diarrhea but it has improved. I have experienced anaphylaxis 3 times, 2 to medications and once to CT dye. I am trying to convince my doctors that I have MCAS but since my biopsy was normal they say there is nothing wrong with my mast cells. Where I live in Colorado there are no specialists that I am aware of. Do you know of anyone on the western slope who treats mcas? Thank you so much.
Thank you so much for this article. I have Endometriosis and chronic fatigue alone with migraines and chronicle inflamed sinus glands. All diagnosied.
I have a history of hives, skin irritation (now rosacea), sensitivity to foods, abdominal pain, swelling, itching, and heart “flutters”. I have seen specialist for almost everything but now would love to talk to someone more about Mask cell disorder.
It was something that was brought to my attention in an Endometriosis Group. I live near Seattle and would like to make sure I am seeing a dr who knows what they are talking about. I have had 8 surgeries in the last 4 years and am exhausted and want to feel better. Any suggestions of a great dr in my area? Thank you so much!
Carnahan:Thank you so much for all the information and insight you provide in this article. I have a particular question to ask you in regards to heparin testing, being one of a very sensitive and specific markers of mast cell activation.Laboratories that perform heparin testing, usually do Anti-Xa assay. However, they would like to know, if there is a need to measure fractionated vs unfractionated heparin (UFH vs LMWH).
Which assay is most appropriate and relevant for MCAS/MCAD diagnosis?Thank you in advance. Carnahan,So I am not going to bombard you with my medical history, clearly the fact that I am reading your article already tells you that I am having some issues, I am seeing a functional doctor but they are not the most informed in my case. I have a few questions that I would really appreciate you answering for me.1) Lets say you have a new patient that can’t afford functional testing, what testing would you recommend the patient do that insurance will cover to get the ball rolling?2) The same patient has tested positive for SIBO, IGM Positive for Yeast.
This patient is sensitive to histamine at the moment. What would recommend testing with first as far as treatment is concerned?3)Going back to question 1, what bugs should be tested for as well with the same financial restriction? Jill,I would like to share our 15 yr old daughter’s story in the hopes of finding answers of some kind. She is on state insurance (CHIP) here in PA and I am not able to afford taking her to a specialist out of state. Our daughter, Adie, became ill last December (2017) with two weeks of what they thought was the flu (and treated it as such).
She remained ill through January and into Feb, off and on. She got so sick that I took her to the ER where they thought she has mono, but it was negative. Her liver numbers were slightly elevated and her neutrophils were too low so they admitted her to Penn State Hershey Children’s Hospital. She remained there for three weeks. Jill,The only period of time in my life that I experienced severe mast cell disorder symptoms was from early 2013 through early 2018.
The worst sympyoms were large wheals on my feet, ankles, legs, wrists, and buttocks; also, severe brain fog and feeling drowsy all day despite good sleep at night. There were other symptoms, as well.Through trial and error “sleuthing”, I found out what the causes were, and was able to eliminate the MCAS-type symptoms.1) Excess oxalate deposition in soft tissues and bone, throughout my body.
It happened in part due to leaky gut caused by.2) Intestinal parasites!3) I also found out, through detailed testing, that I was severely hypothyroid!4) Severe, long-term hypothyroidism also had a deleterious effect on my adrenals.5) Also, post-infection SIBO was part of the problem.By dosing the right kind of thyroid meds, going on a low oxalate diet, using adrenal cortex supplements, most of the MAST cell symptoms went away. Now, I am addressing the parasite and SIBO issue.It takes testing and detective work; but the root causes of disease can be discovered and fixed. I am on h1 and h2 blockers and that helps me a lot.
But I still produce too much stomach acid probably from chloride issues in food.Can you combine h1 and 2 with proton pump inhibitors or should you use one or the other?Imam sure of not having too little stomach acid as I tested with HCL which made my chloride food problems even worse.I produce a lot of mucus, coming from the nose when my chloride level up and anything that increases stomach acid gives me trouble and makes my hair fall out instantly. ( also tapwater). Jill!I’m just now coming across this whole mast cell world. My symptoms seemed to have started when I was pregnant with my third child. (This is what sent me on the research path.) but now that I look back, I can see other times in my life that some of these symptoms may have existedmainly anxiety, random hives, GERD.During my pregnancy, I started developing strange attacks after eating. My heart would start racing, i would get flushed, dizzy, and my anxiety would shoot through the roof.
I would also get heart palpitations. I went to the ER twice. Everything was fine except both times my potassium was low.I am 3 mo postpartum, and I have seemed to have developed food allergies or sensitivities. I seem to react to everything quite honestly. Mostly I just itch after eating with some asthma like symptoms. I’ve put myself on a low histamine diet, and not only am I not consuming the amount of calories needed to support breastfeeding, I feel like it’s just not working.I don’t know where to start.
I suspect I could have SIBO too. But everything is so closely matching. My husband was treated for Lymes years ago.
The house we live in now did have mold that was removed. I have had more than my fair share of emotional trauma within the last year, AND I am post partum. I am a basket full of possible root causes.My main questionswhat do I treat first?Of the main natural treatments, what are those safe for breastfeeding mothers? Jill,I have “bouts” that happen without warning, usually after eating where my hands start to itch, skin gets hot/flushing, and almost immediately after is simultaneous vomiting and diarrhea, and a feeling like I am going to pass out. It is happening more frequently and getting worse.
The most recent event was earlier this month and I was so dizzy I couldn’t even walk. I had to lay in bed and was even finding it hard to breathe. This started about 22 years ago during my college years and would happen once every other year or so but now it happens several times a year. This year alone, I’ve had it happen three consecutive months in a row. I have noticed that terrible anxiety can also be a pre-curser. The last time it happened I literally thought I was going to die.What do you think this is?
What should I do? Jill,I’m trying to decide if it is worth looking into MCAS for my digestive problems or not. When they flare up I have lots of digestive problems, fatigue, tingling hands/feet, low iron, migraines, joint pain, muscle pain, raynaud’s, sinus problems, and all over itching. But I don’t normally have a rash!
(I have occasionally in the past, but it isn’t hives). It’s just this odd sensation of itchiness across my entire body. I’ve eliminated all of the foods that I know of that trigger symptoms, and that has greatly reduced my symptoms.
But I still commonly have GERD, occasional diarrhea, sometimes fatigue, and some joint aches. And I feel like I have this low(er) level problem that I just can’t solve. Does this sound like it could be related even though I don’t really get hives?thanks! Thank you for this information!
My son, who is 28 has had GI issues for some time. He’s doing better now but he has to take Creon as he does not produce enough pancreatic enzymes.
He gets hives pretty much every day. At first we thought it all came from Lyme some years ago but he was treated for Lyme. Then we came across some information about long term side effects from the acne drug Accutane. We think it may have more to do with that. My question is, he currently is taking something called Antronex by Standard Process which is yakriton that a NP doctor prescribed. He also takes D-Hist by Ortho Molecular. I saw you liked Umbrellux.
Is this a better fit for hives? Do you know about Antronex for histamine? I still believe there is a connection between his GI symptoms, the pancreas and the hives and that he can be healed.
He has improved with eating a very clean diet and lots of various supplements. I just know from reading about histamine that it’s not good for his gut. I would be curious if there’s a better supplement for the hives. Know anyone great in New York City?
We’ve been though a few trying to find someone smarter and more dedicated. My daughter was diagnosed with a solitary mastocytoma when she was 6. She has had issues right along with NSAIDs causing full body rash.
As a teen, she started having issues with peanut butter causing a huge gi flare and urgent bowel evacuation. She has since developed rashes with other foods. Her whole life eating has caused facial flushing, which has gotten worse. She has been on antihistamine and took herself off 7 months ago. Since this time all of her reactions are worse and now she is experiencing headaches, fatigue, flushing, achy body, depression, and anxiety.
First of all, can a solitary mastocytoma turn into mast cell activation syndrome? Or what else could it be? (her father was diagnosed with MCAS 5 years ago) Second, do those symptoms seem like they point to a mast cell issue? Her ANA was high, but every other test to point towards autoimmune was negative. We are in an MCAS ignorant state and we need to figure out the direction to go.
Her new primary care is willing to learn and help us, I just am not sure if this is the right direction to look. Any insights would be appreciated. Not even sure where to start.
My 34 yo son has had several flare-ups game f hives and swelling/inflammation over the last 25 days. Even ended up in ER twice. To date they’ve told him autoimmune or allergy.
He’s been taking prednisone and it totally disappears. As soon as he reduces the amount or quits, it totally flares. Also totally drains him. Allergist wants him off the prednisone so he can run tests, but both times he’s stopped, he had a major flare/up. Considering finding a different doctor or hospital with more experience or research with mast cells. We live in Michigan, so considering Henry Ford, U of M or St Joseph Mercy.
Any thoughts? Jill,thank you for this article. I started my journey with this nasty condition about 1 1/2 years ago. Since the first reaction, my life has been dramatically changed, as anyone with this condition know. My doctor is a specialist in the field, and I have even him stumped. How can I go about finding a doctor strictly for mast cell disorders? My immunologist believes MCAS is what I am dealing with, but he doesn’t have to testing capabilities where he is located.
Any help, advice you can offer will be greatly appreciated!Thank you for your time! I saw a GI in Houston, TX. When she did my EGD, she stated she saw a lot of mast cells in my upper small intestines. We also did a DNA/PCR stool, which came back for high levels of candida.
She said I have mast cell activation syndrome. She started me on Diflucan 50mg qd x 2 weeks. I have been sick since 5/2018 with diarrhea, nausea, vomiting, severe bloating, abdominal discomfort, headaches, severe brain fog, fatigue, fever, severe bile and acid reflux. I did inquire with her to do the 24 hour urine, serum tryptase, and bone marrow bx. She says I need to f/u with an Allergist. I also inquired with my PCP, and she says that is out of her scope of practice.
I have reached out to physicians with The Mastocystosis Society and some physicians will not see you unless you have all these tests completed while others specialize, like only mast cell leukemia. I do not know where to go from here. Any help would be greatly appreciate. Lola Normand. Hi Dr Jill,Thank you for the very informative article. I am in the UK and there seems to very little knowledge or acknowledgement of MCAS here but I suspect my son has it. He is 3 and has had symptoms from 4 weeks old.
He is diagnosed with an ige latex allergy, non ige food allergies and probable Histamine Intolerance. He suffers GI issues (vomiting is under control but still suffers mucus diarrhea a lot), skin issues, (itching, flushing, hives, (negative to ige allergies), thickened red skin with nettle sting type rash, discoid eczema), chest issues (chesty cough, asthma type symptoms, viral wheezes, chest infections), he does also seem to suffer anxiety to certain situations, but this may be age appropriate. His skin symptoms have been significantly reduced since following a low histamine diet. To my mind he fulfils a number of the criteria above but our allergy specialist pediatrician has discounted mast cell involvement.
Does this sound like it could be MCAS?I was diagnosed with CFS/ME in 2010, and suffer many of the symptoms (though have never suffered from hives etc) so I am wondering if perhaps I have an underlying mast cell issue.Are mast cell issues hereditary, could I have passed an underlying mast cell condition like MCAS to my son, but it just manifest differently?My son’s current treatment plan is to continue to follow our low histamine diet but try increasing amine active foods, but we are failing most foods we try (even low histamine). At such a young age are any of the possible treatments you have suggested appropriate to try?
(If I can even get a medical professional to consider the possibility!)Thank you so much for your help. HI Jill,I’ve just read a large portion of this info to my husband to help him understand what might be going on with me.We lived in a house with mold for 5 years and I was very unwell for the entire time. Multiple systems in my body were effected and sadly I went on untreated for 4/5 of those years. I discovered dr Richie Shoemakers info and began my healing journey. I’ve had a severe histamine issue the entire time and wonder if I might have been best buying shares in Zyrtec.We moved houses, leaving all soft furnishings behind.
My health began to improve immediately. Quality of life began improving over 18 months and then all of a sudden, like switching a light switch on, my symptoms came back! I went back to my integrative dr and we couldn’t work it out until one Monday morning in my classroom, I noticed a water line on my classroom carpet. There’s been a slow drip in a cupboard that over months, had leaked through a wall and into the carpet in my room. I’m 18 months on and still extremely unwell.
Brain fog, anxiety, hashimotos, sleeplessness, major Debilitating gastrointestinal issues, permanent severe histermine issues – Zyrtec almost daily. Wheezy chest especially on one side. Blurred vision – even with prescription glasses.Anyway, my work place don’t see an issue as they can’t see any mold!I so wish there was someone who could help me.
I feel like I’m slowly dying.some Students have hives and itchy skin, brain fog.Thank you for. I have suspected mast cell activation disorder (skin hives from sun with fatigue), and a mitochondrial disorder diagnosed via genetic testing (WES). My functional medicine provider recommended Huperzine A some time ago, and I’ve taken it with subtle positive effects. I have also occasionally taken Fexofenadine for the mast cell fatigue and skin issues.However recently I started taking a dose of each TOGETHER, and wow! The energy it gives me is incredible and lasts all day. I don’t drink caffeine but it is what I imagine that feels like. I’ve spent the past several days researching what could be happening between those two: Huperzine A + Fexofenadine, and am coming up empty.
Ideas?I know that Huperzine A is contraindicated with anticholinergic drugs, but Fexofenadine is not anticholinergic.
Mast cell activation syndrome (MCAS) is a condition with signs and symptoms involving the skin, gastrointestinal, cardiovascular, respiratory, and neurologic systems. It can be classified into primary, secondary, and idiopathic. Earlier proposed criteria for the diagnosis of MCAS included episodic symptoms consistent with mast cell mediator release affecting two or more organ systems with urticaria, angioedema, flushing, nausea, vomiting, diarrhea, abdominal cramping, hypotensive syncope or near syncope, tachycardia, wheezing, conjunctival injection, pruritus, and nasal stuffiness.
Other criteria included a decrease in the frequency, severity, or resolution of symptoms with anti-mediator therapy including H(1) and H(2)histamine receptor antagonists, anti-leukotrienes, or mast cell stabilizers. Laboratory data that support the diagnosis include an increase of a validated urinary or serum marker of mast cell activation (MCA), namely the documentation of an increase of the marker above the patient's baseline value during symptomatic periods on more than two occasions, or baseline serum tryptase levels that are persistently above 15 ng/ml, or documentation of an increase of the tryptase level above baseline value on one occasion. Less specific assays are 24-h urine histamine metabolites, PGD(2) (Prostaglandin D(2)) or its metabolite, 11-β-prostaglandin F(2) alpha. A recent global definition, criteria, and classification include typical clinical symptoms, a substantial transient increase in serum total tryptase level or an increase in other mast cell derived mediators, such as histamine or PGD2 or their urinary metabolites, and a response of clinical symptoms to agents that attenuate the production or activities of mast cell mediators.