Mast Cell Activation Disorder (MCAD), Chronic Illness, and its Role in Methylation

mastcellWhat do chronic illnesses such as Autism, Chronic Fatigue Syndrome (CFS), Fibromyalgia Lupus, Chronic Lyme Disease, Interstitial Cystitis, Multiple Sclerosis, and more have in common? Well, these illnesses may have a lot of things in common, and a lot of overlapping symptoms, but many patients symptoms seem to be compatibled with Systemic Mast Cell Activation Disorder (MCAD).

So what is MCAD according to Mayo Clinic?

Systemic mastocytosis (mas-to-sy-TOE-sis) is a disorder caused by a genetic mutation that results in an excessive number of mast cells in your body. Mast cells normally help protect you from disease and aid in wound healing by releasing substances such as histamine and leukotrienes. But if you have systemic mastocytosis, excess mast cells can build up in your skin, around blood vessels, in your respiratory, gastrointestinal and urinary tracts, or in reproductive organs. When triggered, these mast cells release substances that can overwhelm your body and result in symptoms such as facial flushing, itching, a rapid heartbeat, abdominal cramps, lightheadedness or even loss of consciousness. Common triggers include alcohol, temperature changes, spicy foods and certain medications.

A Slightly Better List of Triggers

The following “triggers” may influence a mast cell response: drug abuse, excessive alcoho consumption, preservatives, stress, sunlight, environmental toxins, bacteria/fungi/mold, artificial colors or flavorings, heat/cold, etc. Minimizing your exposure to these triggers may help redcuce you mastocytosis risk.

I know for a fact that many have trouble with one, many, or perhaps all of these triggers. From that list, I know alcohol, stress, sunlight, bacteria, mold, heat, and cold trigger my symptoms. The only thing I haven’t noticed as a trigger are artificial colors or flavoring, but maybe I am not paying close attention. Spicy food, which is not on this list can be another trigger for MCAD.

Mayo Clinic had a decent list at symptoms associated with Systemic Mastocytosis, but let’s look a little more in-depth of symptoms, since Systemic Mastocytosis has many of them.

The U.K. NHS has a pretty good list. The symptoms are a bit scattered throughout the article, so I’ll modify it a bit to make one complete list.

A Relatively Complete List of Associated Symptoms

  • hot flushing – described as a dry feeling of heat, rather than the sort of wet heat you experience when sweating
  • palpitations (irregular heartbeat)
  • lightheadedness
  • headache
  • shortness of breath
  • chest pain
  • nausea
  • diarrhoea
  • stomach pain caused by peptic ulcers
  • loss of appetite
  • weight loss
  • swelling of the liver, which can cause jaundice (yellowing of the skin and eyes) and make you feel lethargic
  • swelling of the spleen, which can cause abdominal (tummy) and shoulder pain
  • joint pain
  • swelling of the lymph nodes
  • weakness
  • fatigue
  • changes in mental state, such as confusion, irritability, poor attention span and impaired memory
  • urinary symptoms (needing to pass urine frequently, or pain when passing urine)
  • Low Blood Pressure (Hypotension)
  • dizziness
  • fainting (a sudden, temporary loss of consciousness)
  • blurred vision
  • general weakness

If you reach the state of anaphylaxis, you can even also have symptoms such as:

  • breathing difficulties
  • dizziness
  • swollen eyes, lips, genitals, hands, feet and other areas (called angio-oedema)
  • itchy skin or nettle rash (hives)
  • a strange metallic taste in the mouth
  • sore, red, itchy eyes
  • changes in heart rate
  • a sudden feeling of extreme anxiety
  • unconsciousness due to very low blood pressure
  • abdominal cramps, vomiting or diarrhoea
  • fever

While the NHS doesn’t mention hypertension, some patients may present with hypertension. Hyperadrenergic POTS can present in Mast Cell Activation Disorders. Hyperadrenergic POTS presents with orthostatic intolerance associated with an elevated heart rate (≥30 bpm within 5 minutes of standing) and hypertension (≥20 mm Hg increase in systolic blood pressure upon standing).

See Hyperadrenergic Postural Tachycardia Syndrome in Mast Cell Activation Disorders in the journal Hypertension.

Is There Research Connecting MCAD to Chronic Illness?

Ok, by now, you may be thinking, wow, I have many of the triggers and symptoms on this list, but is there research showing that this condition exists in various chronic illnesses? The answer to that question is yes. While there may not be a whole lot of research, Dr. Theoharides, the Director of the Molecular Immunopharmacology & Drug Discovery Laboratory, has put out quite a lot of research.

You can check out his huge amount of research here:

Treating Mast Cell Activation

While a lot of Dr. Theoharide’s research focuses on natural substances such as Luteolin for inhibiting mast-cell activation, and while he is the medical director of Algonot, it’s important to note that he receives no compensation from this company. I think it is important to note this fact because often when one has financial ties to companies or products, their research often becomes skewed or misleading. Algonot develops a supplement for MCAD called Neuroprotek that contains the bioflavonoids Luteolin, Quercetin, and Rutin.

There are pharmaceuticals for MCAD. Hydroxyzine preparations can be quite powerful, but usually require a prescription. Anecdotally, the combination of Zantac and Zyrtec (OTC at your local pharmacy) seems to work pretty well. Zyrtec is an H1 receptor inverse agonist and Zantac is a H2-receptor antagonist. However, even though these are over the counter, do not begin these medications without consulting with a qualified healthcare practitioner first.

Is MCAD connected to methylation?

This may be the million dollar question. There is not much information and MCAD and methylation, but I will end with a quote from the theory at

MTHFR Polymorphism may be a predisposing factor to mast cell disease. 5-MTHF regulates biosynthesis of BH4. The A1298 mutation in the MTHFR enzyme effects the conversion of BH2 to BH4. Less amounts of BH4 inhibits NO formation resulting in increased mast cell degranulation. Inadequate BH4 formation also puts a strain on the conversion of tryptophan to serotonin and tyrosine to dopamine, leading to low levels of the neurotransmitters: dopamine, norepinephrine, serotonin and melatonin.

Low blood serotonin levels help define a sub-group of patients with mastocytosis that are more likely to present with neurological and gastrointestinal complaints. Human mast cells can express and be activated through multiple serotonin receptors, and synthesize and release serotonin. Low blood serotonin levels in such patients may be the result of low BH4 levels due to 5-MTHF deficiency, the result of long-term malabsorption from chronic inflammation of the gastrointestinal tract or both, as is the case with me.

BH4 is a critical factor in cellular activities such as cell proliferation, cell cycle regulation and differentiation. Could BH4 deficiency secondary to MTHFR polymorphism be one of the fundamental mechanisms that underlie mast cell proliferation?

So the question I am left with is what substances should we try, or how do we modify our methylation protocol when it seems that MCAD may play a large role in the clinical picture. In the absence of improvement of MCAD type symptoms (without taking antihistamines or Luteolin-based supplements), would taking BH4 directly help? Is BH4 deficiency really the issue?

If anyone has any comments on how to address MCAD with methylation supplements, or if they have tried taking BH4 directly, please comment.

By geneticgenie | January 31st, 2013 | Posted in Uncategorized |

148 Responses to “Mast Cell Activation Disorder (MCAD), Chronic Illness, and its Role in Methylation”

  1. julie gregory Says:

    Interesting. How about a variation of the MAO A R2974 gene (rs6323)?

    It is also involved in dopamine, norepinephrine, serotonin and melatonin levels. I am DXed with MCAD and I have the TT allele.

  2. julie gregory Says:

    Aha, I found the BH4 connection via the MAO defect!

    MAO A: Monoamine Oxidase A
    Monoamine Oxidase A breaks down serotonin, a neurotransmitter that is generated from the dietary amino acid tryptophan, in a BH4 requiring reaction. Many anti-depressant drugs, including the SSRIs (Serotonin Selective Reuptake Inhibitors) work by blocking the breakdown of serotonin. Defects in serotonin metabolism have been associated with mood and neurological disorders. How best to address the MAO A R297R abnormality is not clear to me. As serotonin metabolism is adversely affected, individuals with the R297R defect should avoid large doses of high tryptophan foods (see appendix). High doses of St. John’s Wort, often taken to address depression, could lead to mood swings as serotonin levels fluctuate. Dr. Yasko recommends frequent dosing in small amounts of St. John’s Wort, 5HTP (a tryptophan metabolite), and the Mood S RNA formula if serotonin support is needed. If serotonin production is impaired on the basis of BH4 deficiency secondary to a Methyl Cycle abnormality, as the abnormality itself is addressed, BH4 levels should stabilize, hopefully normalizing serotonin production.

  3. admin Says:

    I have MAO-A homozygous and I can’t handle epinephrine at the dentist, SSRIs, etc. I have high norepinephrine as well. Stuck in fight or flight a lot, tachycardia, etc. In a bad mood almost all the time – sorry, can’t help it!

    So I was searching for MAO-A agonist, and this is all I found. It’s called Respen-A. I think it’s a transdermal patch if I remember right.

    I have never tried the RNA formulas because I never heard anybody using them and saying great things about them. Do they really work?

    You can only get it from a few pharmacies as prescription. They call it homeopathic, but it looks more like a diluted version of Resperine to me as the “homeopathic” has the same side effects and method of action according to their data.

    As far as fixing the problem. I can’t figure that one out.

    I don’t understand the frequent doses of St. John’s Wort. Isn’t there too much Serotonin? SSRI’s either drive me up the walls or put me in the fetal position feeling like I am going to die.

    I think the stress from being so sick made that MAO-A gene express itself in a bad way.

  4. julie gregory Says:

    Or too little serotonin? MAO is involved in breaking it down. Perhaps it is present in great quantities, but we are unable to utilize it? Yasko’s suggestions might make sense then…

  5. julie gregory Says:

    More musings on how the MAO-A homozygous status interplays with serotonin…

    A few months ago, I ran my “23 & Me” raw data through Prometheus and I recall one warning that I would need to be on serotonin for an extended period before seeing results. Might that be further evidence that we have trouble breaking it down/using it appropriately? Does that apply to the other neurotransmitters as well?

  6. admin Says:


    Initial biochemical studies reported that St John’s wort is only a weak inhibitor of monoamine oxidase-A and -B activity but that it inhibits the synaptosomal uptake of serotonin, dopamine and noradrenaline (norepinephrine) with approximately equal affinity. However, other in vitro binding assays carried out using St John’s wort extract demonstrated significant affinity for adenosine, GABAA, GABAB and glutamate receptors. In vivo St John’s wort extract leads to a downregulation of Beta-adrenergic receptors and an upregulation of serotonin 5-HT2 receptors in the rat frontal cortex and causes changes in neurotransmitter concentrations in brain areas that are implicated in depression.

    The science sounds a bit confusing if they got it right. My MAO-A may be downregulated (like most that have an epigenetic change in expression think) since I definitely have an excess of norepinephrine and since I can’t tolerate epinephrine. In theory, I think this should lead to too much serotonin.

  7. julie gregory Says:

    This is interesting. I found this blurb written by a woman, who is also an MAO-A homozygote:

    “I am MAO A ++, tested via Yasko. It means you break down serotonin much more slowly than most people. …But that also means that your levels can sometimes get too high temporarily and then too low in compensation.

    My serotonin shows up a bit low on tests, but this dysfunction means that I have to be VERY careful about any efforts to try to increase it. In particular, any interventions need to be very low dose, and spread out over the day (because too much at one time will spike me and cause my mood to plummet). I haven’ t experimented with little bits over the course of the day as Yasko suggests because by the time I got her results I had already balanced out my mood issues. I know that 5-htp and other serotonin boosters taken once per day made me really moody (which makes sense based on Yasko’s analysys). And my doctor’s attempts at prescription antidepressants were a disaster.

    This mutation seems to be part of what makes me naturally prone to mood swings – I can be perfectly happy one moment and then weepy the next (I’ve heard it can also cause aggression, though that doesn’t seem to be a big issue for me). I’ve pretty much eliminated that now through the supplements, etc. I take, but I know that my base state is much more moody than others. It also probably explains why I’m generally a very content type of person, though, so it’s not really a bad thing overall. And with my other mutations lowering my BH4 levels, this one may be part of what’s keeping me from getting depressed.

    In general, tiny tiny doses of most mood-affecting supplements, and spread out several times a day rather than all at once.

    The biggest differences in regulating my mood, personally, came from stable blood sugar (that’s my other issue, though, not necessarily related to this one. I was just made to be moody, apparently :Retro smile, Douglas Labs “Brain Calm” 2x/day, and dark chocolate in numerous small doses throughout the day. That last one seems to apparently be really critical for balancing me out, but I think that’s probably rare in the overall population. Can certainly tell when I’ve gone too long without my chocolate, though.

    For what it’s worth, Yasko’s observations based on my genetics have all lined up very, very closely with tendencies I was already noticing. I wasn’t sure how much to trust her at first, but I think she’s on to something. Not sure she actually knows how to truly cure things yet, but I give credit to her explanations of the reasons behind them.”

    So maybe rather than just being high or low in serotonin; it’s a dysregulation and we are prone to build-ups and shortages. THAT might explain why Yasko’s recommendations could work.

    Gotta LOVE the prescription for chocolate, but wouldn’t because of the sugar. Blood sugar issues are big for me too…

  8. Josie Says:

    Thankyou for this allowing me to understand how low B4 impacts – inhibits no production which leads to mast cell activation .

    High No also causes mast cell degranulation. No protects mast cells from activation induced cell death .

    Immunol Rev. 2007 Jun;217:186-205.
    The role of reactive oxygen species and nitric oxide in mast cell-dependent inflammatory processes.
    Swindle EJ, Metcalfe DD.
    Laboratory of Allergic Diseases, National Institute of Allergy and Infectious Diseases, National Institutes of Health, Bethesda, MD 20892-6961, USA. [email protected]
    Reactive oxygen species (ROS) and reactive nitrogen oxide species (RNOS), including nitric oxide, are produced in cells by a variety of enzymatic and non-enzymatic mechanisms. At high levels, both types of oxidants are used to kill ingested organisms within phagocytes. At low levels, RNOS may diffuse outside cells where they impact the vasculature and nervous system. Recent evidence suggests that low levels of ROS produced within cells are involved in cell signaling. Along with these physiological roles, many pathological conditions exist where detrimental high-level ROS and RNOS are produced. Many situations in which ROS/RNOS are associated also involve mast cell activation. In innate immunity, such mast cells are involved in the immune response toward pathogens. In acquired immunity, activation of mast cells by cross-linking of receptor-bound immunoglobulin E causes the release of mediators involved in the allergic inflammatory response. In this review, we describe the principle pathways for ROS and RNOS generation by cells and discuss the existence of such pathways in mast cells. In addition, we examine the evidence for a functional role for ROS and RNOS in mast cell secretory responses and discuss evidence for a direct relationship between ROS, RNOS, and mast cells in mast cell-dependent inflammatory conditions.

    sulphites activate mast cells in combination with NO – Biochim Biophys Acta. 1995 May 29;1267(1):41-4.
    Reaction of nitric oxide and its derivatives with sulfites: a possible role in sulfite toxicity.
    Harvey SB, Nelsestuen GL.
    Department of Biochemistry, University of Minnesota, St. Paul 55108, USA.
    The reaction between sulfites and nitric oxide or proposed carriers of nitric oxide (nitrosylated bovine serum albumin and S-nitrosoglutathione) was investigated as a potential source of the adverse effects of sulfites on biological systems. Rapid reaction occurred between sulfites and all of these reagents. Also, the ability of nitric oxide and these carriers of nitric oxide to inhibit platelet aggregation was reversed by low concentrations of sulfites. Counteraction of nitric oxide’s ability to function in cell signaling processes may be a major cause of sulfite toxicity.
    PMID: 7779867 [PubMed - indexed for MEDLINE]-

    TNFalpha from mast cells also breaks down tryophan leading to clinically low serotonin and melotonin .

    In the study you quoted on serotonin in systemic mastocytosis . yes a sub set of patients were found to have low serotonin but actually most pts were found to have high serotonin due to a second release of serotinin later in the day which didnt happen in the normal controls .This is seen as an explination for mast cells pts being unable to get to sleep in the evening .
    So the Bh4 involvement would be limited to the pts with low serotonin so would explain this subset of patients .

    This paper published last yr discusses the role of mast cell their triggers and chemicals relased in inflammatory conditions –

    I can see how changes in methylisation will fit into the pathophysiology of many conditions and this is an exciting development .But as yet doesnt completely explain mast cell activation .With the body being so complex this is not a surprise .Anything which advances our knowledge of how mast cells are activated and where the chemicals work will improve the lives of individuals me included ;-)

    my site covers most of the known routes of mast cell activation and research carried out on them and our knowledge of released chemicals .;-)


  9. Mast Cell Disorder Says:

    [...] as it is reported to be. Here is a link to help you understand more about this disorder: Mast Cell Activation Disorder (MCAD), Chronic Illness, and its Role in Methylation | Genetic Genie There is so much research going on in this area, it is mind boggling. A really great site to [...]

  10. LD Says:

    could someone tell me what Prometheus is and where to go to run raw data through it?


  11. Justine Says:

    Thanks for this great article. I know I am compound heterozygous for MTHFR from my Drs screening. We have 3 generations of MCAS and two of us have just sent away our samples for 23andme… Can’t wait to see what comes out of it.

  12. Justine Says:

    You can’t forget brain fog as a major symptom of MCAS. I was reading your article going wow how amazing to find this new article until I read the comments and realized I’d seen this back in March!

  13. shelley Says:

    I am a bit confused about the serotonin levels…can you take antidepressants to increase serotonin levels? My daughter has POTS and EDS and I believe MCAD…she is being tested soon for this and I have seen an improvement in her stomach issues with the histamine reducing diet and Neuroprotek ….thanks

  14. Lindsay Says:

    This article has some good info. However, the definition of Systemic Mastocytosis is quite different than MCAD/ MCAS. There are not excessive number of mast cells with MCAD/ MCAS like there is with Systemic Mastocytosis… There is a normal amount of mast cells with MCAD/ MCAS, they just are activated to degranulate by triggers. Here is a copy of the article my MCAD doctor sent to me.

  15. Kathy Tomasic Says:

    My 12 year old has POTS (dysautonomia) and MCAD. He is very gifted, and lately, when he studies for long periods of time, writes a research paper, or takes tests, he becomes sick afterwards. His lung capacity is at about 70% overall, but he can’t tolerate Xopenex or most steroids. We’re trying Intal soon. I’m wondering if he isn’t low on oxygen when using brain power, but normally he is at 97-98%. If anyone has any advice or comments, please send them my way. Alec is on H1, H2 blockers, Gastrocrom, Midodrine (vasoconstrictor for POTS). He is getting headaches and episodes a few times a week, now. Will oxygen help? Any other suggestions?

  16. Carol W Says:

    Sometimes blood levels do not reflect the ability of the cells to use the chemical reported. I read somewhere the the folic acid in the bread and cereal we buy blocks the receptors so that the cells are not able to manufacture the chemicals we need. I have just started taking L-methylfolate in hopes of seeing some type of improvement. I think the sites I have visited are Dr. Yasko and the man whose name I can’t recall, but is the one who sells the Life Extension vitamins. I am usually skeptical of anyone who recommends a supplement, then manufactures them to sell to you. That is one downfall of the whole theory. But I have been able to find studies done by universities that are reviewed by other medical professionals and do say somewhat the same thing. I figure, B12 and folate probably won’t hurt me. It will probably take years for the well-known labs to come up with the same information. Adele Davis talked about hydrogenated fats before I was born, and she was only proven right in my adulthood. Anyhow, this is a complicated issue and requires either a knowledge of biochemistry and genetics or a trusted guide.

  17. Mast Cell Activation Disorder (MCAD), Chronic Illness, and its Role in Methylation | Genetic Genie | ChronicFatigue Fibromyalgia Says:

    [...] Mast Cell Activation Disorder (MCAD), Chronic Illness, and its Role in Methylation | Genetic Genie. [...]

  18. Shane Says:

    Chocolate contains the purine theobromine. I believe those getting a benefit from dark chocolate are benefitting from increased synthesis of BH4. I’ve noticed the same effect myself.

  19. nicole Says:

    hi there
    i stumbled upon this site after receiving an mthfr diagnosis for my young son. he has many of these issues/symptoms.
    i tried to order yaskos test the other day but it said it wasnt open to NY residents. is 23 and me similar? the same? is there a way around the NY issue?
    ANY information will be helpful!

  20. Jandroid Says:

    Just want to be sure folks have clarity around the terms Systemic MCAD and Mastocytosis. MCAD (where D= disease OR disorder, variously) is used interchangeably with MCAS, which is related syndrome to Mastocytosis involving mast cells which are just more “trigger happy” (fire too easily) than they should/we’d like, but *do not appear in higher numbers throughout the body* as happens with Mastocytosis. This is a tricky distinction to make, and most doctors do not yet recognize MCAS, as word is still getting out on it. (Think of it as what you get when you’ve ruled out actual Masto, but still suffer like you have it). There’ also no single test or marker for it (unlike a nice juicy biopsy full of mast cells from either bone marrow, an endoscopy or your skin in the case of all forms of masto IFF the histologist stained the slide correctly with CD 117 or giemsa blue among other things – not commonly done, or an elevated serum tryptase level on even a good day for those with Masto – but usually only on a bad day with MCAS, if at all – not required!)

    A great resource to learn more about this is Dr. Afrin’s new chapter in a book I’ve yet to identify found here:

    Hope that helps. See also

  21. Lynn D Says:

    Was just about to ask what is diff between MCAD and mastocytosis and see the asnwer in post about mine.
    saw this info on mast cell activation syndrome-
    Had just thought lately was getting histamine rectiopns as have been reducing oxalates (slowly so dont get over reactions ) in the diet. Learned that can also create oxalates if bacterial, defic in B6,B1, fat malsorbtion.
    I had just started sneezing or nose running and since sneeze about once a year since stopped eating wheat, wondered why its starting back up . Learning theres more symptoms have that could be histamine reactions, stomach…Will see if can tell what sets them off more. was told dumping of oxalates does, wonder why it doesnt from eating them (really high in almonds ).
    Thanks for the ideas

  22. Jane Says:

    Nicole, order your kit and rebox it to send to someone you know in another state. They can open it, then drop the kit at the p.o. They are prepaid , fully labeled. NY sucks! You can do this test anywhere in the entire world except NY state. Unbelievable.

  23. Carolyn Tierney Says:

    Hi …I’m Carolyn I’m 52 years old and I’ve been sick for two years and every time I eat something my tongue would swell. I use to walk 35miles a week and go to the YMCA a couple times a week …as you can see I was very active.
    My eyes would tear all the time…I uses to be so nice now I tell people off. I do try not to now that I know it”s part of the Mast Cells….I finally just in the last 4 week got diagnose with Mast Cell disease my blood…I had so much histamine in my blood it was driving me crazy…The doctor gave me 5 pills a day and it was still coming throw….I want to tell you how my life has gotten better in the last 4 weeks…my girlfriend went online and found a doctor in Canada that wrote a book on mast Cells and to much histamine in your body Diet…And I”m tell you I have been taking my Meds and following the diet by the book …I FEEL SO MUCH BETTER…I used to wake up in the morning and have millions of little sissing pac men in my tongue arms and legs.And now I wake up and my body is really com. It”s not the wheat it’s the yeast…and so much more …Go on line and put in to much histamine in my body Diet and the Diet will come up …do it and you will feel so much better…It sucks but there is hope…XO Carolyn

  24. Carolyn Tierney Says:

    Hi it’s me again…I just went downstair to get the diet so you all will know how to get it..It’s amazing start going it right away….Dr.Joneja, by Mastocytosis Society canada It’s calledTHe Histamine& Tyramine Restriced Diet& Food Guideline for Mast Cell Disorders ….It a little hard at first because yu can’t eat any leftovers and you have to frezze alot of your food…you can’t eat annything with yeast at all…you can’t eat anything in a can. You can only drink water and coffee…Can you believe that I was drinking so much tea …you are going to dei when you see this diet …but you can eat vanilla ice cream…LOL I eat it every day.. Good luck …look it up right away and get creative….Alot of feeling better is the food you put in your mouth you won”t believe it….Carolyn

  25. jen Says:

    We use Neuro Biologix Neuro Immune Stabilizer Cream w/5 mthf and Calming Cream. My son is on h1&h2 blockers reg scheduled together & low histamine diet as well, he is 3 years old and also has 22q11deletion syndrome.

  26. Holly Glaser Says:

    I have a mthfr mutation c667t homozygous and have had two anaphylaxic reactions that were life threatening after taking two drugs

    1. Deplin: Four days after starting it, initially itchy neck, suddenly difficult to swallow > ERtreatment

    2. Cyanocobalamin injected: felt lightheaded, went home, 3 hrs later to ER

    Reading about mast cells: My dad had huge mast cell
    After exposure to bug killers- inch dial circles with red raised center- his docs quarantined him (1964) and feared it was smallpox.

    I’m wondering if this was histamine intolerance and also if it it’s related to me winding up in the ER twice with anaphylaxis.
    Your thoughts?

  27. Frances Wisniowski Says:

    Hello everyone,

    it is great to see other people putting these puzzle pieces together.

    I wanted to mention a couple of things that were almost discussed on this post and thread.

    MTHFR mutation is a precursor for the expression of many diseases, in particular genetic mutations of the mast cell.

    The MTHFR gene regulates the most important processes that control cellular growth.

    The two SNPs that have the most influence on the effectiveness of the MTHFR gene are the A1298 SNP mentioned in the post and the C667T SNP mentioned by a commenter.

    Basically, these mutations reduce the effectiveness of the gene, slowing or stopping downstream processes such as histadine catabolism, folate regulated DNA synthesis and BH4 generation. Those are just a few of the processes relevant to this discussion.

    In the beginning someone with these mutations my present with fatigue, mood swings, histamine related symptoms in the absence of a true allergy and may react strongly to foods high in dietary histamine.

    The underlying and more insidious consequence of the mutation is that your cells are less able to recover if they are damaged. This mutation is a predisposing factor to adverse long term systemic events following exposure to cytogenic, tetrogenic or mutagenic compounds.

    I will explain where I am going with this on my next comment,
    gotta go back to work.

    Hang in there!

  28. Frances Wisniowski Says:


    So I left off with MTHFR SNPs make cells vulnerable to other mutations.

    So what is the big deal with mast cells? Why do they get messed up and stay messed up?

    Mast cells are extremely long lived cells that respond to and initiate a staggering number of processes in the body. They exist everywhere in the body, most notably in the bone marrow, brain, connective tissues, muscles, skin, organs and mucous membranes.

    They are a huge part of our innate immunity and ability to heal wounds.

    As such they are often exposed to virus and bacteria that can cause mutations in the infected cells DNA.

    Normally your body would repair that damage without incident. However, those of us with one of the two (or both) MTHFR mutations previously mentioned don’t have that ability or it is flawed.

    This means that after an immunization or an illness your mast cells may take a hit that they can’t recover from.


  29. Frances Wisniowski Says:

    The mast cells do not always manifest the same mutation but the mutations that cause trouble are almost always on the c-KIT receptor of the mast cell. The c-KIT receptor is the stem cell ligand for the mast cell, controlling growth factor and is a major activating receptor for the mast cell.

    D816V is the c-KIT mutation seen in mast cell lukemia, mastocytosis and monclonal mast cell activation disease.

    Other activating c-KIT mutations that are as of yet unidentified cause GIST, vitiligo (there is a case study that suggests that vitiligo is caused by a somatic germline mutation on the mast cell c-KIT) and some cases of Mast Cell Activation Disease.

    These are typically treated with Imanitab (which bonds to the inactive configuration of the mast cell c-KIT, it doesn’t work with the D816V mutation because that mutation puts the c-KIT into a permanently active configuration).

  30. Frances Wisniowski Says:

    There are a number of viruses that cause cellular mutations, HPV, HIV, SV40 and any member of the poxvirus family.
    My own illness (Mast Cell Activation Disease, being successfully treated with Imanitab) began with a smallpox vaccine (live vaccina virus innoculation).

    Interestingly there is a paper that is referenced by the DOD vaccine safety board that shows that MTHFR mutations dramatically increase the risk of an adverse event following smallpox immunization, but the DOD review board decided that screening was not cost effective.

    Off the top of my head I personally know 9 individuals who have been damaged by vaccinia virus (various illnesses that all share that mast cell lineage) if you expand that out statistically that is potentially a huge population.

    Look at the sats for gulf war syndrome, just google search, and ponder what I’m pondering.

    Then add in all the spouses and kids who may have had secondary exposure.

    All it takes is the right combination of genetic predisposition and exposure

  31. Frances Wisniowski Says:

    to create the expression of a disease.

    Sorry for the odd breaks in my post.

    I post as bellagunn on genetic alliance rare diseases support group; another resource for grassroots information.


  32. Debbie McQueen Says:

    In case you’re not aware, the above contains inaccurate information. MCAD is not the same as SM. They are two different entities. MCAD is an allergy-like syndrome of unknown etiology; whereas SM is a myeloproliferative disorder involving heme. I bring this to your attention as erroneous information such as this only confuses the matter and perpetuates the misconception that SM and MCAD are one in the same, when in fact they are not.

    I have SM, have been off all mast cells meds for over 2 years now, and my reactivity is the lowest now that’s ever been in the 55 years I’ve been dealing w/this. I accomplished this by taking measures to alleviate the burden on my immune system which gave it the opportunity to balance (Th1/Th2) and heal. More specifically, that entailed reducing total body burden of toxins by addressing heavy metals and chronic infections once adequate methylation supports were in place, and through strict avoidance of environmental toxins including all processed foods. I imagine this same approach would work for MCAD.

  33. Eml256 Says:

    I would greatly appreciate if someone could list the “rs” number ( reference number) that corresponds to the c-Kit mutation associated with mast cell disorders.
    I attempted to discover the rs # to no avail so that I can check my 23andme report. Thanks

  34. Rebecca Says:

    Julie Gregory, was struck by your name, just finished a book by a Julie Gregory yesterday. :) My son has MCAD and is homozygous mthfr a1298c, along with a lot of other “bad” mutations. He is on a very full supplement protocol to help his methylation and detox. he also has a diagnosis of ulcerative colitis and EDS. My email is mdavis41, I added a space after the 1.

  35. eml256 Says:

    Does anyone know the “rs” # for the c-KIT D816V mutation? I have attempted looking for the info on my 23andme results. all SNPs are reported as “rs” #’s . thanks, madelyn

  36. Sue Says:

    I had a case if postpartum depression that lasted 6 1/2 years. Doctor said seratonin kevels were low. According to DNA tests I am homogeneous mthfr C677t and MAO.
    It is now, after 30 years, starting to make sense.
    Btw- I believe this was provoked my meds that were pumped into my body in hospital. I don’t think my body as able to methylate as I should have.

  37. John Says:

    I’m a 59 year old male and was diagnosed with Systemic Mastocytosis back in 1987. For many years, I experienced excessive bone pain (especially in my knees which I had to take cortisone shots to relieve the pain) headaches, pruritus and flushing just to mention a few issues I experienced constantly.
    In 2008 I was introduced to a dietary supplement – Prevennia which is a combination of four natural antioxidants. The doctors behind Prevennia have been focused on the prevention of cancer for over 40 years with over $38 million dollars of funding from the National Cancer Institute. They indicated that Prevennia could help me.
    I started taking Prevennia “twice a day” religiously since 2008. Last year I went to my doctor for my annual checkup and blood work. I was informed that my test results were the best results I’ve experienced since diagnosed with Systemic Mastocytosis back in 1987. As of October 2013, all my symptoms of my decease are “totally gone!!!!” I asked my doctor if I was cured which he refused to confirm but I can truthfully tell you, that ALL my pain is gone along with headaches, pruritus and flushing. I’m experiencing great energy and haven’t felt this good in years!!!! I believe I’m “CURED!!!”
    I recommend strongly that you research this incredible new dietary supplement with over 40 years of research and start taking it daily. This product is incredible and is natural!!!!
    Go to for all the information along with how to order.

  38. Elisabeth Says:

    Wow! I have been sick for three years and have been to a dozen doctors and no one can figure it out. I have many of these symptoms. What type of doctor should I go to? What type of tests should I request? I have been searching for an answer for so long. I am very ill. Thank you.

  39. Frances Wisniowski Says:

    @ Debbie McQueen, I appreciate your opinion but the general consensus is that MCAD which stands for Mast Cell Activation Disease or Disorder (depending on which paper you read) is an umbrella term

    “Mast cell activation disease comprises disorders characterized by accumulation of genetically altered mast cells and/or abnormal release of these cells’ mediators…..”

    perhaps you would enjoy reading the paper I have quoted, you can find it here

    Perhaps you should fact check before you jump on the high horse.

    Also, I would like to mention that I never said I had MCAS (mast cell activation syndrome) which what you clearly thought I was talking about.

    I said Mast Cell Activation Disease, I don’t typically post in detail the exact specifics of my diagnosis unless I feel that it relevant; ie someone is asking about experience with a particular form of mast cell disease for support purposes.

    I sympathize with your difficulties having SM but your attitude towards other mast cell suffering is repugnant in my opinion.

  40. Frances Wisniowski Says:

    @ EML256

    you can search the database by SNP

    but to answer your question the it’s


    here is the entry for it

    keep in mind this is not the only activating mutation that can cause KIT malignancy, its just the most common one associated with SM.

    when you are going through the 23 bad me raw data use the link to go to the dbSNP database for rs #s that you show as being mutated, keep an eye out for the yellow OMIM and yellow or red variant view flags.

    You can click those flags in dbSNP and it will bring up a detailed view of the pathogenicity of that SNP.

  41. Frances Wisniowski Says:

    @ John

    I’m a bit wary of over the counter miracle cure products but in all fairness our entire drug industry is a bit suspect, if it works for you and does what it says than awesome sauce.

    That just underlines the validity of treating the abnormal gene expression directly to shut down the abhorrent mast cell behavior.

    I have been switched from Gleevec to Sutent (which fits my particular KIT mutation better) and so far it is fantastic.

    The Gleevec was a huge improvement (0 anaphylactic reactions while on it until my doc lowered my dose and stress tested to justify the Sutent) but with Sutent I have my anaphylaxis under control AND have been able to add some food triggers/ high histamine foods back into my diet.

    So far so good. :)

  42. Tomato Says:

    Debbie McQueen, I am sorry you have systemic and hope you are healing. But I wanted to also correct you in saying MCAS is an allergy. That’s pretty dismissive. I have issues with my liver, my kidney’s, my autonomic system from it, so I would hardly call it an allergy. You were correcting one thing but sort of damaging another. Maybe you did not mean to come out that way. I know we all have good intentions.

    [email protected] Can you tell me more about Prevennia? Also am curious-since you are cured, do you still research or join these blogs to help out? Or are you still in the healing process?
    Thanks So Much,

  43. Lisa Says:

    Dear Frances Wisniowski,

    Is there any possibility that I can get in contact with you?

    You have got amazing knowledge which I would love to use for my health and my film!

    Kind regards
    Lisa Klit
    MTHFR mutation/MCAD/
    Documentary film maker

  44. tom miler Says:

    i have mast cell disease i started getting little dots on my skin now my body is covered with them i take zantec and zertec every day if i miss a dose the dots turn into hives i get aheadache is there anything that will make the red dots go away also 2 years ago i had black stool i had been bleeding in my intestine the jujunim they did sergery and found a growth as big as a tennis ball in there they said it was amast cell and removed it no one wants to help me my docter said i will have to take zertec and zantec for the rest of my life is there anyone who can refer me to a docter in colorado springs that can help me

  45. Annette Baker Says:

    The dr/researcher who developed Z & Z (H1 & H2 blockers) also developed NeuroProtek, NeuroProtek LP, FibroProtek & others especially for MCAD continues to do research. The NeuoProtek has helped many children with autism, as well as others. They have lessened the number & severity of my migraines.


  46. Audrey Says:

    Francis, I tried to search for rs121913507 in the browse raw data section and got this response:

    No SNPs matching ‘rs121913507′ found in the data from your chip.

    Am I not doing it right?

  47. Audrey Says:

    Does anyone know how to intrepret HNMT raw data or can you direct me to someone who does?


  48. eml256 Says:

    Frances Wisniowski , THANK YOU.

  49. Things That Plague Us: Mast Cell Activation and Histamine • MTHFR Living Says:

    [...] MCAD, genetically altered mast cells are overabundant, building up in the skin, gastrointestinal tract, reproductive organs or other places where they can cause trouble. Certain triggers then cause them to degranulate [...]

  50. courtney5168 Says:

    So happy I cam across this!

  51. Brandon Says:

    I have recently had issues with MCADS. Specifically to a medicine I had been taking for many years previously which was giving me anyphylaxis. I do get mast cell symptoms from other things like mold but nothing is as severe as to that one medicine. Any reason why I could start reacting like that all of the sudden?

    Also, I have been on a methylation protocol for about a year now. I never had anaphylaxis before starting the methylation protocol. This makes me question if this has something to do with BH4. Would supplementing BH4 perhaps lessen MCADs symptoms? Could adequate BH4 supplementation fix the issues of MCADs? Are there any methods of increasing BH4 without high doses of methylfolate or supplementing BH4 directly? I have been having troubling finding a source for pure bh4 and I cannot tolerate high doses of methylfolate.

  52. John Kelleher Says:

    I’m also MAO-A homozygous and have trouble with both serotonin and dopamine– me I become homocidal. Personality probably plays big role in how this mutation express itself. I lack emotions and empathy (like 6% of the population) so I lack the mood swings even though I suffered from paranoia, psychosis and cognitive disorder. I’ve actually been diagnosed with schizoid personality disorder which is perhaps the only thing psychiatry got right which I’m sure was an accident. Thing is the paranoia and psychosis was organic. I’m on methylprednisolone, an immune suppressant which makes these symptoms autoimmune dementia. Something to consider when plagued by out of control emotions.

    Much of methylation takes place in the liver and a toxic inflamed liver can cause organic mental disorder. Toxic overload can also lead to cognitive disorder. I notice some relief from aphasia after using activated charcoal to detox. My biggest trigger for aphasia is environmental– noise can send me right into receptive aphasia. A constant productive aphasia is usually always present though. Any relief is a welcome thing.

    Methylprednisolone and activated charcoal can be had relatively easily and may provide a positive indication for organic mental disorder. Something to consider?

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  55. Cindy Says:

    I read through all the comments. 2x’s people have asked what type of Doctor treats this illness. I am curious too. What type of doctor would one go to if they suspect they have this? An allergist? I know for a fact that normal practitioners would look at you cross eyed if you brought this up. Even a hematologist at the Cancer center wouldn’t have a clue. All I see instead are folks who want to talk about themselves… So tell me – who or what type of doctor did everyone go to for their diagnosis?

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  58. Frances Wisniowski Says:

    @ Audrey:

    If the rsID does not come up in the 23andme raw data search it means that there was no information for the SNP in your test, or they did not test for it.

    23andme is not very reliable to genetic testing (it is a bit like taking a fuzzy Polaroid) but for many of us it is the best option available.

    My colleagues and I were able to use 23andme test data to justify the use of sutent but it is not very firm data (my geneticist friend does not agree with my predictive model and wants a full KIT sequence performed, I can’t say I blame him as I am using a novel approach based on computational data derived from a series of papers that tested lab created SNP’s against a panel of TKIs, there is more to the picture than one SNP!)

    So in the meantime we are trying to manifest the funds for a full KIT sequence (wish us luck with the insurance provider… this point I am considering crowd sourcing, LOL!), science plods forward, one step at a time.

    Check the phoenixrising forum for HNMT info, there are a lot of good threads there!

    @ Lisa

    You can drop me a friend invite on Inspire, my screen name is bellagunn

    or you can message me through facebook (Fran Wisniowski)

    I would like to hear about your project.

    @ Cindy

    It takes a village……… there is no such thing as a ‘mast cell doctor’, the closest thing is a hematologist/oncologist and even then only if you are lucky and that particular doc has an interest in mast cell disorders.

    To date I have seen an allergist, GI doc, hematologist/oncologist and dermatologist.

    Other people have told me they have seen an immunologist, geneticist, rheumatologist, naturopath, psychiatrist (some meds that are used for mental heath disorders are efficacious for MCAD).

    Getting a diagnosis is often a harrowing and difficult journey as patients get bounced around from one specialist to another.

    I got really, really lucky to see an allergist who right off the bat suspected mast cell disease (he thought mastocytosis) and referred me to a hematologist oncologist friend of his who suspected MCL (thank goodness he was wrong) but it still took us a another 2 years to get to a diagnosis (all this time the actual field of mast cell research has been changing dramatically and new diagnosis are becoming possible thanks to the efforts of Dr. Afrin et al).

    @ eml256


    @ Brandon

    Good question, difficult to answer, low BH4 can lead to increased mast cell degranulation, it may be with trying to push a supplement, however I am not sure how bio-effective it would actually be as I have no experience with those types of supplements

  59. Christy Says:

    I have had 2 24 urine tests done and my histamine levels are off the charts!! 2600! I have had anaphlix shock since April and many ct scans and lab work done all negitive except extremely high white cells in my urine. Drs here won’t do anything and left in limbo!! I have left side pain and swell an double in size all the time. The only thing keeping me going is massive doses of presidone. I’m weak dizzy fatigued yellow around my eyes can’t catch my breath and my blood pressure is high. I have a constant joint pain numbness in my face head and neck and no appetite and stay nauseaus! Please help I don’t know what else to do

  60. Terry Blinkenberg Says:

    thank you so much for this website! I feel like I have wasted over 10 years of my life with specialist after specialist and you guys were here all along to help where no one else could. I forwarded this website to my allergist who has been at her wits end along with my rheumatologist (and GI, endocryn, cardio) to figure this things out.
    I am homozygous MTHFR C677T and MAO-A…. But what has been baffling everyone chronic low grade temps and constant anaphylactic reactions. My food lists keep dwindling every year.

    My latest blood-work showed depleted Seratonin (which no one knew what to do with) even though I’m on 2 antidepressants (high doses). Reading the information here, it’s all making sense.

    But I was wondering if anyone knows of any correlation between Chromogranin A levels and MTHFR/Mast Call Activation Disorder? My levels are 4x higher than the normal high. But no tumors have been found and my H1AA are normal and I’m not on any Proton inhibitors at all. Any help would be greatly appreciated.
    Thank you all so much

  61. SeekingHelp Says:


    I am searching for some answers and based on these comments I hope that someone can help me.

    I am heterozygous for MTHFR gene A1298C. I have had unexplained gastrointestinal issues for the past 4 years, headaches, chronic pain, etc. All of my GI tests come back normal. My symptoms started after a chicken pox vaccine booster and a mono infection. I am wondering if anyone else has had an experience like this?

    I think I may have mastocytosis or something in that family because of the way that my body responds after eating. I have done serum and skin allergy testing and no foods came back as triggers. I have been gluten free, egg free, milk free, etc. but that has also no alleviated my symptoms.

    When I eat, I experience a state almost like someone has drugged me. It is primarily with larger meals involving meat/chicken, but sometimes even a salad can cause it. My head hurts but in a non migraine way. It’s more like a hollow, tense feeling, I can’t think straight, I feel incredibly nauseous, my nose, mouth, and eyes get incredibly dry and I can barely function. I normally have to lay down for at least two hours after eating-not because I am tired but because I can’t think straight and I am lethargic. I don’t have any spots on my skin that would aid in mastocytosis diagnosis. If I do have mastocytosis, I think it may be systemic.

    I am sorry if this post seems disjointed. I am just trying to find someone who has perhaps had a similar experience.

  62. MKW Says:

    I have all the triggers and symptoms of SM (Systemic Mastocytosis). It has made me incredibly sick, so sick I thought I was dying my my more dramatic moments before I found out what was wrong with me. I’m now incredibly better due to various treatments including Gastrocrom, Diamine Oxidase (ingested histamine metabolizer), DHA, D3 and Glutamine.

    However, as regards diagnosis… my allergist says SM is extremely serious, “as serious as cancer” in his words… so he is only willing to diagnose me with MCAD.

    This makes no sense to me. I’ve read the comments above about the differences between SM and MCAD. And when I read the UK government page about SM/MCAD linked above, reading the list of triggers and symptoms was like reading about myself, word for word, every single thing.

    I know that in the end, whichever I have (SM or MCAD) it’s incurable, and the treatment in my case will be the same, which thankfully is really quite effective in mitigating the many symptoms, which had made my life almost unlivable for a number of years. (My new nickname since starting treatment is “Lazarus” I’m so much better).

    So I guess my question is… does accurate diagnosis matter in the long term? For my own peace of mind it does matter. I’m almost sure I have SM. I’d love to hear comments and thoughts from others about what I’ve written, thanks.

  63. geneticgenie Says:

    I think some people that have MCAD-like symptoms may have parasitic infections and exposure/infection with certain fungi. This opinion comes from personal experience (and research).

    Mast cells can induce damage and worsen outcome during some infections:

    Importantly, while mast cell responses may act to increase host defence locally at the site of infection, it is also possible that mast cell–mediated enhancement of inflammation could induce damage of host tissues and worsen outcome during some infections.

    Protective role of mast cells against parasites:

    The first evidence supporting the protective role of mast cells against pathogens came from studies of parasitic infections including helminths, nematodes, and protozoa

    Mast cells and fungi:

    The role of mast cells in the pathogenesis of fungal infection is even less well understood. In vitro studies have found that mast cells released LTC4 in response to zymosan, a Saccharomyces cerevisiae cell wall preparation [5]. A single study examining the interaction of live fungi and mast cells in vitro found that Aspergillus fumigatus hyphae induced degranulation of mast cells via an IgE-independent mechanism [19].

    Of course, there is a million and one rabbit holes you can go down, and of course many cases may be currently incurable. But just some food for thought.

    This review has a nice table of differential diagnoses.

  64. jene Says:

    I tried pushing MTHFR supplements to overcome a possible low BH4, and it seemed to be somewhat helpful for several symptoms, though I worked up slowly over many months so it’s hard to tell what changes are from the MTHFR supplements, what are simply changes in illness level that won’t last, and what are from other causes, such as more judicious avoidance of mast cell triggers and various other treatments, including high dose antihistamines (H1 & H2). The folks at the phoenixrising CFIDS forum recommend some MTHFR supplement protocols, and also suggest using high dose 5-MTHF (with methylcobalamin and other supps) to increase BH4 and overcome “MCS”, but I suspect many MCS sufferers actually have MCAD or SM.

    Has anyone with atopic tendencies had benefit or detriment from allergy shots?

    Does anyone also have fungal issues, were they made worse by mast cell stabilizers (so the MC’s can’t fight the fungus as well), and what did you use to take care of the fungal issues?

  65. MKW Says:

    Jene – I have had fungal issues, and never made any connection with MCAD before. I was just made extremely sick by a strong RC Anti-Fungal cream, which completely destabilized me (I have been doing great on Cromolyn Sodium and DAO).

    Re: MTHFR – so interesting you mention this, I’m just about to ask my Doc about MTHFR connection today, as I tested positive for the gene and am only just learning there may be a connection with MCAD.

  66. Lee Says:

    Hi, I was wondering if anyone here could offer me some input, as there seem to be a few well informed people. First allow me to say that I have no genetic testing results to offer. Just a puzzling suspicion that mast cells/histamine may be involved in the issue.

    Several years back I was forced to have my son vaccinated with the chicken pox vaccine for him to attend school. Within days, he broke out in what I thought was breakthrough pox. However, from this it turned into the most horrific case of cystic/nodular acne. His back is completely covered with it. This has continued for 5 years. No treatment has worked and we have tried them all short of Accutane which I am having no part of.

    I have long suspected the vaccine caused this and I see mention of vaccines triggering these sorts of problems by at least one poster on this blog. The doctors all think I am mad and claim its due to puberty, which apparently occured in the 3 days between the vaccine and the outbreak….whatever!

    As I mentioned before, there are no genetic tests I can provide. However, I can say there are a lot of healh issues in my family line that make me wonder. My sister has a boy with autism. We all suffer from itching, skin writing (hives/welts from pressure on skin like a pencil, also called dermographia). Anxiety disorders, etc.

    Additionally, I’d like to add that other than eczema on his cheeks as a baby, which healed with adding of essential fatty acids to his bottle, his skin was clean and clear.

    Would anyone care to offer any input they may have? Or am I indeed one of those crazy moms the doctors like to make fun of? Thank you

  67. Ashley C. Says:

    I’ve been suffering from mast cell issues for over a year and a half, including severe anaphylaxis. I also have the mthfr homogenous gene mutation. I have found significant improvement of my symptoms by taking methyl folate plus 3 times a day. I went from being rushed to the hospital every week to only havine one severe episode since starting methyl folate 2 months ago.

  68. cathy Says:

    @Ashley C…….which brand methyl folate do you take and at what dosages. Thank you. I have had anaphylaxis probably associated with a prescribed drug.

  69. Ashley C. Says:

    @cathy – I take Neuro Biologix Methyl Folate Plus with Activating Co-Factor. It is available here:

  70. Jessica Says:

    This is a great post, thank you. I echo Elisabeth’s question: what doctor should I see to find out more about my mast cell activation disorder? I have Ehlers Danlos with MCAD but don’t know much about MCAD, I would like to know more. Advice is appreciated!

  71. Robin Says:

    I have a doctor to recommend – Dr Mike Cantwell at, 415-795-1202, he’s in San Francisco, he specializes in treating people with chronic illnesses and he understands the results from 23andme testing and how to treat. He wants to see people at least once and after that he’s willing to do phone consultations.

  72. Thom Says:

    My head’s spinning after reading all of this. We’ve been going around for years. My 17 year old son has POTS and most of the symptoms listed for MCAD, but none of the doctors (and there have been many) has ever mentioned this. To complicate things, he has Lyme Disease and his immunoglobulin numbers are low. Does anyone know of a doctor in the Northeast who deals with this?

  73. Emily Says:

    Your son and I sound like we have very a similar work up. I see dr mark sivieri in Columbia, MD. excellent doctor, very knowledgable about all of the illnesses you mentioned and he is working hard to help me feel better.

  74. Brighty Says:

    Any and all allergies/ allergic reactions are in the Lymphatic System. And with the genetics and constant assault in our bodies with the SAD (sad American Diet),and poisons from the water, sky, and chemicals. That can slow down and even stop kidney filtration. Most elimination systems in the body are slow or stopped. Yes lymphatic as well!
    Glands also are not working optimally. So the body is not functioning, absorbing nutrients, and eliminating. I have this and a list of other diagnosis. Meds ( mental, pain, and daily) made me fat, sad, and fear of no happy future.
    I’ve studied herbs for over 10 years and became a Detox Specialist. I chose this path because I did it on my self and it worked. I don’t recommend ever buying isolates( MSM ,ect) or a bunch of supplements. YoutubeDr.Mores watch oldest videos /lymphatic videos! Your intake is your first thing to change.
    Glands and the lymphatic system and elimination should be the main things you concentrate on. I’m on Facebook if you need questions answered! Hugs

  75. Marie Says:

    Pteridin-4. Yes, BH4 directly makes a huge difference. I also stopped the 5-HTP that preceded my Mast Cell issues. Pteridin-4 has a bio available Methyl folate as well. My hair has stopped falling out. My energy is back. The bloating is abating.

  76. Shaun Says:

    As for what type of doctors–In my case the gastro specialist was the best to make the Mastocytosis diagnosis, as it manifests in the GI system commonly. I got lucky and had a great one, who although had never seen it, knew during an upper GI to take a sample and test for number of mast cells. All of my blood tests are normal, but the GI sample was clearly an overproduction of mast cells. Both he, and an allergist treat me in combination for the likely MCAD and Mastocystosis, and an electro cardiologist for the POTS and suspected EDS.

  77. funmthfr Says:

    Does anyone with the issues discussed here have low libido or anorgasmia?

  78. Dan Says:

    This is in reply to Ashley above, who found relief using a product called “Neuro Biologix Methyl Folate Plus with Activating Co-Factor”.

    I noticed that is has 125 milligrams of niacinamide in it, which I found surprising, because niacinamide increases histamine levels.

    I’m just wondering if you’re still finding benefit from this product?

  79. Sarah Says:

    Wow…this is a lot of information to take in! I am compound hetro for MTHFR and have recently been having crazy things going on with my body. I am taking tons of supplements and am willing to try anything to feel better! Sooooo, I am still kinda confused with all this info…can someone tell me what I should take to see if it helps? Also, to the above comment, I take Niacin everyday because it is supposed to help with your nervous system but the comment suggests maybe I shouldn’t take it??

  80. Tamra Mac Says:

    Thanks for all this info. I am a 51y/o female with Eds 3, bilateral shoulder fusions as a result of eds. I have most of the symptoms of mast cell problems. I was tested last week for mastocytosis by my rhuemy. I am awaiting results. No genetic testing except for connective tissue disorder. Hopefully this is the beginning of hope and answers. If not, I feel like I’m gonna die before they figure it out or send me away with some absurd opinion simply because they lack knowledge which promotes the over active ego. Lol. I am 5’7 96lbs!!! I lost 40lbs in 2yrs unexplained. Then the GI nightmare crap that caused my insides to swell to the point of dislocating vertebra and ribs ..eds! Ty for all sharing.

  81. Bonnie Says:

    Have you tried Neuroprotek or Quercetin? I am on double dose (20 mg) Zyrtec, nasal steroids, inhaled steroids, and for the past week have had generalized itching and flushing/burning sensations. And red flares on my skin when it is bad.

    I have read that one has to be careful with taking the flavanoid Quercetin because it is metabolized by several liver cytochromes that also metabolize meds, and can alter the level (in either direction) of the med. Since I am on high dose of Zyrtec, I wonder how much of an issue this is. I’m also now on antidepressant because the symptoms are making me very anxious.

    I have had similar episodes before, where the itching lasts for about 10 weeks. This time it started after planting outdoors. In the past it has happened following a stomach flu or other reasons.

    Has anyone found anything that works for them?
    Any experience with supplements when already on prescription meds?
    Any experience with Montelukast (leukotriene receptor inhibitor)?

  82. Teresa Lipot Says:

    I know many have asked how to find a Mast Cell doctor. I contacted Valerie Slee…she can be found at the Mastocytosis Society website and Facebook page. She is an RN and very involved with the International Mast Cell conferences. If you PM her at the Mastocytosis Society FB page…tell her where you live she will give you the name of a Physician who is recognized by this organization. I see Dr. Terry W. Chin a Pediatric Pulmonologist out of Long Beach CA. The other So. Cal Physician is Cardiologist Thomas Ahern out of Scripps. Harvards Brigham and Womens has Akin, Castells, and Theoharides. Best wishes!

  83. Teresa Lipot Says:

    Does anyone here know how to contact Frances Wisniowski? I do not understand MTHFR and how to apply it. We lived in a house with mold, both me and my two sons are allergic to antibiotics (which are made from molds). They were both Dx with Esinophilic Esophagitis. I also became ill and was eventually Dx with Mast Cell, POTS and I am now being worked up for EDS. My oldest son was hospitalized with “Acute Myocarditis” in December. There is a Mast Cell condition called Kounis Syndrome. Dr. Theotheohardies is the U.S. expert. I asked the Hospitalist to add H1 and h2 blockers to his treatment and his Troponin dropped from 11 to below 5. No cardiologist I have spoken to is aware of allergic or Mast Cell cardiac issues. Very alarming.

  84. Teresa Lipot Says:

    Also, Dr. Diana Driscoll of the Pretty Ill YouTube videos has lots of interesting information on Mast Cell, Ehler Danlos and POTS. I have found the FB support pages invaluable sources of information. I was happy to run into this. Thank you for your excellent input!

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    It is not sold in the U.S. Clinical trials were begun in ?1982
    but for some reason were discontinued – perhaps they thought there would not be enough need. I obtain it
    through North Drugstore in Canada. Many Canadian drugstores can order it for you. They require a prescription from your Dr. You may have to insist on it. It is manufactured in many countries. I buy only the brand name, not generic as I have had lots of trouble with three generic versions. I take 1.5 mg in a.m., and 1 mg in p.m. I have not heard of a limit to its quantity. *There is one caution*: When begun one has to take very small amounts initially as it causes initial dizzyness. I.E. 1/2 mg once per day for several days, then 1/2 am and 1/2 p.m., then 1 am, 1 pm. Then, adjust to your need. After 30 years of pure hell and 64 of the 75 symptoms I have found connected to Mast Cell Disorder – I could breathe and function again. And…the 64 symptoms have been well controlled. ZADITEN
    (Ketotifen Fumarate). (I first learned of this on reading
    an article about Dr. Jackson Roberts, III, at Vanderbilt University who was using it to treat 600 patients with a subset of Mast Cell Activation Disorder.)

  86. Hannah Says:

    I got diagnosed with Mast Cell Activation syndrome in 2010, I ended up going to Boston for this diagnosis as I spent seven years seeing multiple specialists in the UK but they could never figure out what was wrong with me. I have recently started blogging about it all to try and reach out to others and help in anyway I can because it is often linked to lots of other chronic illnesses and its difficult living with it on a day to day basis. Please have a look

  87. Leslie Says:

    My 8 yr. old daughter has just had labs come back with high typtase and we will be doing more testing down the line of mcas. Doctor wants us to do “kit asp 816 val mutation analysis”, does anyone know about this testing? All I read about here is the 23 and me?
    Thank you all for all your amazing information on this site!!!

  88. Dana Says:

    Please research high unbound copper (copper toxicity) and it’s relationship to histamine response … Also lithium oratate helps regulate serotonin…. Are you low in lithium??? Check a hair test… $90 direct health care access online…. And discover Walsh institute and mensah medical group and find relief for your methylation and histamine issues!! if you need help discovering if you’re copper toxic please find me on Facebook…. Dana Summers… Best wishes to everyone on the health journey

  89. John Kelleher Says:

    Having an MAO A & B genetic mutation is not totally unheard of condition, you are basically on a non-selective MAO inhibitor. Get your doctor to understand that and maybe they won’t kill you or vice versa. Mast cell activation and hyperadrenergic POTS are both out of control norepinephrine. Norepinephrine promotes cortisol normally which is an anti-inflammatory however without the enough cortisol to shutdown the norepinephrine will active immune cells and mast cells are the first responders.

  90. Jennifer Says:

    Hi Everyone.

    I run a Facebook group called Mast Movement that mainly focuses on Mast Cell Activation Syndrome. We have over 70 files, a welcome packet, doctor’s list, and basically how to navigate this disorder. I had a very severe case of POTS and it has been eliminated with effective MCAS treatment. Please feel free to come check out the page!

  91. Sabry Magdy Sabry Says:

    i am a professor of ENT from Cairo Egypt.
    i am one of the victims of MCAD which i suffered from all my life and have just recently beingdirected to go through the diagnostic trck for such lifetime illness.
    It affected all my body organs but mostly GIT and spine with lately affection of peripheral sensory nerves.
    I hope it can be clearly diagnosed and treated not siming full cure but at least a reasonable tolerable form of living with arrest of further deteriorstion.

  92. CHarleah Says:

    I applied to your Facebook page, It says it is a closed group, I was diagnosed with Fibromyalgia and chronic fatigue 11 years ago, My whole life I have reacted to strangely to things. ,Allergic to mold, dust , heat a lot of smells. But just started putting all the pieces together, strangely after I started eating health high histamine foods, and tinnutis ( does that ever go away). heart rate soring after certain foods or just standing. AND NO SLEEP. That is big. Any ideas on sleep? I got the 23 and me done. I am hetero1298 and 677, homo MAO, hetero DAO and homo BH8,and others. I live in Raleigh NC. Not far from Duke, it seems that this is something brand new when you talk to the doctors. I need a doctor that understands how to test and treat, I am 58 and tired. My son had all of the same mutations, my fight is for him more for me, It would me great to get some answers so he can live a full life.

  93. Mary Lewin Says:

    I have periperal nerve damage in vesitublar system and some problems associated with MCAD. I would like to get in touch with Sabry Magdy from Egypt as I have GIT involvement and peripheral nerves. Could you please get in touch with me as I am in United States and can direct you to people here. I also would like to discuss your symptoms as they are similar to mine.
    E-mail me at [email protected].

  94. Lynn Anderson Says:

    Could someone tell me all the test that you need to diagnose this.

  95. veronica Says:

    I have these same symptoms but the triggering toxin is exposure to nonionizing radiation. Those who are triggered by this are often left out of this problem. Many get triggered by chemical exposure and then later but nonionizng radiation exposure. Avoiding these exposures keeps the symptoms at bay–however this is increasingly impossible due to the ubiquitous nature of these triggers. Please include wireless radiation and EHS in your studies as we are in desperate need of recognition. Thank you.

  96. Lisa Bloomquist Says:

    Thank you so much for this article, and everyone who commented, thank you for the information!

    I encourage everyone who sees this to be very cautious (ie, avoid like the plague, but make your own decision because I’m not a doctor and this isn’t medical advice) with fluoroquinolone antibiotics – cipro/ciprofloxacin, levaquin/levofloxacin, avelox/moxifloxacin, floxin/ofloxacin, and a few others. They deplete mitochondrial DNA, induce a massive amount of oxidative stress, deplete antioxidants, and trigger mast cell activation. Of course, this means that they can lead to multisymptom chronic illness in some people. Here are some posts, with links to articles embedded, connecting fluoroquinolone antibiotics to oxidative stress and mast cell activation:

  97. Barbara Says:

    Chronic inflammation from Biotin Illness, such as Lyme, genetic mold illness (chronic inflammatory response syndrome see can often be the initial trigger for MACD. Just learning about all this but believe this is my debilitating issue beyond the Biotin Illnesses I have. My symptoms for the last 15 years has been episodes every 30-32 minutes (consistently without break), 24/7–really!! They start with sudden onset of anxiety-terror, heart racing, air hunger, nausea, intense heat and the profuse sweating, and chills between these episodes. I often feel I am dying with these episodes. I also have symptoms of and diagnosed with Bartonella and other co infections, Fibromyalgia, CFS, IBS, Blapheritis, POTS, and more. I have the majority of symptoms on the MACD list. Anyone ever heard of these episodes connected with this. I have been to about 50 drs since the ’80s, and about 35 since 2000 and not only do they have no idea what could cause this they won’t even discuss it with me. They listen then go on like I never said anything.

  98. Judy Says:

    Hi Barbara,
    I have some ideas that could help from my own experience and research. Feel free to contact me directly at [email protected].

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  100. carol Says:

    HI Barbara,
    Dr. Marianna Castells at BWH, Boston is an expert in MCAD and could potentially help you.


  101. carol Says:

    I’m delighted to find all of you and the information you’re sharing. perhaps you have some suggestions for me. i was dx with Mast Cell Activation Syndrome about 10 years ago. The only symptom i had was stomach cramping- gastrochrome, loratidine and famitodine helped and I was essentially symptom free. I was diagnosed also around the same time with a IGG subclass deficiency which explains why for all my life i’ve gotten respiratory infections at the drop of a pin and ones that linger incessantly. Of late I feel everything triggers my mast cells and everything i’ve tried has failed to calm them- low histamine foods don’t make a difference, and I’m at wits end. I ‘m a highly energetic person who’s sick ALL the time now with either an infection or mast cell activation- in part from the infection. Exercise and sun are so troublesome I can only walk- and when i’m well- which is rare. I have two MTHFR variants; 677 C>T and 1298A>C. A PCP advised me to take folate supplements and I’ve taken high potency B tablets. I hadn’t noticed any connection between folate supplements and reduced mast cell activation. I had my whole exome sequenced and found nothing pathogenic. A couple of variants of unknown clinical significance were found- 3 of some attenuated use including though a heterozygous 1366C>T in the SLC46A1 gene- and this variant is associated with hereditary folate malabsorption- which is linked to recurrent infections( i have) and chronic diarrhea (i don’t have) I feel I’ve reached the limits of what medicine can offer and am desperate to feel better and get back to living my life- aka working- at least part time and exercising. Can anyone help with suggestions? Appreciate your thoughts.

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  103. Konatyme Says:

    my stomach biopsy shows 14-16 Mast cells per high definition slide. also multiple eosinophil cells floating around my gut. I went to UCI immunology and they tell me it is not normal to have mast cells in my gut but they can do nothing for me. I am extremely ill. I have 3 small kiddos and I really need some help. What type of Dr do I go to diagnose ( or not diagnose) this and then to get some treatment? many thanks

  104. carol Says:

    Feel for you. Dr. Marianna Castells, and Atkins are great at BWH in Boston.

  105. Konatyme Says:

    thank u. I am in Southern California, can I google a certain type of Dr to find 1 out here? Is there anything I can do right now to start treating? Has anyone one tried Cromolyn sodium?


  106. barbara Says:

    you can go to facebook mast board. and many others as an additional info with people having this.

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  108. Ami Says:

    Konatyme…..Dr Chin in Long Beach Memorial Children’s, Ca. Very well versed in mast cell issues. A lot of us fly to see him. He sees adults too

  109. konatyme Says:

    Has anyone tried cromolyn sodium orally to treat MCAD or food intolerances? maybe just a short stint on it to reduce inflammation and allow healing?

  110. Tina Says:

    I found this online and wondering if there is any help for patients who have pots syndrome, pelvic congestion syndrome and a rare skin disease called mid dermal elastylosis that is a connective tissue disorder which causes loss of elastin? I have been diagnosed with all of these, amongst others. I am very sick and my health is declining very fast. I have been ill since age 5 and 40 now. I am bedridden at this point and being neglected by drs due to my complexity and the cost and effort it will take to find the underlining mystery illness that has caused all of my conditions and causing me to rapidly worsen. I have every symptom that mast cell activation disorder causes and would make sense to my diagnosed conditions. This is effecting every organ system. My skin, blood vessels, stomach, fainting, allergy symptoms, eyes, kidneys , immune system, tissue under my skin, sinus’s, joints, neuropathy, nervous system, cyclical vomiting syndrome, sensory dysphasia, severe pitting edema, facial flushing and swelling, difficulty breathing, wheezing, severe head pain and fainting after bowel movements, seizures, severe inflammatory response after procedures, a kidney tumor that was inconclusive and set off the underlining condition and many complications that baffled my urologist, a comment from a surgeon when I had a procedure of, ” I’ve never seen such a severe inflammatory response as you in my 35 years in my practice ” and I am terrified for my self. Mast cell activation disorder would make sense for everything but no dr wants me or is willing to try to help me. Because my illnesses and being so sick gives me anxiety, these drs blame my symptoms solely on anxiety and my health is suffering. I am now on disablity and feel that if I had a Dr willing to care, I could get better and work like I love. I would give anything and everything I have to get the care I desperately need and deserve. I have a dr and cco who cares more about their money than their patients. I am in a horrible situation and at this point, to sick, to hopeless and to scared to start over with another dr who will only treat me the same. I have been abandoned by drs because of how complex I am and that hurts. Please help me!! I will do anything!!! My dr is keeping me sick and it’s ruining my health and life. I have so much to offer in this life and want to donate a kidney to a patient needing one. I need to get better in order to help save someone’s life. Please, help me..

  111. Mileina Says:

    I was diagnosed with mcad after visiting dr after dr. Now my wbc is at 14,000 which has come along way from 31,000. Now I struggle with Major depression disorder and generalized anxiety disorder that followed the mcad diagnoses. My question is, Is this common in people who also suffer from mcad? I am tired of psychiatrists changing my meds, if it is something within the mcad that can be done. I have been doing some research and I have read where serontonin levels have been messed with…..Any suggestions? I go to my Oncologists later this month and my psychiatrist later this month as well, I am at a loss and do not know what to do….

  112. Pam Says:

    Chapter 6 by Dr Afrin is free to download.

  113. Karlie Says:

    This is awesome people! Thanks so much for everyone’s contribution! I want to add this to the BH4 topic:

    The CBS (cystathionine beta synthase) gene catalyzes the first step of the transsulfuration pathway, from homocysteine to cystathionine. CBS defects are actually an upregulation of the CBS enzyme. This means the enzyme works too fast. In these patients, it’s common to see low levels of cystathionine and homocysteine since there is a rapid conversion to taurine. This leads to high levels of taurine and ammonia. The CBS upregulation has been clinically observed to result in sulfur intolerance in some patients. It has also been observed that BH4 can also become depleted with a CBS upregulation. BH4 helps regulate neurotransmitters and mood. Other mutations, such as MTHFR A1298C, Chronic bacterial infections, and aluminum can also lead to low BH4 levels. Lack of BH4 can lead to mast cell degranulation and possibly mast cell activation disorder (MCAD).

    MTHFR A1298C is involved in converting 5-methylfolate (5MTHF) to tetrahydrofolate (THF). Unlike MTHFR C677T, the A1298C mutation does not lead to elevated homocysteine levels. This reaction helps generate BH4. BH4 is important for the detoxification of ammonia. The gene is compromised about 70% in MTHFR A1298C (+/+) individuals, and about 30% in people with a heterozygous (+/-) mutation.

    BH4 acts as a rate limiting factor for the production of neurotransmitters and catecholamines including serotonin, melatonin, dopamine, norepinephrine, and epinephrine. A MTHFR A1298C + status may cause a decrease in any of these neurotransmitters or catecholamines. BH4 is also a cofactor in the production of nitric oxide. A dysfunctional BH4 enzyme may lead to mental/emotional and/or physical symptoms. Mercury, lead, and aluminum may act as a drain on BH4.

    I’d be grateful to know anything more people find on BH4 (biopterin). Like, does anybody know if there is a relationship between BH4 and bupropion?

    Resource: Dr. Ben Lynch is doing a lot of good research and teaching (but no consultations right now). See and and

  114. Django Says:

    I have to agree with an earlier commenter.

    Mastocytosis and MCAD/MCAS are two different things. The former is an abnormal number of mast cells and the latter is a normal number of mast cells but they are highly reactive.

    So it’s a bit odd when the original writer of this article describes MCAD by quoting from sources that specifically define mastocytosis.

    One link between mast cells and methylation is that one of the primary products of methylation is SAM-e and that plus HNMT (Histamine-n-Methyl-Transferase) breaks down histamine. So reduced methylation could mean reduced SAM-e, which in turn means less histamine broken down and more running around in our bodies.

    I also happen to have a SNP related to HNMT, which I have been trying to research. Could definitely be some good genetic data related to all of this.

  115. Honeygal Says:

    To Charleah in Raleigh.

    Dr. Nicole Gill at Carolina Headache Clinic (by Southpoint) is great. She is a neurologist who thinks outside the box. She diagnosed MCAD in my daughter, who has been suffering with migraines since the age of 10 (now chronic) and chronic headaches before that since 7 or 8.

    None of the standard treatments for migraine ever worked, and many of them hurt my daughter (topomax, triptans, DHE IV, countless preventatives that all failed) and other treatments we tried didn’t help either (chiropractors, biofeedback, etc).

    My daughter is still suffering from chronic migraine and insomnia, but many of the other weird symptoms she was experiencing (flushing) calmed down with Claritin. The standard zyrtec/zantac didn’t work for her, in fact Zantac caused huge stomach pain.

  116. Honeygal Says:

    My daughter also has the A1298 mutation in the MTHFR enzyme. She is taking methylfolate for that – a pill size lozenge.

  117. Archita Says:

    I have been reading this website and all the wonderful member contributions.
    Can members please help re my 17 year old son with a chronic mycoplasma infection. He has high IgE with a mast cell activation disorder, immune system dysfunction with low IgM, natural killer cell activity . Also his ammonia levels have been high recently. Is there any connection between mast cell activation and high blood ammonia levels? He has minor liver dysfunction with elevated ALT . What can be done to get the ammonia levels down? Many thanks

  118. Jennifer Says:

    Hi All,
    I have Celiac Disease and some form of MCAD with preservatives and high histamine foods as my main triggers. I have gotten the mast cells under control for the most part but suffer still with depression and anxiety. Can you help me with what supplements I should be taking? So far I seem to feel a bit better with a magnesium complex supplement. I did not tolerate well a B complex supplement. I’d appreciate any guidance on this if anyone has had good luck healing from anxiety/depression associated with this illness.

  119. JoAnn Scott Says:

    After many years ~~~ We finally found genetic disorder in family ~ son … A1298C … fffinallyyyyyyyy was diagnosed at age 52….~~ Our big problem is getting BH 4 ~~~ & where do U get it now in US.. Also was pulled off market a year ago so we are able to get it thru China till we find local source…. This MTHFR is a hugh complicated disorder ~~ Thanks for all sharing. ~~ Let’s get the Help out nuero Science Dr help’s us

  120. Alexis Says:

    Hello! I’ve been struggling with breathing problems for almost two years – this started at age 23. I used to be a half-marathon runner and exercise freak, but one day while exercising, I feel short of breath and that my lungs were seizing up. It was very scary, especially the first time. I’ve been to SO many doctors (asthma doctors included) and have been diagnosed with 100 different things. One told me I had asthma but I didn’t respond to albuterol. Another told me I had costrochondritis, and I tried anti-inflammatory meds for that which just left me feeling like the room was spinning. I’ve had an echocardiogram, two EKGs, two chest X-rays, and routine blood work. The only things that were off were my blood calcium levels (they were high) and I also had high RBC. I have MTHFR but my doctor said that my homocysteine level was fine, so the MTHFR shouldn’t be causing any of my problems. I’m feeling so stuck and hopeless at this point. I want to breathe freely and fully again all the time and not worry about the next time my chest will tighten. It has completely taken over my day to day life. I no longer am able to exercise, and I have trouble breathing after every single time I eat, too – no matter what the food. I’ve never had to think about breathing before this happened to me two years ago, and I want to be that way again. It’s suspected that I’ve been exposed to toxic mold because I was working in a water damaged building. I got so sick that I had to quit my job (I was developing other symptoms, too, such as low blood pressure, heart racing, weakness, dizziness, horrible rage, etc. I’m now living with my mother in Los Angeles, CA. I’d like to see a mast cell doctor, does anyone have any recommendations? I would also greatly appreciate any advice/help! Thank you so much!

  121. Dave Says:

    This article has a fundamental problem. It starts out asking what is MCAD and then gives a definition of mastocytosis. The two are very different, and defining one by the other is incorrect and highly misleading.

    The article needs to be rewritten, beginning with the correct definition.

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  123. Melissa McCartney Says:

    I suffered from severe depression for 20 years and about 90% of the health issues associated with Mastocytosis. My family doctor became belittling and dismissed me as a hypochondriac. I started getting severe hives from head to toe that kept me from sleeping for days at a time.His diagnosis was dry skin…I finally lost it and insisted on getting a referral to an Allergist. I lucked out and ended up seeing an Allergist/Immunologist who had studied at Boston.He almost immediately suspected Mastocytosis, did the tests and it came back positive.
    I feel blessed to find this site since I’m becoming allergic to some of my antihistamines (I really didn’t think that was possible).Anyway, Thank You for this site,at least I have some leads that might help me out.
    My contribution- For my debilitating Depression the only medication I found that worked for ME was Selegiline which is a MAOI.This class of drugs has been mentioned as being beneficial to people with our condition.Its an old time medicine that many doctors are unfamiliar with and now is used mostly for the treatment of Parkinson’s Disease.However my Doctor (Psychiatrist) only prescribed it as a last ditch attempt.It didn’t benefit me with any other Mastocytosis symptoms.It has a long list of dietary restrictions. ,it interacts negatively with many medications including some antihistamines and decongestants, but at least I now have the will to live and keep fighting.

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  127. Francisco barretto Says:

    To me this is a fascinating subject.i see a lot of patients with ehlers danlos syndrome,living in a place, recife, brazil,whre most of the people has ehlers danlos syndrome, a lot of pots and i think i may find a lot of mast cell activation syndrome which i ve just started recognizing. This text is very substantial and i could recognize many of my patients. Many thanks.

  128. Lee Says:

    My daughter is struggling right now, She had hellp syndrome 2 years ago and her health has drastically gone down since then, She was diagnosed with MTHFR gene mutation- the rarest one and thrombophilia which is a blood clotting disorder. Over the last 5 months she has become allergic to just about everything. She has been in a constant state of a blistery rash on her skin and she has other symptoms as well as heart palps , extreme anxiety, shortness of breathe etc. Now some of the allergies are affecting her face and lips. She went for a very thorough allergy testing that showed nickel allergy and allergies to other chemicals that are in just about all the products used on a daily basis. We are thinking this could be MCAS. What kind of doctor do you see for this? Where do begin? The allergist was basically – this is your life avoid these things…..

  129. Leonie Says:

    My doctor has just started my on Alegra once a day to see if that does anything. I have Lyme Disease with extremely high inflammation. Along with most of the symptoms you mentioned above in this article. Hoping that the Alegra can help some. We shall see

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  131. Megan Macek Says:

    I am a 24 year old woman who has spent her entire life with some unknown illness. No allergist has seen a case of environmental allergies as severe as mine and asthma that responds so poorly to medication. All of the symptoms listed are exactly what my daily life is like. I’ve gone into anaphylaxis 10+ times but we never knew what caused any of the episodes and it’s gotten to the point I just stopped seeing doctor’s besides to get refills for my medication because I’ve lost hope of ever finding relief. I also, have Von Willebrand’s Disease that complicates getting treatment and testing because most doctors are afraid to touch me. How do I find a proper doctor so I can get answers? My 16 month old son has the same marbled, temperature sensitive, uncontrollably itchy skin as me and I know he has whatever I have and I’m terrified of him having to go through the medical hell that I’ve gone through. Any answers would be greatly appreciated. I’m so desperate but I’m starting to lose hope in finding a doctor that will be able to help me.

  132. Patricia White Says:

    Could a tick borne disease trigger Mast Cell Activation? Several months after an embedded tick bite, I started feeling ill (no fever) and having digestive problems and then after eating beef had food poisoning reactions several times. Trytase levels elevated but no actual allergy showed. I now carry an epi pen. I would like to be tested for a mutation which my Naturopath recommended but don’t know where to get that done and also wanted to be tested for all the tick borne illness but PCP referred me to an infection disease doctor who said they are not experts in tick dieases. I was tested for the 3 most common and they were negative. HELP!

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    vanilla extract from aids and herpes simplex virus-how to permanent get hiv-aids cured

  134. Nelson Says:

    “Dr Bello herbal cure is 100% Guarantee percent sure to cure your (HEPATITIS B AND ANY OTHER DISEASE) ,He is only person that i can boldly say he can cure any types of wife was having HEPATITIS B for more than 5 year when i met Dr Bello online how and how he has cured so many people and how greatly he has helped many individuals online,so i contacted him and explained my wife situation to him and behold my wife was cure with his herbal medicine and now we are living happily, so to anyone issue on herpes challenges i advised that you contact him for help and he will send you the medication and you will be fine and OK : [email protected] com he can also cure any disease such as HIV/AIDS HEPATITIS B,DIABETICS,CANCER,HERPES E.T.C HE is the great herbalist man called Dr.Bello i must say a big thanks for curing my wife disease, i owe you in return. Thanks and be blessed sir.his Mobile number: 09035594773 or what’sapp him on 08107996445″

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  136. Selena Crystal Says:

    I was diagnosed with Hep B way back in 2013 when I was supposed to donate blood to my nephew. It was normal to do laboratory check on my blood hence it was found out that I’m reactive to the illness. I’m very depressed and demoralized since this disease has been unacceptable just like the unpopularity of AIDS. I was so nervous that I’ve got ashamed to talk with other people onward, so my mom subjected me to series of tests so that damage to the liver may be traced. The doctor told me that; YES i am chronic carrier, i was so depressed was thinking of committing suicide, till i came across a forum on internet, about MED LAB TEC who cured various diseases like Hepatitis B, Herpes, liver fluke HIV and others, without wasting time, i contacted them and i get medication from them and after the days given to me, I just went back to my doctor and they also carry out the test again, and i was negative of Hepatitis B. Please contact this MED LAB TEC if you are hepatitis B positive or any kind of diseases herbal medicine are indeed best remendy; their email is: medlabtec(AT)mail(DOT)com

  137. Christain Bane Says:

    I am glad to have seen a testimony about the great Dr Okusu how he has used his herbs to make lots of people life better and easier, i am so much relieve now that my HIV AIDS Disease has been terminated after the use of Dr Okusu herbal remedy, i cant say thank you enough, i am just so glad about the wonderful work Dr Okusu did for me. i found out about my statute, January of this years and since i have going through many symptoms and pain, until i met the powerful Dr Okusu, can’t say much but to say thank you Dr Okusu, for all your miracle work done for me. dear friends if you are reading this article contact Dr Okusu for any kinds of disease, ALS,HERPES,GONORRHEA,HEPATITIS B,CANCER,DIABETES AND MORE, contact his email: drokususolutiontempleATgmailDOTcom

  138. Patricia Shiels Says:

    I am from Usa i was diagnosed with HSV TPYE 2 while I was pregnant .I cried for days. I was devasted and looking up info on it just made it worse. I don’t know how long I have had it for. I don’t know if my partner has it or if he was the one who transferred it to me. I had one outbreak while pregnant. That’s how I found out I had the virus. I started taking and antiviral and took it everyday twice a day to make sure I wasn’t able to get an outbreak. I debated whether I wanted to have my daughter natural or c- section. I was terrified. Stress wasn’t helping my situation. I ended up having her natural and she is a beautiful healthy 2 month old baby girl. I try not to think about me having the virus because of my depression i couldn’t. so I have to focus more on how to get rid of HSV TPYE 2 because i don’t want anything to happen to my daughter and thank God she was born fine. i visited different hospital but they gave me list of drugs like acyclovir, Zovirax, and (valacyclovir)Valtrex without without get rid of my virus. one day i decide to surf the internet for cure so i saw a testimony total cure of HERPES by Dr. EHIAGWINA with NATURAL HERBS so i pick up the email Address: ehiagwinaherbalhome @ gmail. com and contact he an hour latar he reply explain to me how am going to get the herbs and how am going to use it to cure my viruse i give a try believe me it work perfectly i used it within seven days now am tested negative i’m free from the viruse thanks Doc. for so many passing through this contact Dr. EHIAGWINA to help you get rid of the virus. here is his email address: ehiagwinaherbalhome @ gmail. com you can also call or add him on whatspp 2348162084504 He can as well cure so many diseases like………..
    1. ALS
    2. HPV
    4. CANCER
    5. HIV/AIDS
    6. BREAST AND PENIS ENLARGEMENT and others diseases i can’t remember now.Thanks Doc am so happy today

  139. keith Golson Says:

    DR EHIAGWINA HERBAL REMEDY CURE HERPES WITHIN TWO WEEKS (ehiagwinaherbalhome @gmail. com )

    Hi everyone just wanted to take the time to say that i was heartbroken and depressed when I was diagnosed of Genital herpes .. I was given these disgusting dark blue pills to “take . The pills is called aclyclovir , even made me more sick and gave me headaches to the point of me puking. i searched everywhere for a solution. I came across this herbal doctor on internet called Dr Ehiagwina who gave me hope that he can cure me totally from the virus so i gave a try believe me it was Amazing now am tested negative. contact email: [email protected] com Just wanted to share. Hope it helps someone, I’ll be posting this to hopefully help anyone who needs help.

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