She was in the shower. She should consider whether she is allergic to sulfates, which are in many, many shampoos and soaps. She should also get tested to see whether she is allergic to common preservatives.
You can also be allergic to the preservatives present in many soaps, shampoos, detergents and even paper products. Yep, a tissue can set you off, or a paper towel , or a napkin.
But getting testing for these products is a challenge. Somehow they want to inject you every three weeks with something rather than tell you to use a handkerchief or a dishtowel.
2
My partner has never had anaphylacsis, but on about 4 occasions over the past seven years, she has been hit with uncontrollable vomiting and diarrhea. On a couple of other occasions, she has becomes suddenly light headed and her blood pressure has dropped low enough to make her faint briefly. We have always thought that the gastro distress was some type of food poisoning or allergy, in fact that's what ER docs have told us. We thought shellfish a likely culprit, so have avoided it, but at least one of these attacks did not involve shellfish. The fainting attacks are unexplained. My partner is otherwise healthy, has no allergies, and takes no medications. I wonder.....?
7
I have smoldering systemic mastocytosis and was so thrilled to see this story!! I had severe anaphylactic episodes for years before I was finally diagnosed. After diagnosis, I continued to have severe anaphylaxis even with huge doses of h1, h2, mast cell stabilizers and leuketrine inhibitor. I was using my EpiPens 1-2 times a month. In 2016 I started on a phase 1 clinical trial for avapritinib and have been in a near complete remission for 2.5 years. I encourage anyone who suspects mast cell activation disorder or systemic mastocytosis to see an allergist and get the testing! Repeated anaphylaxis is dangerous and takes a toll on the body.
5
Hi there,
I had something very similar and I have been rushed to the E.R. 3 times. I was given a steroid taper, epinephrine and cortisone which saved my life. I went to an allergist and was tested for all kinds of allergies.
Nothing came back as a positive.
Through deductive reasoning, it was determined that I had a metabolic allergy triggered by aspirin/NSAIDS.
I have since not taken aspirin or anything containing NSAIDS and have not had a significant episode.
I also carry benadryl and an epipem at all times, just in case.
5
I'm so thankful to hear an article that raises awareness of Mast Cell Diseases! I too battle Mastocytosis & have been on a similar journey. After 3 years of being in the ER about 8 times a month I got a diagnosis. I'm so thankful for my 7th GI Dr who biopsied my colon for a Mast Cell Stain, Dr. Pace at the U of U who has helped me get on a treatment plan that helps tame the cells (Ketotifin, Cromolyn, H2 blockers, diet change), and God's grace in keeping me alive through more than 50 anaphylaxis episodes. My tryptase level doesn't elevate like the lady in the article so if that's you don't give up! Maybe a biopsy would help? Glad she is doing better too!
7
@Gregan hello! Always nice to meet a fellow masto-ite. I have smoldering systemic masto with a very high mast cell burden (average tryptase mid 300’s and mast cell bone marrow penetration 50%, enlarged spleen, etc. and have had too many anaphylactic episodes to count. Thankfully, I’m in a phase 1 clinical trial for a drug that has put me in a strong remission.
Do you have mast cell activation disorder?
3
@Gregan - so happy to hear that you got diagnosed. Would you mind sharing what your triggers are and also what are your other symptoms other than anaphylaxis?
thanks
1
I know what this is! I have it and it took me years to get a (real) diagnosis. It must be a form of Hereditory Angioedema. I have the help I need with the use of Cyklocapron medication which helps solve the crisis immediately. Please research this up, it saved my life and that of my mother, who had crisis daily without eating any of her food allergies.
4
I had never heard of Mast Cell diseases until one day, out of the blue, my dog's face swelled up. We rushed to the vet and WHAT A GOOD VET - he didn't automatically assume it was a bee sting, he looked all over and noticed a small "cyst" on my dogs shoulder. He tested it right there and confirmed it was a mast cell tumor. He explained that my dog probably bumped it and released histamines into his system. A few months later, after i was diagnosed with lyme disease, I was having minor episodes of labored breathing and pounding heart after eating. My functional Dr suspects its mast cell activation! I'm on a low histamine diet and I take Quercetin with every meal. So far so good!
3
My sister began having similar symptoms when she was about 19 or 20, although her most prominent symptom was angioedema. At least once she was close to death on arrival at the ER. Eventually, she was told that she had a proliferation of mast cells... no triggering agent was ever found. She kept epinephrine at home, but then discovered that going for a run every day prevented these attacks. (She tried swimming but the attacks returned, so she went back to running.) She is now 66 and the condition seems to have disappeared.
6
I have a 15 year old daughter with severe food allergies. She is currently allergic to some tree nuts, beef, fresh milk ,animal dander and dust mites. Never used an Epipen for the past 15 years up until recently when she had 2 of her worst reactions ever in a span of 4 months and the Epipen saved her life. Historically, we've controlled reactions ( hives or GI issues-with Benadryl). Reactions occur within 30min -60 mins of exposure/ingestion to an allergen. The reactions I'm referring to have been completely different.
The 1st was in April in the middle of the night at 2am. She woke up with swollen eyes, ears, lips and huge hives all over. Complained of slight difficulty in breathing. I gave her Benadryl and 2 puffs of Ventolin. She went back to bed. Woke up at 8 am -couldn't breathe and needed to use the toilet. Within seconds, she turned blue, had blurry vision and was completely listless. Administered the Epipen right away and rushed to the ER. The second time in July. We had read this article just a few days ago and knew about the tryptase test. The sequence of events were identical. But much faster. We asked for her blood sample to be taken to measure Serum Tryptase at the ER. Level was 19.2 ng/ml after anaphylaxis and 5 days later it was 3.6 ng/ml. However we still don't know what the trigger was and not sure if she has mastocytosis. I do have a far fetched theory but this comment is getting too long so will wait for people to answer before I share my view.
6
I have been watching this show at home and am fascinated with the investigative angle.
I'm 71 yrs old and have had allergies all my life but they have greatly increased in past 20 yrs to the degree I have an A4 page of my allergies, mostly food. Sadly despite my limited food intake I do not lose any weight because of other medical conditions.
My allergies to airborne allergens & cat & dog hair etc.,were kept under control with injections especially made for me by my immunologist; 1st time monthly for 10 months, 5 yrs later monthly for 6 months, 5 yrs later again twice monthly for 4 months. Now I should be ordering the under the tongue treatment which is made in Canada, in lieu of injections.
I am on anti-viral medications because of my compromised immune system, plus I take many vitamins. I have had Phenergan 25mg & 5mg antihistamines on hand for 50 yrs. I am also supposed to have an Epi-pen but they are so expensive.
Decades back my immunologist wanted me to have intravenous immunoglobulin (IVIg) treatment but I couldn't afford the private hospital treatment. I'm sure it would certainly make a difference to a young person and reduce their allergies.
1
For years I’ve had unexplained anaphylactic response out of no where they I’ve had white welts all over my body I’ve had red painful white blotches my skin felt on fire and I was in pain down to my muscle I had such a bad response that my body started to go into over drive my throat closed and and I’ve had severe reactions for years I have random attacks that get worse over time
1
I've been battling this off and on for most of my life. It's come close to killing me more than once. this condition wasn't even identified until about 12 years ago. I'm 63 now. All I could do for decades was eat a highly restricted diet, avoid non-dietary triggers, and take heavy duty sedating antihistamines. Now we have better alternatives, and we even know what this condition is.
10
@HappyCat I have a similar story, I'm 46 and I've had symptoms since I was a little girl. By my teens and 20s I had already started eliminating foods & non-food triggers (like latex-based products). Every 10 years I'd have to eliminate more foods to the point my 'safe foods' list was getting pretty short. Then in the winter of 2015/2016 I had a nasty bout (2.5 or 3 months) of bronchitis that triggered a flare that permanently increased my mast cell activation level. Within a few months I only had 4 safe foods left and was losing a lot of weight. After 6+ months of barely eating and avoiding going out of the house (flare raised my chemical sensitivity by 10x) I found an immunologist who diagnosed me with chronic urticaria/angioedema and suspected mast cell activation and was put on H1/H2 blockers. A year ago I started Xolair and that has enabled me to eat fruits and veggies (raw or cooked), nuts and seeds, and shellfish/seafood. It's like I got a new life. I hope you have also found excellent physicians and treatment.
9
This column is always so interesting -- a medical whodunit.
4
@Mary O please remember that real people are suffering in these stories.
2
@S. Casey
I don't believe her comment was insensitive...Just a general observation of what this column is to her. Not everyone who reads this column may have the capacity to give an opinion. It doesn't mean that they are less inclined to find the stories poignant or riveting.
6
My mom has mastocytosis — and I have a milder form. Really glad that it’s getting recognition and that this article was published.
One thing I would comment on is the conclusion: now she takes antihistamines and does an injection (xolair) and she’s fine. These things help prevent extreme reactions as often — but it’s a chronic illness. Meaning that you feel pretty bad much of the time and it’s a constant battle of avoiding certain foods, too much heat, too much stress, too much physical activity. And often, you react anyways without knowing why. And reactions can take days (or longer) to get over. I would estimate that I feel bad at least 50% of the time.
Doctors in Germany estimate that 17% of the population has some form of mast cell issue. If you suspect that you do, Dr Afrins book and the mast cell Facebook group are great places for information.
15
As with most immune mediated disorders whether mast cell disorders (asthma, anaphylaxis, food allergies), rheumatoid arthritis, or immune defiiciencies, most children and adults receive the best working diagnoses years after suffering.
Who’s Holding Up the Queue? Delay in Treatment of Rheumatoid Arthritis -HOMIK As cited in Hosea 4:6 My people are destroyed for lack of knowledge:
-patients are not screened for most mast disorders including asthma until they have an attack;
-most physicians have received maybe 1-4 weeks of training on the immune system, a little better than nutrition, in the first year of medical school; and
-most specialists, like their general practitioner colleagues are slow, if not resistant, to learn and embrace new described syndromes for at least 10 years.
So when a patient has more than one organ system involved or does not have classic "allergy" symptoms, it is not surprise that a patient needs to find a medical practitioner I did not go to provider school) who is willing and able to listen and learn. Brynne Duncan, Johanna Watkins had to be imprisoned by their disease before any provider is willing to go beyond antiquated "allergy algorithms on the EMR", , as Francis Peabody stated, the care of the patient starts with care of the patient. - asktheallergist
https://www.cnn.com/2015/05/01/health/bubble-girl-allergic-to-life-brynn-duncan/index.html; https://www.today.com/health/woman-allergic-everything-including-her-husband-t108408
1
"specialist in both medicine and pediatrics, "
Pediatrics is a branch of "medicine" even when distinguishing between "medicine" and "surgery" -- a distinction sometimes made in healthcare taxonomy but rarely among the general public.
Accordingly, since The NYT is written and publishing with the general public, not strictly medical doctors and other healthcare providers, in mind, the author and editor should have referred to the doctor in question as a specialist in "both adult and pediatric medicine," for to do otherwise very well may confuse or mislead general readers.
2
Several years ago this happened to me.
I'm in my 60s and had never had anaphylaxis before. I had 4 episodes over 2 months, each involving an ambulance and ER visit. I had no idea what caused them, nor did the ER physicians. I was given a RX for EpiPens. After these attacks I talked to an allergist who had treated me years ago and saw another allergist who was sure this was about my cat, who I'd had for 15 yrs. I don't think so.
I spent a lot of time trying to figure out what had caused this and think I eventually found it. All the attacks came hours - in some case many hours - after I'd been in a grocery store. Not the same grocery store - 3 different ones.
The one thing that was the same was that at each store I'd used those antiseptic wipes stores now put in their entrance to wipe off your grocery cart. I'd been doing that.
I figured the fact that my later anaphylactic attacks always included my palms suddenly turning bright red and itching meant the problem was something I'd touched with my hands.
That was 3 yrs ago and I haven't had another attack and I haven't touched those wipes since - or used any kind of cleaning wipe in my own home.
I've never had another attack since figuring out not to touch those wipes.
I've wondered quite a bit if other people have had the same reaction to those wipes offered up in the grocery store entrance without any kind of warning for people who might use them.
This was almost a deadly issue for me.
16
@fast/furious, whatever was in those wipes is probably in a lot of airborne sprays for homes which cause allergic reactions.
Re the cat - I've had dogs & cats all my life but never developed an allergy to them until I was 45! Since then it's been under control with special treatment. As my immunologist said, anyone can develop allergies at any time, such as hairdressers with dyes and surgeons with latex gloves.
3
@fast/furious I'm allergic to them, too, though not as seriously as you. Rash all over my hands and arms. Facial rash from breathing in the fumes.
2
What about the tick born meat allergy, where a person can be bitten and one year later go into anaphylactic shock? We are seeing more and more of this on Long Island.
4
Did our ancestors die on a regular basis from nut allergies or latex exposure. In my readings peanut allergies didn't exist until the late 80's and early 90's. I'm a cause and effect person so what happened in the late 80's to trigger these allergies? Is that when parents were encouraged to slowly introduce different foods to babies instead of just handing them a slice of orange or a dab of peanut butter. Or is it something environmental? Is it our obsession with germ-free environments that don't allow an infants immune system to develop enough to handle things. My son ate dirt, (sometimes) and drank out of streams as an infant. Maybe we need rethink the idea germs are bad and maybe expose them to things a lot more as babies.
7
@markd I am 58 years old and have had a peanut allergy all my life. My reactions I pranuts are more severe now than when I was younger. Peanut allergies are definitely not new. There are just more people who have them.
15
@markd I am 63 yo and have had peanut allergy all my life. It isn't the life threatening kind but it produces milder symptoms of everything described in this article. Our "ancestors" probably didn't know what it was. Physicians didn't fully understand allergies at all until the 60s and 70s. I also had asthma and one doctor sent me to a chiropractor.
The more exposure an allergic person has, the more severe the symptoms get in the future.
7
@markd
I've had a peanut butter allergy for 70 yrs so it is not new. I was told 2 yrs ago I must not even inhale it when making sandwiches for my grandchildren, my allergy now is so bad.
2
What I don't understand is why she didn't have an epipen with her after the first or definitely the second episode. Every one in her family should have been advised to use one on her at the first symptom of her unknown triggered reaction. I do understand the cost of epipens as I have to buy for two family members but the family did not seem to have a problem with the other medical costs so that does not seem to be a factor.
15
@jcs Most insurance companies won't cover EpiPen prescriptions unless the physician can give a diagnostic code. If the doctor doesn't have a diagnosis, they have to make up one to get the pens covered. I lived for over 40 years with a mast cell disease and didn't get diagnosed until age 44. That's when I got my 1st EpiPen (carry them everywhere I go).
3
I am allergic to insect bites, and i used to keep multiple E-pens readily available, but the criminal rise their price has been it impossiple to replace them. My insurance refuses to cover the cost so I trust to luck and an expired pen.
17
@Smokey Or just get a vial of epinephrine for a few dollars and learn how to draw it up in a syringe and inject it. It's really trivial. Epipens are good for when the person is almost unconscious and some other member of the family who has no idea how to administer a shot can take this fool-proof device and use it. But it's really pointless just to keep around the house for someone (like me) allergic to wasp stings.
1
@JerseyGirl
I've wondered if an expired one would work (I've got 2) and can never find an answer. European wasps could be deadly for me and I've previously had anaphylaxis from a bee sting and when stung by paper wasps I quickly take 50mg of Phenenergan and it works.
I would love to know which shot she takes - is it Xolair??
2
Proximity to the White House?
13
"a shot she gets every three weeks"... Humira? Enbrel?
6
Well... sometimes the obvious is hidden in plain sight. As I read the title of the your article, I was immediately drawn to the powerful illustration by Ina Jang, and, jumping to conclusions before reading, I assumed that the answer was in those beautiful red lips and the author was going to expertly lead us to those dangerous lips. Surprise! She didn't. There was no conclusion.
I would like to offer that the illustration may bear some clues to the allergy: had the patient worn any lipstick or lip salve or cream of any sort on her face or body? Many lotions contain a variety of ingredients, including "natural" oils. Olive and palm oils are routinely used. As is cocoa butter. Some brands used recycled grease gathered from restaurants. And some ingredients come from China and some brands are made in a variety of countries. All ingredients may not even be listed.
So this is a possibility. If the patient is extremely sensitive, this could be a source. Or the cheek of a kissed beloved grandmother? Or the kiss received from a dear friend?
The inspired illustrator may have been prescient.
7
@Stephanie I wonder if any female physicians looked at her case. The male doctors may not have thought about makeup and cosmetics. In my house, I'm terribly allergic to cocoa butter and my mom has trouble with shea butter. We have to read every label for cosmetics.
5
I had this happen to me after a pesticide exposure. I couldn’t take a shower because my throat would close up. The smell of Broccoli cooking made my throat close. Steroids made my throat close. Inhaler made my throat close. And on and on. I was finally diagnosed with MCS. I moved way out in the country and have not had a bad reaction in yrs.
18
@Marilyn Conway
For those who don't know: Multiple Chemical Sensitivity.
My allergist told me the rate of this goes up a lot every decade as more chemicals are introduced into the environment and it becomes harder to avoid exposure.
4
“Additional testing revealed that she had the mutation found in systemic mastocytosis.”
Has, not had.
7
My dog was diagnosed with a mast cell tumor this week. Our vet prescribed antihistamine and antacid twice daily. Such a coincidence. Very interesting case
29
What lead Dr. Benson to put diseases of mast-cell proliferation at the top of his list if there was no allergy trigger identified? Experience, research, flash mob member,?
How long has the patient been attack free?
Should an allergist be able to make this diagnosis?
11
His experience and knowledge- if you read this article you should now comprehend that not all allergic reactions are triggered by a specific allergen. Hers is genetic biological specific- read the diagnosis offered. Her body produces or sends out or over reacts to “allergens” (what or when or where not applicable) and extra mast cells are produced causing her symptoms. Did you read the article?
2
Dead wrong. Mast cell proliferation/Mastocytosis has NOT been shown to nessarily cause hypersensitivity reactions. Nor dose-dependently, any more/or differently, than Mast Cell Activation Syndrome (MCAS) without detectable MC proliferation. The afflictions have been demonstrated clinically identical by/large for nearly 3 decades. In each, the culprits are indeed excessive synthesis/release/activity of such (MC) "mediators as histamine and tryptase--albeit blood/urine tests for these have proven unreliable. Hence the World Allergy Organization, most other key Anaphylaxis orgs/experts embracing "verified" "consensus" clinical criteria for Anaphylaxis that, unlike unreliable testing, withstands scientific scrutiny. The WAO also recognizes much Anaphylaxis can be "non-allergic" yet clinically identical. A variety of other "triggers" has been identified, yet in many episodes, no trigger manifests. Hence "Idiopathic Anaphylaxis." A person can suffer episodes both allergic and non-allergic, w/ a manifest trigger or Idiopathic. Same with less severe, often chronic, hypersensitive MCAS symptoms besides Anaphylaxis, or in many cases, without Anaphylaxis. Prophylactic, ongoing treatment is similar, often including a MC "stabilizer", other anti-mediator agents, meds targeting associated afflictions. Patients as here should be prescribed Epinephrine autoinjectors--always have these at hand. Lying prone as this woman wisely did can also be decisive to survival (without brain damage).
8
Lying supine, not prone. Prone is on your face.
17
This would be interesting except that it is unintelligible.
24
@Melinda Shaw right! thx 4 correction!
1
I have had these symptoms. Did this young woman EVER take the allergy drug Zyrtec? This sounds a lot like Zyrtec withdrawl (https://www.consumeraffairs.com/rx/zyrtec.html). If you stop taking the drug, within 48 hours you begin incessant vicious itching, you can develop blistering hives, your feet and legs can tingle and go numb, you can have flushedfexcessive heat, fatigue, memory issues and more. I developed serious hives and breathing trouble. At the ER I was given Prednisone. 2weeks later I still have the uncontrollable itching and hives and blisters. In 2005, the patent for Zyrtec expired (it was prescription only at that point. Johnson & Johnson (“The Family Company”?) purchased it, tweaked the formula and was able to market it then as an over-the-counter allergy med with none of the withdrawl side effects listed on box or inside leaflet. Thousands of people are suffering from trying to get off this drug. Thousands of stories can be read on the consumer affairs website and others (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5124431/). There is a closed Facebook support group for victims of this drug with 900 members.
Zyrtec is insidious because it tricks people into thinking that their itchyness, scratchy eyes, rash are from an allergy when in fact it is from the Zyrtec itself, so they take more Zyrtec and the symptoms stop promptly. But, like an alarm clock, if you stop taking Zyrtec, at 48 hours the itching begins again—a hideous cycle.
18
@Katie
Is one able to taper off it?
3
@Penik
According to the WEBSITE - yes.. but Yikesl
People who are elderly - over 65 are cautioned to be careful or not use anti-histamines.
This is very interesting and why one should read package insets information.
@Katie Interesting. I had a similar problem coming off another allergy medicine (Claratin). Now that it's in my medical file, I get a lot of confused looks. Really, you're allergic to an allergy medicine. I have to say. Yes.
1
Why was she not carrying Epipen to combat a severe reaction? It would have muted her vascular collapse.
17
In many of these cases, evaluating other sources of immune stimulation, such as gut infections, mold exposure, delayed food allergies (IgG and T-cell mediated), nutritional deficiencies and hormonal (DHEA in particular) imbalance, is necessary to determine the primary underlying causes for the increasing list of new allergens. Addressing the pertinent positives in these categories has in my experience been the most effective treatment that can reduce the need for any inmunosuppressants, which is the long term treatment plan recommended in this case. While this is definitely necessary for reducing life threatening emergencies, if we find enough of the above categories to be abnormal, make interventions to treat them and retest to confirm they have improved, then I usually start to slowly remove the immune suppressants, which ultimately will reveal whether we have in fact addressed the underlying cause of immune overactivity. When the problem starts at a later age, typically it is a sign that there are environmental factors that can be addressed to change the genetic expression even if there are predisposing factors.
11
I was diagnosed with MCAS about 2 yrs ago. I take antihistamines every day and stay on a low histamine diet. My anaphylaxis incidents are triggered by getting any kind of virus or infection (colds, sore throats) and allergic reactions to some medications. Too much stress is also a contributing factor.
So I try to protect myself by using antibacterial wipes and hand sanitizers when out in public. I haven’t had an attack in over a year. I get plenty of sleep, don’t consume any alcoholic beverages and refrain from taking any NSAIDS. I always have epipens with me just in case.
So far it seems to be working.
13
@Mary Pitts
Hi. See my comment above that I believe my repeated episodes of anaphylaxis 3 yrs ago were caused by using antibacterial cleaning wipes that were left out for customer use for cleaning purposes in the entrance ways of all the grocery stores in my area.
There is a glaring omission of eliciting a history of dermatographia, and examination for dermatographia with Darier’s sign, which would have immediately indicated a mast cell disorder. This illustrates the lack of assessing and prioritizing the physical examination in US medical training which dropped bedside examination testing as part of board certification decades ago, contrary to elsewhere in the globe which has increased emphasis on live bedside history taking and examination skills.
27
@Daniel MacGowan. True, but in this patient, wouldn't the Darier's sign be transient and likely subtle enough to be overlooked?
1
@Daniel MacGowan
I have Systemic Mastocytosis without Dariers sign. It took a long time for me to get diagnosed because I have other allergies as well. It was not until a new doctor thought to check my tryptase as part of a workup that we had a clue.
11
You’re right about that. I went to an internist and instead of listening to my heart/lungs she has the CNA do an EKG and when that was normal decided that I needed a cardiologist referral for a stress test and an Echo. I was not symptomatic of anything cardiac or vascular but she practiced that new form of statically data based medicine and sent me to the cardiologist based on my father’s voluntary Tobacco inhalation habit starting at age 14 (death 54) and death from lung cancer. I was upset at her lack of basic patient examination (touch) care and humored her with a cardiologist evaluation, but he asked me why this internist sent me to see him. I later discovered that I had the beginnings of a basic rhino/ chest congestion allergens reaction to my new location. I never saw her again and I am fine. There are still (I’d like to believe) the best and the brightest entering med school then there’s data based outcome medicine and insurance companies and business prone politicians driving the health care bus.
3
Many people have allergies and anaphylactic reactions and the sad thing is many cannot afford to carry Epi Pens due to the cost which has skyrocketed over the last five years. Like diabetics, people with allergies who need life saving medicines like Epinephrine should not have to suffer and even die due to being unable to afford the medication.
55
@Jacquie
Thank Congress! And let's get over the idiocy -- I like my insurance-- and the bashing of a what would be a sensible without myriad middle men and pre-existing conditions covered single payer healthcare system.
Sometimes the problem and solution are both political -- DC created.
2
So glad this disease is finally coming out of closet! Last year I went to Norway, was stung by a wasp, and IMMEDIATELY passed out. I was helicoptered to the hospital, where they shot me full of epinephrine and steroids. I am also someone who never needed medication for anything. I was lucky to find an extraordinary allergist when I got home, Mitchell Boxer in New Hyde Park, who did blood tests and honed right in on MC disorder. One can't be sure about MCD unless one has a bone marrow biopsy. Secondly, it is said that "Systemic" MCD can kill you in 4 years, whereas those with "indolent" can live a long life. I'm on 3 allergy meds daily. They wanted me on "the shot" as well, Xolair, (relatively new, initially made for people w/asthma and chronic hives, neither of which I have), and has many possible side effects. Right now, I've decided to stay away from this shot ($1,500 - 2,000 per injection), because of blogs that listed, hair loss, weight gain, heart problems, and cancer as possible side effects. If my condition gets worse, I may be force to look at take the shot as well. MSD is not that well publicized. Thanks for this article.
26
I can't imagine life without Xolair. Basically - in any other life I’d be restricted to a bubble.
I take both a antihistamine and Singular, each twice daily, carry a Epipen, and have chewable childrens Benadryl with me at all times. I can not tolerate prednisone.
I get allergy injections in both arms twice a month. I have to follow restrictive diets, low antihistamine, low FODMAP, wear masks when necessary and limit my exposure to my known triggers (dust, pollen, direct sunlight, hot and cold temperatures, ozone, perfume, insect bites, etc) - but for Xolair injections, one in each arm, twice a month, right before my two allergy injections. Hands up, Hallelujah! Xolair has decreased my extreme episodes. I also use to have upper respiratory infections on a regular basis, but not one, knock on wood, no pneumonia or bronchitis since being on Xolair, going on 4 years and counting. The manufacturer has a gracious easy to enroll in co-pay program, I’ve never paid more than $5 for injections:
https://xolaircopay.com/eligibility
9
@galal
I wouldn't have it reading about the side effects; I even had to have my pneumonia shot in two doses over 30 mins with a nurse on hand. According to the maker it is not for anything other than severe asthma.
"XOLAIR is the only medication specifically designed to treat moderate to severe persistent allergic asthma in patients 6 years of age and older who are uncontrolled with inhaled corticosteroids. It’s also considered an add-on therapy, meaning your doctor would have you take it with your inhaled corticosteroid."
While it is entirely possible that systemic mastocytosis is a purely genetic disease, most modern diseases have epigenetic origins, meaning that there is an intersection between environmental triggers and genomic potentials that produce most disease. True, there are some purely genetic illnesses, such as Tay Sachs, Fragile X or Down's Syndrome. These are quite uncommon. What is extremely common, but only rarely considered by mainstream medicine, is the cornucopia of environmental toxicities, including Round-up, atrazine, other pesticides, micro plastics, DDT, BPA, GMO foods, heavy metals, EMF, and others. I've had patients in my practice with the diagnosis of systemic mastocytosis. In one case, the patient had fluoride toxicity due to extensive Ciproflaxacin use. In another, heavy metals were underlying the problem. In most cases, this "hyper-reactivity" of mast cells reflects nothing but a toxic state, which primes the immunes system to react strongly to other often unknown toxins to which they are intermittently exposed, outside of their (and their doctor's) awareness.
45
@Samantha
I wish you were in Oregon. It’s so difficult to find a knowledgeable doctor wrt these issues.
1
@Samantha where are you in RI? And are you taking new patients?
When I began to read the article I wondered if Vitamin D3 and non-burning sunshine could help her. Tho different but similar in many ways I watched my husband with the severest allergies for 30 years. Nine years ago I put us on 8,000 IU D3 and safe non-burning sunshine for a severe case of LPR I had and I knew from the literature that there was a chance it could help my husband with his severe allergies. 9 years later I am happy to say my severe LPR faded away and his severe unbearable allergies, that use to be triggered for nothing, disappeared. He rarely gets an allergy attack and when he does it is so mild. We both avoided horrible suffering with D3 and safe sunshine. We keep our D score hovering at 80 ng/ml. So good to see it mentioned at the end of this article.
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@Elena
Be careful as you could create calcium toxicity. 4000IU is the safest maximum dose. I have a Vit D deficiency and was on that dose and it did nothing to my levels BUT I reduced to 2000IU and one K2 tablets and my levels rose to normal.
As a sufferer of frequent acute and maddening allergic symptoms but no medical or personal determination of the cause at least 7 years in, I regularly read this article and comments in part bc I’m hoping to find illuminating information about my own predicament. Here, it’s the MN medical group, mast cell information, and vitamin D mentioned in the article and the mast cell society resource mentioned in the comments. I hope these help me and others.
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After years of debilitating GI issues, my mother read an article in her local newspaper about Mastocytosis. She recognized many of her symptoms, including a severe anaphylactic reaction to the contrast dye Gadolimium. She was diagnosed with Mast Cell Activation Syndrome, and although she is being treated with similar mediations to the woman in the article, she still struggles controlling her symptoms. I have similar issues, as well as an allergy to fragrance (which unfortunately is in so many cleaning and laundry products), but find that eating a diet that avoids high histamine foods is incredibly helpful.
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@J Miller cromolyn 200 mg orally 3 times a day was the first medication that really helped me with MCAS. I recently stated taking Nexium for mast cell control in the gut. I also take Clarinex, Zantac, Doxepin, Singulair.
Thank you for this story. I have had similar ER visits and found out that I am allergic to wine, fennel, capers, all berries, grape leaves , latex the hard way.. I avoid all and still have had frightening swelling.. I will read more about mast cells now.
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@deb willis
If you are allergic to latex, you may also be allergic to kiwi fruit!
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A veterinarian could have diagnosed this. I am retired vet. I have diagnosed mast cell disease numerous times. When the mast cells degranulate, they release the chemicals that cause the allergic reaction. This woman should have her spleen and stomach lining imaged to find the original mast cell tumor responsible for these reactions. In dogs and cats the tumors are most commonly skin tumors, but they can also be internal, with the spleen and stomach lining common sites. Boxers and Boston Terriers are prone to mast cell tumors.
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Thank you for sharing this. I suspect this may be what’s troubling my bloodhound. I’ll definitely discuss this with our vet.
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@Stephanie Hazen
She doesn’t have a mast cell tumor, she has systemic mastocytosis. From the article:
The most common of these is called systemic mastocytosis, in which many of those mast cells develop a mutation that makes them more excitable and more easily triggered.
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I’m not surprised. My vets have always been the best diagnosticians.
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At this very moment I am sitting in the pool of a hotel because I cannot go back to my room because there is something I am so allergic to that I can’t stop coughing. This happens occasionally. It’s like I am choking.
We switched rooms once
It’s a little better but there is something in there and I can’t go back.
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@Deirdre
I recently purchased a small ozone plug in from Amazon for around $30-40 bucks. It did help clear the rooms while on a recent trip.
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Dust mites.
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I've had this happen before! I called the front desk from behind the closed bathroom door at 11pm because I couldn't breath. Turned out to be the feather comforter and pillows. Take an antihistamine and request a feather free room, hopes this helps you!
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This is my favorite series in The Magazine. I always look for it first, read it, then explain the story to my retired nephrologist husband and ask if he can come up with the diagnosis. He’s pretty good at figuring out the answer. Please keep this series going!
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@Marion Eagen but don’t you miss the “Think Like a Doctor” column? I sure do! I wonder when the Netflix series will air. (Based on selected Diagnosis column cases featured a while back).
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@Marion Eagen the column also gets medical help to people who may need it.
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"And once a day, she takes vitamin D to make her overexcitable mast cells less likely to erupt into an allergic reaction. "
Does anyone know if taking vitamin D helps with more ordinary allergies such as allergies to pollen, dust, etc?
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@Fourteen14
And there are the articles on healthy eating -- that "never" mention vit.D3 nor exercise -- which also helps control blood sugar levels apparently... as does a high(er)fat , much lower carb/starch-dextrose diet.
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@willow
4000IU is the safest maximum dose. I had a Vit D deficiency and was on that dose and it did nothing to my levels BUT I reduced to 2000IU and one K2 tablets and my levels rose to normal.
Vit D doesn't help my immune system & allergies in any way whatsoever; I need to take steroids for 3-4 days for a severe attack along with antihistamines and sometimes Chinese herbal tablets. I take Vit D for another condition.
I hope they tested her for the Alpha Gal allergy.
https://www.aaaai.org/conditions-and-treatments/library/allergy-library/alpha-gal
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Yes, this one was easy for me to identify too. Unfortunately, the allergists I have met are often unfamiliar with rare conditions caused by "allergy-like" symptoms along with the wide range of other symptoms that mast cell patients get.
Systemic mastocytosis is one form of a mast cell disease. Mast cell activation syndrome, or MCAS, is another form. Recently another variation, mast cell activation, has been named--criteria for this one are still forthcoming.
Plan on ten to fifteen years for a diagnosis, and seek out the mast-cell specialists as soon as you can. The Mastocytosis Society, a great non-profit, provides support to patients and can assist in helping patients find the right doctors.
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Very interesting. This was a condition that was ruled out for me, as well as carcinoid tumor, as I faced about seven years of mysterious middle of the night episodes similar to the woman profiled. The cause of my mysterious episodes was eventually determined to be undiagnosed celiac disease--interesting because celiac is an autoimmune disease and not an allergic reaction. Also interesting, I tested negative for celiac (including both blood tests and biopsies) during that seven year time period, and finally had a positive blood test which led to my diagnosis. I had been living in Minneapolis when my episodes first started and then moved to NY, which probably delayed my diagnosis. If only I had been to see Dr. Benson when I still lived there!
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How is it that someone with such an acute allergic sensitivity and vulnerability to anaphylaxis DOES NOT HAVE an EPI-PEN with her at all times? Benadryl doesn't count in this kind of risk. She didn't know this either???? She needs to find a different doctor.
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@susan paul My guess is she couldn't afford the $600.00 for the Epi Pen which has skyrocketed in cost over the past few years just like Insulin.
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@Jacquie
#Why we needs a universal single-payer healthcare system such as exist in first world countries elsewhere.
Much less expensive for all concerned to fit people out with needed medical supplies than have them brought in in terrible condition to the ER.
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Thanks, too, to the emergency medical worker and, again, FDNY.
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Incredible how fast she received a diagnosis and that she wasn’t dismissed as a head case! It takes years on average. The shot every three weeks I’m guessing is Xolair. It would be helpful to mention that in the article.
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I was also guessing the shot is Xolair but would be interested in a confirmation. I took xolair to control and finally squash my idiopathic urticaria (hives) and angioedema. It worked wonders! Up until that point prednisone was the only thing that worked and the side effects were awful. The hives came back a year later and xolair did the trick again. I was not allergic to anything - just another autoimmune disease. The increasing prevalence of autoimmune diseases is fascinating to me but also worrying. I am encouraged by the increasing attention and research into the area.
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@LT
Yes...it would be nice to know how much Vitamin D(3)
too. perhaps Ms. Sanders is permitted to mention commercial names but the generic amounts would help.
I am making note of Dr. Benson in my "Hive" CIU) file...in my 5th year of toxic overwhelming welts...not rash ... and a diet that is so boring as I avoid histamine-releasing foods...fine doctoring is hard to find. (which is NOT meant as a political comment) and many run the other way when they hear my diagnosis! I get commiseration but help ends there.
For years I have looked forward to Ms. Sanders' articles here...even though I am lucky enough not to have the diagnostic puzzle du jour I learn something.
Thank you NYT Magazine
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Ah where can I find this great diagnostician who is still curious? I also would pay for a flash mob as mentioned in another comment.
I have done so much reading that I guessed what was wrong in this case.I knew the tests she needed and the treatment ( they left out 24 hour urine for MCAS). That's sad as I don't have a background in medicine or even chemistry.
There are so many of us hunting for help .
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As one who is allergic to nuts, the patient and her doctors may also want to consider whether she has ingested pink "peppercorns," which are not really peppercorns but are related to cashews. There have been reports of anaphylactic reactions to pepper blends that include pink peppercorns.
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@Rebecca L
Do you have any leads or references for this, or any place where it has been reported? I'd like to pass this on and would prefer to be able to give them as much to go on as possible. thanks.
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@Dee
Try the much maligned WikiP -- the info is right there including "tree nut warning." Google pink peppercorns!
I was having occasional severe hives that could not be traced to a food allergy. The allergist ordered blood tests, diagnosed hypothyroidism, and have been fine ever since taking medication.
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My excellent lung specialist in Brussels, Belgium, prescribed medicines for me which now keep me in good shape, without any symptoms of asthma. I take daily steroid inhalations (" Foster"), "Montelukast", "Loratidine" anti-histamine, and "Nasonex" nasal spray. What lead to this treatment was the second, almost fatal asthma attack in two years- I was unconscious and had a very low blood oxygen concentration, and they had to work long and hard to revive me. The next morning the attending doctor asked me if I had ever seen a lung specialist. I had not, and when I soon after saw my lung expert, he was practically enraged that I had not had specialist intervention. (I am an American living in Holland, but I was working and keeping an apartment in Brussels. My Dutch G.P. had not ordered a lung specialist.) It is a strange health complaint, in the sense that when the symptoms are over after treatment (in the first attack, just plenty of oxygen in the emergency room, in addition to arterial blood tests) one feels fine again. I was 61 years old at the first attack, but I had had many lesser asthma attacks, always preceded by gastrointestinal distress. This was something that my afore mentioned Brussels lung specialist did not understand- there was almost no literature on this. He tested for carcinoid syndrome- the result was negative, fortunately.So I was pleased to see mention of gastrointestinal distress in your article.
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@jonapaul: please be aware that loratidine is not a brand, but a generic form, and as an anti-cholinergic has recently been implicated/associated with Alzheimer’s disease. You may notice a mild “brain fog” with use.
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You may want to recheck the information you shared about loratidine. The sources I just reviewed after reading your comment recommended loratidine as a substitute for the anticholinergic Benedryl.
@jonapaul
That is very interesting, I have multiple allergies airborne which cause asthma and a very long list of foods. I have a good immunologist but I am to see a respiratory specialist in Nov (long wait for appt). And I've had gastro problems since birth.
Wow, fascinating case!
I have anaphylaxis to nuts and seeds so I'm interested in related conditions. It's good to know that there is a way to test for systemic mastocytosis. I probably don't have it, but at least I know what to check if I start having the strange symptoms described in this essay.
I know at least three people who need a diagnostic flash mob for their unexplained medical problems. I wish there was a website where such a group could be contacted and hired....
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@sfdphd There are medical crowdsourcing sites that the people you know who need help, could check out.
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Masterful diagnosis!!
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Interesting case and resolution.
Even more interesting will be the Chargemaster codes and prices for a Diagnostic Flash Mob. And then there’s the insurance EOB for the out of network, out of state consultation with the Mob. I suspect the patient may have cure-regret in the coming years as the relentless dunning for payment unfolds.
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@Tone It would be enlightening if each of these columns included a section detailing the Insurance Carrier and out-of-pocket costs.
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Deriding the medical profession is fashionable and indicates a mean and ungenerous outlook in the observer. As a proud resident of Minnesota and former medical transcriptionist, I know that doctors meet and discuss cases to learn and to contribute their expertise. That’s the benefit to them. Flash mobs don’t charge money either. They enjoy participating and entertaining. How about this? A flash mob of crabby, suspicious people could wallow in their own sharp tongues and bleak outlook.
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@Susanz
I love your comment.
I too am tired of the crabbiness that can be read on some threads by people who complain about everything and seem to see the glass half empty no matter what the upside.
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The galloping sound we hear in all these stories is zebras and not horses.
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@omedb261
I think they have included a unicorn or two, as well. Those are the most fun.
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@Stephen Rinsler the stories presented in this column are only "fun" if you don't have these conditions.
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@omedb261 If you want a combination, read the Mayo Clinic Proceeding's Resident Clinic columns. They're case-based and usually have questions discussing the common diagnoses for how someone presents a certain way but then the patient presented usually turns out to have an unusual disorder.
Zebras are also important to present because they are missed. For this specific column, mast cell disorders are starting to become more recognized and there may be more cases than we realize. I just learned about them a year or so ago.
I find that as challenging as zebras are, they look easier to solve in hindsight because the relevant data are presented in a neatly organized format. In reality, the patient may forget key pieces of history, the doctor may forget to ask certain questions, labs are delayed, etc.
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