Three years ago, Crystal Goodwin, who just turned 30, lived a fairly normal life. She had a full-time job and enjoyed hanging out with friends, working out at the gym and going on trips with her sister. A rare disorder called mast cell activation syndrome changed Crystal’s life almost overnight.It all began in September 2011. Out of the blue, she had severe intestinal problems — pain, inflammation and bleeding. Soon after, about every three weeks, sometimes, twice in one week, she had anaphylaxis, which is a severe, potentially life-threatening allergic reaction. When it happens, the immune system releases a flood of chemicals. The blood pressure drops suddenly and the airways narrow, making it hard to breathe.
Anaphylaxis symptoms
- Skin Itching, flushing, hives, swelling
- Eyes Itching, tearing, redness, swelling of the skin around the eyes
- Nose and mouth Sneezing, runny nose, nasal congestion, swelling of the tongue, metallic taste
- Lungs and throat Difficulty getting air in or out, repeated coughing, chest tightness, wheezing or other sounds of labored breathing, increased mucus production, throat swelling or itching, hoarseness, change in voice, sensation of choking
- Heart and circulation Dizziness, weakness, fainting, rapid, slow, or irregular heart rate, low blood pressure
- Digestive system Nausea, vomiting, abdominal cramps, diarrhea
- Nervous system Anxiety, confusion, sense of impending doom
“I’d just walk into work and all of a sudden I’d have anaphylaxis,” Crystal told me. “I didn’t know what was happening. It felt like something was taking over my body. It did not feel right at all. I just knew there was something wrong.”
Anything and everything seemed to trigger the anaphylaxis. Crystal became afraid to eat or drink, to walk into a new environment, to smell or touch things, to leave home, to leave her bed. She could no longer work. Countless trips to the emergency room terrified and exhausted her. For a year, she was bedridden. For a year, she had no answers. In October 2012, she saw a specialist at Brigham and Women’s Hospital in Boston and was told she had mast cell disease.
Mast cells are a type of white blood cell found in the immune system. They contain histamine, which helps fight infection, but if too much is released or released inappropriately, it can wreak havoc. “When someone has a mast cell condition like Crystal’s, suddenly their mast cells just explosively release chemicals — out of the blue, sporadically and unpredictably, “explains Dr. Marguerite Pennoyer, the allergist Crystal now sees in the Portland area. “The cells line your gut, your skin, your respiratory tract and blood vessels, so you can have multi-system effects.
There is no cure for mast cell disease, but there are medications to control it — or at least, make the attempt.
Today, Crystal is on 39 medications, which she must take four times a day. Most are for her disease, such as antihistamines and steroids, and the others are for their side effects — steroid-induced osteoporosis, for instance. When she’s having an allergic reaction, she has to increase the dose of some of the meds. “For example,” she says, “Sunday night I broke out in hives, so I had to take extra Benadryl and last night I had a moderate allergic reaction where I was really close to going to the ER, but thankfully, I got enough meds in me to calm it down. I’m constantly taking extra. I’m on tons of antihistamines, and I’m on more if I have symptoms.”
When she’s having an allergic reaction Crystal’s entire body usually turns red, she itches all over, gets bad intestinal pain and diarrhea, her lungs swell and she has trouble breathing, gets light-headed, and feels nauseous.
She’s not as terrified as she was in the beginning, but still gets scared and has nightmares. Her social life is basically non-existent. No more going out with friends. Some are afraid to come near because even a faint smell of laundry detergent or hand soap could trigger an allergic reaction. “I’m always adding to the list,” she says. “Tape, certain plastics, paper dust — I had an allergic reaction to a paper shredder one time, just from the dust. It was one of my worst reactions, actually. Extreme cold, extreme heat, even the sun can cause a reaction.”
A saving grace is daily workouts at Snap Fitness in South Portland, where, so far, she hasn’t had a reaction. Staff know what to do if she does — Call 911 and grab the epinephrine autoinjector. Personal trainer Darren Cook had never heard of mast cell disease before. Now, he’s well versed. He not only helps Crystal work out, but he’s also become a friend and strong advocate. Recently, he came up with the idea of holding a Push-Ups for Crystal Challenge to raise money to help her with medical expenses. With the combined efforts of Snap Fitness and Back in Motion Physical Therapy, the challenge raised $7000.
Health insurance issues
If battling a horrendous disease wasn’t enough, Crystal has found herself caught in the middle of some health insurance battles as well. Because she can’t work, she collects Social Security disability benefits — about $20,000 a year. She applied for Medicaid, but only qualified for a spend-down program that required her to spend $8,000 out-of-pocket every six months before anything is covered.
Instead, she chose a Marketplace plan and qualified for an 87 percent subsidy.
In October, because of her disability status, she became eligible for Medicare, but after researching all of the plans, she discovered that many of her medications were either not covered or had a high deductible. On top of that, the monthly premium would be $500. It added up to about $150,000 dollars a year, which she could not possibly afford.
She decided to stay with the Marketplace plan, but there was a catch. She would no longer qualify for the subsidy and will have to pay an additional $150 in premiums. Here’s what Medicare says:
You can keep your Marketplace plan after your Medicare coverage starts. However, once your Part A coverage starts, any premium tax credits and reduced cost-sharing you get through the Marketplace will stop.
It’s a federal regulation and apparently, there are no exceptions to the rule.
When Crystal called the Marketplace to explain that she wanted to keep her current plan without the subsidy, she was disenrolled, then reinrolled in the plan. The consequence was that on October 1st she started at square one, with a $4500 deductible. The $1500 she had paid toward her original deductible was gone and no one seemed to be able to do anything about it.
She has spent countless hours on the phone, talking to one person after another, trying to see if she might qualify for a subsidy again and if the deductible could be rolled over. She has had no success. She decided to set up a gofundme account to raise money to help with her expenses.
Crystal’s Marketplace plan is through Anthem Blue Cross and Blue Shield of Maine. I contacted them and after she signed a HIPAA waiver giving permission to discuss her case, I asked about the issue with her deductible. This is the reply I received from Rory Sheehan, Director of Public Relations:
“It is important to note that insurers cannot make changes to plans purchased on the exchange without direction from the health insurance marketplace. Members with relevant life or eligibility changes must report these directly to the marketplace and this information is shared with an individual’s insurer. We are aware of Ms. Goodwin’s change in eligibility and had already begun the process to credit her deductible towards her new plan. We are working diligently to complete this as soon as possible and appreciate the opportunity to serve her and other members across the state of Maine.”
In other words, they are rolling over her deductible. A customer service rep will call her when the process has been completed.
Crystal was thankful when I shared the news. She still plans to take on the federal government about the subsidy loss. Without the subsidy, not only is her premium higher, but her deductible went from the $1500 she had already paid to $4500 and she will have to come up with the difference.
Worrying about her health insurance coverage and how she’ll pay her medical bills has caused her a great deal of stress. Constant stress is bad for someone with mast cell disease. Really bad.
Could her disease ever go away? Sometimes it will simply burn itself out, says Dr. Pennoyer. It could take years though, and she’ll be left to cope with the aftermath, especially from all those medications. The specialist at Brigham and Women’s told Crystal he’d never seen someone this severe before. “Their hope is to be able to put me in remission, so that way I could go six months or a year without a reaction, but it’s been three years and the most they’ve gotten me to is every six to eight weeks and then I’m back in the ER with another reaction.”
Hello Diane:
One to one, Crystal’s situation is awful. I have the same condition and have been really sick – it will be five years in February 2015!! No end in sight. By choice I am on less medications, but that is probably only because I am 68 and have neither insurances or help to travel to doctors in Massachusetts. My condition is heavier on hiving and less on the respiratory aspect (but equally on the GI troubles), but nonetheless disables my ability to sleep – causing more stress and tension. My curiosity here, is just how many of us are suffering with this condition? What are the actual numbers?? I think there are more people with this problem that we know about. I also feel the GMO crops may have helped induce this, and I have zero confidence that it will ever, go away. After all most of us have been eating GMO foods since they were introduced around 1996 – even our feed animals are fed the same dangerous crops, creating a perfect storm of damage to our bodies. Like Crystal, I soldier on but the bleak outlook is very hard to handle.
El, thank you for your comment. I’m so sorry you have to go through this. According to the NIH, The true number of cases isn’t known. It’s generally considered to be a so-called orphan disease.Orphan diseases affect approximately 200,000 or fewer people in the United States. I will see if I can get more information for you.
I am in the process of being diagnosed with MCAS. It’s been aweful. So debilitating. The reach extends to every aspect of my life. I have five kids and the moments are long and frequent that I can’t even get out of bed. Or we have a good few days up to two weeks, then I have an episode that can last a week or more.
I saw the picture. Of her on the bed with all those medications and I recognized so many of the. Because I take them too! And I have weird res welts and bumps that just appear out of nowhere and take forever to go away. I get dizzy and weak and lightheaded and my heart rate and blood pressure change rapidly and breathing and speaking become difficult. Sometimes o can’t move at all.
It’s hard and it’s sad and I never know when I will just crash. I can’t make plans. I can’t try or push it or let myself look forward to things.
It’s sad and hard. But I find comfort and hope in answers. And others understanding finally, I hope
They think I have hEDS, POTS, MCAS (this), Gastroparesis and many allergies. Etc.
Thank you for sharing. Very comforting and validating.
You are welcome Kristina. I’m sorry you have to go through this and hope you’re getting the support you need.
It was really interesting to read this article, as I am similarly affected but I dont take any medications as I get allergic reactions to most things I have tried and I have tried just about everything on the market (but over the counter and prescribed). So now I use herbs / vitamins and other supplements to help as the medications have failed me – I got sicker and sicker when I was taking everything the doctors prescribed, which I faithfully took, fully expecting to get better. The turning point of the medication issue for me was when one night I couldnt breathe properly and was wheezing (and this was having taken the antihistamines and corticosteroid inhalers and cream for the tops of my hands, which kept getting hives). That night I decided that enough was enough and I was not going to take any more medicines as they were just making my symptoms worse, not better. I had to find some other way to get a handle on these allergy symptoms because I just could not live that way any more. I was so sick of being that sick.
Similarly to Crystal I started getting sick all of a sudden around the age of 23 and I am now 48 and the symptoms continue – some years they wane a bit, but recently they have been much worse and I think that could be due to stress maybe,
I have it all – the hives (from sticky bandages of any type and also some medications, including some antibiotics and even just from washing my hands too much when it’s cold, despite the fact I use organic products for the highly sensitive without perfumes or any chemicals), the allergic reactions to a whole range of irritants (perfumes seem to be the worst as you come across them every day in people’s personal care products – it feels like a full frontal assault on my body when I am confronted with strong perfumes and it’s very stressful), the constant coughing for hours and feeling like my lung are going into convulsions when I am so irritated by some trigger to the point that I cant breathe properly. And yet when I have been tested for asthma, I am not even borderline asthmatic – I just have asthma-like symptoms to the chemicals that trigger me.
The other irritants for me are brand new furniture, new cars and newly built houses/apartments – the smell from the paints, glues, foam, material, etc – just set me off with the coughing and drizzly nose, allergies and then I get sick for weeks! And I only have to be around those chemical irritants for sometimes just a few seconds and I start to react and continue to react for a while. The longer I am exposed to an irritant, the longer the reaction I have.
And conversely, I dont even have to smell the irritant (for example my nose will be completely blocked due to my sinuses being infected), but my body will still react.
Then I have allergic rhinitis which occurs during spring time and it make the other allergies to the world so much worse – I even get itchy when I eat certain fruits and raw nuts.
It’s ridiculously debilitating and people dont seem to understand until they see my reaction and then they tell me they never would have believed it if they didnt see if for themselves, live in action so to speak.
Like the person above, I also wonder just how many people are allergic to the world like us?
ZT, El’s comment had slipped past me and I just now responded to it. As I told her, the NIH says the exact number isn’t known. It’s considered to be an orphan disease. Orphan diseases supposedly affect about 200,000 people in the United States. I was overwhelmed to read your story — I can’t imagine having to live like that. I wish I had a magic wand I could wave to make you and El and Crystal be well again.
I have had terrible allergies since I was 5. I have been taking decongestants,antihistamines and nasal steroids. I’ve had skin problems mainly on my hands arms. I turned 33 in January andeveloped a really bad rash on my hand and I started having chest when I ate bread. I really hate going to the doctor but but discovered online that Im allergic to gluten. Shortly after I started to get sick eating, vegetables,milk,meats everything tasted weird. I also started getting nauseous at work. I also thought that living in Alabama we have a high pollen count and I could. Be severly allergic. Lately I can only eat maybe 5 things and eating out is a thing of the past. I think I have really high histamine levels so I have taking histdine supplement to keep the levels even.Taking Benadryl. Everday is no fun.I also have lost 43 lbs in the last 4 months. Im getting used to eating ggluten free food but only eating grapes and pairs and drinks and food with no color or preservatives is hard. Im happy to see that there are people who are living with the disease and continueing to live life. I have not been to the gym in months but I have found vitamins and other forms of proteins to take. Keep persevering Diane. I also think Histidine. Supples will help you and you won’t have to so many meds.
3-4 weeks ago I found I was severely allergic to strawberries, then cherries and more. I itch profoundly every night for 2 hours or so. Use Benadryl gel. Spray vinegar used to work. My friend has severe mast cell disease & she told me my lesions look like hers (FB friend I’ve never met). My arms especially are all boogered up with scars, etc and I used to have great skin. Rash can be anywhere or everywhere on my body. I worry about anaphylactic shock but so far only skin and the gut feeling my bronchial tree is affected, hard to explain clearing of throat that feels so good. One night I had it only on both hands — redness, hives, severe unrelenting itching. Usually it is bilateral. If on neck or shoulders it is both sides. Anyway thanks to FB and Google I’m going to the doctor tomorrow he has medical students with him. I may call first to have them research mast cell disease. Grateful I don’t have stomach symptoms. What blood test should I ask for? Anyway, I am sure I have it but pray I don’t and doc thinks it is something else. I think I know the trigger — I was taking mess which got all changed up in January. I had been fine taking an occasional hydrocodone but could not get them with new government regulations. I started taking NSAIDs I knew I had reactions to in past. Alleve worked good but I’m scared to take it Just seem allergic to most food, perfume, paint etc. now I’ve vented. Suzanne Johnson
Iamsuzannejohnson@gmail.com
Ask you dr about getting 300 mg xolair injections every 28 days. I was diagnosed with mast cell activation disease 1 year and 2 months at the mayo clinic in Minnesota. All my symptoms started when I was 23 and I’m now almost 42. I’m still trying to get answers in regards to my bladder and stomach. I had a colonoscopy 2 months ago and there were increased mast cells in my small bowel. I will be doing a biopsy for my bladder and then a bone marrow next. I feel for you and to be real keep researching and don’t give up.
I got diagnosed about 6 months ago at age 57. The year before that, my poor husband had to rush me to the hospital 10x in 12 months. I had some strange allergies to chemicals in some plastics, DEET (in mosquito repellent, put me into convulsions and delerium at age 10), lots of colds and chronic ear infections from age 4 right up to now,. In my 30’s, I had many episodes of what I thought was food poisoning, severe stomach cramps, diahreah, sweating and vomiting. That was always happening at Chinese food buffets so I stopped going to them. Had another episode of that in Las Vegas after eating eggs and bacon at the buffet. Then another episode after I had a bacon cheeseburger at a restaurant. Nothing for years after that. Just before moving out to Missouri,I had 4 weeks of sudden, unexplained diareah. Tests showed nothing. I was OK out here for a year and the got a Pneumovax 23 vaccine where I had a rash that wrapped around my arm from my shoulder to elbow that lasted 2 weeks along with low grade fever and feeling sick. Exactly 2 months later, I got anaphylaxis after eating breakfast of eggs and bacon at a restaurant.I’m thinking the vaccine caused my mast cells to over react. Had 10 anaphylactic episodes from sprouted grain bagel, cheese cake, strawberry cheerios,MSG ,bacon (the nitrites). Then I would really if I went from my air conditioned apartment into the heat outside and the other way around, too. Wilds wings in body temperature going down to 95 and feeling very ill and like passing out.I have tachycardia where I get breathless. My cetirizine has made me hungry and caused me to gain 40 lbs.This is really terrible.
My goodness, Terri. I can’t imagine what you’re going through. Is there anything that has brought you some relief? Are you seeing an allergy specialist?
I would strongly encourage you to try CBD oil. I had swollen mast cells around my lingual tonsil, intestinal bleeding and anxiety for the last 40 years. All disappeared after a week of use. I use Green Roads 550 CBD oil which only CBD and no other Cannabids like “THC”. It’s derived from hemp and not marijuana. I take around 10mg 3 times a day.
Anyone with Mast Cell, look into Mold!!! Chronic Inflammatory Response Syndrome (CIRS)
I have MCAS also, for the last 20 years but only recently was correctly diagnosed. I was on disability also, but have been working again (full time) for the last 3 years. Not surprisingly both the government (my former employer) and Blue Cross screwed me over too: I was not given FMLA so was forced to “resign” from my job and though I paid the cobra payments on time, Blue Cross dropped my coverage after only 6 months. Ironically, I’m a lawyer but without family support was too sick to fight the insurance company. This cost me tens of thousands and set my medical care/treatment back by over a year. This was just as the ACA was rolling out and I ended up on Medicaid, but almost none of the providers in my area took it so other than the ER it took me 4 months to get an appointment to see a doctor and I ran out of all my meds other than what I could afford private pay, disastrous since I also have Hashimoto’s Disease. All in all I lost most of my retirement during my disability even though I was receiving SDI for the first year. Three years back in to the workforce and I’m still suffering financially, making $25,000 less than I was almost ten years ago. From what I understand from my MCAS specialist this is a very common syndrome—a study in Germany found that 17% of their population suffers from it—but unfortunately people in America are regularly misdiagnosed, possibly because so many of us are women.
HI All: January of 2015 the power company in Maine turned on the “Smart” grid (SG) which broadcasts very unhealthy (despite being within “safety” guidelines) amounts of microwave radiation, as do cell phones, wi-fi routers, cars, computers, tablets anything “smart”, and hospitals have enormous amounts of radiation. In reading the posts it seems that a number of people on this site also became ill in 2015
I am a certified electromagnetic radiation specialist (EMRS). I was studying for my EMRS when the SG was deployed and data collectors (cell tower relays that look like white lamp shades on top of telephone poles) were installed on both sides of my home 150′ and 300′ away and I became extremely ill with microwave sickness aka electro-hypersensitivity (EHS). If you have MCAS, EHS, MCS or any other inflammatory disease then pay the relatively small price to take the “smart” meter off of your home and get an “electromechanical” meter… ask specifically for an electromechanical electrical meter that will not broadcast at all, they have to come read the meter, if they don’t come read it it is broadcasting dirty electricity and this is an MCAS trigger as well as a carcinogen.
Now 2021, after being extremely ill this winter and getting well enough to think straight and function again, I have done tons of research and realized that EHS is a subset of MCAS. This learning is also a function of the alternative medical communities bringing EMF related illnesses & MCAS into the light. I recently started treating with many of the Rx mentioned on this site and I am getting much better. THE NUMBER ONE TRIGGER FOR ME AND MCAS IS RADIO FREQUENCY RADIATION (RF), an environmental pollutant that people are being told is safe, decades of peer reviewed & government research say it is not safe.
I read most of the posts and no one has mentioned radiation. Do your research on a hard wired computer, not Wi-Fi, Turn your radiation emitting devices off at night.. all of them, so your body can repair itself while you sleep. Look up the https://bioinitiative.org/ and start with the conclusions. Or Environmental Health Trust.org https://ehtrust.org/
Everyone, do yourself a favor and dramatically reduce your RF exposure. Get an inexpensive RF meter and you will be surprised at the number of things in your house that are broadcasting RF and harming your body, putting your mast cells on high alert, whether you can sense it or not.
According to peer reviewed research Multiple Chemical Sensitivity (MCS) & EHS have similar pathways in the body; turns out MCAS, which is not a rare disease anymore, encompasses most of the inflammatory diseases that so many people are suffering from theses days. I have paid a huge price for speaking out on these topics.
Someone did mention MOLD , look into MCAS, mold & Water Damaged Buildings (WDB) Shoemaker research. Exposure to RF dramatically increase the mycotoxins that mold in the body puts out, it also aggravates Lyme Disease and co-infections. I know that many people are addicted to their devices (vice is in the name device) but do you want to sacrifice your health to use your cell phone?
Look up Arthur Firstenberg’s book the Invisible Rainbow, the history of electricity from a health perspective, or read his newsletters for current information. After becoming familiar with his work I realized that all of my health issues began when they turned on the cell phone network here in 1997, no one could figure out why I got so sick. Turns out people all over the world not only got sick but mortality rates went up directly following deployment of the cell phone networks around the world. Put the pieces together. Use a browser other than Google to look up research on these topics, Google is biased on this subject for obvious reasons.
In Good Health to All. Keep yourself safe, shield your body from dangerous RF, connect with people in healthy old fashioned ways. Sent from my hard wired computer with no Wi-Fi or radiation of any sort.