Hi - My name is Whitney.  I'm 46 & live in Northern Virginia with my husband - who is in & out of the country - our 2 Persian kittens and, occasionally, our returning college students.  Thanks to this forum for being my source of wisdom during the past 10 days, while my new allergist has tried to sort out whether I have a mast cell disorder.

In retrospect, I've been having "episodes" since I was a teenager - tachycardia, shaking, low blood pressure, red & white "splotching" of my face, as my mother put it.  However, my triggers were things that might bother many people, such as heat and local & topical anesthetics, so no one mentioned a disorder.  

For example, at 19, I experienced an extremely elevated heart rate during a "twilight sleep" nasal operation using one of the "caine" anesthetics.  I remember the surgeon bringing in my internist & saying, "We can't get her heart rate down."  Still, until recently, these symptoms subsided when the trigger was removed or wore off.  My dentist began using a smaller amount of novovcaine without Epi & that seemed to work.

Two years ago, I was on a hike led by a park ranger.  I was used to exercising, though I hadn't done enough of it in the recent months.  It was April, but it got up to 90.  We couldn't get back to the park service building except by walking miles back the way we came.  People were not happy with the heat, and a couple of them hitched a ride from non-hikers who were driving by.  I came up too late to catch that.  However, even older people who walked back didn't end up like I did - in the ER w/a 166 HR, red as a beet & losing control of my bodily functions.  They checked me for a heart attack, gave me 2 liters of saline, removed some ticks & sent me home with a diagnosis of heat exhaustion.  I had previously been sensitive to heat, and that has continued, but I became extremely careful about it.  

Last spring, my abdomen distended after eating a snack food called Full Bites from Vitamin Shoppe.  I was checked for gallstones, as I have a slow gallbladder.  No stones, but I changed my diet around to limit fats & gluten otherwise return to a more careful, organic diet.  However, within two weeks, I had to take an antibiotic for an abscess.  I reacted to Keflex, and they gave me Benadryl & Pepcid, which I learned was an H2 antihistamine.  

Just as I was finishing the substitute Doxycycline - which had me not eating much - I almost fainted in the grocery store, accompanied by tachycardia.  I ended up in the cardiac wing of the ER, where a doctor ordered saline & blood tests.  One, called a D-Dimer, came back elevated.  I later learned it was a slight elevation that could just mean you have a bruise.  The doctor did not explain this & yelled at me that I needed a CT scan because I could have a pulmonary embolism, though there was no other evidence of that.  

As Deborah has mentioned, avoid contrast dye.  I was too debilitated to fight with an ER doctor, though I did ask for Benadryl, given my drug reaction history.  I also ended up with non-ionic contrast dye, which is slightly less allergenic.  Still, I was ill for the next 6 weeks with redness, itching, insomnia & weakness.  I thought I had radiation poisoning.  I only regained functioning after using holistic measures.

I wanted nothing more to do with doctors, even my D.O., until this February, when I was put on Prometrium, which is a progesterone pill containing peanut oil.  On the second day, I had what in retrospect was a mild reaction to the pill - chest & throat tightness & a swollen abdomen.  My GYN told me I was allergic to peanuts, when I never had been.  

A few days later, I felt like I was going to pass out.  Urgent Care said it was anemia, but my CBC was normal.  I then had a minor biopsy from the GYN using Xylocaine without Epi.  A friend who drove me because my husband was out of town stayed with me afterwards.  As I was trying to sleep on the couch, she said my face was red with white spots.  She took me to Urgent Care again, where they asked me, “Is your blood pressure always this low?” and gave me Benadryl.  

A month ago, I got a red face & a swollen abdomen while eating a salad at a Japanese restaurant, which they told me was sesame, not peanut.   My family said I was really red, so I took Benadryl.  Now I did not know what to eat.  Things I’d eaten frequently in the recent past, like black beans from Chipotle, began to bother me.   (In retrospect, it could have been the Chipotle rice as well.)  I made an appt. w/an allergist.

On March 22, we had a new house cleaning service come in.   They told me, “Don’t worry, we use green products.”  Apparently, they offer the OPTION of using green products.  The cleaners they sent forgot.  We came home to a house smelling like 100 car air fresheners.  We opened the windows, put on all fans & turned on the HEPA filtration air purifier in our BR.  My husband woke up with a headache.  

The day after the cleaning, I came home at lunch & made Rice Expressions organic brown rice with sea salt.  I took it with me as I drove back to the office.  My nose began to bother me, but I though little of it.  About 2-3 hours later, my face felt like I had sunburn.  I developed diarrhea & my heart began to race.  I took Benadryl & Pepcid, ended up at the ER shaking & red as a beet with a HR of 121.  They tried to give me Prednisone, but up it came.  We told the ER doc about the cleaners & he said I may want to go stay in a hotel, but we’d left the windows open & fans on & the house smelled normal again.    Plus, at this point, who knew what we’d encounter in a hotel?

We headed to the allergist, who said my problem didn’t sound like a food allergy, as they really don’t develop in mid-life.  (Indeed, my peanut allergy blood test was negative.)  When my husband described my 2010 CT scan reaction, the allergist murmured, “mast cell.”  He said that iodine contrast dye can trigger degranulation of mast cells.  He said I needed an L-tryptase test.  

I was actually relieved on the food front.  For the first time in weeks, I came home that night with lessened food anxiety.  I looked up a low histamine diet & plain cereal was approved.  I ate a bowl of cereal that had – yes – brown rice in it.  Within moments, my HR spiked & I had diarrhea.  I got in bed, violently shaking & flushing.  I took Benadryl & Pepcid again & my husband called 911.

The paramedics said my HR lying down was 150, but my breathing was good, so I didn’t need Epi – which they didn’t want to give to me because my HR was so high.  My BP was also up.  They gave me oxygen & tried to get an IV line in, but could not until we were in the ambulance.  They said I am "valvey."  The head paramedic stayed with me.  I told him my allergist wanted to check me for mast cell & his eyes snapped.  He responded, “That makes perfect sense.”   He went into the ER & told them.  As they wheeled me in, there at the desk sat the doctor who had ordered the CT scan last year.  I told my husband not to let him near me.  A different doctor came in & ran a tongue depressor along my arm & the skin turned red.  At this point, they drew blood for the tryptase test & sent it to the Mayo Clinic.  

I had a rash on my legs after my next shower.  I saw the allergist this past Monday.  He advised me to chew my food very thoroughly before swallowing.  He told me to take antihistamines, though in my condition they are dehydrating me.   But as he put it, “Better dry & eating than moist & starving.”  Still, I’ve struggled to eat & work in the days since.  Baby food – no rice! – seems to work.  I flush most evenings.  (The allergist asked me if anyone else saw this.  Fortunately, yes, and I took pictures.  Otherwise, what, I’d be imagining it?  He also told me I could go 2 weeks without food, but that I needed to keep drinking water.  So I drank a steady amount & became overhydrated.)  

To combat the bloating, I was already off gluten, dairy & nightshade vegetables, now rice is a huge loss.  I’m having pears, applesauce, pureed blueberries & pureed sweet potatoes, plus baked organic “Smart Chicken” breasts from Harris Teeter.  I got through a few Kettle brand organic potato chips, but those worry me, since nightshades cause inflammation.  A few kernels of Trader Joe’s organic popcorn with olive oil cause me to wake up with a start, with a racing heart rate.   The eating advice on this forum has been very helpful.  I’m considering sorghum & quinoa as grains.

My allergist did disappoint me by saying that what I was experiencing was “not anaphylaxis,” because in the 2 recent episodes my BP went up, not down.  I’m glad to read here that he’s wrong about that.  On my latest test orders he wrote the diagnostic code 708.1, which is idiopathic urticaria.  

I’ve had two Reiki sessions & those help me feel stronger & calmer.  I spoke with my brother, and he had similar symptoms of bloating, redness, dizziness & sweating after eating Indian food a couple of weeks ago.   He described it as his stomach “bowing out.”  I advised him to get a tryptase test and keep records.   I am worried about him, as he is on beta blockers, which can blunt the effects of epinephrine if he should need it.  We also question whether our mother has a mast cell issue, as she went through a chronic fatigue type episode over several months in her early 40s.  She has been diagnosed with rosacea, though her redness comes and goes, so I'm skeptical.  Has anyone else here had family members with the same symptoms?

Thank you for being here,

Whitney

Hi Whitney ,

I am sorry you have had such a horrid time , i experienced similar ;-( But the doctors are on the right road now .

You can have anaphylaxis with high blood pressure . A varient of mast cell disease had a hypertensive version , you have had a low blood pressure episode , a copy of that ED card would be useful for you My blood pressure has been very high (200+ / 150 ) . It does drop but early in a reaction . I bought a wrist BP cuff and caught it - 70/40 . In my case my breathing deriorates before my BP bottoms out ( normally ) so I have had an epi pen by the time it does . The low I mentioned was just after an epi pen .

Most doctors can't accept anaphylaxis with high blood pressure , The other thing that your body does is compensated shock , where your body puts up your blood pressure to compensate for fluid loss and high heart rate . I think this may have been happening in certian situations .

There is an atricle here on triggers , you will find yours are there . I completely see that heat affects anyone , but mast cell people don't just  get heat stroke . We get activation of the mast cells and symptoms from the chemicals released . I think understanding these chemicals will really help you understand your symptoms .

When they scratched your skin you describe showing dermatographism . It can be a normal thing , but wit everything else it points to mast cell disease . As the extra histamine circulating leads to an over reaction to a minor scratch . I get this , you are in good company .

I think you should discuss antihistamines with your doctor as medicating will not affect tests . I also think you also need to see a specalist in mast cell problems asap . Excuse my tone , I say this because you are having near misses and you need to see a doctor who knows this condition It is possible you have another condition .  The alternatives need testing for asap as well because if you have other things they need attention . if not , you can then carry an Epi pen .

I have also had the expereince of high pulse = no epi pen . The first time i was epi'd in ED my pulse was 180 . It settled in an hour of having the Epi pen.

Foods yes , I felt as you did when i was told it was not a food allergy . I also went on to react again . This contradiction is because with a mast cell problems there are other routes by which mast cells burst ( degranulate) which are not due to the typical allergy route .

Certain local anesthetics are known to be more risky for mast cell patients . The mastocytosis society , has lists of anesthetics and their risks . There are also 3 vids on you tube , by the specalists Joan mentioned , which I think you will find very interesting . They are called :- mast cell activation symptomology . I ahve pointed some perplexed doctors to them . Mast cell disease is seen as an orphan disease , affecting below a set level per head of population , so it is mention briefly at medical school and many doctors will never have met one of us . So you will find you have to give some , even ED doctors , time to catch up

I think , From here , you should have pre medication for any procedure . there is a protocol available . You expereinces are no surprise to me . mast cells , in mast cell activation , can be triggered by pain , physical and emotional stress . So you need protection in any invasive procedure or those with risk of mast cell activation

Given you history , I would expect your tryptase to be raised . BUT it may not be . There are types of mast cell disease where the tryptase is not raised . Also tryptase is relseased whne mast cells burst and is highest in the 4 hours post an event . The 1-2 hour mark most so . So it may be it has just been missed .

Mast cell probelms fall into clonal and non clonal . Clonal means extra cells where they shouldn't be . Non clonal means a normal volume .
Both types of mast cells misbehave and burst too easily to triggers .
Clonal is named mastocytosis , various types . Non clonal - mast cell activation and / or idiopathic anaphylaxis .

Clonal types produce consistantly high tryptase as there are lots more mast cells to be naughty . This would give a high level at rest and /or in a reaction .

Non clonal give high tryptase only in a reaction or not at all .

There are exceptions to this . MMAS , is a clonal mast cell disease but the extra cells are not enough in big enough clumps in bone marrow to be classed as mastocytosis as its defined formally by the world health organisation . MMAS , typically has normal tryptase .

The medications are the same and there are some cross overs in tests . But the distinction remains

I would happily go through your past episodes and highlight possible triggers if you would like me to

Popcorn is on the low histamine diet , for me this does not apply to butterkist , its been a biggie inducer for me

My current diagnosis is idiopathic angiodeama ( swelling ) my doctors are catching up with my serious reactions . I have airway problems as my ED going symptoms , alongside tachycardia , dizzyness , bright red burning flushing , swelling . My tryptase is normal . I am still being investigated

ill stop now
Josie

Glad that your doctor is taking this seriously.  Do look up Starflower's post regarding how to proceed with testing to rule out other possible causes of your symptoms.  Hope your answers come soon!

Hi Whitney, and welcome to the board!!!
Im so glad you joined us and i think we have some help for you here.

Youre telling my story with the episodes you go through--and I worry that yours will get worse as mine did--I do NOT want to see you go through anaphylactic shock, so lets start changing things for you.

Remember one thing, that eating istelf may be a trigger for you (because you arent medicated as you should be right now)... Its because the bodys biggest venous pool of blood circulating, is in the stomach. Food or the act of eating stimulates the circulation, which can kick mast cells into reacting..

First you have to get on the right meds for you--you need; both H1 and H2 blockers, proton pump inhibitors and mast cell stabilizers. With a mast cell disorder, it isnt enough to take meds AFTER you react, you must be PRO-ACTIVE. Once you have reacted, the next few days its easier for your body to react again, see?

Now remember that the foods you ate werent necessarily the reason for the reaction (like the rice).. BUT... DO stay on the low histamine diet.. once you are stabilized, you can try each food and see what you do and do not react to.. you must be stable first, before trying this.


Next Point,  you react and you sound like you have what we call 'Hypertensive Variant'.. it means that your BP spikes when you react.. but I would bet that you BP also starts dropping within 3 minutes?? It may drop to the point of being very low. In other words, you need to see exactly how your body responds to epi---many of us who have that same trait--(hypertensive variant), do very well with epi--it makes our BP gp back to near normal... but do NOT take epi until you are tested for Carcinoid Syndrome.

You said something very telling--about the Dr saying you are very "valvy". What that means is, you veins and circulation also react when you are having an episode. You are in the beginning of circulatory collapse..thats why they have difficulty getting an IV in you if the dont do it quickly. So, remember to tell them, get that IV in quick, or they may not be able to get it.

Are you on any meds for high blood pressure?? If you are, then remember that we cant take beta blockers--it will make those reactions worse and even trigger them. We do much better with Cardizem, which is a calcium channel blocker--and it will even help the tachycardia.

If you have a rash on you after a shower, it means one of two things.. you are either using water that is too warm for you OR you are using a product in the shower that is triggering you.

Exercise is also a trigger for most of us--it doesnt mean you wont ever be able to exercise again--but for now, stop.. until you figure out what type, amount of exercise is safe for you and build up slowly.. do NOT do this, until you are stable.

We notice that our family members usually have a strong medical history of auto-immune diseases. Also, most DRs say that this is too rare for there to be more than one family member with it--but recently they are finding out this is wrong and have found more than one peson in a family that has some sort of mast cell disorder.

Whitney, you will get used to the dryness of the antihistamines,.. just carry a bottle of water around until then.

Did they eve give you the results of the Tryptase they drew?? Try to get that result, it might help alot with the others DRs. I dont know about any calculations with the results.. its a number.. over 8 is higher than normal, over 20 is considered indicative and diagnostic of mastocytosis...

Im thrilled the DR ordered the 24 hour urine for Histamines.. Please let us what what comes of it. Take care of yourself. stay out of the heat, no hot showers stay on the low histamine diet--keep a diary from now on of what you eat, what meds you take and how you feel during the day.

Talk to your DR about going on Zantac twice a day, include some H1 and H2 blockers and take these meds ever day, even when you feel fine--we are trying to AVOID episodes ok??  

Hugs,
Ramona

Oh, I should mention that you will find my story at the top of this "Introduce yourself" category.  

Hi Whitney ,

I have touble with toothpastes and body washes . Mine orginate from sodium leureth sulphate , the foaming agent. i ahve replaced all my products with SLS free products with no alcohol and I can bathe again and brush my teeth . I still fulsh when I brush my teeth , this is because you ahve lots of mast cells in your gums . i use a soft toothbrush and don't press too hard . This has stopped me itching Most bath products gave me trouble with inhaling the vapour as well as sitting in it .

Soaps wise I have to avoid gelatine . So , I can use one brand here in the UK .

Cool baths help a lot too as I can't tolerate hot water at all . i get overheated and itch even before any products come into play .

Meds wise I think you are under medicated at the moment .I ahve a diagnosis of idiopathic angiodeama . I ahve anphylaxis , I am just getting doctors up to speed . But I am not diagnosed yet .
As a guide I am on :-
am
Ranitidine 300mg  ( H2 for stomach and bowel )
ceterizine 10mg     ( H1 non drowsy , for chest)
piriton 4mg            ( H1 drowsy for chest and general itching )
hydroxizine 25mg   ( H1 drowsy strong , for brain fog and cystitis )
hydrocortisone 10mg ( for not working adrenals )
cyclizine 50mg ( antihistamine anti sickness )
oxycodone 15mg ( painkiller - best of a bad bunch )
paracetamol 1g    ( temp control , mops up prostogalndins )
loperamide as required ( for diarrhoea )
Singulair 10mg - for lungs and swelling

Lunch :-
pirtion 4mg
paractamol 1g

Tea :- piriton 4mg
paractamol 1g

Bed :-
piriton 4mg
paracetamol 1g
ranitidine 300mg
hyroxizine 25mg
caterizine 10mg
oxycodone 15mg (8pm )
Singulair 10mg

Overnight if required :-

piriton 4mg

I didn't tolerate allegra , due to the filler , I couldn't get a liquid form here ( UK ) . Most ppl here are on 180mg twice a day .
A proportion don't tolerate ceterizine ( zyrtec ). many liquids contain vinegar which is a common trigger .

I know this looks a lot , but it makes a huge difference to me . I still get minor flushing . My bowel still swells ( not as often as before )  . I have frequency of my bowels still , but no diarrhoea  or rebound pain . My constant pain is still present . I am waiting to see a specalist locally who comes recommended by the UK top doc for mast cell .  We are doing this as I have the oppertunity for a specalist who could see me in ED .

I would put money on you having had symptoms for many years you now see as normal which are due to this condition . I had , they are much better controlled

A mast cell specalist would be a real bonus for you I spent 20 months having anaphylaxis and close calls before I got to a specalist team who knew I was ill . The day they said they believed me , that they would treat me was so good . There are specalists who know this condition

Over time I have sussed many triggers for me . i can not tolerate any sulphite food preservative at all . Since clearing my meds and foods I have had an imporovement in my bowel and gerneral reactiveness .t
I was having lose stools 7-8 times a day on constipating medications . With searing reactal pain and a rebound to the right upper side of my
tummy . Now I have stabbing pains in the right upper side sometimes , in clusters through my oxycodone . Other wise my pain is controlled .

Between this and the meds I am only going to ED every3-4 months . It was every 3 weeks or less in spring .

It is spring here and I ahve avoided ED so far

I am hoping for gastrocrom , the mast cell stabiliser , as treating my abdomen will ( hopefully ) lead to me being able to wave goodbye to my painkillers . At the mo without them I am in a mess

The reunion ?? if you do go i would do so dosed up and eat nothing there . Drink your own beverages to reduce your risk . I can tolerate being around lots of alcohol for about half an hour before i get itchy .
My main problem in venues are the toliets and the cleaning products , cat people  and highly fragaranced people . You could make a skype visit , ask a friend if you remain in contact , or the organiser to have laptop , with you on video skype , so people can sit and chat to you , but they can keep their fragrances and alcohol fumes to themselves ???????

I have had to let events like this pass for me , as , at the time my risk was too high . This included my mothers 60th .

I hope you are well today
Josie

Hi Sweets ,

As I said before a normal tryptase does not exclude mast cell disease . Mine in 3 on a good day and 3 in a reaction .

I am glad your metephirines are also normal . It makes a pheao far less likley .

I live in Bristol , the next city over from bath . I visit bath a lot as I have friends there . One works in ED there , so if you ever have to visit you will find a team clued up about mast cell disease as she has educated her team . She is a sister . A consultant there spotted the potential of mast cell disease in me in April 09 .

I have also had problems since my teens , but they have got worse since july 08

Jose

Hi Whitney ,

Bendryl , H1 , with the drug name ending in amine is ok . This has come from Dr castells to one of her patients .

There was a bit of a mix up If you are open to the option of ordering from abroad . The company Boots , which has a pharmacy , hold sls free products , called the naked range . shampoos  , conditioners , bath products , shower products .

Some soap and glory products are sls free .

Body shop do a SLS free shampoo and conditioner - honey . A company called Lush , do handmade bath bombs ( fizzy ) . they have a branch in Bath , but I would get your husband in there as they have some sls products and I itch in there but I can use a few of the bombs .

I can use body shop soaps , the strawberry one . the cocnut and vitE ones make me flush .

TIGI do a shampoo advertised as sls free . It is but they have a very close ingredient so I react to this .

Bath has all these stores

Cleaning product wise I am Ok with non biological clothes soap . But I have only 2 home cleaning products . Disinfectant and bleach ( chlorine )  Everything else sets me off . especially vinegar based ones . 2 supermarkets here , use something to clean their chillers which makes me flush on my hands as soon as I put my hand on it . I also progress quickly needing instant medication . i don't go in supermarkets at all now . I do online shopping .

Anything whitened is a no go for me , As sulphites are often used for whitening .

Sensodyne pronamel is a UK toothpaste that I use it is the only one . You've discovered waitrose Just a tip , don't go in their loos , they are jammed with air fresheners . My near miss recently came from one . By near miss I mean just short of shock , but not far .  I avoid public toilets as much as possible . Service stations and waitrose have proved worse for me . I never thought I would complain toilets were too clean !!!!!!!!!!!!!!!!!!!!!!!!!!


When you visit the Uk , the bendryl is different . bendryl in the uk is a NON DROWSY h1 called ceterizine . which is a once a day drug

The US benadryl is a drowsy type one , ending in amine
The alternative drug OTC in the UK is piriton / chlorpenamine mealate

Hand care wise I have had the same experience . I use baby oil now . Even aqueous cream makes me itch within half an hour so i have somewhat given up .

many hugs
Josie