Hi Kirk,

Your symptom list caught my eye, and there is much there that could suggest a mast cell disorder.  As others have said, though, additional  possibilities need to be ruled out.  

I'm relieved that your doctor has changed your test, but I believe it might be wise to pre-medicate before an MRI with gadolinium.  Also, make sure you are really hydrated before the test and drink a lot of fluids after it to help clear it quickly from your system.  The reason I say to consider pre-medicating is that it may be rare that gadolinium causes mast cell degranulation, but you don't want to be the rare one that has a reaction.  If you pre-medicate as Dr. Castells recommends, any reaction would be suppressed or much milder and gentler.

About 20% of masto patients also have true allergies (about the same as the general population).  I happen to have both.  Positive allergy tests will not rule a mast cell disorder in or out, but they'll give you more information.  Still, they can show you some things to avoid that may be triggering you.  Allergens, such as mold, dust, etc. can be triggers of mast cell disorder symptoms, as they can cause the mast cells to degranulate, but it's not always a true "allergy."  Same with certain chemicals and perfumes/fragrances.

If you have allergy testing done, it might be wise to have the blood tests rather than the skin testing, since it's recommended to never go off your antihistamines for skin testing.  Antihistamines can mask reactions in skin testing.  I'm sure you know about exercise induced anaphylaxis.  This can be related to mast cell disorders or not.  Taking your antihistamines an hour before exercise can help.

One very important thing you can try that might relieve some symptoms is a low histamine diet.  You can find it at this address:  

www.urticaria.thunderworksinc.com/pages/lowhistamine.htm  

This diet removes foods which either contain high levels of histamine or which cause direct mast cell degranulation.  These foods are very common triggers of symptoms in mast cell disorder patients (IA, MCAD, and SM)  You must avoid everything on the list for a period of time before you will notice fewer symptoms, if high histamine is one of the culprits.  I would say you should notice improvement within days to a couple of weeks at most.  If I were you, I'd stay on that diet until you have a confirmed diagnosis of yea or nay on both allergies and mast cell disease.

The most common foods that people eliminate and notice a big health difference might be leftover foods and fish.  If you want to save leftover food to use later, it must be frozen as soon as possible after cooking.  As both leftovers and fish age, certain bacteria in them proliferate that produce high levels of histamine.  Tuna is the worst fish for this, and it can produce toxic levels of histamine within half an hour of its death.

Diarrhea is a common symptom, but not everyone with a mast cell disorder has it.  It can also be masked by diet or supplements, especially calcium, and it can vary in severity a lot week to week or day to day.

You mentioned high bone density.  Is that still in the normal range?

One more FYI, I had tightness in my joints without visible heat or swelling.  I believe it was part of the inflammatory reaction of masto in my case, as it rarely happens now since I'm on the correct antibiotics.

Intermittent cognitive impairments can occur from mast cell activity.  We call it "brain fog," and it usually comes and goes, depending on the level of wellness we are having at the time and which meds we are taking.  Well, good luck in figuring this out!  It's a process....

A brief update.

I had upped the dosage of rupatadine that I was taking to two a day. It made me a bit tired, but did a better job of reducing my symptoms. I saw my GP this morning, and I mentioned the two meds that had been recommended here, so gave me a script for cetirizen (Zyrtec). I have an appointment with an allergy doctor in two weeks, so we're going to wait and see what he says, or if he's familiar with mast cell disorders.

This morning, to see what happened, I decided to not take the rupatadine. What a mistake; I felt like crap, as if I got a sudden flu.

BTW, how do you define the "brain fog" that has been mentioned? I get a couple of cognitive symptoms, and I'm wondering if it's the same thing.

Hi Kirk, good question!

Brain fog is a real symptom of masto and it's basically an incapacity to think clearly.  When the mediators get intense, they interfere with the neurological system and this is why we will find ourselves suddenly being unable to think straight.  Sometimes it's mild, other's it can be so strong that you sit there wondering what hit you and even what is wrong.  Just to try to form a sentence can be extremely difficult and I've come to the place of realizing that if I have to say to myself "WHAT IS WRONG" this this right here is the warning sign that the Brain fog has hit and I'm about to lose it!!    I have literally sat on my couch saying to myself, What is wrong?  What do I do?  What is wrong?  and not being able to answer it!!   I would equivilate it to almost like diabetic patients who are about to go into a seizure!!  I have diabetic friends and they are billingual as I am.  When they both (father and daughter) have their sugar getting way too low, they can't speak or understand orders in Portuguese and they find it easier to function in English, their native tongue!  They've found themselves doing things that they can't figure out how or why they did it.  Masto brain fog doesn't get to this point, thank God, but it gets close!   Although I'm still able to reason in Portuguese, it's such hard work that I prefer not to!  If I'm asked a question, I'll not be able to find the words to answer it and get this kind of strained look on my face as I'm struggling just to concentrate!   Yet, I"ve trained myself that if I find that I'm asking myself as to "what is wrong" then this is the warning sign that I'm about to explode into activity and that I must hit in with the antihistamines or I'm in trouble!!!   I find that when this is happening, it seems like I move and do everything in slow motion and that my body responds that way as well.  

So, this is what brain fog is.  Thankfully it appears to be temporary!!


Lisa

Kirk,  I'm sorry to tell you this but your doctor does NOT understand mast cells and most certainly does not know mastocytosis.  Anaphylaxis can indeed happen with hypertension for there is a rare hypertensive variant form of masto.   My pressure has gone up to 220/110 with contrast injection!!   All of my crises have hypertension during them but there are other times when the mediator release is not so acute and I will have my pressure go down as far as 60/40!!!!    I've also got POTs which is called and Orthostatic condition and my pressure has been seen by my angiologist as high as 230/110 just because I was standing waiting in her office.   This is a well enough known situation for anyone who knows mast cells.   But not every doctor knows about this and my masto specialist learned about this with me!!  She didn't know either and she's a specialist in masto!!   There's a lot to learn about this disease!!!

I have information as to Orthostatic Hypertension and I also have other information as to the hypertensive form.  If you PM me with your email, I'll be glad to forward this information on to you so that you can give it to your doctor.

Lisa

Hi Kirk ,

I am glad you are ok . I am worried for you though .

Your doctor is falling into a classic problem , that he doesn't beleive in serious reactions without low blood pressure . It is possible , you may have had a low and your body compensated with high pressure . This is a common occurance. It is known as compensated shock .

Abut half my serious reactions have had high blood pressure when it was measured .

I think In the current moment you need to keep yourself well dosed up on antihistamines .  I also think your current presciptions are not sufficient to prevent these reactions . Mine wasn't until very recently . Seeing your GP is not wanting to prescribe any more , You can purchese a number of antihistamines over the counter .

you have benadryl -
and
Hydroxizine  - 25 mg twice a day is working for me

ranitidine is avilable here OTC - in 75mg tablets . Most of us here are on 150mg twice a day or 300mg twice a day . In your situation I think 300mg twice a day would be good .

You can buy chlorpheramine mealate - Piriton - liquid bendryl or this can be used for emergencies .

I am not saying any of this to concern you . BUT you need to keep yourself safe . Please trust your body and seek help if you need it

If you can email the company who make the cleaning products you can identify these ingredients as avoids

I know you want this to be an allergy and for now it may be . Do I recollect you saying your GP's existing allergy tests came out negative ?  I know a mast cell problem feels like the worst thing . With the right doctors to work with , they can offer the tools to help you be safe .

What symptoms did you feel in your mouth and nose ?? With inhalants , like cleaning materials , I tingle / swell in my mouth , my nose blocks and is unbearably itchy . I suspect removing yourself from the trigger helped a great deal . Did your doctor listen to your chest or anything like that ?? could you talk to him through your breathing .

I hope your breathing has settled I completely understand the can't breathe moment .

Josie

Kirk,

We all have different symptoms with mast cell disease, and those symptoms can change from one attack to another. For example, I never have swelling and rarely have breathing problems. Yet, I go into fullblown anaphylaxis that no ER recognizes due to my lack of classic symptoms. My typical symptoms are (in this order): flushing, diarrhea, feeling hot, sense of doom, severe body tremors, brain fog, passing out due to blood pressure plummeting. SOMETIMES, however, my symptoms will go straight to tongue tingling, then diarrhea and passing out. Or I might go straight to chest feeling tight, as if someone is pressing on it. I don't have swelling problems then, just that feeling. For me, this symptoms is the most dangerous because I get no warning and I know that what will follow will be passing out if I don't get histamine blockers right away. With all of these symptoms I can take an extra allegra or zyrtec and even a singulair if needed, and then the symptoms will stop within 10 minutes of taking the meds.

So, yes, your symptoms could be mast cell related!

Josie and Lisa are both completely correct in their advice. The only think I would want more info on is that Josie suggested Benedryl as one of the daily meds, and I know on this forum that there have been discussions as to the reasons that this is not a good idea for daily longterm use. I don't remember the discussion, but I am sure that someone who does can jump in and mention it here.

Hi Kirk ,

I am relieved that your throat wasn't swollen mast cells and the chemicals produced , histamine and others , can definately cause bronco  ( lung tube ) constriction ( narrowing ) . It can also cause swelling of the airway tubes further reducing the middle space which air moves through ( lumen )  The difficulty in breathing comes from trying to breathe past the restriction.

This is a serious symptom . I suspect that away from the cleaning products it improved even by the time you got to the GP .

I am pleased you are seeing an allergist . I just wanted to share my experience with you .

In your response i sense you trust your doctor and that is good IF they know what they are doing in very specalist areas . My GP also has another mast cell patient . It helps me as he understands how hard it is to control and the doses of antihistamines required to produce stability . When I first met him , October , he told me he had been guided by the local immunologist to give double the standard dose . BUT even though he knows this he does not make decisions about my symptoms . His line is , if I am feeling ill , call an ambulance . In the meantime we are seeking opinion as you are .

I had a reaction , which sounds very similar to yours yesterday in oct 07 . I had no chest infection , but a VERY tight chest , made worse with inhaling bath foam vapor , where you could hear me coming with the wheeze . This was before I got consistently poorly . I was put on salbutamol 4 puffs 6 times a day and a steriod inhaler . The salbutamol is to relieve the tightness ( broncoconstriction ) and the steriods reduce any swelling . It is best taken long term as it works well and helps prevent and/ or reduces the severity of swelling in a reactive situation .

This is a medium inhalant reaction for me . So I completely understand

I am now on symbicort 200/6 . Which contains along acting version of salbutamol and steriods .I have 2 puffs twice a day . In a  situation like you were yesterday. I have 4puffs straight away or 6 if I am progressing.

I am now on montelukast ( singulair ) 10mg ( up to twice a day at the mo ) , which was developed for little ones with asthma , which is not controlled with inhalers . It works on blocking the activity of leucotrines , which a re involved in airway restriction form both sources .

I am in the same situation as deb , but I do get serious airway compromise . I do itch , flush , swell ( not always ) , wheeze , heart rate up , dizzy , very wheezy ,  throat close . I can do no early symptoms and be dizzy wheezy and throat close in 3 minutes . Or itch for half hour , then get worse . Or itch , stop and hours later do more serious symptoms .

I / we / you don't know which direction this is going to go . A good site for reference for what is a serious symptom the EPI PEN website is very informative . Looking there and the mastocytosis website will give you a source of confirmation of the advice we are giving .

Your GP is not alone in having his view , he is just not aware of the many varients of mastocytosis . I have paper by the top specalists , which may be useful for you to read . The vids on you tube , mast cell activation symptomology are also good .

So all you can do to control your symptoms is very important. I spent a period of time not knowing why these things were happening to me .

I hope you are feeling better today

Josie xxxx

Hi Kirk

If you find yourself in that situation again , get your wife to video you on your mobile as many of us experience similar problems .

My sister had the very same with my niece 2 weeks ago . It seems she may be our next generation . My mum had symptoms more mild than me but perfumes and cleaning products have bothered her for many yrs .

A check of you peak flow would be useful . Its a hand head machine , with a tube you breathe into , which measures your exhaled lung volume . This will get your current level .It may be back to normal or slightly below . It will also give you reference if you have to measure it when restricted again .

I am pleased it is so lovely and you are able to have lunch outdoors xxx

Josie