Hi and welcome. Just a quick response from me right now because it is after midnight as I write this and I am tired. The reason the doc won't do a mast cell biopsy is because that is not how you test. We don't test specific areas of the body for mast cell disease. It is a full body thing. Kind of like being pregnant - you either are or you aren't.

The way to test for Masto is to do a bone marrow biopsy. You are in one of the few places which know how to do it correctly when testing for Masto. I have heard that it is hard to get a ton of Masto help from Mayo, though, due to their doctors being a bit closeminded on their requirements to diagnose it. Plus I don't know if they even acknowledge the condition of mast cell activation syndrome, which is treated by the Boston Mast cell researcher, Dr Castells and Dr Akin at Brigham and Young Hospital at Harvard.

So if you end up with a discouraging diagnosis from Mayo. (As in they don't know or don't think you have mast cell disease), don't give up hope. We can give your specialist names to check out if you need them. It is good that mayo is ruling out a ton of stuff for you. That will help you in your investigation.  

Hi and thanks for the replies.  My triggers are mainly food, smells are a new trigger, mold is terrible for me, and cold is a trigger.  The anaphylaxis with eating certain spices is the worst, most scary thing for me.  Do the mast cell stabilizers help with that, and does the Zantac? (I don't take it regularly--right now it's mostly Claritin and liquid Benadryl).  If you all have any advice as to what meds help the most with that, that would be great.  I really like the GI doctor at Mayo and I think he will be a big help to me, but I still feel really sensitive after the reaction I had at the end of October.  It's scary being home alone with my kids a lot because my husband is working out of state most of the time right now:(  This website is very helpful and has the most information I've found so far.  Thanks--Sarah

Haven't read all of the replies yet but from your initial post we are very similar. My triggers are food, scents, meds and started out of the blue.

Completely unscenting my life, stopped using ALL products, going on an organic rotation diet ( I started with low histamine), staying hydrated, getting lots of sleep and experimenting with MCAS meds with the help of an MCAS doc is what helped me. Also reading about those with environmental illness to learn how to cope with the scent issues.

I was essentially turned away from Mayo and not given any useful treatment options because my tryptase was normal. I would do whatever you can to get into a MCAS expert such as those in Boston or South Carolina or get your local GP to ask them for remote help.

Keep us posted

Sarah,
I don't know any thing about why you were told to be cautious about using your epi.  You might have to ask here on the forum. I have never used my Epi(i should have a couple of times), so I'm not the best one to tell you when to or when not to use it.  I have read if you feel like you are going to pass out then use it.  I always use Benedryl Dye Free capsules for my 1st emergency med. then I would go for the Epi if the benedryl did not work.
Obviously, if your thoat is completely closed then you should use it.  I know people that are sensitive to sulfite (found in the Epi pens) are still instructed to use it in an emergency.  Always call 911 if you have to use the Epi.
Yes, the throat stretching(there is a medical name for this proceedure) did widen my esophogus, but it swells easily and I don't know if it was worth the procedure.  I had this done before I knew my throat was swelling due to triggers.  But, yes it did widen it!  I was sore after the proceedure, I gargled with salt water for a few days.

As far as adding to the trigger list...You will read about people talking about a bucket theory.  For example usually people start the day with an empty bucket, through out the day we fill our buckets with foods or scents.  It can take all day or just a few hours to get a full bucket. If you are unstable it happens pretty quick!  So your bucket is pretty full and you eat that carrot and low and behold you have filled it and its "overflowing".  So does that mean you are now totally allergic to carrots?  Maybe or maybe just slightly with tons of other things in your bucket.  The reaction is the same either way.  So you have to figure out your triggers.  I was reacting to mixed veggies.(anaphilylaxis)  This was before I had a DX or medication.  Now I could probably eat mixed veggies with out a problem, if I was sure my bucket was not full and I was stable.  You will eventually figure out what is going to tip your bucket.  
I would highly suggest making a food diary.  You need to write  down EVERYTHING you PUT IN your body...not just food but meds can trigger too.  Usually the inactive ingredients are the problems.  Lots of us have trouble with the dyes with the numbers(red 40, yellow 10)  oxide dyes seem to be safer. You need to write your reaction to foods after you eat and the next day.  Somethings can have a delayed reaction.
You should look up the Elimination diet.  It is horrible!  You just eat a few thing for awhile then you add one food at a time, by doing this you can see what foods trigger you.  I belive they recommend chicken and rice to start with. (with no spices) Horrible but very effective.
Just to let you know carrots are moderatly high in salicylates.  
I have read that sometimes during anaphylaxis that your blood pressure will go up before it drops, its like your bodies way of tring to help itself.

How does your stomach feel?

Dear Sarah,

I am not an expert, but your story is a lot like mine (I posted on July 19, 2011) for the first time.  I don't know what I would have done without the help of so many who care on this forum and the guidance they gave (and are still giving me).

There is so much to learn and although many of us have a lot in common,  we are different at the same time.  Just as redbird said, what works for one may not work for another.    But....the suggestions you get here are always excellent to pursue.

Like you, I get ridiculously high BP when I go into anaphylaxis.  For some of us it is a compensatory action (reaction) as our body tries to adjust itself to what may eventually be a "crash" .  Soooo....the epi works to settle the mast cells if you are either hypertensive or hypotensive.  Does that make sense?

If you do have a mast cell disorder, the release of hundreds of chemicals into your system can make you feel like you are having a panic attack.  Norepi and epi and histamine, and on and on (as you well know if you are a nurse), puts our systems into overdrive.  I was diagnosed with panic attacks, like you, and now I know they are mast cell degranulations.  I am not saying this is what is happening to you, I am just saying that it is possible that this is what might be happening.

Debbie has a heading as part of this forum that I believe says "Start Here".  It would be very helpful for you to start there and do some reading (in all your spare time, right?)    It explains what tests you need to ask your physician to order to rule out other diseases that can cause similar symptoms to masto. Many of us are diagnosed by what we "DO NOT" have rather than what we do have, if that makes any sense.  As much as I understand all of "this," a BMB is NOT done unless your tryptase is elevated or if an expert in mast cell disorders suspects systemic mastocytosis.  **OK...forum leaders, please correct me if need be.**

I can relate as far as your diet.  I have been eating 6 foods for just over 13 months.  For me, I started reacting to soy and dairy and I kept adding to the list.  I went to see an allergist and he told me he thought I was "allergic to the process of eating".  In a way he was correct.  Sometimes our buckets become so full that the process of digestion actually causes symptoms (i.e itchiness, dizziness, swelling, hives, stomach upset, bone pain, etc). It's not the actual food (although it can be). But that is why it is really important to keep a food diary like Pam suggested.  Once we "collect" that information and understand what "sets us off" (what we call "triggers,) we need to avoid them.  (At least until we know what is really going on in our body!)  I am not sure how much you have read, but triggers are things that cause our mast cells to release their chemicals.  So keeping a daily log is perfect. This can be a challenge because sometimes we have immediate reactions and sometimes we have delayed reactions.  Perhaps some of the most knowledgeable leaders on this site can help explain that better than I can (brain fog is a big part of this as well and it's getting late).

As Ana stated, for most of us a low histamine diet is essential.  For me, I also need a low tyramine diet (it's really a NO tyramine diet).  Also, if your foods are becoming extremely limited, and it seems like they are, then it is important to rotate them if possible.

One comment you made caught my attention because I have dealt with it many times.  You said you have tunnel vision. I am wondering what you mean by that.  Could you explain it more?  At times, when I look at things, the top part of my vision is just black..sometimes it is just a " black spot" and the rest is blurry. In my experience from talking to mast cell specialists and autonomic neurologists, they both have suggested the possibility of it being a mast cell degranulation and/or POTS. I don't want to overwhelm you, and this is a lot of information, but sometimes some of us with mast cell disorders can have (but not everyone!) an autonomic dysfunction. I think I need to stop there as I am not sure how much reading you have had time to do.  You may already know all of this.    What I do when this happens is immediately close my eyes (and keep them closed), lower my head, rest it in my hands or on my knees and sit or lie down.....take some deep breaths and stay as calm as possible. It is the scariest reaction I have as well. It can last up to five minutes or more and I can get panicky really easy if I don't follow "my" format.  Again...we are all different so you may have a different "process" than I do that will help you more.  But, it does go away!  As Ana stated, get LOTS of rest, keep HYDRATED and HYDRATED some more!  OK?

I (we) just want you to know that there are many of us with similar symptoms like yours.  Again, starting from the beginning is REALLY important as there are other things that mimic mast cell disorders as well.  It is really important they be ruled out. OK?  

I do want to "ditto" Ana's comment about Mayo.  I too was refused help at Mayo.  I live fairly close to Rochester so it would be wonderful to be able to get help there.  I have a confirmed diagnosis of Mast Cell Activation Syndrome.  If you would like more information as to who I saw or information from anyone else on this site, we would be glad to share that info. with you.  I have been fortunate to have been both to Charleston and Boston.  It seems overwhelming, but not having the right answers to your questions and a plan in place that will help you the best way possible, there could be a lot of needless frustration.  I am not saying there are not a lot of good docs out there...There just are NOT a lot who really understand mast cell disorders/mastocytosis.

Oh.....many of us can not take NSAID's (did I mix those letter up??)ugh...   You may want to looks at the Mastocytosis website...tmsforacure.org   This will be very helpful as well.  They have a list of possible meds that are not well tolerated by those with mast cell disorders.

Again.....there are a lot of wonderful people on this forum and they will help you with any and all questions you have.  Please ask anything you need to, OK?

Take care...hugs, Lynda

What a helpful post, Lynda, stocked full of good advice!

P.S.  I try to drink water all day anyway, but why does staying hydrated help?  Also, why do some people say they can only eat very over-cooked veggies?  Thanks!