Okay, so I stepped out of my area of knowledge into autoimmune and there are exceptions.  But then I'm talking about AGGRESSIVE disease and I think that it's pretty safe to say that when we're talking about any aggressive disease that doctors find that you've got something aggressive bugging you.  They may take their time to pinpoint exactly what it is, but things scream at the doctors that something is seriously wrong.  

But I know, however, that I'm not wrong about masto.  And Heather's right in that they take many other exames and look at the big picture they paint.  

Kristi, although it's easy to get upset when you see any one exam which is not normal and it makes you wonder and get upset, what any doctor will tell you that normally only one marker is not a big deal especially if other markers are not saying anything to them.  You've got to have more than one thing that's off, and as far as masto is concerned, that of systemic mastocytosis, the classic, neoplastic disease, that of what invades tissues and can become aggressive, this is not at all indicated by your tryptase of 5ng/mL.   And, another thing is that tryptase can go up and down, it doesn't always just climb.  

So again, Kristi, don't get all tied up in knots over this tryptase of yours, you in a good situation if you've got masto - it's a good sign.


Lisa

Kristi,

Are you taking the Zantac twice a day?  That's what most of us do, or we alternate Pepcid and Zantac.

Be sure not to eat or drink anything besides water within 2 hours of bedtime.  That nearly cured my morning nausea.  Doxepin helped a lot, too.  I take digestive enzymes, but with your reacting, anything new should be taken in the doctor's office.

Hope you can get to Boston to see someone!  Good luck!

Hi Kristi.  I'm a new member and also live in St. Louis.  I've been seeing Dr. Anadkat, Dermatologist, at Washington U for 5 years.  He recognized my masto right away and confirmed it with a skin biopsy.  Last month he finally tested my tryptase level and referred me to Oncologist Ken Carson, also at Wash U, when my level came back at 170.  I had a bone marrow biopsy yesterday, so we'll see what's next.  
Anyway, the above two doctors are familiar with masto.  Good luck!
Sue

Hi Kristi

I have had doctors focused on all sorts of things What you need is a mast cell specialist They and they alone are qualified to properly interpret your results . We have a great deal of knowledge here But you need that which we can't give you - a diagnosis

Regards the foods , trust your instinct Why do I say this ? because I tested negative for everything I have reacted to , but when I said OK , I will try things , my consultant urged caution . That if it had made me poorly , to not reintroduce . Only try things you were avoiding . But haven't tried . If you have never liked it , then I have found It should not be tried ( be on the naughty list ) .

My morning nausea and vomiting has been made much better with 300mg Ranitidine twice a day and an anti - sickness , which is helpfully an anti histamine . It still sneaks through . I have also learnt to lie still and let my meds work learnt the hard way .

My stomach will mis behave with absolutely any input when it wants to . including water My partner hands me the bucket when I am very burpy or swallowing lots .

I also have vomiting after diarrhea as the spams go back up to my stomach . This is much better with ranitidine

Jose

Joan,

Thanks for your reply. I agree that I was on a downhill slide and getting allergy shots was just one thing of many that exposed my illness. I am trying not to blame myself. I'm just grieving for the old me and want to get to a place of stability so I can at least feel normal some of the time.

I would really like to find a dr. in St. Louis to treat me. It's nice to hear from another (former) St. Louisan and I thank you for your suggestion. I found Dr. Graubert's bio from Wash U online but he doesn't seem to work there anymore.

I think I'm going to try Sue's dermatologist and oncologist. I'm wondering if an oncologist will see me since I have a low tryptase. I'll give it a try. I also have an appt. with an ENT on Monday since my biggest reaction symptom at this point is angioedema in my inner ear, upper thrat above my palate and through what feels like the lymph nodes in the left side of my neck.

Today I reacted to a box hair color. Thank goodness I took the allergy testing advice and tested it on my inner arm. I immediately got the above listed symptoms. I'm so darn frustrated. Now I have to live with all the gray hairs this illness is causing!

Kristi

Hi Kristi,
Your allergy treatments could have triggered mast cell degranulation, it happened to me, no one listening and stupid me Marine tough kept trying, I'd end up vomiting, diahrreah and almost dead on a weekly basis, (no asthma symptoms and staff had no knowledge of gastrointestinal anaphalaxis with this allergist, , anyway they kept "diluting" the solution and I'd be just as bad. I finally asked to speak with the dumb(*&(*& doctor and told him I'm rejecting this immediately, theres no way the irritants in the solution are what is making me sick what is the base it is in, thats what I'm reacting to. It's too immediate, there was a horrible fumey feeling I'd have right afterwards........ He finally listened rather than saying, his usual It will get better,,,,, and Hey guess who's severly allergic to phenol?  The base...... I can't believe I paid for that treatment! Anyway It did up the seriousness of my disease. I am much more chemically sensitive now. Bigtime. Scents would bother me but I rarely went into anaphalaxis as long as I got myself out of the situation. Some chemicals I would almost pass out. After months of reacting to those treatments, I don't have long before It gets very scary. I didn't have time to read all the responses in full so sorry If I repeat someone anywhere! Food Intolerance's are just as dangerous as a food allergy, with a true food allergy once you find the culprit, you eliminate it get an epi and you are better. Intolerance's are much harder to figure out. Also please do the research yourself, paper after paper speaks of the absolute crap shoot an allergy test is! It is a guide to use and give you ideas, they have a huge false positive/false negative, also the "tests" only test a specific protein of a food from one particular variety, there are all sorts of other cellular things to react to in foods. Here's a comment from Barbara et al, a seriously papered person on mast cells and gastrointestinal issues: "However, these tests can often be misleading due to their significant number of false-positive and false-negative results. In a study of symptomatic patients with endoscopically proven mucosal changes to certain food allergens, only 46% of patients had positive skin tests and only 50% had positive RASTs.19"
Back to the allergy desensitization, for me and possibly you we triggered every time we were desensitized. For an allergic person desensitization works. For a mast cell disorder all I was doing was triggering a massive degranulation every single time. It was awful, I still can't believe I didn't die. Once I figured it out they were willing to switch the serum and come up with a non phenol concoction....... Ummmm I was done with all of that! No more not ever for me!
On the food aspect. You may be here already, but for now look at food by each item. Not, a muffin bothered me or a sandwich. There are gazillions of ingredients in every aspect of those! Gluten free Oats, with some raw sugar  or pure maple syrup or honey. That's it! Pure meat with absolutely Zero added anything including no "natural solutions or flavorings"  In the recipe section I have something posted for the I cant eat anything crowd. For now possibly don't have anything raw.  When your gastro system is in distress and being destroyed by all sorts of factors it messes with your permeability, meaning you eat something and more goes through your intestines than should have, suddenly your body says hmmmm a jasmine rice protien, I'm going to attack it and guess who's suddenly intolerant to jasmine rice. ( Ok that was a terrible non medical explanation, I've got a migrane currently and am flushing and not feeling so bueno but wanted to comment) Everyone with gastro issues probably has intolerances and it is absolutely unique to every person, even the histimine foods, 70 percent can't have chicken but 30 percent can. For me I can have the breast, or white meat, but not dark. This week even the chicken is no good. But I'm in a flare, so I'm juggling the best I can the little bit I have. and extra medicating and not even considering anything that I can have "sometimes" those are for the good days! Look at your food, item by item, keeping it as pure as possible, avoiding obvious triggers, major histimine foods, moldy foods etc. Hopefully then you will get your system to calm down and be less inflamed and then you can re introduce foods . I've been terrible lately and this will be the first Easter dinner I won't be having at my house. My relatives all seem to really not give a poo about the "scents" and if they are not wearing a perfume when they come over they've put scented lotion, or are wearing that lovely 14 day gain, DH just said you're too sick and I'm tired of watching you pop antihistimines with a smile on your face entertaining the very people who can't even come unscented for a day and then state, I didn't know it was that bad. Time after time.... I've finally decided Ok, not up to it this week and it's OK!  Back to the allergy testing, they did help pinpoint some for me and laughingly soooo wrong with some true allergies. I have tests that total opposites of each other.  I am fully aware of Dr Akins statement of never ever off any antihistimines for testing, and I fully agree with him! I don't believe there is an allergy test in the world you can take while on antihistimines! Food elimination and testing yourself will give you the best information. Anyone with a possible mast cell disorder in my humble opinion should not do allergy testing that requires being off antihistimes. I got very sick waiting for my testing to be done. 4 days is a long time.

P.S.S.s.s.  geeze I'm just full of little extras tonight. On the hair, just embrace the greys right now, you are triggering too much! This is the longest my roots have gotten, I have to keep putting it off until I'm having a good day so just strut your outfits to make up for the grey!
You will gain control with proper diagnosis/ medication/diet and you will be able to know what you can never ever expose yourself to and the "sometimes" things. Today I'm re experimenting on Ranitidine, I had a terrible reaction a few years ago, and had no desire to re-visit it. WEll I've failed many other medications and I'm back to it. I'm a mess I really need it so I'm trying another brand with totally different inert ingredients. So far nothing major,  I'm only one pill into it, but for me thats all it takes for a lot of meds, so far so good. I'm really hoping this is a keeper! Best case is it's inexpensive! The antihistimines have to help your ears out! Also food eliminations that too. There are gazillions of studies that show kids with chronic ear infections taken off of wheat, dairy etc and it gets better.  Also I so get the mourning your old life,
you can still have spunk, attitude and fun, it's perspective. Usually right after recovering from another anaphalaxis episode. Ever notice how you are so thankful to be alive! You are juggling other issues along with discovering what is going on and it is soooo stressful, in fact because docs don't want to listen to the list of symptoms and connect them! Argggghhh   Hmmmm does ranitidine make anyone hyper? I'm waking up! Back to the foods, again, not one single food is the same there are varieties of everything, grass fed, grain fed, I think there are hundreds of rice's out there! Just keep it very simple right now.