Hello all,  I am from Plano, TX an was totally healthy until 5 months ago.  I was diagnosed with Idiopathic Anaphylaxis after an episode of hypotension, chest pain, shortness of breath, flushing and allergy symptoms resulting in a trip to the ER.  I was then seen by an allergist that gave me the diagnosis of IA.  I did not like this diagnosis so I saw another allergist who diagnosed me with several food allergies and MSG sensitivities instead of IA.

I liked this diagnosis better than the thought of IA.  I was prescribed Zyrtec, Singulair and Zantac and and epi pen and liquid Benadryl as a rescue drug.  

I have drastically changed my diet and stay away from all MSG, peanuts and corn.  However, I continue to have symptoms almost daily.  

In trying to find answers, I have been doing research for answers and that is how I found this forum which has been so helpful!  I appreciate everyone's incredible knowledge about these disorders!

Hi Gn bailey,
Welcome to the board!! We're glad to have you here

You certainly had an anaphylactic episode but from which condition is the question? One from a true allergy or a medical condition and which condition. I think its kind of strange for a Doctor to diagnosis IA with only 1 episode. Have you had any others?

You do have some common symptoms as a mast cell disorder but.. there are 3 or 4 other major possibilities that also have those symptoms. Stick around and we'll help you with the tests that need to be run to get the answers you need...

While you wait to see what the doctor finds, ask any questions and know we truly care. We're thrilled to have you with us
Hugs
Ramona

Youre tryptase levels coming up do point to masto.. and the meds your doctor put you on are extremely right.. good judgement for a doctor who doesnt know masto, Im quite well pleasantly surprised

Hey at least with the mask on, people will leave you alone LOL...
kick up that car AC to COLD and if you need to pull over, do it.. make sure you have a cell phone with you. Also write a paper and put it with your epi pen, in case you react and dont want to explain all the details with an ER crew. Use the words, "I have an anaphylactic disorder" They understand how to treat that, you can go into detail later when you feel better. I bet you will do fine  Keeping you in our prayers..

Let us know what happens!
Hugs
Ramona

Thanks so much Lisa for the info about the extra Zyrtec!  That makes me feel so much better!!

You have made me feel better about my first allergist too.  I had all but fired him because I did not think he took me seriously.  I was sure that I just had an allergic reaction to MSG.  But, I started having reactions to foods that were my safe foods and I started to suspect that this was more than just a sensitivity to MSG. So, I found another allergist and he was the one that did skin testing and blood work.  He diagnosed me with severe food allergies but felt that it was not IA.  This is when I found the specialist that I will see in June.  

I feel that I am winging it until I see her in June!  So, I really do appreciate the information that you all have offered in the forum.

I spend all my free time reading the posts!  

Thanks all!
Gaynell

Welcome Gaynell, Well I have to say at first I was shocked/jealous at your instant diagnosis of IA! But you should also be thankful even if it's not it, that is a good emergency diagnosis protocol for docs to start in an emergency situation.  In which you've already had. You may be correct and this isn't it and you have just developed some allergies. You are much more sensitive after an "episode" so your bod may calm down. If you are on the road to a mast cell disorder this is the place to do your research and it's fantastic you've begun to educate yourself while in the testing process. Rather than after the fact! I've been ill for 24 plus years, I've have true allergies to foods/chemicals/ drugs/preservatives/dyes/insects/ in all of that time along with severe reactions even in front of doctors. Also a ton of intolerance's which tend to give me bigtime gastro issues.The one time I did go to the ER they didn't believe me but did decide to "premedicate for allergic reaction" to the cat scan they wanted to give me because they were sure it was appendicitis,,,,,, guess who's abdominal pain, vomiting, low bp, got better on the benadryl and prednisone pre med for the test and guess who needed more after the "non allergic dye"
Still not even a diagnosis of IA!
Anyway, you did have an anaphylactic episode, if it is just allergy, then you will be able to eliminate the offenders and keep an epi and be well!  Intolerance's will cause you trouble, they don't "test" positive so you are the lab! You get to figure it out! Those with a lot of gastrointestinal issues have a lot of intolerance's. really they are triggers however most people recognize intolerance. Instead of an allergy or intolerance, the offending item triggers the mast cell degranulation. No matter the title, emergency treatment of all are the same, antihistamines, steroids etc, patient specific!
I'm hoping you are not on the road to a mast cell disorder and will just be able to avoid your allergens. This sure did come on fast. But your set of docs really seems to be on the bandwagon for getting you figured out. It is so scary isn't it? Lisa's advice is so exact with the extra medication when you feel something coming on. I just re read everyones response, don't like you're new triggers are preservatives, and gas etc. I sooooo understand those along with the corn and many more. Please really check into the inert ingredients in the medications you will try, brands all use different ones and corn, milk and the dreaded pregelatinized startch which can be from all sorts of sources, they put that lovely one in all of the "1 a day or 24 hr" pills. I have to take the smaller mg more often and they don't have that in them. I'm guessing thats what makes the pill "last so long". My comment on your mask would be to make sure it's a carbon type of mask, a normal dust/particulate mask will do absolutely nothing but filter particulates not chemicals. Do a search and you'll find some, you can search multiple chemical sensitivity and masks. Don't forget to put the vehicle air on "recirculate" that will help with outside issues. Although I am sick a lot and to a lot of things I still am a fighter, many people had not clue I had this issue until recently, when I've finally had to say no or actually let people now know do not come over wearing perfume.  I live a full life, frustrated at times yes, I don't dwell on what I can't do, A pity party is due sometimes yes, but then I'm thankful for all I do have. You will become tuned in to your body and will be able to get yourself out of trouble before it's too late. Also I premedicate when I know the probability of me having a more serious reaction is much greater. Going to someones house , to the mall or shopping in general  I take two benadryl along with the other antihistimine protocol. I do tolerate a particular coffee so I do my benadryl with a chaser of coffee , other times I will take extra other antihistimines as many have noted, it really does help. Dye free benadryl is my lifesaver, it works when the going gets tough! I wanted to suggest you get that, you mentioned you had liquid, just make sure you're not having issue with it, it is full of no bueno ingredients. I order the dye free on amazon, got sick of running all over town to find it. As Ramona said pre print a paper and wrap it around your epi pen of your current meds/allergies, also have one in your purse for and educate your daughter. I would also have emergency protocol printed out for the mast cell degranulating drugs. just as a safety precaution, you already react to many things now, so they should not take a chance with those particular drugs. I believe they have an emergency protocol section here so check that out. Ok I've rambled, sorry I started out replying to your first message then noticed your second added and changed my response to fit the second bit of info you supplied! Thats what I get for only getting on here so late!!! I always jump on when I'm tired from the rat race then have trouble making sense! In conclusion, IA is a fantastic diagnosis from an emergency perspective, in which you've already shown to have more than one episode, you'd rather have that than, no diagnosis and then they tell you" no it's probably your gallbladder or your appendix, or just female issues,  nowdays everyone thinks they are allergic to everything! "  A lot of  ER's are still in the mindset that anaphalaxis is only when you cannot breathe and have hives. Also remember that we've all had terrible anaphalaxis episodes and have come out of them! Many times thanks to premedicating and medicating quickly at the onset specific symptoms we are able to totally prevent a full monty episode.

Hi Gn Bailly,

You mentioned the fear factor . i spent a long time feeling that i was waiting to be run down by a bus , but did not know when or how bad it would be . then I sussed it My epi pen works It does what it says on the tin .

So try and be at peace You ahve what you need to be safe .

The tests your allergist ran excluded heridatory angiodeama ( type 1 and 2 ) a third type exists which can be considered if antihistamines do not work . From what you have said they do
The normal thyroid antibodies rules out hashimotos thyroidosis

The tryptase is below the mastcytosis level . One thing I would say is that comparing it to a base line is important . So having one drawn anytime when you are stable for you , would be wise

I pre medicate for journeys and use extra medications as others have described . Aircon is my best friend . bear in mind to put the air on circulating within the car so as not to draw warm air in .  i find diesel fumes an issue and it is well documented as a mast cell trigger . My Uk equivelent of bendryl works well for me in this .

many hugs

Josie