Hi all!! My name is Kari, and I am a wife and mom of three kids under five. Yes, our house is loud  I have had health issues that came to the forefront after a strange illness almost 15 years ago.  My mom has also had odd health issues and symptoms, so "normal" in my house was a bit of a moving target.  A lot of symptoms I experienced were never mentioned to doctors until after I got married, and my husband was shocked at all the things I considered "normal" and he knew that they weren't and insisted on going to the doctor  Having a chronically ill parent definitely changes your perspective on things

I was diagnosed with severe IBS after a misdiagnosis of Celiac disease, migraines, and chronic fatigue.  I'd never been able to work full time due to fatigue, and had to finish my university degree from home instead of heading into medical school...kind of ironic now!  When I was pregnant with my second child 4 years ago, I started experiencing "episodes" of flushing, feeling extremely hot, sudden headache, cramping, diarrhea, tremulousness, severe mental fog and tachycardia...and once my heartrate started to climb, I'd black out if I didn't get horizontal immediately.  It was very scary with a young toddler and a big pregnant belly, but my doctors were unconcerned and said it was "just pregnancy".  But the episodes kept coming closer and closer together, and alas, did not disappear when my son was born...in fact, they got worse.  I was diagnosed with OI and early in 2011 with POTS, and after I applied for disability, my cardiologist informed my adjudicator that the diagnostic criteria had changed and I no longer fit into the diagnosis.  Sigh.  Oddly they've never caught my true symptoms on a TTT, and I started trying to nail down why (since I experience symptoms all the time), and I realized the exam rooms were cold, scent free, and I was fasting.  It was around that time that I came across and article suggesting probing into MCAS for POTS folks with flushing.  Since my mom has always flushed, it never seemed strange that I did too....I didn't realize it was actually a symptom I've tried all the POTS meds, and it made absolutely no difference in my symptoms (which is what I also found with the IBS meds that I tried before).

Two weeks ago I had allergy testing done with an immunologist (only allergic to cats and dust mites), and she also ordered baseline and flaring Tryptase, urine methylhistamine, VMA, etc.  She is thankfully familiar with Mastocytosis, but I don't think has any idea what mast cell activation syndrome is, so I'm picturing a bit of an uphill battle here.  I when off of my antihistamines for the testing, and ended up with even more severe flushing and burning arms, multiple migraines and sores in the back of my throat.  For my follow-up tryptase test, I was able to induce a reaction with a piece of very rich chocolate cake....it worked like a charm, and I sure enjoyed it

I have already learned so much reading through the forum posts, and I'm very thankful for the transparency and spirit of compassion that I've seen!  I do have a few questions for the wise ones here...

1.  What kind of disability can masto/MCAS cause?  Although I have never gone into anaphylactic shock, I think I may have been experiencing recurrent low-grade anaphylaxis.  With each "episode" I have, I become extremely weak and fatigued, and physically just cannot stay awake.  Since this happens numerous times every day, there are very few things I can actually do anymore, and only am able to get out of the house 1-2 times a week when my husband is able to babysit me  I also require full-time help with my kids, as I can't be alone with them since symptoms come on so quickly and suddenly.  Can masto/MCAS cause symptoms like this?

2.  I have done A LOT of research on this type of illness, and I've yet to come across some solid articles about how to diagnose MCAS if clinical testing comes back negative.  Does anyone have any suggestions?  I'd like to have some info to take back to the immunologist at the end of March, as it seems as though she was quite happy to never see me again if my results came back negative.

3.  I've been carefully evaluating triggers, and although I can identify some (standing/physical stress, physical pressure, scents of any kind, chemicals, loud noises/lots of movement, different foods, heat, fatigue, etc), there are many that just can't be avoided and I often react even when I can't nail down a reason.  Is it possible to react to so many different things? And what do you do when you can't possibly avoid all of them?

4.  I've seen lots of reference to the low-histamine diet.  I'm unsure how I can avoid leftovers when I'm not well enough to be up longer than to grab myself a bowl of cereal...I definitely can't cook, and while my hubby comes home at lunch to make lunch and he cooks supper, I am often sleeping when he eats with the kids.  Any suggestions?

Sorry this has been so long - if you've been able to hang in, thank you!! I look forward to learning so much from you all!!

Thanks for the welcome, Ana!  Yes, I am also on DINET.  I have a fabulous GP who knows that I know what I'm talking about, and I first came across the POTS and MCAS info on that forum.  What did people do before the internet?

I don't yet have an epi pen, but will be getting an prescription at my next appointment.  Within the past few months I've been getting itchy skin as well as my throat and back of my tongue, as well as a ton of mucous production when I am having an episode.  My mom went through the same progression, and now carries an epi pen, although thankfully has not has to use it.

The only med I'm on right now is Rinitidine (for ridiculous nausea).  I also just started taking a Claritin in the evening as well, although I seem to see lots of folks taking Reactine (I think?) instead.  I wanted to give the H1 H2 combo a shot before my appointment next week so I don't get sent away again to do a trial before any other steps are taken.  I guess I'm getting sick of all the waiting in between every appointment

I am still hoping that SOMETHING will show up on the tests, but I'm mentally preparing myself if it doesn't....it seems like nothing ever shows up on tests for me, so it wouldn't be out of character

I think i have come across the consensus document, but if you wouldn't mind sending it, I'd appreciate it!  

The disability process is very frustrating! I was turned down because I "didn't have a diagnosis", (even though I didn't know my diagnosis was revoked until the adjudicator read me the notes from my doctor), and therefore in their minds hadn't had treatment.  It's kind of crazy when I had spent 3.5 years doing everything I could to chase down doctors, treatments, and out-of-province clinics.  Oh well - here's hoping I get a less vicious adjudicator the next round

Hello! Mind if I chime in? Your triggers sound very much like mine, although I would add stress to that list, and I bet you would also!! If you haven't read my intro story, please do because it will give you insight on how to help yourself. Also, read my tips in the "Start here" category on this forum.

It sounds as if you are identifying your triggers, which is great. That is hugely important in stabilizing yourself. Keep a medical log of everything you eat and how you feel afterwards. Also record the things you do and if they affect you adversely. You are quite undermedicated, and that is a problem. I used to have your symptoms. My diagnosis is IA (Idiopathic Anaphylaxis), which is part o MCAS (Mast Cell Activation Syndrome). MCAD used to be called MCAD. Now it is MCAS. I take minimal histamine blockers and feel really good. I might suggest that you try some over the counter ones and see how you do. Here is what I take:

7am
300 mg Zantac
180 mg Allegra

4pm
300 mg Zantac
10 mg zyrtec

If I feel symptoms coming on and breaking through my meds in the morning, then I can add an extra zyrtec. If it happens in afternoon, then I can add an extra allegra.

Anytime you feel as if you are passing out, you have reached anaphylaxis. I can judge where my symptoms are headed if I stry getting really sick, so I will take the extra zyrtec or allegra. I will also take a singular, and if needed a hydroxyzine. I try to avoi hydroxyzine because it makes me feel like I have a hangover the whole next day. I have 2 epis (you always want a dual package), but I have never had to use them.  

As for test for MCAS, it is often diagnosed based on symptoms that are just like Masto but all test results are negative. I test normally to everything. Normal tryptase, normal BMB, normal everything. Yet, I definitely have MCAS and can go into anaphylaxis. Now that I am on meds and avoid triggers, I rarely get really sick - maybe twice a year and it is generally a day filled with triggers that could have been predicted to cause problems for me


In regard to foods you can eat, it will all be trial and error for you. The forum member who posted before me does very well on a diet of brown rice, apples, and broccoli. Those foods would put me straight into anaphylaxis! Not joking. I can't eat most veggies or fruits. Some proteins bother me, as does any gas producing food. Such differences between the two of us!

Have to run, but hope this helped!

Mommydancer - wow, I can't imagine being on such a restricted diet long-term, but I am so happy to hear that it's having such a wonderful impact on you! Those are some great food prep ideas - thank you so much for sharing that!  We'll have to look into getting another Foreman grill, as our old one bit the dust!

DeborahW - thanks so much for the info!  I went back and read through your intro story with my hubby, and we both are so hopeful that we can see an improvement!  We'd be happy with even a 10-20% improvement at this point....if I could drive one of the kids to school, or do errands by myself, that would take a huge burden off my amazing husband!  I will start a medical log again...I tried before, but quit because I was so bummed when I had to recollect how bad I felt
I have a couple of follow-up questions if you don't mind....

1. Do you know of any articles, etc., that talk about a MCAS diagnosis with a lack of positive testing?  I'd like to be prepared when I head back to the doctor

2. Is there any info floating around about what dosages of OTC antihistamines to start with? My GP is awesome and is game for pretty much everything, but it's nice to go in with printed info!

Thanks for the encouragement everyone...I feel like we're getting closer to an answer!