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Fri, Apr 26 11:20pm · Mast Cell Activation in Blood Cancers & Disorders

How did your daughter get diagnosed. My doctor has officially diagnosed me with clinical MCAS but we haven’t been able to find proof of a mediator release even though we know something is happening because my service dog alerts to my reactions, I’m just trying to see how many people have had a similar problem of not being able to capture a mediator release

Sat, Mar 16 9:49pm · Mast Cell Activation in Blood Cancers & Disorders

Not yet. My doctor is concerned that I could get an allergic reaction from the anesthesia so he gave me two doctors that treat some of his other MCAS patients. They’re supposed to call me to schedule an appointment but they haven’t. I won’t be able to do it until the summer anyway cause I’m in college, but my mom wants to do it ASAP since the amount of food I can eat has been reduced significantly because of my nausea, which my doctor says could be caused by mast cell if it’s causing my stomach to inflamate

Sat, Mar 16 9:13pm · Mast Cell Activation in Blood Cancers & Disorders

yes, I went to see him on tuesday. I feel like he has started becoming more aware of what Im telling him and listening to me more, he says that the next step is to get an endoscopy done because of my GI issues which would also allow him to look for MCAS. However, during every appointment my mom keeps telling him that its okay to tell me that its all in my head and shes been pushing me to eat the foods im allergic to because another doctor that I saw on monday said that I wasnt allergic to anything since my blood tests for allergies come back normal (it shows abnormal levels for some of my allergens but not enough to actually cause an allergic reaction) so now Im also starting to doubt whether or not its in my head

Sat, Mar 16 9:13pm · Mast Cell Activation in Blood Cancers & Disorders

Hello! Ive been really struggling with coping with my symptoms and diagnosis journey for MCAS. Not really medically (although that has been difficult as well) but coping mentally has been hard. I wanted to start this discussion to meet other people going through the same thing because I feel like my family, and even my doctors, dont really understand what Im going through right now and Im just super confused about everything since I dont know anyone with this condition to compare it to.

I first started with symptoms when I was 15, I ate ice cream and suddenly started feeling like someone was sitting on my chest and restricting my breathing. I went to three different allergists – all of which said that I was not allergic to dairy. I kept eating dairy (despite the fact that it usually did not turn out well for me) mostly because I was in denial about suddenly having any type of limitation. Finally, when I was 17 I decided to give up dairy all together because my symptoms were starting to get really scary. Over time I have developed an allergy to many more foods (dairy, egg, gluten, peanuts, cashews, sesame, shellfish, coffee, peas, green beans, certain strong smells, chemicals, etc). Typically what I think to be allergic reactions present themselves through shortness of breath, chest tightness, coughing, lightheartedness, dizziness, flushing/hot flash, itchy skin (but never a rash or hives), nausea or a variation of said symptoms which (if they get really bad) are typically resolved by using an epipen. Recently I have also had a lot of trouble eating since I get full very quickly and start feeling super nauseous afterwards. The thing is: I have never had hives so what if its all in my head? Could these be caused by panic attacks, although its gotten to a point when Im not even worried when I get a reaction, my thought is usually something along the lines of "dang it, there goes my streak"? I saw an allergist who told me that it might be MCAS, but all of the tests we have done keep coming back negative: we did a test for the kit mutation as well as a 24 hr urine histamine test. My doctor decided to put me on medication for mast cell to see what happens and they have really helped. They have slightly helped reduced the amount of reactions (I went from a reaction once to twice a week to going two weeks without a reaction at times) and they have made my reactions less severe in terms of symptoms and the amount of time it takes for it to go away.

I was just wondering if anyone else has had a similar experience? Has anyone else had episodes where its just one symptom? Sometimes I will randomly have chest tightness but no flushing or dizziness, which I dont know if thats typical of an allergic reaction, if that is an allergic reaction.

I would appreciate any advice anyone could give me on this, thanks!

Fri, Feb 8 7:49pm · Mast Cell Activation in Blood Cancers & Disorders

@jpearo you can ask an allergist to check your tryptase level, that would rule out mastocytosis.jpearo you can ask an allergist to check your tryptase level, that would rule out mastocytosis.

@leilanis How were you able to get a diagnosis? My family and I have been trying to find a diagnosis for the past three years, especially because every flare is worse than the last one. I have developed six new food allergies since july and my environmental allergies have gotten worse as well. We've eliminated every other disease that could be causing my symptoms but my allergist doesnt want to give me a diagnosis since my 24 hr histamine level came back normal as did the kit mutation even though I have responded to medication (It doesnt reduce the amount of reactions during flares but it does increase the amount of time I can be around my triggers and makes my reactions less severe).

Mon, Jan 28 8:06am · Mast Cell Activation in Blood Cancers & Disorders

So happy to know theres someone else with breathing issues too! I was starting to think it was all in my head since I dont get hives which is like, the number one sign you are having an allergic reaction. I was tested for asthma early this year because of my breathing symptoms, but I was found to actually have better than average breathing capacity (Im a tuba player), I think Im currently in a flare as well and Im just waiting for that to pass. I guess Im on a low histamine diet, simply because Im allergic to the foods that are high in histamine (dairy, egg, gluten, peanut, tree nuts, sesame seeds, soy, shell fish, coffee and anything with cinnamon makes me feel really sick) and I dont buy any prepackaged meals simply because I cant (although I wish I could because I absolutely hate cooking). Im really just hoping to get a diagnosis soon because I found that some people have started training dogs to alert when their mediator levels are rising and theyre about to have an allergic reaction. I currently have a service dog to help me avoid my dairy and gluten allergy and if I had that diagnosis I could start teaching her to alert to that. The dogs that have been trained to do this are able to give their handlers a 15-20 min warning, which hopefully is enough time to take benadryl in order to lessen the reaction (since thats how long it usually takes for benadryl to take effect). I will look into finding an allergy pulmonologist in my area, I did not even know those existed, thank you!

Sun, Jan 27 10:55pm · Mast Cell Activation in Blood Cancers & Disorders

Hello! I have just come across your post and I’m so happy to know I’m not the only one! About three years ago i randomly developed a dairy allergy that had progressively gotten much worse and over time i have become allergic to many more foods (the most recent being coffee). I told my doctor that even though I was avoiding the foods I was allergic to and being really careful I was still having allergic reaction with no cause, even when I didn’t eat anything which made him suspicious that I had mast cell activation syndrome. I did the 24 histamine as well as a tryptase year during my consultation and they tested for the kit mutation, all of which came back normal. Because of this, he determined that I did not have MCAS. However, my symptoms have been getting worse, starting in around late December I started having an allergic reaction pretty much every day (mine always present themselves in shortness of breath or worse) as opposed to my normal once a week and just this Friday I had to use my epipen because of a reaction to who knows what. I was on the bus back to my apartment when I started feeling chest tightness and shortness of breath, I thought it was just another minor reaction but then I got to the lobby and started coughing and I almost didn’t make it to my apartment because I was so dizzy and lightheaded. Finally when I started flushing I decided to use my epi which stopped my reaction. My PCP decided to put me on medication despite the test results to see what would happen, I am on H1, H2 and leukotriene blockers, they’ve helped make my reactions less severe but haven’t decreased the amount. I’m just super frustrated because my PCP doesn’t know what’s going on and I feel like my allergist has given up on trying to find out what’s wrong. I’ve had to use 7 epipens in less than a year- and that’s despite the fact that I only use them when I have no other choice (which I know is bad) because I’m terrified of needles. I’m started to get really scared that I’m never going to get a diagnosis or start getting better and that my symptoms will just continue getting worse… I don’t want to keep living like this, always scared of when my next reaction will hit.