Mast Cell Activation

Sorry I forgot you need to peel all vegetables and fruits because the skin contains very high salicylates. Also toothpaste would be very high if it has any sort of mint flavoring. I also forgot to add that many pears are low salicylate. The kind I eat are the bartlett pears peeled but I do think they contain histamine. I've lowered my histamine load through diet for so long that i can eat these if i want to. I'm so sorry to hear about your daughter and don't know about any doctors there but if you did not know about salicylate intolerance it would be well worth a try to do this diet to eliminate the horrific symptoms your daughter is experiencing. Hope she has found a doctor and some relief by now.

Okay, Please look into symptoms of salicylate intolerance. Many people with MCAS are allergic to asprin which contains salicylates. Salicylates are in many fruits and vegetables. Nearly all herbs and spices are high. I had to go on low salicylate low amine diet and I would be dying right now if I had only reduced histamines. I had all of these symptoms like your daughter and got way, way better after lowering my salicylates. I will list some of the things I eat that keep me from having hardly any symptoms. First meal is usually hamburger patty with salt and garlic powder only and no other spices, and green beans. Second meal would be sirloin steak or chicken with either small amount of sweet potato or green beans or broccoli. There are other low salicylate vegetables she could eat but until you learn everything yourself which is confusing at first this should help her symptoms pretty quickly if this is all she eats for about a week. I also eat clarified butter with meals which is adds flavor and is satisfying. I don't know if you'll see this since your post was so long ago but maybe it will help someone else.

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

I'm so sorry to hear about everything your going through. Currently my daughter is being treated for MCAS by Dr. John Moore. He works out of the Twin Cities, Midwest ENT. He was so helpful trying to understand what was going on with my child. He seemed to be learning and knowing alot about MCAS. Maybe you can reach out and see him. Lots of luck!

Hi Pat @51irishlass, thanks for the private message. I thought I would answer it here so that when you receive the notification email you can click View & Reply and it will take you to the MCAS discussion where you can meet other members. You can follow as many discussions as you want by clicking the +Follow link at the top of a discussion below the description. When it changes to +Following, you know that you will be notified anytime there is a new post to the discussion.

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

Hi @thenerdybunch you may have noticed I moved your post to this existing discussion on Mast Cell Activation as suggested by @johnbishop. I did this so that you can connect with others who have this condition.

Were you able to set up an appointment for the endoscopy?

Hello Andy @thenerdybunch, there is another active discussion for Mast Cell Activation where your post may get much more visibility and you can meet other members talking about Mast Cell Activation. I'm tagging our moderator @ethanmcconkey to see if we should move your post to the following discussion.

> Groups > Blood Cancers & Disorders > Mast Cell Activation
-- https://connect.mayoclinic.org/discussion/mast-cell-activation/

Have you talked to your doctor about your recent symptoms?

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

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!