Mast Cell Activation

Posted by danmlee @danmlee, Jan 17, 2017

Is there anyone that has MCA?,I live in Duluth and have just begun all types of testing for this nightmare (I.e. Blood test and bone marrow and 24hr Urinalysis)and they always come back negative in the since of trying to diagnose but I have been dealing with this since last year but didn’t know what the heck was going on in my body.It started with just a skin rash at first but since last year till now I have developed allergies to foods I never had and now my body is so sensitive to heat change because within seconds my feet start tingling then swelling starts then my hands start swelling and the full breakout begins (niacin flush type feeling begins and doesn’t stop)little scab like rash (like what fibromyalgia patients get)then the felling of vomiting begins.So I am so frustrated because all test keep coming back negative to get “DIAGNOSED”for MAST CELL to see how to treat it,even though I know that it is even the Oncologists and Allergist believes it is MCA so having to be my own advocate and research I have begun the “Low Histamine Paleo Food Change” But trying to cope day to day and for the most part living in my bedroom because I don’t want to freeze out my wife or just feeling like my life is being robbed and my personality and to make things worse Dr.Afrin is booked out till 2018 and someone told me here in Duluth that is who you must see,so there goes that idea.I just sometimes want to give up because sometimes this Mast Cell makes you feel like you are loosing your mind.And I have no one to talk to that can relate to this,so there is my ramblings is there anyone who I can talk to that has this “CRAP”.

Liked by dolan

@thenerdybunch

@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).

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Thank you for the reply. I will ask that. At least it will probably answer why I’ve been so dizzy and Out of it for the last two years. All the negative tests and different specialists I’ve seen. It’s been so frustrating.

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@leilanis

The good news, mast cell leukemia is very rare according to the research I’ve read. My breathing gets bad to the point that I am sitting in he ground trying to get a breath in during my tennis lessons. I’m good for a few months then I will get a “flare” and I would have to use my rescue inhaler 3-4 times in a one hour lesson. I haven’t let it stop me. However I just partially tore my Achilles’ tendon, most likely secondary to side effects of meds I’ve been on, like prednisone, Celebrex and Cipro. So it’s always one thing after another but I am not willing to let it stop me from doing things that were and are really a part of me — we are a really active family. I learned to snowboard two years ago even though cold often makes my breathing worse. I have doctors that understand that sports are a huge part of who I am and they help me stay as active as possible. I think it’s part of stubbornness (I like to call strong will 🙂 ) that keeps me going. Although sometimes i pay the price, but every athlete does. Ours is just diffferent.

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Yes I read that too. I have been super dizzy and out of it this whole week. My symptoms seem to alternate too. It is super frustrating. I just want to function a little more normally again.

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I started to feel the same way the other day. I feel like my personality is gone and I’m just floating by. All I can think about is the fact that I can’t breathe or function. I really hope a dr can help you out soon. I’m hoping the same for myself. My wife hates me now because of all of this health stuff.

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@jpearo Are any of your doctors treating the breathing problems? Like with inhalers or steroids? Regardless of a diagnosis, they should still be treating the symptoms, which they should do even if you have the diagnosis of MCAS. I was treated for “asthma” at the very start of my “not sure what is wrong with you” journey. Everyone thought it was asthma even though every pulmonary function test came back negative. I kinda always doubted that I asthma because my symptoms didn’t fit other than the fact I couldn’t breathe. I’m sorry your wife hates you because of your illness. I’m sure she doesn’t hate you, but she hates the illness and what it’s doing to you. I would urge your doctors to help manage your symptoms so you can Live day to day better as they try and sort out a “diagnosis”. I was very depressed (and still get episodes of major depression) in the beginning so I eventually gave in to taking anti-depressants and went to see a
Psychologist. It helped me sort out my feelings talking to someone. Is there anyone you trust that you can talk openly with? Maybe share what you’re going through with your wife so she can be more understanding of what you’re going through. Maybe you’ve already done that. It’s still hard though. I have had suicidal thoughts that come and go. When you don’t have control of your body, it’s a really tough, hard place to be and sometimes our relationships suffer because of it. I found it much better once I shared with my husband exactly what I was feeling and going through each day. I hope your dizziness gets better and you can think more clearly. I try to find something good in each day or do something that makes me feel like the old me.

Liked by smbryce1

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@leilanis

@jpearo Are any of your doctors treating the breathing problems? Like with inhalers or steroids? Regardless of a diagnosis, they should still be treating the symptoms, which they should do even if you have the diagnosis of MCAS. I was treated for “asthma” at the very start of my “not sure what is wrong with you” journey. Everyone thought it was asthma even though every pulmonary function test came back negative. I kinda always doubted that I asthma because my symptoms didn’t fit other than the fact I couldn’t breathe. I’m sorry your wife hates you because of your illness. I’m sure she doesn’t hate you, but she hates the illness and what it’s doing to you. I would urge your doctors to help manage your symptoms so you can Live day to day better as they try and sort out a “diagnosis”. I was very depressed (and still get episodes of major depression) in the beginning so I eventually gave in to taking anti-depressants and went to see a
Psychologist. It helped me sort out my feelings talking to someone. Is there anyone you trust that you can talk openly with? Maybe share what you’re going through with your wife so she can be more understanding of what you’re going through. Maybe you’ve already done that. It’s still hard though. I have had suicidal thoughts that come and go. When you don’t have control of your body, it’s a really tough, hard place to be and sometimes our relationships suffer because of it. I found it much better once I shared with my husband exactly what I was feeling and going through each day. I hope your dizziness gets better and you can think more clearly. I try to find something good in each day or do something that makes me feel like the old me.

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No my dr. Insists it is due to anxiety because all of my tests come out normal. I know it’s really happening so it’s frusterating. I made an apt with an immunologist recently so I’m hoping I can finally figure out what is going on. My wife has been dealing with me freaking out over health stuff for two years now. I’m so tired and frustrated. I am a little hopeful now because I feel like I’m on the right track. All it took was for me to take some medicine and I flushed and broke out in a rash. I’ve had a rash for months now. When I couldn’t breathe I started really researching. When I take Benadryl I feel like I can breathe. Hopefully I can finally get some answers and move on.

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@jpearo

No my dr. Insists it is due to anxiety because all of my tests come out normal. I know it’s really happening so it’s frusterating. I made an apt with an immunologist recently so I’m hoping I can finally figure out what is going on. My wife has been dealing with me freaking out over health stuff for two years now. I’m so tired and frustrated. I am a little hopeful now because I feel like I’m on the right track. All it took was for me to take some medicine and I flushed and broke out in a rash. I’ve had a rash for months now. When I couldn’t breathe I started really researching. When I take Benadryl I feel like I can breathe. Hopefully I can finally get some answers and move on.

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The fact that you took Benadryl and could breathe means that and H1 antihistamine makes your symptoms better. And that is one of the criteria for MCAS—if you respond positively to antihistamine treatment then you should continue on that treatment regimen. I’m on high doses of H1 and H2 antihistamines and xolair but I still need steroids and inhalers to control the breathing issues. Even in the research protocols it includes that additional complications need to be addressed. I’m glad that Benadryl gives you some
relief!!!! That’s hope. So continue being hopeful — that’s what life is about. I will pray that you get answers and treatment soon.

Liked by smbryce1

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I hope you found your answers by now since this post isn’t from two years ago! How’s are you doing. Did you know February is mast cell disorder awareness month? I was just told this yesterday. I couldn’t get a diagnosis from my allergist at Mayo in Phoenix because although I fulfill four criteria of the five suggested criterion for diagnosis, he didn’t know how to treat me so refused to diagnose. Which is ridiculous but that’s not how some doctors are, I was having severe allergic reactions including anaphylaxis almost any time I ate, as well as in reaction to heat and since then we have discovered I’m abaphylactic to hand sanitizer and formaldehyde (which is in many perfumes) so I flew to see a doctor who knows more about mast cell activation syndrome and immediately started improving. We have since moved to be closer to family and doctors who can treat me. You may want to be tested for a new genetic variation they have been finding in some of us.

I have the trifecta of mast cell activation syndrome, Ehlers Danlos syndrome type three with some cross over to type one and Postural Orthostatic Tachycardia Sundrome (as well as diabetes, sleep apnea and hashimotos THyroiditis.) So recently my allergist ordered a genetic test for something they are calling Hereditary alpha Tryptasemia Which is a genetic trait they have been finding in some people with symptoms of “the trifecta” people with multiple copies of THis genetic thingy often have slightly raised tryptase as I do, although not high enough to suggest Systemic Mastocytosis, and the symptoms, and may respond well to mast cell treatments, although many HaT patients have many severe or odd reaction symptoms tonmedications or their excipients. The test can be ordered by any doctor from a company called Gene by Gene, but Is payed for out of pocket. It was $126 I believe. I have an appointment to go pick mine up

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@leilanis

The fact that you took Benadryl and could breathe means that and H1 antihistamine makes your symptoms better. And that is one of the criteria for MCAS—if you respond positively to antihistamine treatment then you should continue on that treatment regimen. I’m on high doses of H1 and H2 antihistamines and xolair but I still need steroids and inhalers to control the breathing issues. Even in the research protocols it includes that additional complications need to be addressed. I’m glad that Benadryl gives you some
relief!!!! That’s hope. So continue being hopeful — that’s what life is about. I will pray that you get answers and treatment soon.

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The more I think about it there have been lots of subtle signs. I’ve had acid reflux disease since I was a kid. I had Athsma as a baby that went away. I would randomly be allergic to my wedding ring. I’ve had a weird rash that popped up on my leg from exposure to the sun that went away. Ever since I can remember when I drink alcohol my uvula swells up. I just never realized MCAS was a thing and I think a lot of drs don’t know enough about it.

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@jpearo

No my dr. Insists it is due to anxiety because all of my tests come out normal. I know it’s really happening so it’s frusterating. I made an apt with an immunologist recently so I’m hoping I can finally figure out what is going on. My wife has been dealing with me freaking out over health stuff for two years now. I’m so tired and frustrated. I am a little hopeful now because I feel like I’m on the right track. All it took was for me to take some medicine and I flushed and broke out in a rash. I’ve had a rash for months now. When I couldn’t breathe I started really researching. When I take Benadryl I feel like I can breathe. Hopefully I can finally get some answers and move on.

Jump to this post

Most doctors say the labs are normal because they aren’t actually taking the Right labs. Some then assume it is anxiety. And some of the chemicals mast cells control in our bodies do cause anxiety and or depression as well as hundreds of other chemicals that effect various systems all over our bodies, so it’s understandable that doctors would be confused.

Did they test your prostaglandin levels? Most doctors dont. They need to take labs both when you are at your least symptomatic (for a baseline) and within one to four hours after a reaction. Tests they should order include prostaglandins (pgd2 and pfd2 I believe) as well as tryptase(which is often the only one most doctors test for but that is incorrect), N METHYL hystamine levels and whether your symptoms improve when treated. Some of these tests need to be kept chilled during storage, transport and delivery including the 24 hour urine or a preservative can be placed in the urinalysis collection jugs before use. It can also be helpful to know your leukotirine levels, even tho to isn’t a diagnostic criteria for any mast cell disorders, because if it isn’t high certain medications might help you more such as Singulair/montuklast or Zyflo/Zileuton ER.

Caution when trying new foods and treatment, it’s best to change one thing at a time. It helps to determine what our triggers are and the best Advice I was given when I first was seeking diagnosis, was to keep a symptom and trigger journal. I like the app called “MySymptoms” for that because it allows you to print your tracking or graphs of your symptoms to share with doctors.

Treatment includes identifying and avoiding triggers, certain medication, and treatment of symptoms. Improving on Benadryl, an h1 blocker, fulfills one of the criteria of diagnosis. 1st tier h1 and h2 blocking medications would include things like Allegra, Zyrtec or the like, and Zantac or Pepcid. Many also find Atarax or Hydroxyzine helpful, and Benadryl, an epi Injector and steroids are common rescue medications. Most also are put on singulair or it’s generic or something similar like Zyflo. Some find the shot called xolair useful, although a side effect of xolair can Be anaphylaxis, most mcas patients do well on it.

Many of us react to excipients like preservatives or fillers in the over the counter versions, but respond well to the pure ingredients, and some of us react even to certain medications in their pure form. So it’s been best to try one at a time, and always have your rescue medication so on hand just in case. Doctors often say a medication is safe or “no one reacts to that” but mast cell patients can react to tiny amounts of their triggers, which can be practically anything. Check out thr blogger mastattck.org for a lot more helpful info like testing and treatment and an emergency protocol and the like. I hope you find answers soon.

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@smbryce1

Most doctors say the labs are normal because they aren’t actually taking the Right labs. Some then assume it is anxiety. And some of the chemicals mast cells control in our bodies do cause anxiety and or depression as well as hundreds of other chemicals that effect various systems all over our bodies, so it’s understandable that doctors would be confused.

Did they test your prostaglandin levels? Most doctors dont. They need to take labs both when you are at your least symptomatic (for a baseline) and within one to four hours after a reaction. Tests they should order include prostaglandins (pgd2 and pfd2 I believe) as well as tryptase(which is often the only one most doctors test for but that is incorrect), N METHYL hystamine levels and whether your symptoms improve when treated. Some of these tests need to be kept chilled during storage, transport and delivery including the 24 hour urine or a preservative can be placed in the urinalysis collection jugs before use. It can also be helpful to know your leukotirine levels, even tho to isn’t a diagnostic criteria for any mast cell disorders, because if it isn’t high certain medications might help you more such as Singulair/montuklast or Zyflo/Zileuton ER.

Caution when trying new foods and treatment, it’s best to change one thing at a time. It helps to determine what our triggers are and the best Advice I was given when I first was seeking diagnosis, was to keep a symptom and trigger journal. I like the app called “MySymptoms” for that because it allows you to print your tracking or graphs of your symptoms to share with doctors.

Treatment includes identifying and avoiding triggers, certain medication, and treatment of symptoms. Improving on Benadryl, an h1 blocker, fulfills one of the criteria of diagnosis. 1st tier h1 and h2 blocking medications would include things like Allegra, Zyrtec or the like, and Zantac or Pepcid. Many also find Atarax or Hydroxyzine helpful, and Benadryl, an epi Injector and steroids are common rescue medications. Most also are put on singulair or it’s generic or something similar like Zyflo. Some find the shot called xolair useful, although a side effect of xolair can Be anaphylaxis, most mcas patients do well on it.

Many of us react to excipients like preservatives or fillers in the over the counter versions, but respond well to the pure ingredients, and some of us react even to certain medications in their pure form. So it’s been best to try one at a time, and always have your rescue medication so on hand just in case. Doctors often say a medication is safe or “no one reacts to that” but mast cell patients can react to tiny amounts of their triggers, which can be practically anything. Check out thr blogger mastattck.org for a lot more helpful info like testing and treatment and an emergency protocol and the like. I hope you find answers soon.

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I pretty much have a horrible reaction to any pill. Stress really sets it off bad. I also feel like my rash gets worse if I eat junk food. I wish I could hurry up these Dr appointments. At least now I’ll have something to tell my gp and maybe she will take me seriously. I think I’m going to have my dermatologist get another biopsy of this rash. I am hopeful now though. I’m 99.9 percent sure I have a mast cell disorder.

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@thenerdybunch

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!

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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?

Liked by Andy

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@johnbishop

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?

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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

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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!

REPLY
@thenerdybunch

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

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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?

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@ethanmcconkey

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?

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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

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