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”.

@lookingforanswers2017

Hello Everyone,
I am new here looking for a supportive community who understands Mast Cell disorders. I am 34 years old and my vague symptoms started 3 years ago with feeling heat intolerant (always hot/overheating), low grade fever, and weight gain. I thought it was related to hormones because I don’t have my period anymore and I have PCOS. Well after my aunts breast cancer spread to her brain in October, i was severely stressed out and my heat intolerance turned into sever flushing in my face and entire body that I thought was an allergy to a food. I went to see an allergist and he tested me for 24hr urine Histamines and that came out positive 8x the normal upper limit. Next he is testing for tryptase and a few other labs. I am in shock that this is happening to me and I need some support and survivor strength. Has anyone thought that their symptoms get worse with stress or depression? Has anyone switched their diet to vegan? Thanks, everyone!

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@lookingforanswers2017 I know nothing about this condition but I just want to say you have come to an amazing community of helpful people. I am sure there are people who do know something about this and can understand and perhaps suggest things.
I hope for the best for you in that endeavor and that you will find some real help with this condition.
JK

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Hello @lookingforanswers2017,

Welcome to Connect. I can only imagine your worries, and want to reassure you that you are not alone. We’re so glad that you’ve reached out to the Connect community for support. I’m certain that @danmlee @dolan @mjgarr @mepslissy @jools @allergynightmare @jbhmaine @lean1 will return to share their insights with you.

I’d also like to mention that Mayo Clinic physicians have a special interest in the diagnosis and treatment of systemic mastocytosis — mast cell activation syndrome. As part of their research, they have discovered several new syndromes and identified how mast cells and eosinophils play a role in a variety of diseases. You can read more about the program here: http://www.mayoclinic.org/diseases-conditions/systemic-mastocytosis/systemic-mastocytosis-care-at-mayo-clinic/ovc-20324430

Research studies have shown that many skin disorders worsen during stress and are associated with increased numbers and activation of mast cells. Here’s an article that reports on depression in patients with mastocytosis: http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0026375

@lookingforanswers2017, has your doctor recommended any stress relieving approaches, for example meditation? Have you found it beneficial to change your diet?

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Hi Everyone,
I am looking for any help, ideas or support. I feel so defeated. Still NO Diagnosis. I relate to everyone else on the blog that says they feel they are going crazy!! A doctor has even told me that my symptoms are obviously in my head and need to check out psychiatric since my tests are negative….Ok, so here is my story. I am 30 and going on 5 years with dealing with this madness and I am exhausted being my own advocate. I have seen so far up to 12 specialist each in their own specialty to figure out my various symptoms. I have always suffered from severe environmental allergies and asthma, but 5 years ago everything changed. I started getting worst without any obvious reasons. Loosing consciousness after eating, becoming allergic to foods I never been before; drugs as well; brain frog; massive weight gain or lost; body pains (I feel like im 86); face flushing; tongue/face/hands/legs swelling; Gastro issues; persistent fatigue…ect.. you name it I have experienced it all except the typical mastocytosis rash.

I have since had over 12 related ER visits including 4 Idiopathic anaphylaxis reactions; 3 Food related anaphylaxis; 1 insect sting anaphylaxis (then test negative for insect bites both skin and blood). I test negative for all test, allergy, tryptase serum, 24hr urine test, but still struggle everyday with my allergies. I take daily 40mg citrizine; singulair; symbicort nose pray; zantac on/off. Still can’t control these attacks and it is becoming destructive on my life since I no longer go out, lost work, postponed school. I now only eat a low-histamine Paleo white meat only diet and if I dare become lax on my strict diet I pay the consequence dearly.

To complicate things even more, I was diagnosed with a large brain tumor and 3 weeks later had emergency brain surgery 6 months ago. So my doctors at the moment all said that my symptoms have been compounded and now cannot distinguish some of the symptoms thus will not make a clear diagnosis of MCAS without positive tests results. But my symptoms and attacks keep getting worst since surgery.

Last year I was lucky and found a family doctor that believes something is wrong since I presented my medical binder (2inchs thick!!); Records and test after test and research articles for everything I was tested on! I am on my 3rd allergist and he seems to take my case seriously when I see him every 6 months. He mentioned that the Mayo clinic may help us find a diagnosis that deal with difficult cases of MCAS, but I live in Canada and cannot afford airfares and medical test in the US. Is there anyone that knows about funding, or test kits for my doc? Or even the cost of being diagnosed? Any resource? I’ll take any ideas or suggestions and even words of encouragement. ☺

I understand that a diagnosis bring little relief since there is no cure. It would stop the ER docs from thinking I’m the crazy lady, or worst! Delay treatment like I had a few times (cause they never seen or heard case like mine before) when I present with atypical allergic reactions.

In my experiences very few doctors know about MCAS and fewer know how to treat it and less diagnose it. ☹

I’m so sorry for the long story but I feel everyone can relate because cases of MCAS are beyond complicated.

i’m exhausted and feel defeated

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@lookingforanswers2017

Hello Everyone,
I am new here looking for a supportive community who understands Mast Cell disorders. I am 34 years old and my vague symptoms started 3 years ago with feeling heat intolerant (always hot/overheating), low grade fever, and weight gain. I thought it was related to hormones because I don’t have my period anymore and I have PCOS. Well after my aunts breast cancer spread to her brain in October, i was severely stressed out and my heat intolerance turned into sever flushing in my face and entire body that I thought was an allergy to a food. I went to see an allergist and he tested me for 24hr urine Histamines and that came out positive 8x the normal upper limit. Next he is testing for tryptase and a few other labs. I am in shock that this is happening to me and I need some support and survivor strength. Has anyone thought that their symptoms get worse with stress or depression? Has anyone switched their diet to vegan? Thanks, everyone!

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Yes! My doctor told me that symptoms of MCAS do get worst with stress…. being negative or positive stress, the body does not discriminate good or bad. Stress is stress. He told me try and control my emotions, stress levels by any means including my anxieties as it escalate my attacks. Meditation, mindfulness and weekly counselling. I struggle everyday with this! I can even be overly excited since it can trigger an allergy cascade. My emotions have to be as bland as my food. Also, I only eat white fish and white meat on a paleo diet, gluten free and preservative free including soy. This seems to help me have somewhat of a functional life.

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@defeatedsteph

Hi Everyone,
I am looking for any help, ideas or support. I feel so defeated. Still NO Diagnosis. I relate to everyone else on the blog that says they feel they are going crazy!! A doctor has even told me that my symptoms are obviously in my head and need to check out psychiatric since my tests are negative….Ok, so here is my story. I am 30 and going on 5 years with dealing with this madness and I am exhausted being my own advocate. I have seen so far up to 12 specialist each in their own specialty to figure out my various symptoms. I have always suffered from severe environmental allergies and asthma, but 5 years ago everything changed. I started getting worst without any obvious reasons. Loosing consciousness after eating, becoming allergic to foods I never been before; drugs as well; brain frog; massive weight gain or lost; body pains (I feel like im 86); face flushing; tongue/face/hands/legs swelling; Gastro issues; persistent fatigue…ect.. you name it I have experienced it all except the typical mastocytosis rash.

I have since had over 12 related ER visits including 4 Idiopathic anaphylaxis reactions; 3 Food related anaphylaxis; 1 insect sting anaphylaxis (then test negative for insect bites both skin and blood). I test negative for all test, allergy, tryptase serum, 24hr urine test, but still struggle everyday with my allergies. I take daily 40mg citrizine; singulair; symbicort nose pray; zantac on/off. Still can’t control these attacks and it is becoming destructive on my life since I no longer go out, lost work, postponed school. I now only eat a low-histamine Paleo white meat only diet and if I dare become lax on my strict diet I pay the consequence dearly.

To complicate things even more, I was diagnosed with a large brain tumor and 3 weeks later had emergency brain surgery 6 months ago. So my doctors at the moment all said that my symptoms have been compounded and now cannot distinguish some of the symptoms thus will not make a clear diagnosis of MCAS without positive tests results. But my symptoms and attacks keep getting worst since surgery.

Last year I was lucky and found a family doctor that believes something is wrong since I presented my medical binder (2inchs thick!!); Records and test after test and research articles for everything I was tested on! I am on my 3rd allergist and he seems to take my case seriously when I see him every 6 months. He mentioned that the Mayo clinic may help us find a diagnosis that deal with difficult cases of MCAS, but I live in Canada and cannot afford airfares and medical test in the US. Is there anyone that knows about funding, or test kits for my doc? Or even the cost of being diagnosed? Any resource? I’ll take any ideas or suggestions and even words of encouragement. ☺

I understand that a diagnosis bring little relief since there is no cure. It would stop the ER docs from thinking I’m the crazy lady, or worst! Delay treatment like I had a few times (cause they never seen or heard case like mine before) when I present with atypical allergic reactions.

In my experiences very few doctors know about MCAS and fewer know how to treat it and less diagnose it. ☹

I’m so sorry for the long story but I feel everyone can relate because cases of MCAS are beyond complicated.

i’m exhausted and feel defeated

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Does anyone know if the amount of medication that I am taking effecting my tests results? making them come up negative especially during an attack where i take benadryl by the mouthful, beanery pills and epipen? both my family doc and allergist think that taking me off my meds is life threatening even for a few days, but how will they be able to get accurate results? Also, it makes it difficult cause none of my symptoms are consistent since they come and go………….

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I read that if the urine and blood tests are not put on ice immediately they will come back normal… hope this helps

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Welcome to Connect, @antessa. Thanks for sharing the insight; I’m sure @defeatedsteph will appreciate the information. May i ask what brings you to Connect?

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@kanaazpereira

Welcome to Connect, @antessa. Thanks for sharing the insight; I’m sure @defeatedsteph will appreciate the information. May i ask what brings you to Connect?

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I am 65 years old and have basically been undiagnosed since 14 years old . I have had my DNA done …and through an ad dropped on my messenger feed I THINK I may have found out what I have but it is hard to suggest anything to a doctor as they do not respond well to ones findings. So a readers digest version ….had tachycardia since puberty ( hormone induced I suspect) I had a miscarriage at 21 , gall bladder removed at 30 , carcinoid syndrome and tumour roved from lung at 55 , diagnosed with rheumatoid , lupus or mixed connective tissue disease at 56 . My daughter and her son also had sudden onset of tachardyia at 14 years of age …daughter now has EDS and mixed connective tissue disease and grandson has POTS . Ok back to my messenger feed …I had a ad talking about MCAD ….so I checked my DNA that I had done thro 23 and me. I put in the raw data and this is what came up? Should I show my doctor?

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@kanaazpereira

Welcome to Connect, @antessa. Thanks for sharing the insight; I’m sure @defeatedsteph will appreciate the information. May i ask what brings you to Connect?

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@antessa I would definitely bring this to my doctor’s attention. If what you suspect is wrong he should be able to explain the error to you. If not then it should give him good input. Prior to menopause I had horrible migraines. I read everything I could find about them, which in those days was more difficult before it was before we had all of this internet access. I read once that many migraine sufferers know more than a typical doctor and I am sure that is true for many conditions.

I went almost a year and a half with no diagnosis for what turned out to be non-alcoholic cirrhosis. Since having a liver transplant I have learned more and more and realize how many symptoms I had that should have led to a diagnosis. On an appointment with my PCP I asked him if he had cirrhosis patients prior to me. He claimed he had. I then gave him a list of symptoms that point to cirrhosis, all of which I had. He took the list. My husband thought I was terrible to do that but I figured that if it helped some future patient then it was worth it. Going that long not knowing what was wrong with me, particularly since I had HE episodes, was horrible. Cirrhosis is not a great diagnosis but it was better than not knowing.
JK

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@kanaazpereira

Welcome to Connect, @antessa. Thanks for sharing the insight; I’m sure @defeatedsteph will appreciate the information. May i ask what brings you to Connect?

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Thank you I will certainly heed your advice!

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@kanaazpereira

Hello @@danmlee,

Thank you for sharing your story; I’m truly sorry that you are going through such pain, and I want to assure you that here on Connect, you will find a wonderful community to talk to, and we will do our best to try and find some answers that may help you.

Here is some detailed information on Mast Cell Activation Disorder: http://bit.ly/2jkDjWH; and if you would like to read about Mayo Clinic’s approach, please click on this link: http://mayocl.in/2jtjyyB

In the meantime, I would like to introduce you to @dolan, @mjgarr, @denisefeddersen, @mepslissy, @jools, who have all talked about MCAs and/or mastocytosis, and I hope they will return with some advice.
Since MCAS is often found in patients with Ehlers–Danlos syndrome (EDS) and postural orthostatic tachycardia syndrome (POTS), I wonder if one of our mentors, @kariulrich would have any insight?

@danmlee, when it comes to health, you are your best advocate; have your doctors ruled out other underlying conditions? Other than the diet, how do you manage your symptoms?

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I have just been diagnosed with the MCAS and POTS. I have been put on supplements and vitamins to help with the mast cell and immune system support. I have severe psoriasis and chronic fatigue syndrome. I work a full-time job and I am struggling at work and at home. I am still trying to wrap my head around all of this. I am very thankful that I have a very good doctor and I finally know what is wrong. I would love to learn more about this. I am just getting into the diet part of this. I would love to learn how to manage symptoms as well.

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Hello All, I am doing research to find a clinic that will accept patients without a bone marrow biopsy. My allergist and I tried the Brigham Hospital in MA, but they were super unhelpful in the process of getting in. Even the staff wouldn't talk with my doc! Its such a frustrating process to get in where there is experienced people who really can speak on this disorder. Does anyone have suggestions of places they have tried or tactics in speaking with specialized places? What does Mayo offer in terms of this?

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