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

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.

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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!

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@sierras

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!

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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

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@lean1

Does anyone know about the progression of mast cell activation disorder? I’m back speaking about my daughter. Last October she was a vibrant young wife and mother and now she is a shell of a person. Her list of low histamine/Nicole free foods is getting smaller by the day due to reactions. The sun and heat make her react. She has gastritis and severe constipation where she is having to do daily enemas. She is on quercertin and just started keto fin ( my spelling my be totally wrong on these) but she started that yesterday and got blisters on her lips and a tight throat so I fear she may be allergic. She’s allergic to all the supplements she used to take and when I spoke to her last night she told me the only time she’s not in pain is when she sleeps. She’s very depressed. I feel like she’s slipping away. She has an appointment in august at Mayo but my fear is she mentally won’t make it that long. Why does it seem like drs don’t take this seriously?

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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.

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@lean1

Does anyone know about the progression of mast cell activation disorder? I’m back speaking about my daughter. Last October she was a vibrant young wife and mother and now she is a shell of a person. Her list of low histamine/Nicole free foods is getting smaller by the day due to reactions. The sun and heat make her react. She has gastritis and severe constipation where she is having to do daily enemas. She is on quercertin and just started keto fin ( my spelling my be totally wrong on these) but she started that yesterday and got blisters on her lips and a tight throat so I fear she may be allergic. She’s allergic to all the supplements she used to take and when I spoke to her last night she told me the only time she’s not in pain is when she sleeps. She’s very depressed. I feel like she’s slipping away. She has an appointment in august at Mayo but my fear is she mentally won’t make it that long. Why does it seem like drs don’t take this seriously?

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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.

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@mcolunga

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.

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I have Asthma, Allergies and Nasal Polyps. Allergist I see now told me people with all of these have something called Sampters Triad. Allergy to Salicylates. He advised to try desensitization and started me on very low dose aspirin, under their supervision. Gradual increase to 325 mg daily. I have noticed a great improvement in all asthma,allergy and nasal problems, without changing food I eat. Don’t know if this would apply to your problem but maybe worth checking into.

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Yes, thanks so much. I've heard of that and had been looking at pure aspirin powder on Amazon to try a few months back. I can't take any of the regular aspirins because of the inactive ingredients in them. Would have liked to try through a doctor but lost my insurance and just recently got it back so I'm trying to decide whether or not to ask the doctor about it first. Some of my reactions have to do with asthma like symptoms so that would probably be the safer route. Another thing I'm scared of is having to be on aspirin for the rest of my life. Not sure about long term effects of that. Will have to look back into that before I finally decide on it. I know my ex boyfriend would be up for it. but I was scared to tell him about it because I think he should probably see an M.D. first. We were both exposed to mold and he had the clogged nose and nasal polyps like you and could never breathe. So I finally convinced him to try low salicylate/ histamine diet for a week and now he wants to stay with it because he can breath again but I warned him that he may not be able to tolerate or add back foods that he once was able to deal with. He refuses to go to the doctor, otherwise I'd have recommended that he try the aspirin therapy. He would be a perfect candidate. I plan on looking back into it and discussing with my new doctor now that you have reminded me about it. I have an appt. next week. Thank you so much for your commenting and trying to help me out I really appreciate it!

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I have read all of these posts and have gained some valuable information. I, too, am struggling for a diagnosis. I am feeling frustrated and tired of the many specialists who cannot agree on how to treat or diagnose me. I have had facial flushing for years and have also now developed intermittent diarrhea, reflux, tachycardia, palpitations, dizziness, headaches, etc. I have had NUMEROUS labs and scans and the doctors are undecided about whether I have Carcinoid Syndrome with no tumor found, or Mast Cell Disease. My Chromogranin A has been elevated, my 5-HIAA have been elevated, with a normal Tryptase, normal Urine Methyl-Histamine, normal Prostaglandin D2, and an elevated/ High Plasma Histamine. It is super confusing and the doctors cannot agree. I am going to Mayo in October and am hoping for some clarity. In the meantime, I may go see an Allergist/Immunologist at Essentia to see if they can do any more testing. I am in Northern Minnesota, about 75 minutes from Duluth. I have self-treated with an H1/H2 blocker and Quercitin. I also have developed allergic asthma as an adult, just diagnosed in August, and am now on inhalers for the first time in my life. Thank you all for information and hope everyone finds answers.

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@megansims

I have read all of these posts and have gained some valuable information. I, too, am struggling for a diagnosis. I am feeling frustrated and tired of the many specialists who cannot agree on how to treat or diagnose me. I have had facial flushing for years and have also now developed intermittent diarrhea, reflux, tachycardia, palpitations, dizziness, headaches, etc. I have had NUMEROUS labs and scans and the doctors are undecided about whether I have Carcinoid Syndrome with no tumor found, or Mast Cell Disease. My Chromogranin A has been elevated, my 5-HIAA have been elevated, with a normal Tryptase, normal Urine Methyl-Histamine, normal Prostaglandin D2, and an elevated/ High Plasma Histamine. It is super confusing and the doctors cannot agree. I am going to Mayo in October and am hoping for some clarity. In the meantime, I may go see an Allergist/Immunologist at Essentia to see if they can do any more testing. I am in Northern Minnesota, about 75 minutes from Duluth. I have self-treated with an H1/H2 blocker and Quercitin. I also have developed allergic asthma as an adult, just diagnosed in August, and am now on inhalers for the first time in my life. Thank you all for information and hope everyone finds answers.

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Hope you can get a diagnosis soon! Getting a diagnosis was a game changer for me, I take h1/h2 antihistamines, leukotriene blocker, and chromolyn sodium and that along with my service dog has made my mast cell totally manageable. I went from having a reaction multiple times a week and needing to use my epi frequently to not having a reaction at all this month and going back to eating many of the foods I used to be allergic to

Liked by megansims

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