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danmlee
@danmlee

Posts: 2
Joined: Jan 17, 2017

Mast Cell Activation

Posted by @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

REPLY

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?

@danmlee: I am sorry you feel this way but let me tell you I have felt that exact way and still do off and on. I was diagnosed with Systemic Mastocytosis 11 years ago. I went thru a week of tests: bone marrow biopsy, 24 hr urine, labs of all kinds. Saw bone doctor, hematologist and then Dr. Butterfield (all at Mayo). I was on Interferon for 3 years (giving myself shots 3 times a week). I had nearly every side effect they listed. I still struggle from fatigue and depression. I’ve had numerous broken bones (bones of a 90 yr old)…and in recent years been seen as indolent. It seems I am riding the effects of the Interferon after having a adverse reaction to PegIntron (a one shot a week med) and have been off any prescription medication for Masto since. I do a lab kit sent to me from Mayo every 6 months. I do a 24 hr urine and have blood vials drawn and it’s dry iced to Mayo from Fargo(ND). As long as the numbers are as Dr. Butterfield sees fit I will continue in this manner. I am on aspirin. I flush, I have restless leg, I have off and on adverse reactions to various foods and temperatures. I am low in iron(I do not store iron)so am on a lot of iron and calcium…which is hard on my digestive track. Winters are by far the hardest on me with less daylight and cold temperatures. I use a lightbox to help with fatigue and depression usually starting in Oct to April. I have been frustrated with this disease but I know that many suffer much more than I. Am need to feel grateful with the indolent role. Welcome here.

MAST Cell has been seen with Ehlers-Danlos syndrome. Although I do not understand it completely. There is a blog post about it: http://www.dysautonomiainternational.org/blog/wordpress/a-tale-of-two-syndromes-pots-and-mcas/

Here is a scholarly article I found: http://journal.frontiersin.org/article/10.3389/fimmu.2015.00620/full

I hope some EDSers will get on and explain it more.

@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?

Jump to this post

Thank you so much,I just wonder if there is anyone that lives in Duluth that has been to Mayo for this insidious disease,I feel like I am alone in this except for my wife but she is at the point where she doesn’t know what to say or do she feels helpless to,just to be able to talk to someone and they could say “Oh man I get ya or here is why that happens”,I just don’t know what to do or not do,I know my triggers (temperature changes are huge and stress and it is this food allergies thing I don’t get)I like being active and am ADHD and have a mild TBI so just trying to trudge thru this mud is not working.

Liked by dolan

Hello yes i totally understand you! I have MCAS My symptoms are slightly different skin rashes tighten of the throat neusea i have had 2 anaphylaxis shocks and 3 more near anaphylaxis shock so they say. The low histimine diet helps hugly but is extremely tough to live on. I find that fresh meat is a must dont touch anything that is leftover or not super fresh it is worth the effort. Yes i feel like im going crazy too and can tell people do not understand except those that have seen my anaphylaxis first hand. My immunologist was very encouraging tho saying that it can remit. RADANATINE medication is giving just a very little bit of much needed freedom with food before i was on that i honestly felt like a rabbit.

Coffee also is a nono but you will see tht all once you get your head around the diet. Eat heaps of what you can otherwise you will lose so much weight and fast. I lost 10percent of my body weight when i was already on the edge of being underweight before i was sick meat seems to be the only thing o the diet that is actually filling.

Hello @allergynightmare,

Welcome to Connect; we’re so glad you found us, and joined this discussion. I hope @dolan, @mjgarr, @denisefeddersen, @mepslissy, @jools, @danmlee, will also return to share their insights.

I’d sincerely encourage you to view the link and blog post that @kariulrich has mentioned, above, and let us know your thoughts.
Diet seems to play a significant role in dealing with this condition; @allergynightmare, do you have any other tips/suggestions that might help Connect members?

I have had serious abdominal pain since childhood, urticarias, cough problems, and other symptoms that match the new international criteria for MCAS. I had to do my own online research to basically self-diagnosis. Over a life-time I have received about a half dozen or more misdiagnoses, including childhood abdominal pain so severe I fainted and had my appendix taken out only to learn it was normal. I had dozens of x-rays of abdomen, and nothing could be found, all negative so lived for another twenty plus years with diagnosis and treatment for a duodenal ulcer, though that never appeared in any x-ray. Then I got diagnosis of IBS, which seems to be correct but researchers now know that IBS and MCAS often are comorbid syndromes. I’ve been prescribed various medications for IBS none of which did much. Finally a gastroenterologist tested me a new diagnosis Small Intestine Bacterial Overgrowth (SIBO) which came back positive. That explained the IBS symptoms. The gastroenterologist recommended a Xifaxin trial. It is a very expensive drug with no evidence of effectiveness as far as I could find any studies. So I use probiotics and Ultimate Meal green food for every breakfast, and this helps the IBS symptoms. But not the MCAS symptoms. At least I got four boxes of free samples of Xifaxin, which I can use for international travel if I get traveler’s ‘revenge’. For the newly emerging chronic cough problem I went to an ENT and allergist and all tests came back negative. Four different doctors and specialists could not figure out a diagnosis. A couple years ago I managed to convince my Medicare family practice doc to get me one of the genetic tests for mastocytosis. (My grandfather died of what my father reported was an ‘odd’ form of leukemia; my guess is it was mastocytosis leukemia.) That came back negative. But that test is not one for MCAS. There seems to be no good test yet available for MCAS. Finally last summer when I was in Canada my allergy-like symptoms got much worse, the cough kept me from going public. I went to the local drop-in family health clinic, and the doctor suggested, as I described my symptoms and research findings that I do two trials – a powdered inhaler and if that failed, a generic of Singulair. The inhaler only caused my chronic cough to get extremely worse. The Singulair reduced the cough symptom about 60% in a few days. I read a 2014 medical research article on MCAS symptoms and positive response to an antileukotriene is now one of the diagnostic criteria for MCAS. I take a low dose daily and it has seemed to continue to help. Osteopathic neck manipulation has also helped with chronic cough reduction, as there seems to also be a structural problem in part may be due to my mild scoliosis.

Here is my own short summary of diagnostic criteria based on my reading of medical research articles, Akin, Valent and Metcalf (2010) revised with Petra et al (2014):
Table II. Criteria for the diagnosis of mast cell activation syndrome (MCAS).
Idiopathic MCAS.
After primary and secondary rule out: no detectable clonal MC, no reactive disease, and no allergen-specific IgE Episodic symptoms consistent with mast cell mediator release affecting two or more organ systems evidenced as follows:
• Skin: flushing, urticaria pigmentosa, pruritus (itching), angioedema, dermatographism; rashes, hives
• Respiratory: wheezing, sore throat, stridor; [cough]
[Idiopathic anaphylaxis, with urticaria (during anaphylaxis, unlike SM) and high IgE.]
• Cardiovascular: chest pain, hypotensive syncope or near syncope, tachycardia
• Gastrointestinal: abdominal pain (cramping, bloating), nausea, vomiting, diarrhea, malabsorption, esophagitis; gastroesophageal reflux
• Naso-ocular: pruritus, nasal stuffiness; conjunctival injection
• Neurologic: headache, memory and concentration difficulties/brain fog, paresthesia, peripheral neuropathy
• Musculoskeletal bone/muscle pain, degenerative disc disease, osteoporosis/osteopenia
• Systemic: anaphylaxis, fatigue, faintness
Documentation of an increase of a validated urinary or serum marker for MC activation: esp. increased tryptase
Response to anti-mediator therapy (decr in frequency or severity or resolution of symptoms: e.g., H1, H2, antileukotriene meds

I have or have had 15 of these symptoms. Response to the antileukotriene seems fairly definitive to me.
Wishing everyone in this thread best of luck in getting good diagnosis and finding optimal medication and diet.

Hello @jbhmaine,

Welcome to Connect; thank you so much for sharing your history…you’ve been through so much!

Mayo Clinic allergy and collaborating physicians are leaders in mast cell and eosinophil-associated disease research. 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 about the program by clicking on this link: http://mayocl.in/2pxmbz5

@danmlee @allergynightmare do you have any more insight that might help @jbhmaine?

@jbhmaine

I have had serious abdominal pain since childhood, urticarias, cough problems, and other symptoms that match the new international criteria for MCAS. I had to do my own online research to basically self-diagnosis. Over a life-time I have received about a half dozen or more misdiagnoses, including childhood abdominal pain so severe I fainted and had my appendix taken out only to learn it was normal. I had dozens of x-rays of abdomen, and nothing could be found, all negative so lived for another twenty plus years with diagnosis and treatment for a duodenal ulcer, though that never appeared in any x-ray. Then I got diagnosis of IBS, which seems to be correct but researchers now know that IBS and MCAS often are comorbid syndromes. I’ve been prescribed various medications for IBS none of which did much. Finally a gastroenterologist tested me a new diagnosis Small Intestine Bacterial Overgrowth (SIBO) which came back positive. That explained the IBS symptoms. The gastroenterologist recommended a Xifaxin trial. It is a very expensive drug with no evidence of effectiveness as far as I could find any studies. So I use probiotics and Ultimate Meal green food for every breakfast, and this helps the IBS symptoms. But not the MCAS symptoms. At least I got four boxes of free samples of Xifaxin, which I can use for international travel if I get traveler’s ‘revenge’. For the newly emerging chronic cough problem I went to an ENT and allergist and all tests came back negative. Four different doctors and specialists could not figure out a diagnosis. A couple years ago I managed to convince my Medicare family practice doc to get me one of the genetic tests for mastocytosis. (My grandfather died of what my father reported was an ‘odd’ form of leukemia; my guess is it was mastocytosis leukemia.) That came back negative. But that test is not one for MCAS. There seems to be no good test yet available for MCAS. Finally last summer when I was in Canada my allergy-like symptoms got much worse, the cough kept me from going public. I went to the local drop-in family health clinic, and the doctor suggested, as I described my symptoms and research findings that I do two trials – a powdered inhaler and if that failed, a generic of Singulair. The inhaler only caused my chronic cough to get extremely worse. The Singulair reduced the cough symptom about 60% in a few days. I read a 2014 medical research article on MCAS symptoms and positive response to an antileukotriene is now one of the diagnostic criteria for MCAS. I take a low dose daily and it has seemed to continue to help. Osteopathic neck manipulation has also helped with chronic cough reduction, as there seems to also be a structural problem in part may be due to my mild scoliosis.

Here is my own short summary of diagnostic criteria based on my reading of medical research articles, Akin, Valent and Metcalf (2010) revised with Petra et al (2014):
Table II. Criteria for the diagnosis of mast cell activation syndrome (MCAS).
Idiopathic MCAS.
After primary and secondary rule out: no detectable clonal MC, no reactive disease, and no allergen-specific IgE Episodic symptoms consistent with mast cell mediator release affecting two or more organ systems evidenced as follows:
• Skin: flushing, urticaria pigmentosa, pruritus (itching), angioedema, dermatographism; rashes, hives
• Respiratory: wheezing, sore throat, stridor; [cough]
[Idiopathic anaphylaxis, with urticaria (during anaphylaxis, unlike SM) and high IgE.]
• Cardiovascular: chest pain, hypotensive syncope or near syncope, tachycardia
• Gastrointestinal: abdominal pain (cramping, bloating), nausea, vomiting, diarrhea, malabsorption, esophagitis; gastroesophageal reflux
• Naso-ocular: pruritus, nasal stuffiness; conjunctival injection
• Neurologic: headache, memory and concentration difficulties/brain fog, paresthesia, peripheral neuropathy
• Musculoskeletal bone/muscle pain, degenerative disc disease, osteoporosis/osteopenia
• Systemic: anaphylaxis, fatigue, faintness
Documentation of an increase of a validated urinary or serum marker for MC activation: esp. increased tryptase
Response to anti-mediator therapy (decr in frequency or severity or resolution of symptoms: e.g., H1, H2, antileukotriene meds

I have or have had 15 of these symptoms. Response to the antileukotriene seems fairly definitive to me.
Wishing everyone in this thread best of luck in getting good diagnosis and finding optimal medication and diet.

Jump to this post

Have u tried a low histmaine diet it is the only thibg that makes a big differenace for me. I have anaphylactic shocks if i dont take medication and eat strictlu

Hello, my daughter was diagnosed about a month ago and currently sees an allergist who has her on Allegra and Zantac and a low histamine diet. She’s allergic to nickle which eliminates a lot of the foods so she is left with not a whole lot to eat, she has also already had reactions to some of the low histamine foods. She is becoming very thin and her hair is falling out, her heart races and she has vibrations throughout her whole body. Dr afrin is not even putting anyone on a wait list (even though we live in the area incase of a cancellation) because he is scheduled out to 2019. Mayo has said they aren’t taking any more patients. Does anyone know any doctors that have expertise in this life robbing disease?

@lean1

Hello, my daughter was diagnosed about a month ago and currently sees an allergist who has her on Allegra and Zantac and a low histamine diet. She’s allergic to nickle which eliminates a lot of the foods so she is left with not a whole lot to eat, she has also already had reactions to some of the low histamine foods. She is becoming very thin and her hair is falling out, her heart races and she has vibrations throughout her whole body. Dr afrin is not even putting anyone on a wait list (even though we live in the area incase of a cancellation) because he is scheduled out to 2019. Mayo has said they aren’t taking any more patients. Does anyone know any doctors that have expertise in this life robbing disease?

Jump to this post

Have you tried homeopathics? I started taking Apis10M when ever i reacted and it did wonders l but i recommended having a consultation yourself as everyones case is different. I take Ranitidine anD histimaine LEVIX AND HAVE BEEN GETTING ON SO MUCH BETTER

Thanks for your input, any information is appreciated. I will make note of these things

Hello @lean1, and welcome to Connect. I’m so sorry that your daughter is going through this. I do hope @danmlee @dolan, @mjgarr, @denisefeddersen, @mepslissy, @jools, will join in this conversation too.
@judeeo, I noticed your mention of mast cell disease in another group; do you have any insight for @lean1?

Here’s a link to The Mastocytosis Society, that has detailed information: https://tmsforacure.org/overview/
From what I read mast cells can result in severe allergic reactions; @lean1 how is your daughter managing with the allergies?

When I last saw Dr Butterfield at Mayo more doctors and physician assistants were being trained in Masto and related conditions. My symptoms vary almost daily One day I can eat strawberries and the next I’ll have a reaction….It’s a crap shoot for me. With my low iron and needed protein and calcium for bones…I usually choose to suffer any consequences since I need the other for over all health and well being.

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