Sunday, 11 December 2016

Mast Cell Activation Syndrome





Thank you Tami Bohmier and Becca Biram and whoever else in our group has Mast Cell Activation Syndrome (MCAS) for recommending this incredible book by Dr. Afrin. It is the best money I have ever spent. There is absolutely no question in my mind that this is the reason for all my food and chemical intolerances that I have struggled with for the past 30 years. I knew I was one sick puppy, but it is so nice to have a doctor (who is clearly a genius to have figured this illness out) explain why in great detail.
The bad news is that no diet will ever "cure" this illness because it is caused by multiple genetic mutations in the mast cells which are not going to go away no matter what a person eats. However, following a diet that reduces one's exposure to triggers can be very helpful, as I have discovered throughout my very long journey. Zero Carb is by far the best way of eating I have found, but I am still having an enormous amount of trouble with the histamines present in the meat due to the aging process it undergoes before reaching the store.
The good news is that I finally know what the problem is and can start the process of being officially diagnosed. I cannot possibly express in words how good it feels to know exactly what's wrong. Thank you, God! Once I have a diagnosis, I can cautiously begin to explore different medications with the help of a doctor in an effort to manage and moderate my symptoms.
— with L Amber O'Hearn and 21 others.

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Hanna Achepohl Although I am sorry to learn there is no cure, I'm so happy you have found some answers!
LikeReply813 hrs
Laurence Chalem All else equal, the simpler the better, and the more true and beautiful it is....
LikeReply213 hrs
Travis Jensen It's just important to remember the "all else equal" bit. Nobody would argue that general relativity is simpler than Newtonian gravity. 
LikeReply28 hrs
Laurence Chalem Simple, but not too simple...
LikeReply8 hrs
Suresh Korada
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Dakota Darling Good for you. I am glad that you have found an answer.
LikeReply213 hrs
Sharon Day Great to at least know what the enemy is. Congratulations.
LikeReply213 hrs
Vanessa Singh So pleased for you, Esmee:):) Tell us more - I'd love to know what confirmed it for you.
LikeReply313 hrs
Esmée La Fleur Reading the book confirmed it for me. I have all the symptoms.
LikeReply113 hrs
Vanessa Singh What are the symptoms?
LikeReply113 hrs
Suresh Korada
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Willeke Barens how wonderful Esmée La Fleur 
LikeReply113 hrs
Becca Biram  so happy for you. I look forward to hearing how it goes for you with your doctors and finding medications to stabilize the mast cells. Will be interesting if quercetin and/or DAO help you or if you have to go the conventional prescription route as I do.
LikeReply513 hrs
Toni Foster Angela Tombarge, did you see this???
LikeReply113 hrs
Robyn Harrington Going to be an educational journey to follow. Happy you have gained this insight & can gain some peace, finally.
LikeReply113 hrs
Esmée La Fleur Vanessa Singh Above you asked, "What are the symptoms?" It is far far too complicated to try and explain all the possible symptoms here, as they can be different for every one. For me, as I clearly stated above, I have had severe food and chemical int...See More
LikeReply1313 hrs
Becca Biram This is a WONDERFUL explanation.
LikeReply112 hrs
Vanessa Singh OK, thank you Esmee:) Wishing you all the very best with your journey.xx
LikeReply12 hrs
Suresh Korada
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Jeff Cyr Fantastic Esmée! I am very happy that you have finally found a "Big Answer" to your many "Food intolerances".
LikeReply412 hrs
Kim Fridinger Hope you can keep us posted on how doctors opt to treat and what helps! Glad and sad for you!
LikeReply112 hrs
Esmée La Fleur I know this may sound weird, but I feel elated to have this info!
LikeReply1111 hrs
Tami Bohmier It is an insane roller coaster of emotions, isn't it?? 😱
LikeReply310 hrs
Suresh Korada
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Sam Swinea Have you considered parasite cleansing for histamine issues? I'm doing a cleanse right now and I've already noticed benefits in my digestion
LikeReply12 hrs
Esmée La Fleur Been there, done that, many times over.
LikeReply311 hrs
Sam Swinea Esmée La Fleur I suggest looking into nutritional balancing. Could really help. They test your hair and give you mineral supplements based on your results. It's not a cure all but could help you
LikeReply111 hrs
Esmée La Fleur Thank you for your suggestions. I have been at this for 30 years and have tried literally everything natural under the sun. No exaggeration. I cannot take any supplements whatsoever.
LikeReply711 hrsEdited
Joel Nieminen Westerhult Have you tried sungazing? Urine therapy?
LikeReply7 hrs
Georgina Ylva I can easily believe you Esmee. That's the biggest symptom of all IMO, when you fail to respond to everything else.

I've tried supplements, high nutrient foods such as organ meats, etc & all that happens is they make me much worse.
...See More
LikeReply17 hrs
Suresh Korada
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Denis Gelrud Haven't had a chance to read this but how do you get an official diagnosis for MCAS if its a genetic mutation? Do they do a genetic test like 23andme?
LikeReply212 hrs
Becca Biram Mcas often is dx from process of elimination. There are 3 urine tests, 5HIAA, prostaglandin and methyl-histamine. Bone Marrow Biopsy is often done as well.
LikeReply312 hrs
Becca Biram The thing with MCAS is often your levels on those tests are "normal." It is an elusive disease that is different for every single person. No two patients are alike with all their symptoms. Often it can be traced back years when you really start analyzing illnesses from your past.
LikeReply312 hrs
Esmée La Fleur Dr. Afrin explains the diagnostic process in detail on the book.
LikeReply11 hrs
Esmée La Fleur Becca Biram Looking back, I had indicators in childhood such as recurrent ear aches whenever my mother smoked (when she would stop smoking, I got no infections, Afrin says nicotine is a known trigger for Mast Cell Activation), frequent nose bleeds, and chronic sinus inflammation.
LikeReply311 hrs
Esmée La Fleur Becca Biram Afrin says he generally does not do bone marrow biopsies any more for reasons that he explains.
LikeReply11 hrs
Becca Biram Yes he does, but many other doctors still have that in their list of tests. I hope more Drs will start learning from him as he is booking into 2018 (so are the other top MCAD Drs) Some people also have to have mastocytosis ruled out, sadly BMB can take 5-10 of them to find the darn mast cells.
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Suresh Korada

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Neil Young Can adrenal fatigue be linked to this MCAS? I have a friend who had multiple sensitivities but was able to help them by supporting his adrenals.
LikeReply112 hrs
Esmée La Fleur Yes, absolutely
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Suresh Korada
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Roni Marie Byvoets This book is great! Also one reason I joined this group when I did and I Didn't know you had MCAS also. My appointment with Dr Afrin isnt until Octobet 2017 but when I get there it will be great I hope. I already have a diagnosis from my family dr, all...See More
LikeReply212 hrs
Esmée La Fleur I didn't know I had it either until I read this book, haha! But there is no doubt in my mind that I will test positive.
LikeReply211 hrs
Roni Marie Byvoets I am glad you found some answers to your problems that's half he battle the rest is recognizing your triggers and keeping yourself healthy which I think you already do pretty well at doing. Interested to see how you respond and what meds you'll have to...See More
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Suresh Korada
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Becca Biram If you have some mystery illness things going on, I encourage you to check out the book. There are 3+ pages of a list of diseases that he believes are linked to mast cell issues.
LikeReply212 hrs
Vitor Alessandro HM .. I do not think I would be happy for a diagnosis, it's not exactly what I'm looking for, I mean, it's not that much of a value if I continue to feel horrible, I've walked here just dribbling diagnoses of incurable chronic diseases, and many of the...See More
LikeReply312 hrsEdited
Esmée La Fleur A proper diagnosis gives you the ability to target proper therapies.
LikeReply711 hrsEdited
Suresh Korada
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Joseph Bianculli Beautiful, so happy for you and anyone else who's gained clarity through this. 
Also learned something new!
LikeReply412 hrs
Lucia Burrows Esmee, I think I need to read this book. Are there tests you can do? I cannot eat many foods and my reactions to foods are at ridiculous levels. I am just about to have an endoscopy and colonoscopy on Wednesday as I had a stool test and have very high ...See More
LikeReply312 hrs
Esmée La Fleur Yes, he explains all of the tests needed to make a diagnosis in great detail.
LikeReply12 hrsEdited
Lucia Burrows Okay thanks. I'm going to read it and see if it can help me too. Thanks esmee...I really hope this makes a difference to you! I have said to doctors over the last 10 years...I feel like it's in my cells.
LikeReply12 hrsEdited
Suresh Korada
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Denise Arneson I'm so happy for that you have finally found an answer to the why to your physical issues. Hopefully you will be able to find greater relief.
LikeReply111 hrs
Esmée La Fleur Roni Marie Byvoets just shared this in a sub-thread above, but I am posting it here in the main thread too. This may answer your question regarding symptoms Vanessa Singh.

http://www.mastocytosis.ca/signs.html

LikeReply11 hrs
Alison Lyons I just started the book today. Thanks for recommending again. I think it's what I've got too but sounds like it's going to be very difficult to diagnose for me.
LikeReply211 hrs
Jane Bowerman It seems most of those symptoms overlap with mercury and heavy metal toxicity, does he discuss any connection between MCAS and heavy metals in the book?
LikeReply110 hrs
Suresh Korada
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Lisa Jones The treatment looks like most treatment for hives. How will this help? When I got on the prednisone, my immune system tanked and then I got a staph infection. It seems like the start of another vicious cycle. 
LikeReply211 hrs
Esmée La Fleur You have to read the book to truly understand the significance of this illness.
LikeReply211 hrs
Lisa Jones I understand.....I just mean the drugs they treat with. It sounds like mainstream allergy treatment for some.
LikeReply11 hrs
Suresh Korada
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Susan Henderson I see now why it is a syndrome with so many symptoms to weed through.
LikeReply211 hrs
Richard Jarritt keep us updated on any treatments you used, this is very interesting
LikeReply210 hrs
Richard Jarritt Esmée La Fleur what happens when you take nicain? to flush out the histamines in the body, have you ever tried that
LikeReply110 hrs
Richard Jarritt but go easy with niacin, the reaction can be strong, i only started with 20mg
LikeReply110 hrs
Suresh Korada
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Diana Williams I have been on retreat since Oct. will keep in mind this book. I dont go on FB much. Thanks for sharing and tagging me Esmee or I would not have seen this.
LikeReply18 hrs
Huw Lloyd What a wonderful thread - congratulations, Esmée! You're totally justified in feeling elated. I'll be looking into this and would love to be kept updated on how this goes for you.
LikeReply28 hrs
Esmée La Fleur Yes, please get the Kindle version of this book and read it ASAP, as you may well be in this same category.
LikeReply7 hrs
Suresh Korada
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Sara McGrath I have MCAS too. The diet may not cure, but it helps immensely. Sometimes I take antihistamines. There is also an enzyme called histame that helps break down histamine in foods.
LikeReply58 hrs
Astrid Tanis This helps me a little.
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Suresh Korada
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Georgina Ylva Sean here you go, this thread might help you. 

The trouble with MCAS to is it so easily hides itself.
...See More
LikeReply47 hrs
Esmée La Fleur Dr. Georgia Ede if you happen to see this tag, I strongly encourage you get this book and read it. I would love your take on it.
LikeReply7 hrs
Ann Marie I have Dr. Afrin's book (and MCAD). I am still reading it, but the case studies are SO familiar!
LikeReply26 hrs
Dar Jada So happy about your discovery Esmée La Fleur It is truly a relief when someone can nail down what exactly is going on. I look forward to hearing about your progress. For all the support you have given me and others here, expect that we will give that back to you one hundred fold. Your good karma is coming back to you. 💕
LikeReply16 hrs
Paul Mabry Esmée, Chromoglicic acid, most often called Chromolyn Sodium is a medicine that can be used topically and orally and it's main mechanism of action is to stabilize the membranes of mast cells to prevent them from degranulating and causing inflammation. ...See More

Cromoglicic acid (INN) (also referred to as cromolyn (USAN), cromoglycate (former BAN), or cromoglicate) is traditionally described as a mast cell stabilizer, and is commonly marketed as the sodium salt sodium cromoglicate or cromolyn sodium. This drug prevents the release of inflammatory chemicals…
EN.WIKIPEDIA.ORG
LikeReply15 hrs
Georgina Ylva I enjoyed this book to, it was an interesting account of a lady's personal experience with MCAS.
LikeReply45 hrs
Becca Biram I mentioned this above but yes, I love it. This and Afrin's book helped me prove that I'm not "crazy" like a few hospitalists/ER docs and nurses made me feel.
LikeReply35 hrs
Kristen Ring Had to go to the emergency room from a histamine induced like panic attack, I thought I was dying, it felt like my body was shutting down and I was having some sort of heart attack among other things. After my blood tests came back okay the ER doctors told me I needed to start taking responsibility for myself!!!
LikeReply5 hrsEdited
Suresh Korada
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Janice Henderson The relief in finally knowing and understanding what is going on is indescribable. It's like someone has lifted an enormous weight from your chest and you can finally breathe again because you have, at the very least, knowledge of cause and possible di...See More
LikeReply3 hrs
Sean Cagney Esmee is a wonderful person who looks out to help everyone and anyone out there, hope she finds relief in her life!
LikeReply33 hrs
Suresh Korada
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Anne M Hartory Lol. Mast cells
LikeReply11 hr
Mary Titus Wow this has been an unbelievable journey, Esmee.
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Anne M Hartory I took Cromolyn Sodium when it was a wee orphan drug, way back when I was in the Army Nursing School program. I was a Vegan at the time… Can you imagine the inflammation? The Army doctors thought I had an allergy to wool, hence the Intal. Good stuff. now I can't wait to get that book
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Anne M Hartory About a year ago, I quit antihistamines, (for sleep) and it was a very difficult year of adjustment
LikeReply1 hr
Becca Biram How long did you take gastrocrom for? Did it work for you?
LikeReply53 mins

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