Mast Cell Activation

There is an incredible Facebook page for Mastocytosis and Mast Cell Disorders. Over 19,000 people in 2023. Loaded with info and TMS org links.
- low histamine diet
- antihistamines, leukotriene inhibitors
- avoid triggers
- find an immunologist/ allergist that specializes. Oncology/Hematology also. Relatively unknown, so find someone who listens and is experienced in MCAS.

I was also diagnosed with Mast Cell also and I did bone marro test and every test under the son always came back negative I was so FN tired of it all did antihistamine diets I was even in Duluth news tribune about it but finally I went to Mayo and I was told it was Central Sensitization "Google it" but partly bad Fibro and I had those scabs but the reason all tests came back negative for Mast Cell because it wasn't and I'm only speaking for myself but if you can ask who ever you are seeing ask them could there be a chance it could be CS, so I live in Duluth as well if you are able and need to talk let me know.

Hi Kanaaz,
I just joined the Mayo Clinic group discussions, as I have been diagnosed with Lymphocytic Variant Hypereosinophilic Syndrome. In your post from May 9, 2017 you posted a link that contained Mayo Clinic researchers findings about eosinophils. When I went to that page on the website, it said "Page not Found".
I would like to see the correct link (if you know where it is).
I'm also interested in seeing Mayo Clinic doctors that are knowledgeable about my diagnosis.
Thanks,
Carl

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?

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?

@nla4625 You are excited to pass on an article related to MAST symptoms.

You will see that I have moved your question into a discussion where members are currently discussing MAST. I did this so you could more quickly connect with members like @pamandrewsrn @smbryce1 @slarson18 @megansims @huronshores who have experience with this topic and may be a good resource for you. I also encourage you to scroll back through the previous comments.

Below I have linked a another previous discussion about MAST that you may find interesting.
- Mast Cell Disease vs Carcinoid https://connect.mayoclinic.org/discussion/mast-cell-disease-vs-carcinoid/

May I ask if you have been diagnosed with MAST cell activation syndrome formally?

MAST symptoms -Shortness breath, air hunger, difficulty deep breathing

@yaramarthe gave us all an incredible Christmas gift by posting this article about MAST cell activation syndrome: https://hoffmancentre.com/mast-cell-activation-syndrome-histamine-immune-system-runs-rampant/. MAST cells are white cells present throughout our bodies that have to do with the immune system. When they are triggered and run wild, they cause all sorts of problems at every level -- heart, respiratory, circulatory, etc. The article actually lists symptoms by each system in the body. At various stages of our lives, different MAST cells can go off the rails and cause different odd symptoms and illnesses not picked up in routine blood tests. I've been reading a lot about MAST cells this weekend and believe this --and the type of medicine being practiced at this clinic whose term I can't recall --perhaps frontal? -- are 2 doors to answers a lot of us have been looking for. Whatever the name for the type of medicine this is, ie frontal, it is a systems approach looking for underlying root causes of medical issues. The inflammation et all caused by MAST cells run amok is definitely a root cause. Mayo Connect and the Mayo Clinic web site have information about MAST cell diseases; but on a brief reading it seemed they dealt with more specific rare diseases. At this stage of my learning, I need broad brush strokes. THE best site I found was by a scientist called Lisa. I think it was called askmast.com. I'm afraid if I close this to look it up, I'll lose the whole thing...but you can find it. I was thrilled to learn that Cleveland Clinic is practicing this frontal? medicine...they are in my neighborhood. Thank you yaramarthe and Mayo Connect for getting this information to us. Best wishes for a happy, safe, and healthy new year to everyone. Nancy