Mastocytosis

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From NHS Choices:

Mastocytosis is a rare condition caused by excessive amounts of mast cells gathering in body tissues. These cells release large amounts of histamine and other chemicals into the blood, causing symptoms such as a skin rash, itchy skin and hot flushes.
Mast cells play an important role in the immune system and are found in certain parts of the body, such as the skin and the lining of the lungs and stomach. There are two main types of mastocytosis:

Cutaneous mastocytosis
In cutaneous mastocytosis, mast cells gather in the skin. It usually only affects children – three-quarters of cases develop in children aged one to four.
The most common symptom of cutaneous mastocytosis is abnormal growths (lesions) on the skin, such as blisters and spots which can form a rash on the body.

Systemic mastocytosis
In systemic mastocytosis, mast cells gather in body tissues, such as the skin, organs and bones and can affect any part of the body. The condition mainly affects adults.
People with the condition experience attacks, lasting 15-30 minutes, when their symptoms are severe. During an attack they may have:
• allergic reactions, such as itching and flushing
• gut symptoms, such as vomiting and diarrhoea
• pain in muscles and joints
• changes in mood, headaches and episodes of severe fatigue (tiredness)

Read more on the helpful NHS Choices site

Also helpful – Mastocytosis Society Canada – especially see their diet advice pages – and an awareness raising gorup, MastCellAware.

Mast Cell Disorders forum

Mast Cells & Collagen Behaving Badly. Very interesting blog by Ehlers-Danlos Syndrome sufferer who also has Mast Cell disease and uses a low histamine diet to help manage her condition. September 2015

Mast Cell Activation Disorder, histamine and bone broth. Dr joneja discusses whether drinking bone broth could have triggered a release of histamine and a major flair in MCAD. Augsut 2015

Histamine and Mast Cell Activation Disorder (mastocytosis) – Dr Janice Jonega traces the links and discusses whethr a low histamine diet can help. May & August 2015

 

Research Reports

A cookbook by someone with gluten intolerance and Mastocytosis. La Petite Assiette: a Cookbook for Those With Food Allergies and Restrictionsby Patricia Harrintotn. February 2014

Stress. As stress can increase the number of mast cells in the body (see here) stress-reduction techniques may help reduce them. Meditation for example.

Probiotics may help mast cell disorders because Lactobacillus rhamnosus JB-1 has been shown to stabilise mast cells in rats. July 2012

Systemic Mast Cell disease. A talk by Lawrence B. Afrin, M.D. (Associate Professor of Medicine, Division of Hematology/Oncology, Medical University of South Carolina) on recent developments in our understanding of systemic mast cell disease. June 2011

Helminthic Therapy and mastocytosis

Very few people with mast cell disorders/mastocytosis have tried HT, and the results so far are not very favourable. Also, in one isolated case study involving a young boy, cutaneous mastocytosis was exacerbated by a pinworm infection.

Mast cell mutations in general may not respond well to HT, and it's possible that HT may even make them worse, at least initially. So those with mast spectrum disorders may require a modified approach to the use of HT, including a very gradual introduction of helminths.

Mastocyte and eosinophil activation are the body's methods of trying to eradicate helminths, so mastocytosis and eosinophilia normally increase after inoculation. However, just as eosinophils decrease over time, mastocyte activation may also be dampened. And we know that helminths secrete IgG4 blocking antibodies and stimulate Tregs, both of which limit mast cell hyperactivity.

NB Information on this site is not a substitute for medical advice and no liability can be assumed for its use.

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