There is a wealth of information available out there and in all honesty, it can be overwhelming. You might end up asking a lot of questions: What advice is right? What if it's just rubbish and I do something dangerous? What if it's a quack doctor wanting to take money from me?
Also those who have a diagnosis have often had symptoms for up to 10 years and will have been around many doctors, having heard many things from them, including:
- "nope, no idea"
- "maybe this" - then . . . "No, no idea"
- "We will do this treatment" - then, when it doesn't work - "you are over-focused on your condition"
- "yes - I'm definite it's this" -then after tests - "no. Maybe you're anxious"
- "no, and you need a psychiatrist"
- lastly, a personal favourite: "you're one of those people who go blue for NO reason"
So how can you know your diagnosis is right or what you need to do ?
Idiopathic (we've tested everying we don't know ) Anaphylaxis (shock through mast cells activity) is a rare condition where the immune system, in its various parts, overreacts to normal things: inhaled, eaten, touched - anything.
This response is a medical emergency - see "Anaphylaxis" page.
The affected person often also has daily symptoms-see about symptoms
It is known to be caused by certain autoimmune conditions, hereditory angioedaema, for example, but in 50% of cases, no cause is found.
For our detailed knowledge of how mast cells open - look under the normal mast cell - cell activation pages.
Mast cell diseases can include:
Mastocytosis: extra mast cells. Mastocytosis can involve skin (cutaneuous) or anywere else in the body (systemic).
Monoclonal Mast Cell Activation Syndrome: some extra mast cells, but not enough to be mastocytosis
Mast Cell Activation Syndrome: The person's natural mast cells
all trigger easily to many factors
Here in the UK, monoclonal mast cell activation and mast cell activation disorder diagnoses are new. Many patients are diagnosed with, "We've checked for everything we don't know why" (Idiopathic), swelling (angiodeama), and urticaria (hives, welts); For details -
Mast cell conditions can also be single system (organ), bladder-intersitial cystitis, or bowel-mastocytic enterocolitis
Testing and other possible causes of symptoms under 'Tests' tabs.
Mast cells live in your skin, ears, eyes, nose, mouth, lungs, throat, oesophegus (food tube), stomach, bowel to bottom, bladder, womb, prostate, bone marrow, blood vessels, heart, nervous system and brain linings. See the normal mast cell page.
The contents released from mast cells are: histamine, prostoglandins, heparin, serotonin, leukotrines and tryptase (+50 others), elicit symptoms, from itching to full anaphylaxis .
This also leads to daily symptoms; for treatments, see "Medications."
Medical staff, please use all pages in the "Medical Staff" pages and to find a good doctor known to understand mast cell . This can be a challenge as many doctors don't understand it. Some understand systemic mastocytosis but don't like looking beyond this if tests are normal for systemic mastocytosis.
In mast cell there are only 6 rules -
1) Mast cells (in mast cell conditions ) open more easily than normal to triggers.
These triggers can be anything:
2) The activated mast cells put out chemicals. Some stored, some freshly made.
3) These chemicals cause symptoms - either close by or by travelling in the blood, they activate nerves or pass into the brain.
4 ) Medications control these chemicals - the release , acting or being made.
5) Mast cell breaks all other rules and learns new tricks.
6) We are all individual in our mix of symptoms, medications and triggers .
So what do I need to do -
If mast cell is suspected -
1) Get tested - see 'Tests' tab. Please feel free to contact me with any questions at any point.
2) Triggers - see the triggers page for common known triggers. These can be anything.
3) Begin a journal of everything you eat, drink, wash with, and creams you rub in, and all symptoms by time - see Journal/diary page under 'Triggers' ;-)
I will happily discuss this with you and go through them via email.
4) Begin a naughty list - if you have reacted to something you will again. It may be ok one day but not another or give a delayed reaction. But put it on the list.
5) Learn about mast cells - see the 'Cell Activation' page - under the normal mast cell ;-) also about symptoms experienced.
6) Learn about safety -Anaphylaxis , 'NO drugs' and if you are having ANY procedures -pre medication protocol
7) Learn about medications - information under 'Medications'. The mix of medications is individual for each person depending on symptoms and other things. Please contact me with any questions. Some doctors can diagnose but have little idea about how to treat us .
Frequently asked questions
Diet and triggers.
There is a low histamine diet. This won't cure you. But removes known triggers from the diet. Not everyone needs to avoid everything on the diet. But before diagnosis and /or before you're stable, the low histamine diet reduces symptoms.
This site has a simple basic list.
The 'Triggers' page has full details of where known high histamine foods lurk.
How do I know it's a food or another thing that is a trigger?
This can be difficult. In the initial period before medictions are employed it is incredibly difficult to pin-point triggers, with so many symptoms .
Some are blindingly obvious - so are easy to identify even without using a journal.
Others show through patterns emerging in the journal e.g. for me - medical exam gel, pork pies, trifle, ekg(ecg) tabs , capsules - all were due to gelatine content.
When you begin medications - it will often give you a couple of illness free weeks which is lovely, then symptoms seem to get worse. This is because you are protected from histamine: you now notice reactions beginning rather than symptoms just being one big pile.
The journal is very useful to identify triggers .
Using lists of known triggers and experience of other mast cell people can help, as although we are all individual we have many experiences is common .
Known safe Forums for information
- for Mastocytosis - tmsforacure.org
- Fot MCAD and associated conditions -
- For an American focus forum -
For more general support -
- Inspire - www.inspire.com .This is a rare diseases forum.
Join the NORD group
There is no magic pill or cure currently. But it can be well managed with medication and trigger management ;-) This takes active decisions on your part. Giving up things is very hard.
Mast cell conditions - outside mastocytosis which has set criteria - are defined as a condition affecting 2 or more body systems -with mast cell as the cause. If one system is affected - say joints, in the case of arthritis - it is an example of a single system condition.
A Doctor Worth Seeing . . .
Right now you maybe thinking "Huh?! I wish!" Unless, that is, you haven't been round the block yet ;-)
Within the community we know about doctors who know mast cell. This can be through expereince, either 1 patient or hundreds, reading or studying with a top doctor. We find the range of experience affects how well they investigate, treat, manage and give information.
Experience has shown -
Allergists - tend to focus on IGE true allergy ( see about mast cells ) and can say that symptoms can't be explained outside of this so when IGE tests come back normal -they say right - "No, not my camp". A small number will consider mastocytosis.
Dermotologists focus on skin presentations and get a bit 'Hmm' ... if you have multiple symptoms all over the body.
Rhumatology -tend to focus on autoimmune causes of mast cell activation and when its a no, they get stuck .
Heamotologists - look for systemic mastocytosis. Some will then move onto mcad/mcas, but some don't.
Immunologists - focus on another dysfunction of the immune system and when they don't find this, they may consider systemic mastocytosis then draw a blank.
Finding a doctor willing to learn, even if they aren't experienced is very useful. Please feel free to give them my site so they can get up to speed on the research. There are papers for doctors on each page.
But it's worth getting work done locally - and then seeking a mast cell specialist to bring things together; the number of doctors capable of testing, beginning treatment and long-term management are less than we would like, and we usually need to travel to see them.
The 'medical staff' section has lists of known doctors who are capable of the workup and specialists
If you are in the USA and have no insurance, please conatct me. The national institute of health run research which includes testing and medication mangement. So no insurance doesn't mean no treatment ;-) . MCAS is a new diagnosis and is being gradually accepted in the USA. If you find a doctor doesn't like newer diagnosis -then there are sources of information to back you up using an older, longer established diagnosis .
In the UK, we can be referred to a local immunologist via our GP. After this if referral is required further away you, may meet resistance -BUT -you can be referred anywere if you need that service and one isn't closer. In the UK mcas is rarely accepted yet.
This link has list of tests for a whole workup .They may not all be needed . Please feel free to contact me as I can advise more specifically .
The stress of appointments and travelling will increase your symptoms. I can advise about how to manage this .
Appointment letters say to stop all medications .This isn't required for most tests. So please check with the doctor. If you have had an anaphylaxis please don't stop your medications. Doctors would rather you were safe .
Chronic/Idiopathic urticaria - Hives , wheals
Whole body -
ISM - Indolent
Mast cell activation syndromes
Single system condtions known to have mast cells involved:
GERD/GORD -gastro oespheageal reflux disease - stomach acid going up into food tube and up to mouth causing burning
EOE - Esionphilic oesphageal
Gastritis - from high acid or infection by H Pylori
IBS - Irritable bowel syndrome
Arthritis - Rhumatoid
Arhlersclerosis - furry arteries
Burning mouth syndrome
Tissue re- modeling conditions
COPD , Heart failure , renal fibrosis
Proposed Links to mast cell in research
POTS and HPOTs
EDS all kinds esp type 3 - hypermobility type
headache sequale from chari malformation
A mast cell is a cell born in bone marrow but lives all over the body - skin, eyes, ears, nose, mouth and airways , mouth to bottom (GI tract), bladder , ladies and men's bits, blood vessels, heart, nerves, brain and brain linings. They are activated by chemicals attaching to special points on the cell surface called receptors . They contain lots of pre-strored chemicals in granules and make new chemicals. Some or all of these are released or made when the cell is activated.
Go to 'Normal mast cell' for a lot more detail and information
We have an amazing community of patients with confirmed mast cell diseases, single system mast cell conditions and conditions which mimic mast cell conditions.
Follow this link to details of groups and specific projects being undertaken by patients.