My true IGE allergies - Pollen , cat dander , house dust - which get made more serious by other mast cell activity
Patients with mastocytosis / mast cell disease can have true allergies at the same rate as in the general population , about 20% . Allergy desensitization injections , tend to , in most patients with mastocytosis cause wholesale mast cell de granulation so are not advised .
I have 3 true allergies -cats,house dust and grass pollen .NONE of them are high enough IGE to explain my anaphylaxis .In mast cell conditions allergies are triggers which make you more likley to go off
The high histamine time naturally in our bodies is 2am - This leads to many of us waking in the middle of the night with symptoms . These can be any of the known symptoms .
We are individual in what bothers us . If you think its a trigger it is ;-) I smile as finding a trigger means you can avoid it
;-) When symptoms occur due to a trigger it takes 2-4 days for the mast cell to re seal , stopping contents escaping . So many of us have extra meds to cover this time .
A low histamine diet is advised .
This is because our bodies are already dealing with a large amount of histamine out of our mast cells . The table above shows a low histamine diet.
Histamine is made from histidine - which is present in all protiens. We need some hisitidine as it is the precursor of several protiens not just histamine .
Avoiding histamine rich foods wont cure you but will reduce symptoms from this known source .
Any diet should take into consideration your own triggers or suspected triggers .
The key to food triggers is to keep your diet as clean- free of any artifical chemicals as possible and unprocessed as possible with as few ingredients as possible .
This also applies to all triggers .
In mast cell conditions wether you react to a low histamine food is dependant upon many factors
- How many factors are making you likely-ripe to go off
- some triggers will make you react everytime
=some you will be OK one day but not the next
- Someyoull feel fine -then be ill the next day 9without having had anymore food
-number of other triggers present- e.g in spring I am more reactive because of the pollen count being high
-In the summer pollen +heat make me reacting very likley .
-In an infection ,when my hormones are high all makes me more reactive
Your naughty list =NOlist -will be increasing daily for 3-6 months. Then it will begin to slow down .
But FOOD CHALLENGES as advised by intolerance sites are pointless and its once a trigger always a trigger .
This applies to all trigers
Triggers are so numerous I advise you only exclude the trigger food and closely related foods . Otherwise you can quickly find you are eating nothing .
I have had freinds who felt they reacted to sweet things so excluded all sweet stuff and were then not having any carbohydrate .and were experiencing low blood sugar
Its shame to exclude something to find it was the pollen count.
When the bowel has been affected it swells up . The stomach has high acid. The bowel becomes leaky - letting protiens in to the blood that would normally stay in the bowel . Even the act of digesting at this point will give symptoms
Cause and effect can be hard to pin down but you will work out triggers .
Now in mast cell disease the cells get triggered .
This is sperate for IGE,true allergy/type 1 hypersensitivity raction . The process by which this happens are varied . See mast cells.
Here we focus on the actual things which trigger mast cells and how to care for yourself
The inborn-Inate immunity
The diagram below shows how the Complemant alternative pathway gets sponatiously activated and leads to anaphlatoxins -
Which make mast cells open - by attaching to apoint on the mast cell membrane and spill contents but also have their own symptoms .
Makes blood vessels porus-which leads to fluid leaving the blood .This causes
-swelling but not visable until 2l (2/5 ) of total blood volue is lost
-not enough fluid left in the circulation causing high pulse and momeneterily high blood pressure-then low blood pressure and low pulse
B) Makes smooth muscles spasm- throat, airways, chest wall, oespohegus ,stomach , bowels to bottom, bladder, womb -causing vomiting, diarrhoea.cramps, bladderspasm, womb spasm and airway closing and chest wall spasm.
c) makes mast cells open spilling thier contents - De granulation.
You will tend to have had a certain amount before the reaction begins- 2-3 mouthfuls -which leads to more serious symptoms .
Certain foods -
Vinegar's-Malt, spirit, balsamic , white,wine, red wine , Rice,cider
Coloring & flavoring in medications
Anesthetic agents- see medication and medical staff page
Antibiotics - mycin antibiotics
Plasma expanders (i.e. dextran)
CT contrast - absolute NO
Drugs - metroclopamide
Tricyclic antidepressants - Tricyclic antidepressants
If a person is on these and needs an EPIPEN, it has a risk of causing high blood pressure and or arryhmias - which are heart arythymas which are outside the normal. So these should not be given to patients with aknown need for an EPIPEN
Beta blockers - Beta blockers - cause mast cell to open and spill contents . Also if a person is on beta blockers and needs an EPIPEN - Epinepherine /Adrenaline . It will work opposite ,
There are 2 types of receptors which adrenaline can work on
Alpha-lower blood pressure and pulse
Beta -which increase blood pressure and pulse .
By the beta reacptors being blocked by the drug . The epinepehrine is needed to increase the pulse and blood pressure but it cant so works on the alpha receptors - further lowering pulse and blood pressure.
If a person has to be on beta blockers with a known need for an EPIPEN . They should be prescribed an alternate drug to use in Anaphylaxis as the first line drug at home . This is glucagon .
Narcotics - Morphine and opites
Mycin antibiotics - Erythromycin , vancomycin ,Streptomycin (Old treatment for heart attacks )-(MI)
CT CONTRAST - Will cause anaphylaxis .
Iodine as trigger - in many brands of salt
MRI contrast safer ( with premedication cover )
Pesticides - contain aldehyde -wether this is in high enough levels within foods is not testable currently . But reactions to otheriwse safe commercially produced - non organic foods could contian aldehyde
Detergents -In medicines
Alcohol fumes -In pub's and at home over an evening
Cleaning product fumes -
- from any product
- Those with alochol and vinegars in are a particular issue
- Very chemcial-like the blue powder used to clean in hospitals
Diesel/petrol fumes (Gas)
Are well known to cause mast cell activation
Sulphite fumes -as sulphur dioxide
Building dust contiaing paint and deep wall structures -morter /bricks
Volitile organic compounds
- All paint fumes esp gloss paint
Aldehyde- is part of formaldehyde and plastics
leading to the following being triggers
- Plastics on hot day e.g shoe shops
- Hot drinks from plastic/ polystryine cups
- Cooking in plasic e.g ready meals
- Pollens - can blow up to 10miles in the wind .
If you move home it takes 2yrs for you to become allergic to the new pollens
- Fragrances -contain formaldehyde - In everything .
Some find atrifical scents most difficult like mens deoderants
I struggle with old lady scents
Perfumes -due to alochol and fragrance
- causes air way symptoms
-sources- old tents ,anything remaining damp, garages, basemants
Cold (temperature)- directly trigger mast cells .
This can also be sudden chnage in temperture
-feeling cold is associated with menstruation and infection
Bacteria or fungi
Exercise or exertion -directly trigger mast cells
Friction -of clothing particularly under wear
Heat (temperature)-directly trigger mast cells
Ambient temperture over 20 oc
Room freshener sprays
Smells - will amke you feel bothered with airway symptoms
Sunlight - direct or indirect .Will bring symptoms . Vitamin D is produced from sun exposure.This doesnt have to be direct sunlight .
Upset -emotional -can cause sysmptoms immediately or delayed for 48hrs .
Infection with viruses, bacteria or fungi
Excercise /exertion ( can be minimal )
Fatigue- not to be confussed with triedness. Complete physical exhuastion, mental and emotional exhustaion.
Bacteria or fungi
This is the list is adapted from tmsforacure.org
SLS free products -
Naked Range at Boots
TIGI do a SLS free shampoo
Loreal also have one
Redken is SLS free
Soft toothbrush, even childrens toothbrush-lots of mast cells in the mouth and gums
Shower and body wash - Naked range
Body shop soap-if you are ok with the colours ,which are natural
KY jelly -alochol and geltine free
Naked range boots
Some soap and glory
Deoderant (alochol free )
Salt of the earth
Caution -Simple soap makes me flush ++++
Ask visitors to use your soap or air bathroom completely before you use it . Also using fans to push fumes away from you .
Sulphites are food preservatives which increase the shelf life of a product .
Sulphites are a trigger for some . they can produce minor intolernce symptoms -which are not what I am refering to here .In This is a complete list (in so far as my research has given me ) for sulphites .
Sulphites E220 -228 Wine , Cider , martini , larger , beer
Popcorn , many sweets ;-( , toffee bob bons , toffee in general
Fruit Juice - especially from concentrate. Has citric acid and sulphur dioxide in also
Cooking sauces - white wine sauces
all vingars - baslaslmix, white and red wine, cider , rice , spirit
in -brown sauce, tomto ketucup, mayonase ,
Sausage rolls - poorly labelled batch got me , now on anaphylaxis campaign web site from other subscriber
Garlic bread . ( variably labelled ).
Pizza dough .
Grapes - naturally high in sulphites , fertiliser contains sulphites , transported with sulphite for freshness. ( unlabeled)
Bananas - sulphur dioxide used to mature bananas for sale (unlabeled)
All types of vinegar - sprit , distilled malt , balsamic , white wine , cider , rice .( some labelled )
Raw young garlic
Teas - instant and pre- prepared .
Milk - skimmed or semi skimmed with added vegetable oil - UHT ( unlabeled )
other meat products - inc
Pies and pasties - Maltodextran , pastry improver , in meat or vege prior to processing (unlabeled
Breads , baguettes in particular , dough improver - breads , all kinds esp. baguettes , bread sticks ,
Salads - for colour ( variably labelled )
Anything containing - corn starch , maize starch - soups , custards , gravies , dried mixes for meals , cakes , skips , Corn oil - crisp and dry , vegetable oil , maize oil Symptoms experienced
Meat , vege , apples - preserved in sulphite prior or after processing
Cheeses - the longer matured the more the sulphites ( unlabeled
Corn products - oil , corn starch ,
Horseradish , mint , apple sauce, mustard,
Jams and marmalades
Cakes and bakery products
- mince pies , fruit pies , Christmas cake , Christmas pudding , Danishes ( fruit) ( variably labelled
Dried fruits , apricots , raisins , sultanas - cereal containing dried fruits ( variably labelled )
Fruit jellies - Jaffa cakes - gelatine and fruit juice concentrates ( variably labelled
Dried products - vegetables , garlic , stock cubes , soups . carrot
Dried pasta , noodles - sulphite used to soften grain for processing ( unlabeled ) ,
Fresh pasta - due to filling ( variably labelled
Syrups - maple , and custards ( poorly labelled )
Potato - instant mash , dehydrated , crisps , potato starches
Potatoes- frozen - chips / fries , pre packaged, pre cooked , peeled . HOT CHIPS
Gelatine - skin soaked in sulphite to soften - found in :- yoguarts, Jaffa cakes , jellys , custards ,
Note connection to ECG tabs
Crustaceans - prawns - 30ppm sulphite allowed , frozen , cooked or f,resh
shrimps , crab , lobster - put on to preserve colour on boat
Some fresh fish for colour - salmon
Fishmongers should have sign up
All hard/matured cheeses
some standard milk
Some normal milk
Pollen, dustmites and inhaled allergens (and triggers)
Use a vaccum with a hepa filter will keep pollen and dust mite levels down .
Keep windows closed in the day
cover the bed in the day and uncover at night
shower/bathe every evening to wash pollen off body and hair to prevent reactions during high histamine time at night
Use matress covers and hoover matresses and wash bedding regularly
Use window pollen filters if you want to open the windows .
Use an air purifier day and night.if air con is used, get pollen filters changed regualry, remaining away from the location until dust has settled .
Keep cool or your perfect temperture x
Stress causes release of Urocort the precurser to CRH and CRH -CRH can trigger Mast cells .
Which relases histamine , which stimulates subsbace p to be relased from the nerves
TNF@ - from mast cells - causes the hypothalmus to produce CRH =more mast cell activated
Releasing more TNF releasing CRF .
TNF can also activate mast cells
CRF is released from mast cells .
Il1 activates hypothlamus to increase temperture and leads to increased cortisol release from adrenals
WHAT ARE DIESEL ENGINE EXHAUST EMISSIONS?
Diesel engine exhaust emissions (commonly known as 'diesel fumes') are a mixture of gases, vapours, liquid aerosols and substances made up of particles. They contain the products of combustion including:
polycyclic aromatic hydrocarbons.
So sulphur dioxide and aldehydes -both mast cell activators -and it all begins to make sense
These results show that acetaldehyde is a powerful activator of mast cells,
This was suppotred by Kawano et al(2004) , reseached to see if acealdehyde caused any effetcs on human airway mast cells . The results showed mast cell degranulation of histamine only which caused airway constriction strongly suggesting that acetaldehyde stimulates human airway mast cells to release histamine, which may be involved in bronchial smooth muscle contraction following alcohol consumption.
Ethanal-Alochol is a major source of acetlyhyde . Mast cells patients have reactions to vinigars - ascetic acids and aspirin which is part ascetic acid.
Aldehydes are also present in formaldehyde present in all
Food type high in Histamine
Food NOT allowed
Milk and dairy
Breads and cereals
Products made with:
Some jams, jellies
Pasta and rice
All packaged rice and pasta meals
fermented /picked products
Sauerkraut ,egg , gerkins
Tomato and all tomato products
Fruit dishes, jams, juices made with restricted ingredients
Can include all citrus
Meat, poultry and fish
All fish and shellfish
All processed meats
All leftover cooked meats
All prepared with restricted ingredients
Raw egg white (as in some eggnog, hollandaise sauce, milkshake)
SOY beans in any form - soy leicten-MIlk , TOFU , can be in vegetable oils
Fats and oils
All fats and oils with color and/or preservatives
Prepared salad dressings with restricted ingredients
Prepared gravies -crossing with cornflour sulphites
Spices and herbs
Seasoning packets with restricted ingredients
Any dreid herbs 9cross with sulphites)
Prepared desert fillings
Prepared icings, frostings
Spreads with restricted ingredients
Miscellaneous All chocolate and cocoa
Prepared relishes and olives
Most commercial salad dressing
Coffee -puts pulse up
Alcohol: plain vodka, gin, white rum -50% of pts dont tolerate alochol
Fruit juices and cocktails made with restricted ingredients .
All other carbonated drinks
All drinks with "flavor" or "spices"
All fermented drinks- Beer
Sulphites legally have to be labelled in over 10ppm ( parts per million in the European union .
But is not is less than this - even if a product contains acumulative amount over 10ppm
10 ppm is the level that can be tested - not a safety level .
These reactions can be true IGE allergy( rarely) but are more commonly idiosyncratic reactions
Adapted from site on l - http://www.urticaria.thunderworksinc.com/index.htm
Sulphites cause mast cell activation in the lungs by damage when they are oxidised-an oxygen particle added.
A study showed sulphur dioxide ( sulphite gas) when inhaled , activaed air way anrrowing and mast cell activation
Sulfur dioxide gas (SO2) is an irritant, and so reflex contraction of the airways from inhaling sulfur dioxide gas is one possible explanation. This mechanism may explain the rapid onset of symptoms when drinking liquids like beer or wine, when SO2 gas is inhaled during the swallowing process.
Some people with asthma who react to sulfites have a partial deficiency of the enzyme sulfite oxidase which helps to break down sulphur dioxide.
Some people (but not many) have positive skin allergy tests to sulfites indicating true (IgE-mediated) allergy.
E220 Sulphur dioxide
E221 Sodium sulphite
E222 Sodium hydrogen sulphite
E223 Sodium metabisulphite
E224 Potassium metabisulphite
E226 Calcium sulphite
E227 Calcium hydrogen sulphite
E228 Potassium hydrogen sulphite
E150b Caustic sulphite caramel
E150d Sulphite ammonia caramel
Symptoms - can be minor but can also be more serious to major
- Diarrhoea /vomiting
- Fast heart
BEWARE -I have referenced specific websites deliberately . Some information on sulphites is wholly inadequate or dangerous
Sulphite symptoms and background
Autoimmune Mast cell activation -
Will lead to symptoms without any obvious external or internal trigger . The more active an autoimmune condition the more it activates - its a magnifier .
Sometimes -the trigger is never known .This is called idiopathic -anaphylaxis or angiodeama ( swelling) and urticaria (hives ) .
Sometimes a build up of reactions to various things will reveal a trigger - example -
In me over 18months - medical examination gel , heart tracing tabs (ECG) , ultrasound gel , a pork pie , cooked pork meat (processed ) , jelly/jello - In me =geltine .
Doing you diary everytime you react - i find adilay running diary is useful - allows these trends to reveal themselves.
Because histamine turns your brain to mush .I send myself sms messages "text messages" recording my symptoms which helps .As different triggers can present with different symptom clusters .So you will work things out this way .
In the moment - do what your body needs - wether that be remove yourself from a room or situation , have meds-anti histamines or have an epipen.
If it can be worked out - you will work it out. if not -then you won't
You can trust your body ;-)
I say this because for a time I didnt trust mine. I felt it had let me down and not protected me . So I second guessed myself xx and nearly left taking my epipen too late .
Its always ok to ring 999 /911 and to use an epipen xx
Remember the only rule is mast cell breaks all rules
The ability of combustion products, such as diesel exhaust particles (DEPs), to modulate the immune system has now been firmly established.
DEPs can synergize (work with ) with allergen at the human upper respiratory mucosa to
enhance allergen-specific IgE production,
initiate a TH2 cytokine environment, and
even promote primary allergic sensitization.
Experiments suggest that these effects result from the initial activation of mastcells to produce IL-4. .
Hypothlamus -in the brain , Pituatry -at the bottom of the brain
Adrenal cortex -in Adreanal glands at the top of kidneys
Cort-cortisol - the bodys natural steriod -vital for life (see medications )
Your body is very clever at keeping you alive -see anaphylaxis - so if you feel unwell don't worry about what is setting you off - I call it making me reactive xxxxx
Use what you have to make you better ;-)
Link about shock and the process
With certain allergies there are foods which are cross reactive
Many lactose free diary products are advertised .These are NOT safe for those with true milk allergy because it is the protien you are allergic to -NOT lactose which is the sugar in milk ,which is what has been removed .
Soy products are high histamine foods and not safe,
Cross reaction also applies to inhaled true allergies
This is called "pollen-food allergy syndrome,"
AKA oral pollen syndrome . Pollen food allergy syndrome is prefered because it encompasses oral and systemic symptoms .
The protiens in the other triggers are very similar to the pollen which the person is truely allergic to .So when the similar protiens are ingested-The body thinks the person is eating pollen .
Symptoms may include:
Itching or tingling of the mouth, tongue or lips (oropharanx)
Swelling of the mouth, tongue, and/or throat (angioedema)
Increased eczema symptoms in patients with eczema
Rarely: vomiting, stomach cramps, or diarrhea
Very rarely: anaphylaxis
This happens more in the season for that allergy .
People sensitized to (birch) pollen may have OAS symptoms when they eat the following foods (in order of frequency):
Birch Pollen allergy
Grass pollen allergies are associated with sensitivities to:
Ragweed allergies are associated with sensitivities to:
Mugwort allergies are associated with sensitivities to:
From early in this I realised that some triggers accumalted to cause bigger reactions ,than they would alone .
This is different to true allergies in which everytime an allergen is encountered even in small volumes a reaction occurs - which is in proportion to the amount of IGE - pre marked mast cells -that person has for that allergen .
What trigger becomes the tipping factor can vary every time a reaction occurs .
Research has shown that certian triggers act as magnifiers to cause anaphylaxis .
Swiss , smoked cheeses, gouda, peramasan , cheddar, red liecester .
Mouldy cheeses - stilton
Has preservatives in for trasport which can be accross europe
Malt . malt-o-dextrin/dextran
Vinigars in breads
Dumplings in pre prepared meals
Cakes with soy leicthin (emulsifier )
Packets of cake mix with ingredients preserved
Margarine containing soy , rape seed oil ,corn oil
Sulphites common -often unlabelled
Spinich , tomato fillings , cooked meat fillings in fresh pasta
Beware -NO added preservatives -in products not refigerated
Beware of packet / jar sauces-vinigars, preservatives
Mousaka , rattoule , vegetable soups inc "freash "ones
ANY VINGAR preserved products inc -beetroot
In many products
peppers-chilli and standard
Watch dried fruits as are preserved even in health food shops
Any overripe fruit even permitted
Pinapple gives delayed symptoms in some .
Mango sauce, mint,apple, horseradhish all contain vinigars and sulphites
The longer fish is left ungutted after catch -the higher the histamine
Leftover /processed meat convert their own histidine to histamine .Freezing as soon as cool halts the increase in histamine
Cakes, buscuits with egg/egg powder
SOY gets everywere
often has caramel colour
vinigars with it
Oilve oil is GOOD
Low fta or long shelf life diary products have animal fat removed and replaced with soy or corn oil ,oil seed rape or sunflower oil
All except pure butter have some vegetable oils -inc olive oil spreads
Low fat products contain thickeners-soy, corn flour or gelatine
Curry poweder contains several ingredients
pre prepared nan breads
"pickles " from indian takeaway
Maple , icecream sauces
Malt-o-dextran , maltilol , A sulphamine K
Gelatin - cooked packet ham , Pork pies , jelly -in deserts and trifles , thickener in loads of products
Sulphite absolute NOand ferments so high histamine
Vinigars in - spirit vinigar-mayonase, sald dressings , ketuchup, malt on chips on vegatables -eggs, gherkins, beetroot
balsalmic in salad dressings and on meals in cooking,red wine and white wine vinegar
Rice vinigar-soy sauce
Alochol causes symptoms up to anaphylaxis in 50% of patients.Even if its burnt off in cooking .
Beware jar sauces /packet sauces
Fruit cordial / squash /juice from concentrate
Including carton "fresh" juice
Only NOT FROM CONCENTRATE refrigerated juice is safe for some .
All fermented drinks and foods
All beer,wine inc non alocholic subsitutes , ciders, bitter , martini, peach schnapps
Inverted glucose syryp is used in many products which is high histamine and high sulphite
we are all
That is why I haven't suggested safe foods
Corn is a good example.
Its bad for me But not high histamine
Listen to your body
The 2am high histamine time - leads to waking with symptoms -fast heart, flushed, swelling .The itching normally wakes me .I keep a h1 antihistamine by the bed to take if I wake up itchy. I can be very thirsty as well -from fluid leaving my blood going into the tissues -so I drink until i don't feel thirsty anymore
The symptoms can also be -
- heart burn
- being short of breath
Amoungst others .
Heart burn can be due to acid rising up the eating tube -oesphegus -which can give a burning feeling and it can irritae your throat. This shortness of breath goes when you sit up and sometimes burp .
Shortness of breath from swelling doesnt go away just sitting up -but does settle with an antihistamine
Remember if you feel very unwell -call 999 (911) and have your epipen xxx
My flushes are like instant sunburn -Importantly I dont sweat.
This is adistinguishing feature of mast cell flushing
My face is dry .
The flushing is all over highest on my cheeks, chin and chest .I also get swelling -My nose diasspears ,i get very deep dark rings under my eyes and you can see swelling in my forhead .
It often is one side only -starts in my ear .if its both sides one side is always more swollen .
When I am actiavely swelling i get tingling/itching .
When this tingling stops and the burning stops I know I will settle . I am often still very flushed .
When I first got poorly -I didnt think of allergies .This was summer 08. In honesty -i just wanted to find out what was wrong and get better -end of .
Then I had my first Anapahylaxis and I thought-Oh well its so going to be a one off .
After number 4 -I thought Ok I had better start taking this seriously .
So i began documenting my reactions .
-By sending myself text messages with my symptoms in and foods eaten .
It was several months before I considered other things as triggers . This was because I had seemingly myseterious reactions with no trigger .
It was at this point I began keeping a proper diary of everything I ate, drank, washed and rubbed in including medication and any other factors
Even then I woefully neglected many obvious triggers .
So I wanted to give you some tips and a document to help you begin diary keeping .
The diary keeping link has guide and help with diary making ,which can be used electronically or as paper file .
The Link opposite has the build up of my naughty list -through SMS and triggers through noting things happening around symptoms .
Many of us need meds to really work out triggers as in the beginning we are ripe to go off - to anything . This is because some mast cell chemicals come out of and then activate more mast cells to open splilling contents
The aim of trigger management and medications is NO symptoms . For the anaphylactic amoungst us -The aim is ONE yes ONE anaphylaxis aYEAR - I know
Mine was 2 weekly at best for 3 years but it is possible
This takes time -but listen to your symptoms and you will get there
When you flare begin diary keeping again . As writing things down will quickly show potential culprits .Sometimes I question if my symptoms are mast cell -then I write them down and its blindingly obvious.
We all need reassuring every now and then .
Many of us can't go in stores . I can't go in any with food . i react from itching/flushing to being very dizzy .Clothes shops spray perfumes inc charity shops .DIY stores =passing out.
UK supermarkets vary in the quality of the labelling they have for the 9 recognized food allergies which require labelling by law .
Top 10 Food Allergens in the US:
Tree nuts (walnuts, almonds, cashews, pecans, etc)
Shellfish and other seafood
Gluten – a protein commonly found in wheat, but also in barley, rye, and some other grains.
Top 20 food allergies with delayed reactions
Wheat gluten (gliadin)
Gluten (in wheat, oats, rye and barley)
The top 10 have to labeleed legally but other true ige allergies or triggers do not .
Most of us can not go into stores -food stores-because we react to something in them
Online shopping has helped reduce the total amount of time required for shopping. All own brand and most brand ingredients can be checked online and ano substitutes can be selected on sainsburys and tescos websites .
Ingredients should be regularly re checked .
Sulphites are not labelled in less than 10ppm , even if several ingredients cumalativly is over 10ppm.
In my experience
Labeling is best at Morrisions
Next best and least preservatives in Sainsburys
Then Adsa . Asda food has been inadequately labelled causing me an anaphylaxis.
Unfortunately Morrisions don't do online shopping
Lidl and Aldi and speclait supermarkerks I can't comment upon .
Food is health food stores can be arisk as cna supplements - for safe supplemts see medicines section
Food accidents are easy to have .
I operate a read the label, read it again and read it again
I hold responsibity for everything that passes my lips .
Allowing others control is high risk for accidents
Link is to my Naughty list as an example and how it built up
Has mast cells
When eating out you can reduce the risk of an accident .
Firstly -Keep your medication level high , have your EPIPEN and liquid antihistamine with you .
Secondly -don't be embaressed
Be clear in your questioning on ingredients
Always get aclear answer were you know ingredients have been checked .
Even these days some people do not understand what anaphylaxis is and the potential risk they will be placing you in
An example -i asked abouta "home made " cake .the topping looked glazed. So i asked if it conatined any sulphites preservative .
They siad no no, all our food is fresh.
I said NO. I need you to check with the chef and any packets for sulphites
They went out back -came out and said NO , it does contain sulphites, can you just take it off .
Had I not asked the second question I would have been streachered out of there
Contacting a venue before you attend to explain to the chef about contamination risk. even using the smae spatulla can be a problem for you .
But be prepared - even if you have never shocked /had anaphylaxis
Translation cards are availble for countries - (English, Spanish, Portuguese, Italian, German, Greek and French).
Google translate is ok for basic converstaions but can not make sense when translated .
Some foods are called different things
Aubergine egg plant (high histamine food ) -I got caught on this one
Courgette -zuccini ( safe ) USA / Austrralia
Chips - fries
Crisps - chips (usa )
Benadryl UK -is ceterizine
Zyrtec -is ceterizine in USA and UK
Benadryl USA is diphenhydramine
Diphenhydramine UK is NYTOL -over the counter sleep aid
You cna carry your EPIPENs aboard a plane .
It must be in the original packaging and you need adoctors letter and epipen prescription .
You should allow more time for security
Also Check with your travel provider-plane / boat /cruise about keeping the cabin trigger free for you .
Meals can be ordered but this needs checking with persistant questioning to trust it.
Anapahylaxis charities are availble in most countries .
IGE allergies have seasons .
Many mast cell patients report good times of year and bad times of year - even if they have no trie -ige positive allegies
Also our conditions seem to learn new tricks and triggers .
Tricks- symptoms and how they present.
Triggers - Something that just didn't trigger you, now does . Unfortunately things rarely become safe .
Some report that safe foods can vary. And when they are in a time were many triggers arent known ,changing foods can be beyond challenging . i hope the information here will help ;-)
Also looking at the whole picture in terms of the body.it can be hard to do this if one area previals in how sick it is-But its important to remeber mast cell chemcials move in the blood and activate nerves /mast cells near nerves
Groups of symptoms
I WAS really scared- for while my reactions were getting worse and seemingly more random . Not to mention me wanting to go back to work.
The first things I noticed were groups of symptoms . Like feeling lightheaded and exhuasted after eating.
Or fatigued = pale = can't raise my head from my pillow .
Or Flushed-not burning but swollen .
Or burning face with tingling-whch was active swelling
Or popping ears, voice down and itchy ears.
Or swollowing several times ,coughing and itchy ears.
Or red burning ear with red and swelling across my cheek on one side
or itchy lips, tounge, back pallete
Or itchy inside my throat were I can't get to it
Or itchy face then wheezy and strugging to speak
So I noted these and times .
Over time the symptoms and triggers came together .
I fell into a classic trap - I thought I knew what my"trigger" was and found it in any reaction . Then as i got to my 4th and 5th large reaction I was triggering with none of my supposed trigger present .
i was also ignoring or passing off many symptoms because my"trigger " wasn't present .
Over time I was forced to open my mind 100% to any trigger.
I didnt want to . Mainly because I wanted my condition to obey some rules It had blundered into my life changing many things .I "just" wanted some control .
It doesnt work like that - sorry
If you can keep your mind open then you will be ok .
True allergies should be avioded -END OF .
Tests will show if you are truely allergic -which means your cells are marked with IGE . (see about mast cells )
Only true allergies will show positive on these tests. other triggers can be tested witha small amount -called oral challenge testing .This is done selctively and cuatiously in hospital under supervision .
This should not be carried out at home ,under any circumsatnces .
Most triggers can not be tested - so this takes some detective work .
Lots of details below on ways to work them out
20% of Mast cell patients also have true allergies.This this is in line with the general population .
Those of us with true allergies find they are magnified by our mast cell condition . So caring for these is as important as any other trigger .
In grass pollen season . I am more likley to go off - react
By Continuing to have symptoms you are not doing anything wrong - It just takes time to work out your flavour of mast cell .
When you have symptoms you can use an antihistamine in the moment - which helps control symptoms . (see medications)
If I am going to go to anaphylaxis I will - but if not the meds will stop it
Having my background meds in place is my chemical protection -others see it as a cage to reduce the chaos their condition can cuase and it works .
Mine is a monkey called geoffery another - a gremlin called Frank you must not feed after midnight .
So - what can I eat ? Remember to listen to your body and that we are all individual .
We find that on bad tummy days eating plain foods - I call it white food days - help .Its is easily digestable and keeps blood sugar stable . Keeping your fluids up is most important- see 3rd spacing in symptoms
I know from expereince that ist very easy to decide what you trigger is . But it is very rarely one trigger.-remember the bucket theory . Every reaction will be set off by something .
I have been accused of being obsessed - I wasn't I was looking after myself . For more on others coping see big change .
With information you have here and in my naughty list below - things will slot into place .
Remeber this is the place your avoids list and symptoms make sense your not going mad and things can be done to make you much better
In avoiding foods - remember many have lots of ingredients. So reacting say - Like I did to Pizza and wine - there are many options.
As your avoids increase you will see groups of foods emerging .
On ths page I have endeavoured to cover foods and groups of foods -which are known to cause symptoms -
processed -before frozen or packaged
certain drugs see medications
For my complete foods list - click link .
Insert body text here ...
As you begin working out triggers you will find that sveral foods will be connected with each symptom .
I had many of these .A good expamle Bananas and custard so both went on the list . Over time more thickened foods came on and I learnt about corn flour as a sulphite.
I also knew that bannas were riped with sulphur dioxide
Over time I wandered about bananas . So On agood day i tried a little and was fine .
Then 2 weeks later I ate an overipe one and had an itchy mouth .So now I have bannas but only absolutely fresh from astroe that I know don't artifically ripen them
I worked out other fruits through diary keeping . I also don't eat any overipe fruit.
If you are new to this and havent worked out your triggers yet and are not on any meds -Then you are ripe to go off .
This means you will be having lots of symptoms and triggers will be confussing and feel overwhlming . Thats ok and absolutely normal . As you get on meds and work out triggers you will be less ripe to go off .
Snowballs are one reaction on top of another . Because contents have come from mast cells - also trigger mast cells . So you will feel like you are beng attacked from all sides .
I was shocking-epipen every 3 weeks or less for 3 years .Once my meds were heading the right way ,this helped me see my triggers .
I am now 5 months since my last epipen. I know I will shock again but know my epipens work so concentrate on enjoying my good days and resting on the other days .
I know this sound pessamistic - I will shock - I have had 3 - 4 month breaks and have shocked again .It has made me feel like I am back to square one - but in fact I am not .
I have expereince now and know my body . Trusting myself is huge.
Also I have doctors and support . Please contact me with any questions
But every reaction will have an explaintion .......... in its own time .This is frustatraing beyond beyond -but the answers will come . I reacted to coloured foods -with annetto - didnt wor it out until the other day someone mentioned it on aforum and it twigged.the cloured cheese and smoked fish -both with annetto -and -anneto is made using viniegar and has a sulphite element -It feels so obvius now I know -
But ive been doing a hell of alot of chasing an ever moving ,changing entitiy -which posses -seemingly -NO logic which messes with my brain -then I make a connection -and the logic is there I jsut didnt know what the logic was -BAZINGA
This can be from anything but certain things are more common.
-It doesn't have to be protien as in true allergy
- can be to atiny amount
or dose dependent (how much you have )
or - are you going to react right then dependnat
Triggers are anything which make mast cells split , spilling their contents . We are all individual in our triggers and what symptoms they produce
Food colourings - AZO dyes and Annetto - are treated with acetone / vinigar durung the production process and all containa sulphite element to them . I was sratching my head over coloured low fat cheese and it was the annetto . These are used in medications .See Link for detail .
Caramel colouring is E150 a-d .This also contains sulphites in 2 of the 4 preperations
Bacteria, virus and fungi all activate mast cells by 3 different ways.
- Compliment - bacteria have thier own pathway
- Toll like recpetors on mast cells directly recognising bacteria
- Bacteria eaten by phagocytes - present the bacteria bits on the surface ( to toll like recpetors ) and to t cells activating them .T cells can directly activate mast cells . In the case of virus' -T killer cells .
-if bacteria has been in before antibodies will be presnt and will swing into action immediately as will t memory cells .
The chemicals which cause a fever - directly activate mast cells
By increasing core temperture in the control centre called the hypothalamus . All of these chemicals are released from mast cells .
So any fever inc those in non ifnections such as from autoimmune condtions will activate mast cells .Its an inborn system but in mast cellactivation conditions there is too much of it in the wrong place .
Individuals notice fever in anaphylaxis or close reactions and in locallised reactions-say joints, diarrhoea etc
Heat and cold activate mast cells by stimulating nreves in the skin - This cuases production of crh locally and a signal be sent to the cnetral nerous system were crh is produced and then activates mast cells all over the body by traveling to them .
Chemicals can be stunalted in the skin by crh or substance p release from nerves which activate mast cells close by as mast cells gather round nerve endings .
The mast cell contents released then go on to activate nerves -histamine wheal and flare
The chemicals attract varuos immune cells cuasing inflammation and swelling .
This causes further nerve activation and substance p release which goes to its recpetor and causes pain sensations
Mast cells have oesterogen recpetors .
So oeaterogen can make them activate and spill chemicals . It also cuases increase in production of leucotrines - which affect airways causing asthma sysmptoms but also can produce an anaphylaxis .
There is also a progesterone driven anaphylaxis called catamenial anaphylaxis were the body has made antibodies to the ladies own hormones .
It is noted but reason not yet identified that ladies going through the menopause have increse in allergy sysmptoms particularly asthma .
In pregenacy the picture can be mixed . Some ladies do very well some dont all the way through .Others have issues as times of hormone shift - so 12-14 weeks , 36 weeks onwards and 6 weeks postartum and when breastfeeding ends . The reasons for this are not clear .
The resumption of oesterogen
In real terms I had to get rid of all products and start from nothing .
I reacted to all vinigars , alcohol and most scents .
"Natural products " will still contain potential triggers . For me corn oil or any corn products are an issue .
There are many natural sites which rocommend vinigar based products - In my world and those reacting to high histamine , sulphites , slaicilates will all react to vinigar .
On day 3 after a reaction I feel better and can feel compelled to clean . Badddd idea as even upsetting dust will set me off .Personally I only use fairy washing up liquid and tescos value pine detergent for cleaning .
A window cleaner came to the door smelling of windowlene and i instantly flushed itched and my plams went sweaty . I instantly knew , moved away from him and had some antihistamines . It took 20 mins to settle down
So all this advice -what do you do .
The forums can be scary full of stories with no real way fo managing reactions when they happen .
So here is my advice -from my personal expereince .
Some of us leak mast cell chemicals so dont get life threatingly ill but have symptoms all the time , some of us do regualrly , and some do both .
In the moment -
- note your symptoms
- if you have some take antihistamines and lie down
- if you feel unwell or its progressing quickly -
call for help - ring 999/911 and say anaphylaxis
-Breathing problems - were you cant speak or throat is closing due to swelling of mouth , tounge or throat
- Dizzy feeling like you are going to pass out .
These are absolute no question call for help .If you have an epipen use it NOW - for lots more info go to anaphylaxis page -
or symptoms in any 2 other systems
- Diarrhoea or vomiting
- Fast heart
- Swelling in skin anywere esp down below ,eyes lips nose
- Flushing red with rashes -hives or little dots ,
- Intense itching
- Impending sense of doom
If you feel like you need an epipen - do it x Ananaphylaxis cnat be predicted or trusted - so follow your instinct .
EPIPENs work, they do what they say they will do ;-) Fix things so you dont die x and so you can get medical help x
Now what if the symptoms dont get serious to need an ambulance and epipens ?
-You will begin to notice early symptoms -which can be your cue to have antihistamine .
-This in reactions that can be stopped - will stop it x
- You may never have an epipen level reaction .
- You need to trust your instinct .
- Rest .
Further down this page I discuss keeping a journal to document reactions .This will help you work out your symptoms and prompt treatment and begin avioding known triggers .