Triggers

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 .

complemant

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

 

Food challenges -NO POINT , once a trigger always a trigger

Finding alternatives

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.  

 

Ingested  

 

You will tend to have had a certain amount before the reaction begins- 2-3 mouthfuls -which leads to more serious symptoms .

 

Certain foods -

Preservatives

Food colours

Spices

Alochol

Vinegar's-Malt, spirit, balsamic , white,wine, red wine , Rice,cider

Sulphites

Coloring & flavoring in medications

MSG

salicilates

 

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

Inhaled

 

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

- Chlorine

 

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

Environmental triggers

 

Mold -

- 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

 

Environmental toxins

 

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 .

Internal triggers

 

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.

 

Fever

 

Bacteria or fungi

 

Stress

 

Hormones

 

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

Toothpaste-

Sensodyne pronamel

or

Sodium bicarbonate

+

Soft toothbrush, even childrens toothbrush-lots of mast cells in the mouth and gums

 

Shower and body wash - Naked range

Cowshed

Body shop soap-if you are ok with the colours ,which are natural

Honey shampoo

 

Moisteurisers

KY jelly -alochol and geltine free

Vaseline

 

Bath bubbles

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 .

 

 

 

Cleaning UP - Personal care products

AVOID .AVOID ,AVOID

Sulphites  ...

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

Sausages

Fruit squash

Cooking sauces - white wine sauces

 

 Malt vinegar,

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

 

 

Gravies

 

Corn products - oil , corn starch ,

 

Horseradish , mint , apple sauce, mustard,

 

Jams and marmalades

 

Mollases

 

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          

desiccated coconut

 

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

Variably labeled

 

Some fresh fish for colour  - salmon

Fishmongers should have sign up

Anything can be a Trigger - Your list of avoids make sense here :-) Your not going mad

All hard/matured cheeses

Yougarts

Buttermilk

 

some standard milk

Some normal milk

Pollen, dustmites and inhaled allergens (and triggers)

Tips

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

 

Clean up - envirionment

350px-Basic_HPA_Axis

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@

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

 

Endo-Physio skin

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:

 

carbon (soot);

nitrogen;

water;

carbon monoxide;

aldehydes;

nitrogen dioxide;

sulphur dioxide;

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

plastics ,

airfresheners ,

cigerette smoke

Car fumes

 

c45alco

Food  type high in Histamine

Food NOT allowed

Milk and dairy

 

Breads and cereals

Products made with:

 

Anise

Artificial colors

Artificial flavors

Bleached flour

Cheese

Chocolate

Cinnamon

Cloves

Cocoa

Margarine

Preservatives

Restricted fruits

Some jams, jellies

Pasta and rice

All packaged rice and pasta meals

Vegetables

Eggplant /aubergine

Pumpkin

fermented /picked products

Sauerkraut ,egg , gerkins

Spinach

Tomato and all tomato products

fruit

Apricot

Cherry

Cranberry

Currant

Date

Loganberry

Nectarine

Orange

Papaya (pawpaw)

Peach

Pineapple

Prunes

Plums

Raisins

Raspberries

Strawberries

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

Eggs

All prepared with restricted ingredients

 

Raw egg white (as in some eggnog, hollandaise sauce, milkshake)

Legumes

SOY beans in any form - soy leicten-MIlk , TOFU , can be in vegetable oils

Red beans

http://www.urticaria.thunderworksinc.com/pages/lowhistamine.htm#Urticariadiet

Fats and oils

All fats and oils with color and/or preservatives

Hydrolyzed lecithin

 

Margarine

Prepared salad dressings with restricted ingredients

 

Prepared gravies -crossing with cornflour sulphites

Spices and herbs

Anise

Cinnamon

Cloves

Curry powder

Hot paprika

Nutmeg

Seasoning packets with restricted ingredients

 

Rosemary

Any dreid herbs 9cross with sulphites)

Sweeteners

Flavored syrups

Prepared desert fillings

Prepared icings, frostings

 

Spreads with restricted ingredients

 

cake decorations

Confectionary

Commercial candies

 

Miscellaneous All chocolate and cocoa

Flavored gelatin

Mincemeat

Vinigars -ALL

Prepared relishes and olives

Soy sauce

Miso

Commercial ketchup

Gherkin pickles

Most commercial salad dressing

Tomato ketchup

 

Beverages

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 tea

All drinks with "flavor" or "spices"

All fermented drinks- Beer

Wine

Cider

All other

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.

 

http://www.allergy.org.au/patients/product-allergy/sulfite-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

 

 

 

Sulfur dioxide

Sulphiting agents

Sulphurous acid

 

 

Symptoms - can be minor but can also be more serious to major

- Itching

- Swelling

- Shaking

- Burning

- Diarrhoea /vomiting

- Fast heart

Anaphylaxis

 

BEWARE -I have referenced specific websites deliberately . Some information on sulphites is wholly inadequate or dangerous

Sulphite symptoms and background

http://www.allergyuk.org/sulphites-and-airway-symptoms/sulphites-and-airway-symptoms http://www.hc-sc.gc.ca/fn-an/securit/allerg/fa-aa/allergen_sulphites-sulfites-eng.php

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

 

 

Download -

Triggers for forum

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 )  

No obvious trigger

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

This feels very scary xxx

 

Try to remember - if you feel unwell call 999 /911(USA ) and use your epipen if you have one .

 

Sometimes you won't know the trigger in the moment or ever

 

Some tips on trigger finding

---------------->

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 .

Connected Foods and allergens

(as triggers)

People sensitized to (birch)  pollen may have OAS symptoms when they eat the following foods (in order of frequency):

 

Birch Pollen allergy

Apple (80%)

Hazelnut (59%)

Nectarine/peach (51%)

Kiwi (48%)

Walnut (41%)

Carrot (35%)

Apricot (33%)

Cherry (32%)

Pear (32%)

Almond (32%)

Peanut (24%)

Plum (24%)

Tomato (21%)

Potato (19%)

Celery (16%)

Soybean (14%)

 

Grass pollen allergies are associated with sensitivities to:

Melon

Tomato

Orange

Cherry

 

Ragweed allergies are associated with sensitivities to:

Melon

Chamomile

Honey

Banana

Sunflower seeds

Cucumber

Zucchini /courgette

 

Mugwort allergies are associated with sensitivities to:

Celery

Carrot

Spices

Melon

Apple

Hazelnut

Chestnut

polcalendar pollen-season-maps_lrg cross reactions

 

Cumulalitive Triggers

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 .

Low Histamine Diet

Places these triggers hide

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

Dough improver

Dumplings in pre prepared meals

Cakes with soy leicthin  (emulsifier )

Packets of cake mix with ingredients preserved

Aniese-aniseed

 

 

Margarine containing soy , rape seed oil ,corn oil

Sulphites common -often unlabelled

Spinich , tomato fillings , cooked meat fillings in fresh pasta

Egg powder

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

Trifles

Jelly

 

Watch dried fruits as are preserved even in health food shops

Any overripe fruit even permitted

 

 

 

 

Pinapple gives delayed symptoms in some .

Preserved

 

 

 

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

E150a,b,c,d, and

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

Popudomas

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

Remember

we are all

individual

 

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

clock2am

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 .

Supermarkets and exposing yourself to potential triggers

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

Diary keeping and working out your Triggers

TIPs

- Your list of no's or naughty list will continue to grow -Then come to a natural halt .

- Consider things environmental -Like pollens and the heat of the day

-Consider internal triggers especially stress, hormones -esp if you have been told you have "panic attacks ".

- Don't discount any symptoms esp-if you have had them for a long time -you think they are just you

- Symptoms that have a diagnosis -like IBS , migranies , chronic fatigue syndrome .

-Anxiety -when not feeling any reason for it or situations which have been "diagnosed" as panic attacks

-Consider random things -like feeling like a cold is coming-grodgy throat and bunged up nose which never becomes a cold

 

-Include -those foods you really love- ignoring the fact they are triggers won't make it not a trigger.

 

-if you know its bothering you,it is.

Doctors may call them intolerences or sensitiities or pseudoallergies  

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:

Dairy

Eggs

Fish

Peanuts

Tree nuts (walnuts, almonds, cashews, pecans, etc)

Sesame

Shellfish and other seafood

Soy

Wheat

Gluten – a protein commonly found in wheat, but also in barley, rye, and some other grains.

Sulphites

 

Top 20 food allergies with delayed reactions

 

Cow’s Milk

Wheat gluten (gliadin)

Gluten (in wheat, oats, rye and barley)

Yeast

Egg Whites

Cashew nuts

Egg Yolk

Garlic

Soya beans

Brazil nuts

Almonds

Corn

Hazelnuts

Oats

Lentils

Kiwi fruit

chilli peppers

Sesame seeds

Sunflower seeds

Peanuts

 

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 Tesco's

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

and

ultimately

I hold responsibity for everything that passes my lips .

 

Allowing others control is high risk for accidents

Some more info /reminders

DIARY jmp051212l

Link is to my Naughty list as an example  and how it built up

Skin

Top Layer

 

EPIDERMIS

 

 

 

Next layer

Has mast cells

https://benadryl.co.uk/social-pollen-count

Eating OUT

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 .

 

Will help

 

But be prepared - even if you have never shocked /had anaphylaxis

 

'

emergency guide diary making

Overseas

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 .

 

Foods -

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 )

 

Medicines

 

Benadryl UK -is ceterizine

 

Zyrtec -is ceterizine in USA and UK

 

Benadryl USA is diphenhydramine

 

Diphenhydramine UK is NYTOL -over the counter sleep aid

http://www.yellowcross.co.uk/ebuttonz/medicaltranslationcards/index.shtml

Carrying EPIPENS

 

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 .

http://www.anaphylaxis.org.uk/living-with-anaphylaxis/travel

A TRUELY Open Mind

Good Time of year /bad time of Year

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 .

 

 

 

Seasons for pollens

USA

Seasons for Pollens UK

TRUE Allergies -IGE positive  and cross reactions

Pollen counter

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 .

Remember  we are all  individual

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

Moving forward -Cleaning up foods

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 -

High histamine

Sulphites

Salicilates

Alochol

Vinegars

Fermented

Aged

processed -before frozen or packaged

Dried

Malt

certain drugs see medications

For my complete foods list - click link .

Here is my naughty listsite 4 Here is my naughty listsite 4

Insert body text here ...

He learns new tricks ..................

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.

Building patterns and caught up foods

Snowballs and RIPE TO GO OFF

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

Working out triggers and symptoms can feel like Leonard trying to catch Sheldon in the ball pit  -Bazinga

http://www.youtube.com/watch?v=skQGve3XksU

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

Evoloving

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

Link button

Known Triggers -with explaintions

and

research support for mast cell activation

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 .

Exercise

The chemicals which cause a fever - directly activate mast cells

prostoglandins

Il1

TNFalpha

histamine .

 

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

Cleaning products

Managing reactions

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

- so

-Breathing problems  - were you cant speak or throat is closing due to swelling of mouth , tounge or throat

or

- 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 .