woensdag 26 januari 2011

my diet for: Wheat dependent exercise induced anaphylaxis (WDEIA)


I'm an allergic patient. I have to live on a strict diet.
The important thing is: I should eat no wheat, no rye, no oats, no barley, no spelt or kamut. The tolerance is lower than in the more common gluten-free diet for coeliac disease! The standard Gluten-Free food is absolutely not appropriate for me.
All I eat or drink should be wheat-free and it is of vital importantance that food and drinks should not even contain any traces of wheat. So no bread, biscuits, crackers, cookies, cakes, pastry, thickening agents, pastas, breadcrumbs...  
Fortunately, there are gluten-free products, which are also wheat free.

Moreover the diet should not contain: E621 (= monosodium glutamate or Vetsin) or E210 to E219 (benzoic acid and benzoates), or alcohol (ethanol).
It is important to know that wheat can be hidden in ready-made or processed food products like stock cubes and soups, starch, bulgur, bran, couscous, farina, gluten, protein meal, fried meat and vegetables, coffee and cocoa-drinks, surimi, couscous, gravy, ice cream, processed meat (like sausages, hamburgers, hot dogs), milk shakes, herbs and spices like pepper, candy, chocolate bars, salad dressings, soy sauce, ketchup, mustard and other sauces.    
When preparing a meal it is best to use pure products: potatoes, rice, corn/maize, buckwheat, millet, all kinds of vegetables, fruits, nuts, meat and fish (No ready-made or processed! No breadcrumbs!).
The cook should always check the ingredients statement and/or the allergy information. Fortunately, according to legislation (the Labeling Directive of the EU and list of Codex Alimentarius Commission for the compulsory labelling of packaged food) all products containing wheat or wheat-derived ingredients must be labelled.

But fortunately my experience is that nowadays there are many dietary products to be bought, specially made wheat free.

What could you serve me:
- The breakfast includes muesli based on corn/maize flakes, fresh fruit, yogurt, (fresh) fruit juices. Standard breakfast cereals are not appropriate.
- For lunch: buckwheat bread or corn/maize bread, cheese, milk, fruit.
- Dinner seems to be the easiest meal to prepare. But the danger is the additives to decorate the food like breadcrumbs or sauces with hidden traces of wheat. It definitely asks special attention of the cook.
I always have a small amount of appropriate food with me, just in case.
Concluding:
I realize that it is ultimately a matter of trust in the cooperation of the kitchen staff and the information given by the waiters. It certainly is of vital importantance to inform me if anything went wrong (contamination by unfortunate double use of knives, spoons, pans, plates, cutting boards, etc.). That's too bad and such procedures should be avoided, but it's better for me to know in order to calculate my risks of anaphylactic shock, which is a serious threat and can even end in death.
Please ask me for advice and give information: make me responsible for my own health.

I always carry medication with me, just in case.
You should realize that if I need urgent medical care: transportation to a hospital intensive care unit will be necessary in most situations.
But it's been long since I've had a serious attack, due to the careful way of preparing my meals. I would not want to experience it again, and neither would you. Therefore I seriously ask you: let us work on prevention.

Thanks in advance for your cooperation.

More information about food: http://www.food-info.net/


Note: I am interested in contact with other patients WDEIA! 
Please comment or email:   hbotw2007 AT gmail.com

6 opmerkingen:

nikolskoye zei

Best heftig, Tom. Als je weer 'ns in Groningen bent, zullen we van te voren met jou het menu samenstellen.

Groet, Lucie

Michael Pantlin zei

Tom,
This is a really serious allergy!
It sounds as if even a tiny trace of wheat can cause you to need go straight to Intensive Care. Is that correct.
If you were to eat wheat without noticind, what would the symptoms be?

Sanne zei

Jeetje Tom, ben je inmiddels gewend om glutenvrij (en meer) te koken? En voel je je nu ook stukken beter?

Goed dat je je vrienden en netwerk zo informeert, dan kan iedereen er vooraf rekening mee houden.

groetjes, Sanne

Christiane Krogh zei

Hi Tom,

I have WDEIA. I am 44 years old and developed it around 2005 (seemed like it 'build up' in the years prior to the anaphylaxis). I've had anaphylaxis twice because I didn't have a clue what it was. Last time saved by the Epi-pen. No doctors knew anything and practically gace up. I traced down a Japanese scientist and he led me to a doctor in a Danish hospital who just started to hear about it. Today I'm fine (I have turned the events into a naturally glutenfree bakery!) but it has been quite a strange journey. Wish you all the best! Christiane

Tom Weeber zei

hello Cristiane

I worked in a hospital about twenty years ago..Then I heard about "allergic to running" (Search the Web for "allergic to running!").
Unluckily I also got two violent attacks during a running workout.
I chose an extreme diet, not easy, but insisted: completely glutenfree.
Keep hope: after three and a half years, my allergies are no longer detectable (biochemical, omega-5-gliadin) and also under heavy load (lots of eating gluten and extreme effort) there is no response.
According to two professors (one of them the best allergist in the Netherlands), this is possible in principle.
Thanks for your comment!

Celine Hodiamont - Sligchers zei

Hallo Tom,

Sinds dat ik weet dat ik WDEIA heb, ben ik zelf een blog en FB-pagina gestart en op zoek naar lotgenoten, die ik tot op heden nog niet had kunnen vinden.

Ik lees dat jij dus een aantal jaar geheel tarwe-vrij hebt gegeten en inmiddels niet meer op de omega-5-gliadine reageert?

Ik zou graag informatie en ervaringen willen uitwisselen. Ik heb vandaag na heel lange tijd weer een reactie gehad. In ieder geval een bevestiging dat ik het nog heb.

Celine