Genny Masterman - What HIT me? Living with Histamine Intolerance: A guide to diagnosis and management of HIT - A patient’s point of view

.

2nd Edition

2013 Genny Masterman - All rights reserved

eBook ISBN: 978-1-63003-162-6

No part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means electronic, mechanical or otherwise, without permission of the publisher of this book.

Disclaimer

All material in this book is provided for your information only and may not be construed as medical advice or instruction. No action or inaction should be taken based solely on the contents of this information; instead, readers should consult appropriate health professionals on any matter relating to their health and well-being.

The information and opinions expressed here are believed to be accurate, based on the best judgement available to the author, and readers who fail to consult with appropriate health authorities assume the risk of any injuries. In addition, the information and opinions expressed here do not necessarily reflect the views of every contributor to the book. The author acknowledges occasional differences in opinion and welcomes the exchange of different viewpoints. The publisher is not responsible for errors or omissions.

Readers interested in sending their suggestions, ideas or complaints can do so via email at info@histamineintolerance.org.uk. This book is part of the Histamine Intolerance Awareness project, supported by a growing number of volunteers.

Layout: panthera.cc

.

WHAT IS FOOD TO ONE MAY BE FIERCE POISON TO OTHERS.

Lucretius

THE DOSE MAKES THE POISON.

Paracelsus

.

CONTENT

.

I owe a lot of thanks to a lot people by now and if I have left anyone out I profusely apologise in advance. Some of you have been extremely patient with me and also kind. Mum, what would I be without you! Have a look at the fridge magnet. You are the best of all mums in the entire universe. Special thanks also to my family, especially Rene, Susi & Merlin, Marcel & Dorry, Marga, webmaster James, Barbara & Dad, Paul and Fran, to name but a few.

Many, many thanks for your individual ways of supporting me to Leo Mazakarini, who was my mentor for actually writing a book and without whom I could never have done this. Prim. Univ. Doz. Dr. A. Thomas Endler, Univ. Doz. Prim. DI. DDr. Hans Schn, Prof. Thomas Bieber, Ph.D. Natalija Novak and Dr Ralph Bauer at the University of Bonn, Ing. Mag. Dr. Fabian Kanz at the Medical University of Vienna, Dr Ken Fleming, Dr. Hassan Abdulrazzak, Mag Helmuth Schmutz, Angelika Widhalm, President of patient support group FruLak&Co in Vienna and her team, Dr Susanne Feigl, Pamela T., Sabine Geyr, Sylvia Obenauer, Michael Zechmann and the team of the Food Intolerance Network (FIN), Allergy UKs Muriel Simmons, and Lindsey Mc Manus as well as John Collard, Ronke Shona the incredibly supportive food scientist who is one of the kindest people I have ever met and has endured many hours of virulent discussion with me, Andrea Knig of the Mastocytosis Initiative and dietician Cornelia Boboschewski-Sos. Further there are butchers Wally Dutton & his crew at Duttons Butchers, Keith at Rose Farm, Kay and all involved at Winsors Farm shop, the wonderful Diana Mather, Rex Bloomstein, Joe Barth, Mike Wadding, Jonathan & Selina, Sarah Green, Mark Sangster, the many Pauls around me, Steven R., Hywel W., Jon A., Charles O. and the Northern Advantage Team, Leigh Wharton, Dan Hartenstein (you rock, mate), Susan & Helmut Katzmann, Andi Link, Renate Wiener, Claudia Dohr-Curran, Sybille Lindenbauer, Eva Kramberger and my closest friends Gerald Wiener and Andi Komenda.

Last but not least there all the members of the Facebook group, the supporters of the Facebook page, those who helped set up and run the histamineintolerance.org.uk website and talked me into writing a blog, the patients, who have written to me via the histamineintolerance.org.uk website and those who have signed the petition, all of whom shall remain anonymous. This is for you, written with the best of intentions.

.

I shall best begin by telling my story and how I came to the idea of writing this book in the hope of giving others, who might be in the same situation, a chance of regaining some quality in their lives.

It was one of the most beautiful summers that I had ever experienced in the city of Vienna. This is where I grew up and go back to, to visit my friends and my father. I have lived there most of my life although my family originally comes from the UK and The Netherlands. It needs to be said that I am normally a very positive person, full of energy, who shrugs off minor ailments. So although some of this chapter might read like one long moan thats not how I am. But I have to spell it out in order for you to understand it so here goes.

I had been feeling a little queasy, to say the least, for quite a while. Only a few weeks earlier, while still in the UK, I had a problem with one of my teeth, an infection, and was given an antibiotic later in my voyage of discovery I was to learn that this antibiotic contains one of the very substances I should not have taken in combination with all my other health issues. The barrel was full already and this medication caused the barrel to overflow and sparked off a very severe reaction.

A year earlier I had started feeling increasingly tired and occasionally suffered from the trots, to put it politely. In addition I was increasingly plagued by cramps in my abdomen. And since this was not happening on a regular basis I played it all down, as one does. My psoriasis, which I have had ever since I can think, started to play up really badly. The previous year I was plagued by a bout of what may have been urticaria it was nasty whatever it was - which went away again after a few months. No cream I smeared on the red patches seemed to help. The irritating circles just mysteriously disappeared from one week to the next. At the time I did not know what it was, and only during my research during the writing of this book I have found out what it actually could have been. For several years my legs were swelling up in summer. My eyes were full of gunge in the morning; I blamed the contacts but still kept wearing them out of pure vanity. Before midday I could set the clock by regular sneezing fits after breakfast. I blamed some mystery plants which, according to this particular theory of mine, would have had to release pollen all year round. I also developed a tremor in my early twenties, and was often asked why I was so nervous that I was shaking - even when I felt perfectly calm. When I got annoyed about it I started shaking even more. It seemed like a lose-lose situation, especially when my head felt like it was going to bob off my shoulders when the shake would take over the rest of my body, especially in exam and stress situations. The list of symptoms and occasions is long, and I always had some self-diagnosable explanation for everything.

My speculation was that possibly I just needed some rest because I might have been too stressed, and the pains were because I might be getting my period, although it often didnt start, and the trots because I might have eaten something that had gone bad because maybe I had been sold something that was well past its use-by date, or similar. Are you confused? I was!

I guess I was not so wrong with the whole out of date idea in a way, but that is as far as I got. Now I know that cured meats and mature cheeses, some of my favourite former foods contain high levels of histamine, not because they have gone bad but due to the way they are matured. I am now continuing to reintroduce them carefully and one by one, in order to test my personal threshold.

So, in Vienna in the midst of all that lovely warmth, while spending the evenings next to open French windows with friends, drinking red wine and eating lovely dishes, mostly with tomatoes in them, and happily working away on a project for a client by day, it all went pear-shaped. The cramps got worse, I got desperately tired. On top of that I felt sick, or rather bloated, in my abdomen. Ah, its a bug! I thought. Going to the doctor did not cross my mind. I felt I had no time for that anyway, as usual. I held out until about the fourth week, when I decided that it might be something more serious than just a bug after all and that maybe I should listen to my friends and go to the doctor.