Histamine intolerance Diagnosis

Hello everyone,

My name is Nele, I’m 30 years and live in Belgium. On december 3rd 2009 I was diagnosed histamine intolerant. My story prior to the diagnosis contains more downs then ups tho.

As a child, I had excema. I was in treatement with a dermatologist who blamed my problem on a thick skin. Later, in my early teens, I couldn’t digest shellfish anymore. They made me horribly sick, and I started avoiding them. When I went on to university, I found that alcohol gave me severe respiratory issues, sometimes so bad that I would pass out. I was also diagnosed ADHD around that time. I found myself having a runny nose most of the time, always carrying handkerchiefs around with me. I suffered from migraines a lot, and had constant aching joints and muscles. Whenever I would visit a doctor, and explain my symptoms they would simply shrug it off, or find it unnecesary to do further research.

Last year I took massage classes, and found that everytime I was being massaged I got a stuffed nose, and had issues breathing. I was too afraid to mention this to my teacher, all too often had doctors told me my symptoms were in between my ears.  I began my search.  I found out that when someone gives you a thorough deep massage, you break open mastcells causing them to release histamine into your bloodstream. I took my suspicion up to my doctor, and he boldly told me not to put stuff into my head. My reactions continued, and I was getting a stuffed nose, and issues breathing after my meals. I took it up with the doctor again, he finally drew some blood for allergy tests. Off course, all came back clear and ‘I should stop putting stuff in my head’. I was getting sicker and sicker, and decided to go see another doctor. She listened to my symptoms and immediately referred me to the university hospital nearby, where they have an Allergy Department.  So on december 3rd I undergo the scratchtest, and was diagnosed histamine intolerance.

It was a relief and a burden at the same time. So I wasn’t putting stuff in my head! But so many questions.. All the allergist had done was give me a list titled ‘pseudo – allergy diet’  and advised me to stay away from red wine, cheese, tomatoes, preservatives, colorants and flavor enhancers. Trying to follow the diet I quickly experienced there was much more I reacted too. I scratched potatoes from my diet, meat, egss and much more. I contacted my allergist and he wanted to see me again. This time he asked me to bring with me all the foods I reacted too, so we could do a scratchtest with all the ingredients. Full of hope I went again, with a basked full of ingredients, but only to hear that there was no time to test me. The allergist couldn’t answer a single question I had for him, and disregarded some of my stress-related symptoms as hyperventilation. It was the worst hospital visit ever, I cried my heart out.

I felt like I was all alone in the world, and noone understood histamine intolerance, or didn’t want to understand it.  Thanks to a wonderful friend who’s histamine intolerant too, I hung in there. She helped me so much, mostly just by being there. I can not thank her enough for it.

I’m meeting a food expert specialised in histamine intolerance in June. I do not keep my hopes up to high, since I have been disappointed all too often.

My symptoms vary a lot: allergic rhinitis and sinusitis, aching joints and muscles, constant low blood pressure, tiredness, rash, chestpains… My diet is very small now, as I personally can’t have things like potatoes, onions, leek, garlic, cauliflower, brocolli, and type of beans, any type of nuts or seeds, no yeast, no milk, ..and the list goes on.

I want to keep this blog for people like me. People who feel they have to climb a mountain every day again and again, and they have to climb it alone. People who have had bad experience with hospitals, and doctors who do not understand what an impact histamine intolerance has on your life.

You’re not alone. Even tho most of us don’t even live close by eachother, you’re not alone. I will write my experiences with histamine intolerances down, how I experience it, how it affects my social life, etc.. And hopefully you too will find the strength to keep going. Because you’re not alone!

‘A healthy person can have over a 1000 wishes, while a sick person only has one…’

with love,

Nele