Tell us a bit about yourself!
I’m Hannah, a 27-year-old from Nuremberg, Germany. I recently graduated with my degree in Physics. I enjoy hiking and climbing, horseback riding, and everything animal-related. I’m a creative person and enjoy drawing and cooking. I’ve always loved traveling and trying local foods and wines.
When did you have your first allergic reaction?
In July 2009 I suffered from my first anaphylactic reaction, caused by a mango lassi. Till then, I’d never had any symptoms. The following summer was a disaster. While I was at summer school, the situation worsened drastically. I had severe reactions and asthma attacks every day, eventually only eating baby food (because it has so few ingredients).
I felt totally lost. Many of my reactions seemed to come from nothing or after eating something that had been fine just a day earlier. I also had severe asthma attacks and circulation problems without any visible cause. In October 2009 I took sick leave and went to live at the seaside until Christmas.
Many of my reactions seemed to come from nothing or after eating something that had been fine just a day earlier. I also had severe asthma attacks and circulation problems without any visible cause.In October 2009 I took sick leave and went to live at the seaside until Christmas.
Since then, you’ve developed many more allergies. At this point, what are you allergic to?
In 2009, I contacted a specialized center for allergology to find out what I was allergic to. The list has expanded a lot since then and is still expanding. In fact, the list of things I can eat without problems is much shorter than the list of things I can’t eat.
I have a lot of “rare food allergies” like cucumber, asparagus, grapes, several tropical fruits, and vegetables, but I also have pretty much all the “common food allergies” and various pollen, fragrance components allergies. My strongest reaction to alternaria alternata, a mold growing on plant rests and wet ground. My allergies are IgE-mediated
and occur immediately after contact.
What sort of treatments have you tried?
Traditional asthma medications haven’t worked. In December 2009 I had started taking omalizumab, a monoclonal antibody, which I quit four years later, because of severe side effects. Eventually, I also had to quit my hyposensibilisation because of its negative effects.
I’m open to trying other therapies. I’ve tried a few, like “bioenergetic methods” and fasting, talked to some naturopaths about their point of view – but nothing was convincing or helping me. I will try hypnosis and am getting informed about some other options. Personally, I cannot recommend any of the “standard” or “alternative” treatments I tried. I’m still searching for something which will improve my situation.
Due to my many anaphylactic reactions, I’ve suffered from panic attacks so I’ve been working on stress-reduction and controlling my panic. So far, I haven’t taken any psychopharmaceuticals or worked with a psychologist but I do to encourage other people to ask for professional support if they want it.
Nutritional therapies don’t really work in my situation. I tried a rice diet twice, starting with rice and adding one food after another. I would recommend it to someone who is just in a cascade of developing new food allergies, as it gives your immune system a “break” from many potential food allergens, and will make you feel more secure about what you can eat.
I’ve always tried to include as many anti-inflammatory foods in my diet as possible, and I’ve been drinking a lot of mangosteen pericarp tea, as some papers suggest that it lowers IgE-levels, which do not in every case go along with allergic reactions, but in my case they do.
How have your allergies affected the other areas of your life?
My allergies have changed my personal life; I feel like they force me to be someone I’m not. I’ve always been a gourmet and a traveler, and these activities have been severely limited by my food and mold allergy.
I have to choose my vacation destinations according to the climate (I have developed a serious interest in climatic conditions around the world), food availability and hospital proximity. I’ve learned to appreciate mountain areas even more and I’m now a serious hiker. I’ve had to learn to trust my body every time I developed a new allergy.
I’ve realized life is short and I’ve resolved a lot of issues with people in my life. I’ve learned to make all kinds of cosmetics products. Finally, I met my partner while suffering from an asthma attack on a train. I guess if I wouldn’t have had that attack we wouldn’t have met!
Of course, my allergies have a great impact on my professional life. My problems and medication made it very difficult for me to concentrate on my studies. Working part-time in the energy business, I was very lucky with my boss who let me work remotely and only come in for project meetings. The plants around the office, my co-workers’ perfume or peppermint tea could all cause reactions.
I need a work schedule that can adapt to my body’s schedule and I need to spend the critical summer months in another climate. This is possible with a flexible job, but they’re difficult to find; working from home isn’t a widely accepted standard here in Germany.
I’d love to have a job at an international level, but that’s hardly realistic with my current health. There are many places I simply shouldn’t go to, and staying in a hotel room without a kitchen for more than one night is hard.
With my personal history, my interest in allergology has grown very much. By now, I’ve completed two professional allergology courses and am working on building my business this field.
I know a lot of people don’t take allergies seriously, they assume the sufferer is ‘blowing things out of proportion” or seeking attention. How have you dealt with that?
If someone says “I am allergic to …” and then eats it in the same moment, I just think: “You have no idea.”Most people underestimate the seriousness of the situation if they don’t have personal experience with it. It’s very difficult to raise awareness of “invisible” problems like this. For example, my throat will start swelling if someone peels an orange in the same train compartment.
Also, many physicians seem to know rather little about it. Based on my experience, I’d recommend going to a specialized allergologist.
Going out to eat is a struggle, it feels like a lot of restaurants don’t take food allergies seriously. I ate out about once a week until Winter 2014, but I’ve pretty much given up now. I usually ordered custom dishes, using ingredients which I see on the menu. I tried to be very clear about what exactly I wanted on my plate. I’d tell them “No herbs, no spices, no “decoration” – just salt, please!”
But most of the restaurants used spices, herbs or other things. I had to return so many dishes because they added a tiny sprinkling of “decorative herbs.”
What advice would you give to others who are struggling with a serious allergy?
– Find out what you are allergic to. Have a prick test or even get a molecular diagnosis to find out more
– if it’s heat-stable allergens like in my case.
– Find a physician who listens to you and who you trust. If they’re not listening to you, change your physician.
– Be patient. Your immune system is a flexible system and allergies can change with time. I can now eat mangos again – after five years (that’s the only food this has happened with, but never mind).
– Avoid the things you’re allergic to – to avoid health problems, of course, but also because avoiding an allergen for a longer time might help your body to one day tolerate more of it again.
– If you have several food allergies, write a list of what you can eat. Family members and friends are always happy to have such a list so they can cook for you. Make it very clear that there must be nothing else in your food.
– Explain your allergies and symptoms to the people in your life. Show them your emergency medication and brief them about what you need them to do in a real emergency.
– Always carry your emergency medication with you. If you don’t have it yet: get it.
– Trust your gut – especially when you’ve had a life-threatening reaction. If you receive a meal and your gut says “no” or you smell/see traces of something: don’t eat it. Never be ashamed of returning your plate at a restaurant or in a private house.
– Learn about your reactions. How fast did it come after contact with the allergen? Which symptoms occurred in which order? How long did it take you to get better with medication? This can help you to better judge the severity of a reaction and to distinguish between what is a real reaction and your panic.
– It is okay to have panic attacks. If you work on it, you will be able to handle them and learn to stay calmer.
– Learn about your body. You cannot fight it and win. You will have to make a compromise. If you listen to it carefully, you can find out what it wants – and make the best out of the situation.
Thank you so much for sharing your story, Hannah. Have any of you guys struggled with serious allergies? Do you have any (polite!) questions for her?
P.S. True Story: I’m legally blind