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
Just wanted to thank you, Hannah, for sharing your story. I find the reference to IgE fascinating – I hadn’t come across that before. I am allergic to dairy and egg – have instant (but not serious, just v uncomfortable) reactions when I eat those. But I also have chronic urticaria, seemingly triggered by heat – the cause of which I cannot fathom. I share your frustration (also a foodie, and lover of new experierences) and thank you for making it clear that allergies are serious, not some fad by a picky person.
Hi Rachel. Thanks so much for your comment. There are different types of allergies, immediate and delayed ones. IgE-mediated allergies are the typical immediate food allergies, but every allergologist should be able to determine which type(s) of allergy you have (and tell you about it). Interestingly there are people who have very high IgE-levels and no allergy symptoms. I think the function of these antibodies is not completely clear, but it is known they’re acting against “large” things that need to be defeated, like parasites or pollen. Also, “not so serious” but “just uncomfortable” symptoms are a burden to the one suffering from it. Egg and dairy are also some of the ingredients that can be easily hidden and might be used unintentionally while cooking. I can imagine it’s especially difficult in restaurants. I hope you’ll find a way to get better soon.
All the best, H
Thank you for sharing your story Hannah. At age 35 and after having lived on an orchard for many years, I’ve suddenly become allergic to apples (I react to organic ones too, so I’m guessing it’s not the sprays). I’d like to challenge myself to see if it’s just the raw fruit or if I can tolerate juices or cooked fruit but I’m going to wait til I’m in my doctors office just in case I do go into full anaphylaxis!
Hi Michelle. I hope you can have the cooked apples and enjoy your apple juice in the future!
I have always tested different types of fruit (different sorts, organic vs non-organic) when I was suspecting it might be the specific sort or even pesticide. I hope your allergies will get better. Allergic reactions to apples can be a typical cross-reaction with Bet v 1 allergen (main allergen of white birch), you should check that out because in this case you might react on several types of food. Your allergologist should be able to find out. I wish you good luck and all the best ***
What an eye-opening article, Hannah. Thank you for sharing such a personal, challenging journey. My own is thyroid disfunction. Like you, taking an analytical approach to understanding and then navigating its trials has helped me tremendously. Accepting any chronic health issue as part of who we are is sometimes the biggest hurdle to gaining some peace of mind (which, of course, can fluctuate from day to day). Cheers and best wishes to you, Ardith
Hi Hannah!
Thanks for sharing your story. I feel for you & what you’ve been going through … I’ve been confined to one room for several years due to severe MCS (Multiple Chemical Sensitivity) as well as EHS/Electrohypersensitivity, CFS/Chronic Fatigue Syndrome & I also have a HUGE amount of food hypersensitivity – mine don’t appear to be IgE but are can be severe & happen within minutes. I’ve been on a strict rotation diet (mainly mono rotation) for almost 3 years – just a handful of tolerated foods. With most of them cooked for long periods to reduce reactions. Do you follow a rotation too?
I understand how challenging it can be to manage serious allergies & hypersensitivity – sending you lots of well wishes & support from afar- I’m in Australia!
If you’re interested to connect, you can learn more about my story via my website – http://www.ameliahill.com & on social media. I also share my story in the media from time to time to raise awareness.
Sometimes life doesn’t unfold as we might have imagined, but I believe it’s not what happens to us, but how we respond to it, that counts.
Hugs,
Amelia
&P.S thanks for sharing Hannahs story on your super-fab blog, Sarah!
Thanks for reading, Amelia!
Sure thing!
Thanks, Sarah!
I can not thank you enough for your story. My 26 year old daughter, like you has become allergic to everything. To see you wearing a mask has encouraged her to go out in public again. There is only 1 tree she is not allergic to, all grasses, weeds etc. She is allergic to most foods and eats baby food also. She cant get a pet for her kids because she is allergic to all Dogs, Cats, Horses, Guinea pigs, and anything with feathers. knowing someone else out there is like her she can relate to is inspirational! Thank you !!!!!!
Hannah
My crazy progression with asthma and allergies began when i was 34. I had an full nlown anaphylaxis reaction to the of strawberries.. Just the smell. Luckily i was at work a children’s hospital. My coworkers coded me and git me to an adult hospital. From that point my life and eating was never the same. I am stubborn to a fault. After testing and alot of information that i simply didn’t believe an another allergic reaction occured when out eatiing with my mother. I ate food that i was told i was allergic to.. I simple did not believe the test results. I ended but in the hallway of an er they started coding me in the middle of the hallway.. I will never forget the look on my moms face . as she is saying hold on hold open your eyes. It was heartbreaking. Since that point i have learned to adapt..a doctor once told me adapt or die.
Now that i am heading into my 50’s my symptoms are slowly getting better . my immune system is slowing down and finally chilling out. I still have reactions but usually not as severe. Zolair has been a God send for me!when i do get sick with asthma and allergic reactions they usually do not last as long. If you have not tried it talk to your doctor about it.
I thank you so much for sharing your story! It makes me not feel so alone in my allergy world. I feel at times at of place or too high maintenance. I have a severe mold allergy, same as you. It effect all things and no one had any idea. I also have a sulfate allergy and that took almost a year to finally figure out. It took alot of food journaling, an oncologist, a primary and the only one who took the time to help my my naturopath. I was so severely anemic I needed a blood transfusion… my naturopath gave me a few options before having to go through the transfusion. I was treated to leaky gut by the naturopath and gave up what I feel like was everything. I ate organic brown rice, fresh butternut squash and farm fresh organic chicken for about 6 months.. I felt alone and exhausted. I fell into a little depression too. I can’t eat anything aged or fermented, nothing that’s not organic. I’m fortunate allergies reactions consist of a severe head cold sinus infection effect with mood swings. I’m still figuring it out. And then some days I eat something I’ve eaten 100 tomes before in the last year and I have a reaction. I’M SORRY FOR SUCH A LONG POST. I just feel that you can’t share your stories everywhere.. I am grateful for your strength to post your story!
Similar environmental allergies, fabrics and dandruff from people too..animals, carpeting, musty/moldy/fragrances. Yes, its important to have a scarf onnat all time to breath through~public transit can be terrible.
Thank you for sharing. I have severe allergies to peanuts, tree nuts, mustard (including the seeds/spice), cats/dogs/all furry animals, dust, and birch pollen. I am constantly frustrated by how these things limit my life, especially my social life and travel/cultural opportunities. It is inspiring to see how you work through these challenges. In particular, it gives me hope to see that you were able to find a partner who accepts this – I am not so lucky (so far). I am also so relieved to hear you speak openly about how your allergies relate to panic attacks. I have severe anxiety and OCD and these illnesses intersect in many ways with my allergies. Thank you for raising awareness about the mental health cost of living with allergies. So much love. ❤️
It’s interesting to read about your struggles. My daughter, who is about to be 21, is in a similar shape and it’s getting g worse. Most of her symptoms are hives, lips and mouth swelling, throat swelling, and passing out. She is allergic to all fruit, all vegetables – she used to could eat lettuce but her throat swells now, rice, barley, corn, oats, wheat, all fish and marine animals, she is terrified of eating, and I have no idea how to help her. All the allergist say is to stay away from the food – which also includes anything with feathers, soy, milk, and peanuts and anything related to them. I am at a loss as to what to do. Yes, we carry an epi pen and Benedryl everywhere. Still – what to eat? I have no answers,.
Thank you so much for sharing your story, Hannah. As I was reading your article, I felt like someone was writing my own story. It is nice to feel validated and not alone. I understand how defeating our forces lifestyle is; some days it’s a struggle to stay afloat.
I also suffer from a large quantity of food and environmental allergies. Mine started with peanuts and treenuts a few years after having my son (in my mid-20s). Two summers (at age 30)I extracted Lyme Disease and was put on high doses of heavy duty antibiotics for almost a year. I started to notice more throat tightness with certain foods, gives, and other allergy symptoms. I was seeing a naturopathic doctor for the Lyme at this point, and he tested me for over 90 foods, almost 30 came back positive, including fruits and vegetables. One of my highest is celery, which is in so many things, especially things that are to help heal your gut. I have been so nervous and discouraged trying to better myself. My list keeps growing.
I am still seeing a naturopathic doctor, trying to heal candida, leaky gut, and adrenal fatigue, but I feel like I have made no progress in bettering these allergies.
You mentioned panic attacks- YES! The more foods I added to my list, the more I have been afraid of food.
I also understand the lifestyle change. I feel like my social and dating life have gone down the drain. It is hard to have a social life without food or alcohol involved, and watching others do so is just a pounding reminder that there is a such a struggle to do so. It’s defeating to know that one of the most basic survival needs is such a hard task.
I am a single mom on top of all this. It’s hard enough to work full time and run the ship alone, but to add making EVERY meal just adds to the stress of it all. My son is 11 and is also starting to develop unusual allergies. I now have to make separate meals all the time and clean dishes (by hand) extra well for both of us.
Thank you for publicly sharing your story to make me feel less alone.
I am so glad that you shared your story Hannah.
I have been to 6 different allergists and the last one I went to said to me to go to a dermatologist which I have been to already.
The first allergist that I went to was the best. But unfortunately he moved to a different state.
My allergies are weird since theyvare contact allergies or food that I eat. I can’t wear any make up or lipstick or even chapstick.Now I can’t wear earrings or jewelry .My allergies are weird since my eyes start itching and I get tiny blisters inside my eyelids. the doctors don’t believe me when I mention that to them. I have also been to an opthalmologist as well.
My list of allergens is growing every day. I know ttjat there are worse things to have than allergies, but, it is really annoying and not many people or doctors understand this situation .
My allergies started after I hysterectomy in 2016. I just want to be a normal person ,but, allergies are getting worse every day.
I’m thinking of going to another allergist , but, not sure if it will be a waste of time and money.
The first allergist did a patch test and he gave me a list of all the things, products, fragrances to avoid.
When I did my food prick test it came out negative, but, that is not the case since every time I eat something my eyes start itching and getting swollen. I have to write down what I ate look at the list of ingredients and try to do a process of elimination.
I think it is just ridiculous sometimes.
Just yesterday I ate a sugary cereal , soon after, my eyes started itching and I developed a big blister in my eyelid.
I told my husband and he was in shock and disbelief. The same way that a lot of doctors are. Doctors do not know how to help people with weird allergies.
I am glad I am not alone
Thanks for sharing
Take care
Claudia