I met Nancy at one of my AWOL gatherings. We hit it off right away, and after sharing some of our stories with each other, I asked her to consider an interview for this little blog I write. Being in healthcare, valuing wellness and helping others, and being a writer herself, she graciously agreed to share a piece of her story with us today. It was difficult to trim this interview down…but I encourage you to read through our chat to see if Nancy has advice for you or someone you know!
Thank you so much for privilege to interview you! Let’s try to start towards the beginning to get a little background on you and your journey!
Cassie, it is kismet that you and I met! And the fact that we met in London makes it even more fascinating. I believe that people come into our lives for certain reasons, and you came into mine at a time when I needed a sounding board. You helped me validate that my health has changed – for the better – since living overseas, and I’m happy to share my “health” story with your readers. Thank you for encouraging me to speak on behalf of people with food allergies, perhaps my tale can give hope to some who have felt the frustration of lifestyle changes, making correct food choices, and the inevitable scary situations that allergies mandate.
Where are you from, and what were you up to before moving to the UK? The Habitude Fitness community would love to hear a little bit about who you are!
I was born in Yonkers, New York, about 20 miles outside of Manhattan and lived there for 30 years before relocating with my husband to Tampa, Florida where we lived for 24 years prior to moving to London in 2012. At the age of 38, I returned to school and trained to be a diagnostic medical sonographer (ultrasound tech). Currently I am not working in London, but when I repatriate, I will return to my fulfilling and rewarding sono career. Backtracking a little, growing up I had a normal happy healthy upbringing. I dubbed my mom the “food pusher” from way back when – she showed her love through food and we ate a variety of wholesomely prepared foods, rarely any processed foods or fast foods were allowed and I can even remember my mom refusing to fall for the microwave “gimmick.” We were the last ones on the block to get one! Growing up I ate everything and anything that was put in front of me and I never had any issues with food allergies or weight.
What did your average day look like then, and how were you feeling?
From age 40-50 I was active, healthy, pain-free, working full-time, enjoying life and all the food that came with it! Other than having an allergy to penicillin (which half the world is allergic to), I had no other allergy issues.
When did you get information on your then current health conditions? How did this affect your day-to-day life?
At age 50 it was like a switch got flipped and I developed an allergy to fish, shellfish, and all seafood. I had an anaphylactic reaction in a restaurant and wound up in the ER – it came out of the blue that fast. This was the worst allergy to have (so I thought) since I was living in Florida surrounded by wonderful fresh fish. I instantly had to change my eating habits. Fish was ingrained in my diet, I had to depend on other sources of protein which meant I ate more meat and chicken, and I did lean on beans and nuts and soy for alternatives. I also began to read labels and ask how food was prepared when eating out. I couldn’t take a chance on cross-contamination. Carrying an epi-pen was my way of life, and thankfully I never needed to use it, that is until a few years after my fish allergy diagnosis. I had another anaphylactic reaction while eating a snack – an apple with peanut butter. Luckily I happened to be at work at the time and one of the nurses was keen enough to notice I was in the beginning stages of a severe allergic reaction. Once again I wound up in ER, and this time I was sent to an allergist. Low and behold, I got the shock of my life, a list of highly allergic foods the length of my arm that I had to remove from my diet – nuts (tree and peanuts), coconut, soy, corn, beans, chickpeas, fruit (apple, pear, mango, grapes, most any kind that had a “skin”), and chocolate too – not fair. Now I was in big trouble. How was I supposed to eat? My life changed drastically overnight and I lost weight mostly out of fear of eating. The first allergist I went to told me I shouldn’t put too much emphasis on food and what it tastes like and that I should eat only to survive, his suggestion was milk, eggs and bacon for breakfast, meat and potatoes and carrots and salad without dressing for lunch and dinner. I had to reprogram my taste buds and stop craving what I used to love. It made eating out and socializing with friends around food very difficult. I would bring my own food to someone’s house if they hosted a dinner party. I would prepare separate meals for husband and myself. Gone were the days of sharing a plate and sampling a taste and trying something new. I was brought up on comfort food and food meant love from the “food pusher”. We socialized around food, I had cravings, and I really really really enjoyed food. Although I never had another anaphylactic reaction, I dealt with hives every single day for years; some were the size of Texas on my face. Since my job meant dealing with the public, it became more than just a nuisance trying to keep my hives at bay and hidden. It was an uncomfortable way to live. For those who have never experienced hives it’s a red splotchy itch – everywhere. I lived on antihistamines and Benadryl daily as a way to survive. I became depressed and withdrawn for several years. On top of that, I also developed eczema soon after my food allergy diagnosis. It is a skin ailment that causes dry scaly flaky red inflamed ulcers and it is known to be caused by an allergic reaction. Won-der-ful. Now I have this on my plate too. Thankfully the eczema ulcers are not noticeable; they are on my palms and behind my neck near the hairline. My eczema flare ups seemed to coincide with my food allergy sensitivities, but then again they seem to have a life of their own exacerbating in the hot humid weather (dah, that’s Florida all year-long). My dermatologist had me change to bathing products designed for eczema, and a topical ointment alleviated some of the itching and scaling, but at times it was very uncomfortable and embarrassing.
How did you take action with what the doctors were telling you?
Frustrated for years over how I was living my life – I wasn’t living, I was surviving. I sought out another allergist for a second opinion. I don’t know why it took so long for me to seek out another doctor, other than I was depressed and I didn’t want to go through the testing all over again. I was afraid more allergies would be added to the list. One of the radiologists I worked for suggested I see a friend of his, a female allergist, and she was the one who brought me out of my funk. She was warm and caring, and sympathetic and patient, and she gave me permission to eat again! It took many trials and errors but working closely with her and her staff I slowly began to learn what amount of the sensitive foods triggered hives. If I ate too much of them I broke out with hives, but I learned that eating a smaller portion or just a taste of something I enjoyed would be an option. For instance, I learned that eating ½ of a cooked/stewed apple without skins was all I could tolerate, but it was delicious nonetheless. I had freedom and I cried tears of joy when I was able to taste familiar foods that I once loved. Don’t misunderstand, I still had severe food allergies and there are many foods I will never be able to eat again (nuts, soy, chickpeas, fish – those are my anaphylactic triggers), but I have been allowed to re-introduce some of the foods I loved back into my diet, the ones that I am not anaphylactic to, just highly sensitive to, such as fruits and corn. I still must read labels like a hawk – you would not believe how many products contain soy! And if I eat out, I look at the menu online and I call the restaurant in advance if I have questions on how the food is prepared. Today, restaurants are more willing to prepare foods for people with sensitivities. And those restaurants that won’t, well, they won’t get my business. I must always be prepared to take Benadryl at the first sign of a hive, but I no longer live on antihistamines or Benadryl each and every day – and I still carry an epi-pen. It’s a crap shoot way to live, but I’ve figured out that I can’t combine too many sensitive foods all in one day or I’ll suffer the consequences.
Bring us up to date on coming to London, how you were feeling at the time, and what if any symptoms you were having early on.
Moving to London was not on our radar and we grabbed this opportunity without a moments thought. Well, that’s a lie, in the back of my mind I always worried about my food issues and fear of the unknown gets the best of me at times. The “not knowing” what food options I had overseas made me nervous. But I have to say I adjusted to life in London very quickly and seamlessly. I was excited to embrace this new adventure and that fueled positive energy that’s been missing in me lately. I immediately realized that food and food shopping was “different” here. Firstly, the eggs aren’t refrigerated – you find them on a shelf next to the bread, sometimes with feathers still stuck to the shells! And the yolk is almost an orangey-red color indicating its freshness and chockfull of good vitamins, and they cook up creamy and rich – yum. Secondly, the expiration date on food is very short, like 2-3 days on produce, and if you don’t use it by then it’s inedible. Thirdly, everything is fresh and wholesome, there are fewer processed foods and preservatives here. When you read ingredients on the labels it is all natural. Farmers proudly put their names on their products; honey is honey and the labels states what farm it is from! GMO’s are obsolete. Even the meat is different and different tasting, in a good way. There’s fewer hormone injected animals and grass-fed is the norm. And there’s less sugar in products, food tastes natural and is rarely pre-sweetened. Words you can’t pronounce are missing from the ingredients label here, not so in the US. This got me thinking about processed food in the states, all the chemicals and altered foods, maybe this is where my allergies are stemming from? In the two years that I’ve been living in London I’ve had 3 episodes of hives – only three – and I know exactly what caused them, it was a cross-contamination with nuts. Another interesting tidbit is that I no longer suffer from eczema flare ups. Today I’m eating whole natural fruit – with skins too! I’ve reintroduced beans and corn into my life with no adverse reactions. I haven’t been brave enough (or stupid enough to play Russian roulette) with fish, nuts, or soy, as those were nixed by my allergist and I don’t want to experience an anaphylaxis reaction here. However, I feel like I’ve got my life back. I feel healthy, I’m eating healthier, and I’m not taking any meds for my allergies.
When did you start to notice improvements in your health?
I have to say within the first month of living here I began to experiment more with expanding my food base and I’ve been moving forward ever since. Reading labels and seeing how natural the ingredients are gave me courage. Fresh farm-picked beautiful fruits and veg tempted me. It’s what we would refer to as “organic” in the states. I took baby steps at first, fearing the worst possible outcome is always in the back of my mind. Today, food is not my enemy here. I love food again! And I can prepare meals that both my husband and I can share and enjoy together. Just a side note, once a person has food sensitivities, they will always have it, it’s not that we grow into or out of these sensitivities, they are part of our genes, and have always been there. In my case, something set mine off like a wildfire and manifested into a full-blown anaphylaxis occurrence. I’ll always have to be extra careful with my food choices. But something has quieted my sensitivities down since I’ve been living here, maybe less exposure to additives and preservatives and GMO’s – I tend to think so.
What do you think are the major differences contributing in the complications you were having in the states, and how you are feeling here in the UK?
Simple answer – the way things are processed and handled. Pure is pure. America needs to go back to the natural way, the way I was brought up as a child. Organic or farm grown is how I will buy in the future when I return stateside.
What do your doctors say about how you are feeling to date?
Funny you should ask this question. Recently I returned to Tampa for a “home leave” visit and I scheduled oodles of doctor and dental appointments. Not only did my cholesterol drop 30 points, but I was taken off blood pressure meds too. Now I do attribute these improvements to my increased activity level here. I walk everywhere, upwards of 50 miles a week according to my fitbit gadget. I’m proof that walking improves ones health, not to mention my clothes fit better and I’ve dropped a few pounds too! My visit to the allergist was astounding. She retested my food allergies (blood samples and skin pricks) since I hadn’t had it done in a few years. The results were unbelievable. She said had she not “known” me, she would think I was a different patient! Yes, I still tested anaphylaxis positive to nuts, soy, and fish, and I’ve been instructed to continue to stay far away from those foods, however all others that I once tested “highly sensitive” to had diminished drastically and some were no barely detectable. What does this mean? That I’m cured? Not quite. I’ll always be sensitive now that the “flag” has been raised on those foods, they won’t disappear, they’re part of my genetic makeup, but many have been put back to their “resting” state. According to my allergist, I’m a medical enigma, proving that preservatives and additives and GMO’s can sicken people by activating dormant sensitivities in people. My dermatologist wholeheartedly agrees with my allergist, especially since I am not plagued by eczema any more. Interestingly, the three weeks I was stateside I did have a few tiny outbreaks of hives, nothing serious enough to require antihistamines and Benadryl, and the eczema flared up slightly too, but not to the point that I required topical treatment. Go figure!
Have you done any research or can you recommend any trusty resources for people struggling with similar issues?
I have to admit, I haven’t delved too far into researching. I find it overwhelming and confusing and sometimes contradictory. I have found a solution to what seems to be working for me and I would encourage anyone with similar issues to first find a doctor with whom you can relate to and it may take a few tries to find the right fit. The medical field can be intimidating, but don’t give up, keep looking for the right doctor who understands your circumstances. I work in the medical field and I was “afraid” to look further initially. And network. I can’t say enough about sharing your experiences and being open to avenues to reach your goal. This is where I can’t say enough about the goodness Habitude Fitness does to bring like-minded people together. It’s an easy format for those wanting for find a healthier way, whether through diet or exercise.
Do you think Americans/America can or will ever shift into a more European attitude over food and food agriculture?
I do hold out hope that the states will take notice of how they are poisoning the country through food. Mass production and shelf life aren’t the answers. It may take a grass-roots society to re-educate the big box supermarkets and force them to start selling more of the farm fresh and organic products. We have to hit them where it hurts, in the pocketbook. Some stores are offering more and more fresh options, but at a premium to the consumer. I like the idea of buying bulk produce from a co-op and sharing with neighbors. My grandparents used to barter for food. Things were simpler back then. Lifestyles were less stressed back then (or was it a different kind of stress?) I think we as Americans are living life in the fast lane compared Europeans, and I hate to use the word “lazy”, but maybe “time limited” is a better description as to why we as Americans don’t prepare more healthy meals from scratch and spend more time seeking out fresher foods for our families. Little mom and pop stores and small farmers are the foundation of our country and we should support them. The end result is a longer healthier life with food that tastes like it did in yesteryear.
What advice do you have for others who are dealing with similar issues?
Listen to your body. If you don’t find the answers or like what you hear keep searching until you do. Network, network, network! And don’t give up on yourself. There is only one of you!
What a great journey! Thanks Nancy for opening up and sharing with us. I know your story will be useful and encouraging to many!
Cassie and Nancy