it's me...Neysa

Hi! My name is Neysa. Thanks for stopping by my new site! The Milk Allergy Guide is a place for anyone who avoids milk & dairy in their everyday lives. If you’ve heard multiple times, “I’d die if I couldn’t eat cheese!” then you’ve come to the right spot. This site chronicles my crazy milk-free life and provides help and tips for anyone dealing with the struggles of avoiding dairy. I was diagnosed with my milk allergy as an adult and it changed my life in more ways than one. My site is a place that understands what you’re going through and gives you the information and help you need to eat great food again and live a happy life. Feel free to read my whole story below. It covers my diagnosis and what led me to creating this site.

My Whole Story

I grew up in small town Iowa and had an amazing childhood and a great family. I spent my summers on the Iowa river and winters sledding down hills on our 140 acre farm. School was fun and easy for me and weekends were spent getting into trouble with friends. By 18 I was headed off to college at Northern Iowa and ready to take on the world :) College was the best time of my life. I was majoring in Chemistry and found my time divided between lab, library, and partying. I ate whatever I wanted and never thought about or cared what ingredients were in my food. Senior year I met my amazing husband John and was soon engaged. I was 23, getting married and headed to Cincinnati, Ohio as a Product Development Researcher for Procter & Gamble. Life was great.

I don’t really remember exactly when I started getting sick. I know I spent a large part of my junior and senior year in college with severe sinus infections that I couldn’t get rid of. Antibiotics didn’t work and doctors didn’t know what to do with me. I remember waking up a few times in the middle of the night with razor blade pain in my stomach. I was sick a lot, friends definitely noticed, but I just assumed it had to do with my crazy college lifestyle.

Something’s Wrong

I’ll admit moving to Ohio was hard. I went from a simplistic Iowa country life where I’d grown up. I knew the Iowa culture, had my family, tons of friends, and life was familiar and safe. I was now in a new city with a high stress corporate job, dealing with family drama from Iowa and adjusting to my new life with no real support except from my husband. If I didn’t have John I probably wouldn’t have survived. Could stress have caused my food allergy? Is it genetic? Did I eat too much dairy? Your guess is as good as mine because the medical community doesn’t know what causes food allergies. They are clueless. There are a number of running theories. See theories

The first real problem I remember was the digestion issues at night, John noticed too. I couldn’t lay down for bed without sitting up with indigestion and feeling like throwing up. The stomach pain was worse than any pain I’ve ever experienced, it felt like a razor blade in my stomach and I couldn’t move. I would just cry in pain. One of the worst symptoms was the nose bleeds. I had nosebleeds every day for a year- in the shower, during work, at night. I had my main blood vessels in my nose cauterized by an ENT only to have them burst again. People at work were noticing. A coworker joked that cocaine addicts had nosebleeds all the time too. I had so many terrible symptoms. It was affecting my job and my life. My entire body was being affected from respiratory, immune, digestive, skin. I was going to doctors and getting no answers at all.

I went to a total of 5 doctors. Every doctor was like the rest. They had me fill out extensive paperwork then took the standard blood tests and found nothing wrong. Their final suggestion was always to get on anti-depressants to see if the symptoms went away. They had no other suggestions and I felt like a number not a person. It was like clock-work, like going to the exact same appointment 5 times. I only remember one doctor even mentioning that something I was eating could be causing the problems. He simply asked “Do you think it’s something you’re eating?” where I replied “No” and he said “OK”.  I wasn’t depressed, I was sick, very sick, and there was no help from the medical community whatsoever! I’m sure there are very good doctors out there, however, I was unable to find one that went outside of the box or even cared. Food allergies are not understood in the medical community.

I went home and back to being sick, never thinking twice about what I was eating. I wasn’t myself and I wasn’t really living life. I didn’t like explaining that I was sick and I had disconnected from friends and family. I was spending a typical weekend sick on the couch when I saw Elisabeth Hasselbeck, from The View, on TV promoting a book she wrote about eating gluten-free. She went into detail about doctors misdiagnosing her for 4 years and how the medical community is far behind in diagnosing or understanding diseases or allergies related to food. It was the first time I had even considered what I was eating could be causing my terrible symptoms. My symptoms seemed much worse than her gluten- intolerance symptoms but I was wondering if I could be allergic to some type of food. After reading online about food allergies, I was amazed and mad that not one doctor had even suggested getting tested for food allergies. I soon made an appointment at an allergist to get tested for food allergies.

The Diagnosis

Going into the allergist appointment, I didn’t really think I had a food allergy and I definitely wasn’t ready to accept what that meant. However, I’d try anything at this point. I told the allergist my symptoms and that I decided to get tested just to rule it out. She informed me that it was very likely that I had a food allergy and she had diagnosed adults with food allergies at an increasingly large rate in more recent years. She told me she would do a skin prick test and be testing about 90 food ingredients. Well, this meant 90 needle pricks into the skin. They went into my back as I cringed. I remember after a few minutes I felt an intense itch! When she returned, her and a nurse said “Oh, you’re definitely allergic to something”. There was a large red, itchy, bump next to a number on my back. I was sitting up now and they were looking up the number and what allergen it corresponded to it. “MILK” she said. “Well, what do you think?” she asked as she saw a shocked, puzzled, disbelief look on my face. “No” I said, “I don’t think that’s right”. She explained that it was very possible and one of the most common allergies known. I then got a crash course in being allergic to milk, reading ingredient labels, and avoiding anything with casein and whey protein (the protein I was allergic to in milk). She said if I was allergic to milk then going off of it would definitely make my symptoms disappear and it was the best way to validate that I had an allergy. There was no pill, no shot, nothing else besides avoiding the allergen all together. I left in shock. See Ingredients to Avoid

My cats Kokomo and DixieBob with cousin Max

I went home and read over the material I had been given. The ingredients I needed to avoid were very confusing to me. After looking through my kitchen, there were only a few things that I could eat without milk. I realized right away that this was going to be extremely difficult for me and would drastically affect my life. I was trying to convince myself it wasn’t true. Most everyone I told I was allergic to milk just couldn’t believe it. It didn’t seem possible to develop an allergy as a adult. This was the first time I would start to see how the public feels about food allergies and how unwilling they are to accommodate people who are allergic to certain foods. Everything about our culture revolved around food and I had never really noticed. With the support of my husband John I decided to go on a milk-free diet and see how I felt. I had nothing to lose and I would do anything to feel healthy again.

I spent the first weeks and early months thinking of everything I couldn’t eat anymore. I could think of hundreds of things I couldn’t eat, but found it very hard to think of even a few meals I could eat. I would list off dozens of items to John that I couldn’t eat anymore. I also realized that everything I had been eating contained dairy. Every meal of every day had contained either butter, cheese, milk, cream, yogurt. My main seasoning for everything was butter. I found myself hungry at all times. Everything I found from snacks to treats had milk on the ingredient label. I was naive to eating milk-free and I felt like a huge part of my life had just died. I’m pretty sure early on I was living off peanut butter sandwiches. I also remember eating a lot of plain chicken and rice. I actually thought I would never eat tasty food again. I didn’t know it at the time but I was so completely wrong. I couldn’t have known, but I had somewhat of an addiction to dairy and the cravings were unreal. They would however disappear in time.

The Change

I was off milk protein for about 3 weeks and was consumed in the drastic change of the food and social interaction, yet one thing was very clear, I was feeling great physically and my terrible symptoms were gone! This was very obvious; the nosebleeds had stopped, no blood in the stool, blurry vision gone, I could actually concentrate at work, no more stomach pain, I’m not as irritated, I don’t feel extremely weak, I’m not sneezing 100 times a day, I’m remembering things, my nose isn’t dripping non-stop, no migraines!, I don’t feel lightheaded, the nausea is gone! (The nausea was by far one of the worst symptoms!) WOW, all the symptoms were gone! It was hard to believe and I also had a few people telling me it was all in my head. So after feeling great for about a month I decided I would eat cheese pizza to test if I really did have an allergy. I think it was Papa John’s pizza. I ate the pizza and that night I felt fine. However, by late the next night I was deathly sick. I had thought the reaction would happen right away. I learned allergic reactions can happen within 72 hours after eating the allergen. This is the main reason food allergies are almost impossible to detect on your own. This is also the most unknown thing about food allergies.

What I began to realize and know all to well now is that the worst part of having a food allergy is dealing with the social aspect of it. Sometimes the food doesn’t bother me at all, majority of the time it has nothing to do with the food, it’s the social challenge the food puts on my life. The social part of my life was changed forever. From BBQ’s, pot-lucks, lunches, dinner with friends, holidays, vacations, weddings, birthdays, parties, etc. etc., every social part of my life was drastically affected. This was and continues to be the hardest part of eating milk-free. I could spend hours just writing about my experiences and what I’ve learned about how food and social interaction go hand and hand. I’ve seen the best and worst of people through this allergy. It’s changed who I am for the better.

Life Now

Since being diagnosed I’ve had to adjust and adapt to my new lifestyle. I’ve never felt this healthy before. I truly believe what we eat affects every aspect of ourselves, mentally and physically. I’ve dealt with some terrible situations and seen some amazing acts of kindness. I’ve identified the friends and family that don’t care and don’t get it, especially when they’re hungry, and the ones that truly understand and care. Since being diagnosed I’ve moved 2 different times and dealt with learning new cultures and new grocery stores ;). I now live in Racine, WI and work as a Research Scientist. I have my day job but food allergies are my real passion. I created this site after spending years dealing with adjusting to having a milk allergy and not having any help doing it. I hope you stick around and enjoy the tips and stories I’ll bring as I live with the ups and downs of a food allergy.

2 thoughts on “About

  1. Thank you for writing this. I stumbled on your blog today for the first time after having an allergic reaction to of all things…turkey bacon. I am allergic to dairy/milk and I’ve done my fair share of the elimination diet to diagnose myself. I’ve been going to doctors for a year and no one would give me answers. I became lactose intolerant a year ago after an intestinal virus. It went away after a few months. This year I had a stomach virus and now it has morphed into a full blown allergy. A couple weeks ago I ate two curly fries before going to a friends house and ended up throwing up, full blown rash all over my face, and it looked like someone had punched me in the eyes. Long story short, it’s been a few months for me but I am having a hard time coping. I feel like I can’t eat anything. I drink almond milk and use earth balance butter but I feel like I’m stuck eating eggs and plain cereal all the time. I have three trips planned in the fall and I worry about the eating situation. I am going to read through your blog for ideas. I just wanted to share my story since I am just starting this journey.

  2. Hi!
    Wow! So glad to find your site! I was diagnosed with a milk allergy after am IGG blood test that my chrio ordered. I had lots of joint pain, stomach issues, migraines, etc…I felt a little crazy. I know what you mean about friends…I think some of my friends think I am crazy. I have been off milk for 1 month and last night started feeling SO bad. I could not figure it out. I went and looked at the gluten free breadcrumbs I was using (I have been GF since last August on my quest to figure out what is wrong with me) I did test positive for a wheat allergy too. Anyway, the breadcrumbs have MILK in them! DUH! I never even checked. Lesson learned. I used them in 4 recipes over the weekend. I feel validated but also a little scared since milk in breadcrumbs could send me into a bit of a tailspin.

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