Interview with Michaela Smith – Age 20

Michaela, what food allergies (and intolerances) do you have and how old are you?

I am twenty years old. I am moderately allergic to wheat and have severe gluten intolerance and other intolerances to beef, pork and lemon. I have not been tested for Celiac disease with a biopsy because I went off of wheat and noticed how much better it made me feel and didn’t want to start eating it again. GI doctors require with celiac tests that I still need to be eating wheat and my doctor suggested that I not do that.

What happens if you get exposed to your allergens?

I only have a reaction when I ingest the foods. My stomach hurts really badly and my intestines are usually unhappy. I can sit in a bakery and have no issues at all.

How did you handle your wheat food allergy and intolerances in high school?

High school was an interesting experience. I was in the high school band for all four years. I kept trying to explain to my band director that it would be great to go to a restaurant that had a huge salad that I could eat and then I would have a few snacks when we got back to the hotel. I would at times sit in an Italian restaurant, because that is what the band director picked, and could not eat anything. I had found that even some Caesar dressings had wheat in them. It was a very frustrating event for me even though I knew I had snacks at the hotel.

Another experience that I had in high school was with the Colorado Springs Youth Symphony’s Pikes Peak Winds. I had the opportunity to go to Japan with them. I was really nervous at first. However, my mom helped me out by finding a translator that made little cards and sheets of paper with all the food that I could and could not eat. I went over there for about 11 days. There were some meals that had an unknown ingredient in them, and I decided that it would be a poor idea to eat it because I did not want to get sick. I brought little snacks in my suitcase so that if I did not eat a meal I could at least have a snack. I brought white rice crackers and apple sauce. Most of the kids on that trip watched out for me and helped me as much as possible. I lost a little bit of weight during the trip, but I was also really busy and had an amazing time. Food for me on that trip was definitely not the sole focus.

What is your experience of colleges’ awareness of food allergies?

Some Colleges’ awareness is surprisingly slim; at least that is what my experience has been. Though the University of Denver did an excellent job with accommodating me when I went to a Music Camp there. It was about a 2 week camp and an amazing experience. My mom got in touch with the head chef at the dining hall that we were going to be eating in. The chef had said that he could cook all of my food and I would not have to bring too much. We gave him a list of the foods I can and cannot eat. I came up with a menu for him to follow so at each mealtime, my meal would be ready. They made some of the best Turkey Burgers I have ever had. And the chef made some amazing sweet potato fries. Man oh man was it good. I did not get sick once, and they were truly very good at accommodating food allergies.

My experience at Colorado State University was a little different. At first they said that they would be able to accommodate my food allergies. Though they sent a menu for the week at band camp, and there truly was no way for that to occur. So I ended up bringing my own food that I had in my dorm room refrigerator. I would do all the band stuff at camp, and then I would come back and eat whatever food I had brought by heating it in the microwave. Many of the students were really jealous of the fact that I had so many different foods in the refrigerator and was wondering if they could have some. I said no, I was not trying to be rude, because I only had a certain amount for the week. Overall that was another good experience with food.

What issues did you run into when looking at colleges in Colorado and their awareness of food allergies?

Well I found a few issues. At the University of Northern Colorado they had said that I could live in an apartment or I could live in the dorm and use the kitchen in the basement area. However there are many people who use that area to cook cookies and cupcakes. The last thing that I wanted was cross contamination within a meal that I was cooking. And there was a significant possibility that not everything is perfectly clean. So as wonderful as that had sounded, that didn’t seem to work for me. The apartment idea felt like too much to take on. It would be cooking and grocery shopping in addition to going to school at the beginning of entering college.

The other school that I was looking at was Colorado State University. They had stated that they could handle everything and anything. Though the more questions that I had asked with my food allergies, the more it became apparent that it might not be the best choice. They demanded that I live in the dorm, and their awareness was more about peanut allergies than celiac disease or other intolerances. They weren’t willing to change their menus for me – they just wanted me to find something to eat that was already on the menu and they weren’t good about listing ingredients in the foods.

Since you didn’t live in a dorm, what did you choose to do for living arrangements your freshman year of college? And now?

I chose for my freshman year to live at home because it seemed like a safe place to be. I was a little nervous moving out because of some of the experience I had in the past with people not necessarily understanding my food allergies. Though today I have moved out and live with one roommate in a house. He and I get along great. I have my food and he has his. I have one pan that I cook most of my food in, and he has his. It has worked out just perfectly.

How do you handle your food allergies now?

Today I eat probably about 99% of my meals at home. Probably about once every six months I will go out to P.F. Chang’s with friends because they have a gluten free menu. Though I know that most people my age have food always surround them. So instead I invite people over to my place and cook them a good meal, and then everyone is happy. Most people are surprised at how good Gluten free food really is.

Do you tell your dates about your food allergies? How do you go about doing that?

I do tell my dates about food allergies. At times they have wanted to go to a certain restaurant that I can’t eat anything at. They wonder why I can’t eat there so I explain what happens to me when I do eat wheat. Most of them understand and just want the best for me. Usually after that they let me pick the restaurant so that I know I am eating at a place that is fun and safe for me. My personal favorite is P.F. Changs!

Thanks Michaela!

Mom’s Comment: We have found that the colleges/universities that cost more in tuition are much more likely to have sound accommodations for students with food allergies. That doesn’t mean that a state university won’t make accommodations – but as in the case of offering an apartment as an alternative to dorm living, the alternative may not be easy for a college freshman to work with!

 

Interview with Carlo Steinman – Age 18

Carlo, how old are you and what are your allergies?

-I am 18 years old. I am allergic to Dairy, Wheat, Eggs, Peanuts, Tree Nuts, Soy, Sesame, Fish, Shellfish, Most Fruits and Some Vegetables.

Have you ever experienced anaphylaxis?

-I have been very fortunate to have not ever experienced anaphylaxis.

Since you haven’t experienced anaphylaxis to your food allergens, how did you find out you were allergic to the foods you listed?

– My pediatrician was very good about food allergies and suggested to my parents that I get tested, when I was just a newborn, because he suspected that I was a person who was likely to have allergies.

What types of symptoms do you experience if you ingest your allergens? Have you ever experienced contact or inhalant reactions to any of the foods?

-I am anaphylactic to Dairy, Eggs, Peanuts, Tree Nuts, Sesame, Fish and Shell Fish. Wheat is a gastro-intestinal reaction. Soy and some fruits and vegetables cause me to develop hives, throw up, feel my throat tingle, wheeze and symptoms such as that. I start to wheeze and cough if I’m in the same room as an egg being cracked. I haven’t had any major contact or inhalant reactions.

Do you still carry an EpiPen or two “just in case” ? How do you carry it?

-Yes, I always carry my EpiPen. It fits right in my pocket, no matter what I’m wearing (and I wear some tight, tight pants), so it’s not really a burden to carry it around.

You’re graduating from high school in a few months. Where do you plan on going to college?

I’ll be attending the University of Chicago next year.

Did your food allergies play a part in your choice of a college?

No, my food allergies didn’t play a part in choosing a college. I applied to the colleges that I wanted to go to and was confident that I could make it work.

How are you planning on managing your food allergies in college? Will you live in the dorm or in another living arrangement?

I’ll be living in a dorm. I’m going to sit down with the Dining Services and talk over my allergies and what they’re capable of doing. When I was touring UChicago I had a meal in the dining room, and they have all the allergens labeled and all the ingredients displayed, for every dish, so I’m confident that I’ll be able to manage my food allergies well and eat in the dining halls.

I’m so impressed that the University of Chicago labels all of their food ingredients in the cafeteria! Did other colleges/universities that you debated attending do the same thing? Or is UChicago special in this way?

-A lot of the schools I considered attending did the same thing, or had something similar. I’ve found that, because there are so many different special diets that people follow, college dining services are very on top of disseminating what goes into their foods and making sure that there isn’t any cross contact–a fact just as important to a strict vegan as someone with major allergies. In the past I’ve attended programs on college campuses and I can say that the dining staffs have been nothing short of great about managing my allergies.

Do you tell your dates about your food allergies? How do you go about doing that?

– I’ve found that being honest and straightforward is the best way to go. A lot of dates/get togethers happen at restaurants or somewhere where there is food anyways, so it’s not as if you can avoid the topic. Mostly, though, people already know, because if you’re friends with me (which comes before dating), you’ve almost certainly been at a meal with me. Normally, when I meet new people and they have a meal with me, I explain it to them, because they get curious after seeing me ask questions to the waiter/chef and have such plain, sparse meals.

Thanks Carlo!

 

Emotional Aspects of Food Allergy

Remember when your child was first diagnosed with a severe, life threatening food allergy? For me, I was in denial for months before I could truly accept what a life-altering event it was. I was beyond scared, and I wasn’t sure I was up for the task.

I felt overwhelmed at the road that lay before me to practice vigilance to ensure my son would never come into contact with his allergens. I had a very difficult time trusting that even my husband could properly take care of our son.

There have been times when I needed not only a friend to talk to, but someone who truly understands food allergies and all the emotional issues that it entails. I see it as a strength when we reach out for help, and admit that we are in need of assistance.

If you are feeling overly anxious and can’t quite find a ‘new normal’ after your child has been diagnosed, you might need some help. If your child is having a difficult time at school learning how to self-advocate, or feeling helpless – then you might want to reach out for some assistance for him/her.

Learning how to manage food allergies is a one day at a time thing for us. As Morgan has grown, he has been able to take on more of the responsibility. That doesn’t mean the transitions are easy though! My husband and I are careful to monitor Morgan’s and our emotional health along with physical health. The last thing we wanted was for Morgan’s food allergies to be a stomping ground for rebellion. It’s normal for a teenager to demand independence, but do so with an EpiPen in your pocket!

We certainly haven’t done everything right through the years, and there have been times when my husband has reminded me that I need to let go more and allow Morgan more space. And I have asked my husband to be more detail oriented with label reading. Communication is key in the family unit, and sometimes that requires an outside source to help the process!