[Remember our summer intern, Rachel? Well, she’s back at college and recently befriended a fellow student who has celiac disease. Rachel loaded Camille up with NFCA’s informational resources, then conducted the following interview about what it’s really like to be a newly diagnosed celiac on campus.]
I got to know Camille Griswold, a 20 year-old student at the University of Rhode Island, last year through our sorority, Zeta Tau Alpha. She was recently diagnosed with celiac disease and also found out she cannot consume dairy products. Having interned at the National Foundation for Celiac Awareness (NFCA) this past summer, I lent her some of my knowledge and became a friend who could somewhat understand her new situation.
In the interview below, Camille speaks out about her struggles and triumphs, and the support she received from roommates and family.
Rachel Fox: When were you first diagnosed with celiac disease, and what were some of your symptoms?
Camille Giswold: Over the summer, I was having severe stomach pains to the point where every time I ate I felt nauseous and could barely function. I saw my doctor and he didn’t know [what was wrong] at first, so he put me on medication hoping that whatever was causing the problems would go away. The medication didn’t help, and I ended up going to the emergency room one day after work. They ran blood tests and that’s when I learned that I have celiac disease.
RF: Do you suffer from any other food intolerances?
CG: During all of this, I also developed a dairy intolerance. I cannot eat anything with milk products or that are made in a factory that handles milk products. When I do eat things with milk, I get an awful stomach pain.
RF: Were you worried about coming to school being recently diagnosed? If so, why?
CG: I was terrified to come back to school. Over the summer, it was hard enough explaining to my family and close friends that yes, I used to be able to eat those things, but now I can’t. People at home were not as understanding as I thought they would be because they were confused as to why this has happened now that I’m 20.
I had no idea what to eat at first and was confused and scared. I was afraid I would feel left out when my friends went out to eat or not know how to feed myself in my own house without my mom’s help. Since this was so new I didn’t like talking about it and was depressed for a few weeks. I knew it would be hard to come back to school because everything in my world was completely different.
RF: Were your roommates accepting and understanding of your new dietary needs?
CG: At first I felt like they felt bad for me. I don’t like when people have pity on me because then I feel bad for myself and I don’t want that. There were a lot of nights when my roommates would be thinking of things to make for dinner, come up with something they all agree on and then look over at me and remember that I couldn’t eat it. I don’t like when people try to plan meals around me because it’s just too complicated and when I cook for myself it’s only me who has to eat the substitutes. There were a lot of times that they would forget about my special diet all together and I would have to remind them.
RF: What are some things they do to help?
CG: They tried making me pizza and we would cook gluten-free brownies and cookies, but to me they never taste as good as what I know and love. It would bother me when they would try to make me feel better and say things like, “Oh, they don’t taste that bad,” because to someone who can eat the real thing it’s easy to say it doesn’t taste that bad. They’re not stuck with these options for the rest of their lives. They can always go and eat the good things later.
They try to substitute ingredients so I could eat them, too. They also have become more understanding and they rarely forget about my diet now.
RF: What are some things you have trouble with in your living arrangements with people that aren’t celiac?
CG: My biggest problem is that I have to buy special foods like sauces and breads that do not contain wheat and dairy, and people tend to forget and will eat my foods. It bothers me when people eat my foods because it’s not like I can share their food back and my food normally costs more than regular food.
Also, it’s hard when cooking because I’m always afraid of cross-contamination between the pots and pans and my foods, so I tend to clean them very well before I use them. The biggest problem is that they don’t have a full understanding and there are times they try to help me by giving me food suggestions, but I’m normally frustrated and just don’t want to talk about it.
RF: What’s your favorite food to make?
CG: I like making gluten-free soy sauce chicken with white rice and broccoli
RF: Who do you find helps you the most when you become frustrated with celiac?
CG: My mom is my crutch through all of this. She was there with me through all the nights when I couldn’t move because my stomach hurt so badly, to the nights when I would be so upset because all I wanted was macaroni and cheese and I couldn’t have it. She is there when my roommates make me frustrated with their suggestions and she listens to me complain about how I never have anything I want to eat. She doesn’t give me advice as much as she just listens so I can know she’s there. I know that she doesn’t always understand what I’m going through, but she tries her best.
RF: What is one thing you’ve learned while having celiac that has made you stronger?
CG: I believe in myself more now. I never thought I would be able to make it through this. Now that I can sit in a room with people eating foods that I used to love and not feel bad for myself is my biggest accomplishment.
Did you struggle with the transition to a gluten-free lifestyle? How did you stay gluten-free at college? Share your words of encouragement in the comments below!
November 10, 2011 at 10:07 am Cheryl
[As summer comes to a close, we at NFCA are remiss to say goodbye to our dedicated interns. We know they’ve learned a lot, and we sure liked having them around! Here, our Communications intern Rachel shares how she made a difference in the celiac community.]
Let me start off by saying that working as the Communications intern here at the National Foundation for Celiac Awareness (NFCA) has been such a great experience. Not only have I improved my writing skills, organizational skills, and communication skills, but I also have learned so much about celiac disease.
I am returning to the University of Rhode Island as a junior with a better understanding of my own work ethic and how well I manage tasks. I have participated in so many projects here at NFCA that have taught me a lot.
I would have to say that my favorite project was conducting interviews with children that have celiac disease for the next phase of Kids Central on the NFCA website. It was great to hear kids discuss and speak out about their disease in a healthy and triumphant way. I was delighted to know that the questions I put together had some impact on them and that they would end up published on the website with their answers. Not only was this a project that I found to be successful, but I also feel as if it might open other doors in the future with NFCA.
Leaving my mark - Gluten-Free BBQ Chicken for the office!
In addition, I thoroughly enjoyed reading and writing book reviews. I reviewed quite a few books, with material ranging from nursing advice to easy-to-follow recipes for any gluten-free foodie. One of my book reviews even turned up on a Google Alert, which impressed and delightfully surprised me.
I will miss spending my Tuesdays and Thursdays here in the office helping outreach to people who need to be educated about celiac disease. My 10am-4pm slots on those days will soon be filled with class; however, I won’t be making as much as a difference in the community as I was working for NFCA over the summer.
I hope my journey with NFCA won’t end here and that I will return next summer!
Sincerely, Rachel Fox
August 26, 2011 at 12:30 pm Cheryl
Growing up as a Girl Scout, I loved their cookies. The market for Girl Scout cookies has grown, and now a 7-year-old New Yorker is bringing attention to a very specific target audience.
Elle Malinow and her mother, Stacy, have started an online petition for gluten-free Girl Scout cookies. Elle has celiac disease, which means she’s never been able to eat the cookies she sells each year. The mother and daughter’s goal is to get 100,000 signatures to drive support for a gluten-free Girl Scout cookie Elle and other children with celiac disease can enjoy. So far, the petition has gathered more than 6,000 signatures.
If you can't wait, Glugle Gluten-Free has a recipe for Gluten-Free Thin Mints. Click the photo to access.
The Girl Scouts of America said it conducted extensive market research on the issue and concluded that there simply isn’t enough demand to justify the extra cost of producing gluten-free cookies. Elle stated, “”I feel sad because a lot of the Brownies, they get to eat them, but I can’t.”
Let’s hope The Girl Scouts of America will consider Elle’s petition and reward her for her hard work.
-Rachel
Elle’s petition has gained attention in mainstream news. Watch a video segment here: http://abclocal.go.com/wabc/video?id=8162511
Do you think there’s enough demand to warrant a gluten-free Girl Scout cookie?
June 8, 2011 at 12:52 pm Cheryl
[NFCA is lucky to have 3 interns helping the cause this summer. You already met Emily, our Gluten-Free Industry Initiatives intern. Now meet Rachel, our Communications intern.]
I became especially interested in the gluten-free diet and lifestyle as a result of two events: my uncle was diagnosed with celiac disease, and my brother’s girlfriend interned at the National Foundation for Celiac Awareness (NFCA) while she was in high school a few years ago.
At the NFCA office
While growing up, it was tough watching my uncle struggle with meal choices when dining out or get distressed while grocery shopping with my aunt. I was aware of a few glutening incidents he had while we were all out together in Las Vegas, where he resides. I decided that I wanted to help make others’ lives better by getting information out to people who might not be aware of celiac disease, who have been recently diagnosed, or people who want to further educate others with NFCA’s brochures.
I am currently going into my junior year at The University of Rhode Island, majoring in Communications and minoring in Public Relations. This past April, I was inducted into Zeta Tau Alpha, a women’s fraternity that supports leadership, service and academic achievement. I live in Yardley, PA, and have always been active in my community, whether it be soccer, Girl Scouts, my synagogue Kol Emet, or just volunteer work around the area.
I am thoroughly excited to work with the NFCA team this summer and to gain further experience and exposure to information about celiac disease.
-Rachel
Rachel has already hit the ground running. Check out the cookbook reviews she wrote for our Gluten-Free Hot Products blog at www.GlutenFreeHotProducts.com.
June 7, 2011 at 2:44 pm Cheryl
Celiac Central: Bits and Bites 