Laurie Oestreich is a social worker who works with teenagers and young adults. She is the author of Gluten Free is Part of Me, a picture book in rhyme to help young children diagnosed with celiac disease understand their condition and lifestyle changes. She has an MSW from New York University (NYU) and works in New York City.
Image by Alexandra Wang
Interview of December 23, 2019
Alexandra Wang: What is celiac disease?
Laurie Oestreich: Celiac disease is an immune disease that causes severe reactions to gluten that take place in the lining of the small intestine. Celiac disease is often described as being like an extreme allergy to gluten. People who have celiac disease must avoid coming into contact with anything that has gluten, a protein found in wheat, rye and barley.
Celiac disease is a genetic condition, but it is an environmental factor that triggers it. Celiac disease has a high mortality rate, because people do not know they have it or mistakes happen. The important thing to remember is that people who have celiac disease can lead happy and successful lives.
The important thing to remember is that people who have celiac disease can lead happy and successful lives.
Image courtesy Mayo Clinic
Alexandra Wang: What kind of resources are available for people with celiac disease and their families?
Laurie Oestreich: The Celiac Disease Center at Columbia University is the preeminent Center in the United States. Their major functions are patient care (adult and pediatric), education for patients and professionals and research.
Image courtesy Celiac Disease Center at Columbia University Medical Center
The internet is wonderful for finding gluten free food and recipes. Smartphones make it easier to shop for food. You can look up information anywhere.
Alexandra Wang: Is the gluten free trend helpful for people with celiac disease?
Laurie Oestreich: The gluten free trend was instrumental in promoting more availability of gluten free products. However, the gluten free food industry and consumers’ attitude toward gluten also caused lots of confusion. People without celiac disease acted as if gluten was bad. Gluten is not harmful if you do not have celiac disease.
Image courtesy healthline.com
Alexandra Wang: What led you to write your book, Gluten Free is Part of Me?
Written by Laurie K. Oestrich, Illustrated by Kayla Gartenberg
Image courtesy amazon.com
Laurie Oestreich: Gluten Free is Part of Me is a nursery rhyme book. It is written in a way that young readers can understand and remember what celiac disease is in the simplest way. The text is paired with illustrations that reinforce the information. The book is dedicated to my granddaughter Zoe. She was diagnosed with celiac disease when she was two years old. The message is that gluten free is part of Zoe, but it does not define her.
Gluten Free is Part of Me is a nursery rhyme book. It is written in a way that young readers can understand and remember what celiac disease is in the simplest way.
Alexandra Wang: Why is there so much confusion and fear about celiac disease?
Laurie Oestreich: Celiac disease is not so easy to diagnose without a test. Many people can be undiagnosed for decades.
After her second birthday, Zoe had episodes of becoming violently ill. My daughter and her husband did not know the cause. When Zoe had to be put on a stretcher and undergo an endoscopy, my daughter was traumatized. Her fear increased when the doctor diagnosed Zoe with celiac disease. The word “disease” gave her a bad impression. The terminology made the condition sound bigger and more complex than it really is.
Alexandra Wang: How can this fear and misunderstanding about celiac disease be avoided?
Laurie Oestreich: The term “disease” can cause people to get the idea that celiac disease is contagious. Initially, I did not like calling it a disease because that terminology seemed to stigmatize it. However, a doctor who works at the Celiac Disease Center at Columbia University Medical Center told me that calling the condition a “disease” would ultimately reduce stigma because people would get used to hearing it.
Gluten Free is Part of Me by Laurie K. Oestreich, Illustrated by Kayla Gartenberg
Image courtesy amazon.com
Normalizing celiac disease is part of the mission of my book. My goal is to raise awareness about celiac disease that will allow it to be perceived as common as being allergic to peanuts, being lactose intolerant, or having visual and hearing impairments. I seek to normalize all these conditions in the book.
Normalizing celiac disease is part of the mission of my book.
Alexandra Wang: What sorts of lifestyle changes does a diagnosis of celiac disease entail?
Laurie Oestreich: Nobody functions as one after a change. People function as a member of the group based on a lifestyle. Celiac disease was a new concept for Zoe’s family. Their lifestyle had to change. They had to have gluten free diets.
The entire family’s lifestyle has changed. It is a new way of eating together. There must be gluten free food for Zoe at family holiday gatherings. Right now, it is Chanukah. I must look up recipes for gluten free potato latkes, instead of using my grandmother’s latke recipe. The point to remember is that Chanukah can still be fun, and gluten free latkes are just as delicious as traditional latkes.
The entire family’s lifestyle has changed. It is a new way of eating together.
Chanukah potato latkes Image courtesy Gluten free Baking
Alexandra Wang: What are some of the experiences that Zoe and others with celiac disease have outside of home?
Laurie Oestreich: Having gluten free diets means they cannot eat, drink, or touch anything that has gluten in it. Zoe’s family must ask restaurants if dishes have gluten in them before ordering.
Cross-contamination is also an issue. For example, whenever I have bagels with my granddaughter, I must make sure that utensils that touched gluten did not get in any spreads that she might use. When I prepare a dish for Zoe, I must use pans that did not touch gluten.
Alexandra Wang: How has this impacted Zoe’s social life?
Laurie Oestriech: My daughter must tell other parents that Zoe has celiac disease, whenever she is invited to a birthday party. Sometimes, other parents would make accommodations. Sometimes, Zoe must bring her own food to her friends’ birthday parties.
Mistakes can happen. It is easy to forget that the person has celiac disease. People do not always know that something has gluten in it. Whenever you are not sure about the content of a product, either check its label or look it up online.
Alexandra Wang: What kind of accommodations are made for students with celiac disease at school?
Laurie Oestreich: Zoe’s school cafeteria is informed that she has celiac disease. She is served lunch on a purple plate to remind the staff of her accommodations. Zoe has not made the connection that she has a condition yet, because she is only four years old. She is, however, aware that she is given special food in order to be safe.
The purple plate is also good because her classmates can ask questions about it. The answers Zoe and her parents give would raise awareness on celiac disease.
Image courtesy bamboozlehome.com
Alexandra Wang: Are there non-edible products that have gluten in them that Zoe needs to avoid?
Laurie Oestreich: Playdough can be dangerous for Zoe, because it usually has gluten in it. She cannot play with Playdough, if it is in the classroom or a friend’s house. Of course, we can get gluten free Playdough for her if she wants it. Children often eat Playdough, even though they are not supposed to. That is also an issue.
Image courtesy Kitchen Frau
Alexandra Wang: What led you to become a social worker?
Image courtesy Clipart Library Image courtesy Fredonia
Laurie Oestreich: I switched to social work after decades of practicing occupational therapy. I learned that children and families influence each other’s behavior. Family systems and child development are linked. Figuring out what happens or does not happen at home reveals a lot of information about the children.
I can use my training in occupational therapy as a guide for social work. For example, when I see a child who has trouble at a party, I know the questions to ask that would help me to determine the child has a sensory problem or a behavioral one.
Alexandra Wang: What should parents and counselors be aware of following a diagnosis of celiac disease?
Laurie Oestreich: Be aware of how lifestyles and family dynamics change after a member is diagnosed with celiac disease. What causes certain kind of behavior? Is it celiac disease, a disability, or some other factors? Look at how behavior affects other people. For example, how does one’s behavior influence his or her family, friends, or classmates, and vice versa. Where and when do they exhibit that behavior?
Alexandra Wang: How can school counselors help students diagnosed with celiac disease?
Laurie Oestreich: Keep gluten free snacks for them in your office to make them feel welcome. Ask the students if they would like to recommend books or do a presentation on celiac disease at school, or recommend professionals to do so. Do not reduce the student to a label, such as a diagnosis. See the whole person. As Zoe says in my book: “But that is just one tiny part of all the things that make me ME!”
Image courtesy Gluten Free in NC Image courtesy LaBovick Law Group