The following Q&A session is our interview with Gil Guday. Gil is a teen who is a long-time user of SCD, and is dedicated to helping other teens adopt and practice this challenging diet. We wanted to share his unique perspectives on how he manages his normal but busy SCD-friendly teen life to give others hope and inspiration. We had the good fortune of meeting him when we attended the SCD Symposium at Seattle Children's Hospital in January 2014 (he was the youngest attendee by far :)
1. When were you diagnosed with IBD/Crohns/Colitis?
I was diagnosed with Crohn’s disease at age 11. During the months leading up to the diagnosis, the only symptoms I had were some pain in my stomach and rapid weight loss. Eventually when symptoms persisted I was referred to Seattle Children’s hospital for a colonoscopy and endoscopy. A week or so later we got a call at home from Seattle Children’s; the results of the colonoscopy and endoscopy confirmed a diagnosis of Crohn’s.
2. How did you find the diet?
Following the diagnosis, my parents were looking for options to move forward with treatment. With doctor approval we opted the Elemental Diet instead of steroids, with the intent of quieting down the symptoms and inflammation. Parallel to this my parents were researching the different treatments for Crohn’s, wanting to educate themselves as to what would have to come next. Amidst concerns over the various potential side effects from the array of different medications that were generally used as the standard go-to’s, my mom found discussions on online forums where people shared their success with the SCD diet without medications. Partially out of what made sense and partially out of desperation to avoid the meds if at all possible, my parents showed me the diet, showed me the stories of success, and together we decided to give it a try. Thankfully, I achieved remission following 7 weeks of the elemental diet, and from that point we transitioned gradually to SCD.
3. How long have you been following SCD? How was the beginning part of the diet and how long did it take you to stabilize?
I have been on the SCD diet for about 5 years, and just finished my sophomore year in high school. To be completely honest, the beginning of the diet was rough. The lack of diverse food options during the intro phase of the diet left me craving foods I couldn’t have, and I would occasionally “cheat” and eat illegal foods at friends’ houses. However, every time I did this I physically hurt soon after, so at a certain point I decided to commit fully to the diet because I came to realize that I wasn’t helping myself at all by being only partially on the diet, and I had to try it fullheartedly if I wanted to give it a proper chance. Once I made that decision, it was only a matter of a week or two before some of the more acute symptoms began to lessen, and within the first two months I not only felt significantly better, but my weight rose back to where it had been previous to the Crohn’s diagnosis and the inflammation in my digestive system decreased based not only on the symptom relief but also based on lab results.
4. How have your parents/family supported you during this dietary implementation?
The diet would not have been possible without the support from my parents. A majority of the food preparation is done by my parents simply because I have been kept extremely busy academically. Although I do find time to cook and bake, the daily availability of food is possible because my parents step in to help make sure I have what to eat. In addition to making much of the food I eat, one of the critical components of their support has been helping me learn my way around the kitchen so that I’m able to cook and bake foods I want, which will be necessary as my life progresses and I become more and more independent.
5. As a teenager, how hard has it been to implement the diet in a school setting? Are the administration and teachers aware of SCD?
Although the answer might surprise you, it has actually not been challenging to implement the diet into school settings. One of the most common concerns teens starting SCD have is that it will be “weird” if they bring their own food everywhere, however it is mostly just worry. In this day and age many people are bringing their own food due to increasing interest in dietary adherence to treat common conditions such as diabetes, as well as pursuing overall health. People may ask why I bring food the first time they see it, but a simple explanation revealing whatever I’m comfortable with is enough of an answer. Besides peoples’ initial curiosity, I’ve never been bothered by anyone about bringing my own home-cooked food and it’s never become an issue socially. If there’s any problem, it’s that people often want to try my food and then I get swarmed with requests to share my food again! In terms of the administrative purposes surrounding the diet, schools and programs have been very accommodating towards the diet. I have a 504 plan in my school for these purposes, and teachers and staff are made aware of the diet.
6. What are your recommendations for carrying quick SCD snacks or healthy lunches to school? What do you enjoy taking the most?
My favorite school lunch has changed periodically. During the winter I liked to take a thermos with hot soup, foccacia bread from your book, fruit, and a muffin. In hotter weather I like to bring cold smoothies and fruit, sandwiches made with foccacia bread, and cookies and juice. When it comes to quick on the go SCD snacks, whether for sports activities or going to the movies, I pack SCD-legal fruit strips, home-made crackers, and honey candies.
7. Are your peers supportive towards the diet? Is there any social pressure to conform and eat non-diet food?
My friends and peers are supportive of my diet. As I mentioned earlier, it generally becomes a non-issue for my friends and peers, becoming as normal to them as it does to me.
8. Tell us about some of the SCD activities you have been involved in, such as being a spokesperson for SCD at CCFA conference (where, when, what). How have you gotten your local CCFA chapter to work with the SCD?
In the past few years, my family has been mentoring new SCD families, and I often share my advice and perspective when new families have questions about the implementation of the diet from a teen’s perspective. In addition I have had the opportunity in April to talk about SCD and answer questions on stage at the CCFA NW yearly conference. This was following the SCD presentation that was given by naturopath Christine Bowen. She knew my story and thought that the audience would like to hear my perspective. I’m very fortunate to live in Seattle. The GI team at Seattle Children’s Hospital is amazing. They are at the forefront of IBD research. Our local CCFA NW chapter is also following the latest research and presenting it in their yearly conferences, as is demonstrated by the fact that this year they had SCD presenters for the second time in a few years.
9. Please tell us more about the CCFA camp you have attended while implementing SCD while you were there. How many times have you been there, and what has been your experience?
As I said, our local CCFA is doing an amazing job supporting people with IBD. Their summer camp, Camp Oasis, has been an enjoyable highlight of my summer for the past 5 years. Interestingly enough, the first summer at Oasis I met an older teen that was on SCD, and the opportunity to talk to him and see that he managed a complete teen life while on the diet was an instrumental support to my success in the following years. Since then, every year there are more and more kids in camp on SCD, both our CCFA and the kitchen staff at Oasis are doing an amazing job supporting kids that must maintain therapeutic diets. We each bring a week’s worth of food to camp, and it is warmed and served to us daily. This allows many kids that must maintain all kinds of therapeutic diets to enjoy the experience of summer camp.
10. Tell us more about the Leader-in-Training role you will have this summer at camp Oasis(?) where there will be 13 other kids expected to be following SCD? Did you help organize this situation?
[I would be happy to share this summer’s experience after camp]
11. What are some of the fun teen activities you do? Do you feel that the SCD has given you an opportunity to lead a "normal" teen life?
My life is in essentially every way like any other teen’s life. I go to a public highschool, carry a very heavy academic load, and I do after-school sports and other activities, all while strictly adhering to the SCD diet. I will be taking all my food to Camp Oasis and when I come back I will be participating in a four week pre-college game design course at Digipen. Although the four week course is catered by the Digipen kitchen, I will be bringing my own SCD food daily, while sitting in the cafeteria with the rest of my peers. As the diversity of my activities show, adhering to the SCD diet has not hampered me in any way and I am able to follow my passions and interests, not despite, but thanks to the diet.
12. You seem like a great spokesperson for the SCD diet for your age group. Do you ever consider writing about your experiences so that others will have better insight into this challenging diet?
I feel that right now, just like I was helped by talking to older teens on the SCD, I should be mentoring and helping others that may benefit from it. While I’m committed to mentoring other kids and teens on SCD, I also have many interests and hobbies that I’m pursuing at the same time. I’m not sure whether or not a book will be in the cards so to speak, but I am talking with sources at Seattle Children’s Hospital about ways to reach out and create a forum for kids and teens that must maintain therapeutic diets.