Kai is 13 years old and was born 01-01-00 in Ventura, Ca. He is one of six brothers and sisters. He was a healthy, chunky kid until about age five when he began to suffer from GI issues and other symptoms of undiagnosed celiac disease(CD). His symptoms began right after the passing of his grandmother which happened during a stressful period in our lives and close to Xmas as well. We believe all the stressful events within the same time period are what triggered his CD. At first we didn't think much about his symptoms since kids sometimes go through bouts of stomach issues. When Kai's symptoms did not go away we took him to the doctor and were told his symptoms were due to stress, probably from school, and they would eventually pass. Kai's symptoms did not pass and we returned to the doctor numerous times over the next four years. We were told he was stressed out, he had a stubborn intestinal virus, his symptoms would pass and lastly he was lactose intolerant. When the doctor told us Kai was lactose intolerant we were so relieved to finally know what might be wrong with him. We immediately switched his diet and after giving the diet a chance to work his symptoms did not go away.
As parents we could not help but think there was something seriously wrong with Kai. By now his symptoms had taken a toll on his body. His once healthy looking body and plump rosy cheeks were gone. He lost weight and had become really thin. He also got sick a lot and had the classic “failure to thrive” look common with children with CD. He was always tired and had low stamina for a boy his age. His life and what we did always involved being able to use the restroom when needed. He also began to miss a lot of school from being sick and he started having a hard time focusing in class. One of his teachers was convinced Kai had ADHD/ADD and at several parent/teacher conferences she suggested numerous times we should try medication to get Kai to focus. We never did since we knew she was wrong.
At another doctor visit, about the four year mark of being sick, the doctor suggested we try a gluten-free diet since the dairy free diet did not work. The doctor also scheduled a new series of tests, including blood and fecal tests, which would help determine if Kai had CD. Kai had an immediate reaction to the gluten-free diet and his blood work came back positive for CD as well. We were so happy and relieved to finally know what was wrong with Kai and for the most part all he needed to do was follow a gluten-free diet for the rest of his life. Our initial feelings were right, Kai does have a serious condition (CD) but it is manageable without harmful treatments and medication.
After his diagnosis the only major issue he had related to CD was building back up his immune system. Right after his diagnoses Kai was hospitalized for four days after coming down with the Swine Flu when that strain was spreading through the US. He still gets fatigued after a long day and he still gets pretty sick when flu and colds go around. Other than a few hiccups with accidental gluten poisoning, he is doing great now that he has been on the gluten-free diet. He is not 100% healthy and we know he could face future health issues from CD but for the most part he is doing well. We do notice the change and transformation from the gluten-free diet and it has literally saved his life.
Challenges faced while getting school lunches for your kid:
Kai is currently enrolled in a charter school through our public school system, so for now he is able to eat at home. Charter school is a type of home school where he has online teachers and a teacher who comes and checks on him once a month. Traditional home school is taught by the parents which is not what we are doing in Kai's case. He is able to eat when he is hungry and eat healthier food as well. For our situation it is working out best for now. Kai does have a desire to return to regular school in the future but for now he likes this type. We communicate with our kids and let them have a say in what they want to do, so charter school was something Kai wanted to do.
The biggest challenge for us as parents when Kai attended school was making sure he ate a healthy gluten-free lunch. Unfortunately Kai is not a big fan of fruits and vegetables, he is more of a meat and potato kid. He also loves breads and pastas. We had to get creative when we packaged his lunch to make sure he ate somewhat healthy. In elementary school they were aware of children with dietary needs but the school did not serve gluten-free lunches. Their main stance was making sure they did not get sick versus providing safe foods/meals. Even if they did we would not trust their cook/prep areas to avoid cross-contamination. They were very accommodating with classroom functions and parties involving food but that was about it. You still would need to bring a gluten-free dish or desert if the classroom had a birthday party or other function with food. In elementary school we would sometimes pack Kai's lunch but for the most part we brought his meal to school at the start of his lunch break. We are fortunate to live close to our schools since Ventura is not a large city. Kai's mom was always home so she was able to make him fresh healthy lunches and take them to school most days. We know this is not an option for all but it makes lunches a lot easier.
When Kai entered middle school (6th-8th grades) it became more of a challenge. For one, he did not have one classroom and teacher, he had 5 or 6 different classes. The school cafeteria was pretty much the same but this school had the option of purchasing other foods, junk foods mostly. As most know a lot of junk is not gluten-free. While Kai attended middle school we did what we always did, dropped his lunch off at school close to lunch time or packed his lunch. This school was even closer than his elementary school. On the rare occasion when we were not able to do either he would purchase a gluten-free snack which was probably some type of gluten-free chips and a drink. Kai preferred us bringing him his lunch or packing him a lunch due to the limited gluten-free food choices at school. If our school system was better equipped for gluten-free food preparation and offered a good variety of gluten-free meals Kai would have had no problem buying lunch at school.
Tips to help make school lunches easier for your kid:
The biggest tip we can give from our experience is pack your child's lunch to ensure its is healthy, gluten-free and free of cross-contamination. We are sure most parent's already know this but for those kids with stay at home moms and or dads, bringing your child lunch at lunch time is another option as well if convenient. Kathy is a stay at home mom and would do this quite often. Yes at times it was a bit of a hassle but proper nutrition and ensuring our child ate a healthy lunch was always worth the effort. It worked for us and we figured why mess with something that is working. Since he had been sick for so long from what he ate we did not mind this process if it kept him healthy. If your child is not eating right or is hungry most of the time he/she will not be able to focus and learn at school.
For those in a school district or a school that accommodates gluten-free students we would treat it like we do restaurants. We would make sure the kitchen area is set up for gluten-free cooking, make sure the staff is aware of cross-contamination and how the food is served/presented to avoid cross-contamination. Just common sense stuff, maybe tour the kitchen if possible, talk to cooks, staff, food servers. When you have a child with CD you become quiet savvy with the gluten-free lifestyle.
Are schools doing enough for kids with allergies?
We can only speak from our experiences with the schools Kai attended. When Kai was first diagnosed he went to a small public school at the beach near our home. We learned there were a few other kids with CD as well as others with food allergies in the school. This helped and the school was already familiar with CD and the gluten-free diet. The school was pretty pro-active during the remainder of his time there in regards to food in the classroom. They made a good effort to make sure these kids were not served food they could not eat when it came to class room parties, events, etc but they were really behind in the school cafeteria. We live close to this school so Kai's mom would take him a lunch on most days and on the other days we would pack his lunch.
When Kai entered middle school it was a different story. For one, the school was a lot larger with a larger school population as well. There were gluten-free options but unfortunately they were junk food items. This middle school was even closer to our home so we did what we could in elementary school, brought him lunch on most days or packed his lunch.
What could be done to make it better?Like most things, more can always be done. There is always room for improvement. The biggest and obvious area for improvement would be the school cafeterias, from serving gluten-free lunches to proper training/prep areas to avoid cross-contamination. With schools, it always comes down to the budget with getting things done. CD, non-CD gluten intolerance/sensitivity issues with kids is being discussed in schools a lot more than before, due in part to more awareness, more kids getting diagnosed, etc. Training with teachers, staff, kitchen staff is probably behind the times and needs to catch up just like medical staff training. CD and gluten related issues are not a “rare” thing like it use to be labeled. In our school district they are a long way off from serving kids with CD and other gluten related issues but hopefully that is soon to change.
School Lunch ideas:
- Sandwich – Good gluten-free Salami with sliced cheddar cheese on Udi's bread with mustard.
- Snack – Organic corn ships with small container of salsa, Roasted peanuts, A few pieces of gluten free beef jerky in a sandwich bag.
- Drink – Hansen's fruit drink, Troo Moo chocolate milk, or orange Gatorade.
- Desert – Reese's peanut butter cups
Black Bean Quesadilla (One of Kai’s favorites)
- Organic black beans
- Organic corn tortillas
- Left over chicken breast meat, tri-tip, steak
- Cheese (Kai likes cheddar or Monterrey Jack)
- Salsa (preferably fresh)
1. Mash beans in a bowl then heat up. Cut meat into small chunks. While its heating up smear black beans over tortilla. Place pieces of meat on top with some cheese.
2. Place the second tortilla on top. Wait a few minutes then flip. Cook according to how person likes tortilla cooked on each side. Everything melts together. If you let it cool so ingredients can thicken up you can use a pizza cutter to cut quesadilla into 4 pieces. Can be eaten warm or cold.
3. Place pieces in a tupperware container with a side of salsa. If you can find larger corn tortillas then the above is easier to make and its not as messy. Plus you can make one big one versus two since most corn tortillas are small in diameter.