My daughter, Grace, hadn't been feeling good for about a year. Not terrible, just not great. Frequent tummy aches, bloating, headaches, fatigue. Good days and bad days. Never bad enough to miss school. She has terrible allergies, and as a medical provider, I assumed she was intolerant to lactose. We eliminated dairy. It seemed to help a little. Grace is a determined child. She has very high expectations of herself, a lot like her dad - she comes by it naturally. I thought stress might be causing excess stomach acid, so we tried antacids with some benefit. Still, symptoms would come and go.
Eventually, her body decided to reject almost every meal, and that's when the light turned on in my head. Every time she ate, she developed a rash, an itchy face, and a sensation of warmth throughout her body. It lasted about 30 minutes, then went away. I thought to myself something in her food is doing this and it has to be something in every meal she is eating. That was my aha moment. At that point, I knew for certain her body was rejecting gluten. Gluten was the common denominator in every meal. She had the blood test in April of 2017 when was 12 years old. Sure enough, the test was positive.
Grace's test results. Elevated tissue transglutaminase antibodies are consistent with a diagnosis celiac disease.
If you are not already aware, this disease is highly genetic. I knew the rest of our family would need testing. We have four children and two of my sons would occasionally complain of stomach aches, but nothing like Grace. We were not in a big hurry to be tested. My priority was learning how to help Grace. She needed an endoscopy to confirm the diagnosis and to asess the severity of her disease. Not surprisingly, her endoscopy revealed severe inflammation and destruction of the lining of her small intestine:
Grace's pathology report
She was not absorbing essential nutrients from her food. Her young body was suffering the consequences of chronic inflammation. I knew eliminating gluten from her diet was imperative. We saw a dietitian, I spent hours researching online, I studied ingredients labels like a detective. I downloaded the gluten free scanner app on my phone and walked around the store scanning dozens of items. My family watched mom turn from type B into OCD overnight. I wanted my daughter to feel better and I wanted her body to heal TODAY. Where would I have started without online resources, apps, and blogs? I am so thankful for the wealth of information that was at my fingertips, but it would take a great deal of planning and effort to implement her gluten free lifestyle. I had no idea what we were in for!
Our First Gluten Free Shopping Trip
We took our first gluten free shopping trip the day she had her endoscopy. She was still a little sleepy from the sedation, but she was motivated to feel better. My mom was with me, so we had a memorable, three-generation, gluten free shopping spree. We went a little overboard clearing out the health foods section in the Festival Foods store. We filled the cart with gluten free bread, crackers, cookies, cake mix, flour, cereal, and oatmeal. Grace is a bit of a picky eater and I wanted to make sure there were things that tasted good to her. Many options would make that more likely.
The day of her scope
Traces of Gluten Everywhere
Just as important as purchasing gluten free food would be making our kitchen a safe place to prepare it. Cross-contamination would be 100% likely in our kitchen. (Cross-contamination is defined as the unintentional process by which gluten is transferred from one substance to another). The old non-stick pan we got for our wedding had 20 years worth of baked-on gluten. Our toaster was filled with dried up breadcrumbs. Our peanut butter was extra crunchy, not from peanuts, from toast crumbs! Our tub of butter was sprinkled with crumbs - you know what I mean. Gluten Everywhere!
Grace is passionate about baking. She started at a very young age. Like a lot of kids, she'd much rather eat her baked treats than her fruits and veggies. She made this clear through a written declaration at 4 years old:
Grace's anti-vegetable proclamation
For her baking projects, there is just no way I could allow her to use our old handheld mixer. There were ancient batter remnants that had become cemented onto the beater attachments. There was no removing it. Gluten is sneaky. It lives invisibly in tiny cracks, crevices, crannies, and holes. These traces of gluten collect and linger on surfaces only to contaminate your carefully prepared food. These are things that never crossed my mind before; now I was required to think about them daily – how to prevent cross-contamination.
Grace's gluten free cinnamon rolls
It took a few weeks to get the hang of preparing her food carefully and separately from everyone else’s. I will admit there were some pretty intense feelings of frustration. I missed the days when we didn’t have to think about gluten. It was a steep learning curve, and I did my best to remain positive for my daughter.
I remember the day when Grace broke down and cried about a month after her diagnosis. It was not about the food – it was about feeling isolated, singled-out, alone. No one else at school had celiac disease nor did anyone else at home. She packed her lunch every day as there were no gluten free meal options at school. Her group of friends enjoyed eating and gathering at the local Mexican restaurant. Unfortunately, there were no menu items safe for her. To modify her favorite recipes, she had to try and fail until the gluten free version tasted good. She had to eat differently than everyone else in her home. No fun at all!
The Kitchen Makeover
I didn’t replace everything in the kitchen, just the obvious: A new frying pan, new toaster, and a great excuse for a new toy I had always wanted – a KitchenAid mixer! If you are anything like me, you have a hard time spending money on expensive kitchen toys. My friends had recommended a KitchenAid for years. I had occasionally voiced that I wanted one (just loud enough for my husband to hear). When Grace was diagnosed, he surprised me with the kitchen gadget I had always wanted. WOW – it changed my life! I’m not sure who likes it the most – Grace or me! We designated this as our gluten free KitchenAid – no gluten allowed! One of the first things she made was gluten free cinnamon rolls. Grace is a great baker - if anyone can make gluten free taste good - it's her!
A few months down the road the rest of our family was tested. I remember where I was when I received the results. I was sitting in a lecture hall at a medical conference in Iowa City. (My alma mater - The University of Iowa!) I saw a message pop up on my phone. I quietly stepped out to listen to the message – I WAS FLOORED – literally sat on the floor! All of our kids tested positive – yep, four out of four kids with celiac disease! What were the odds?! My husband and I tested negative, but one of us had to be a genetic carrier (which remains a mystery to this day). We don't know of anyone on either side of the family with celiac disease.
It was enough of a challenge managing one child with celiac disease, but all four? How were we going to do it? I have a full-time career practicing family medicine as a P.A. Our family schedule can be off the charts crazy. We go to work, school, games, after school activities, summer camps, weekend tournaments, overnights, birthday parties, road trips, the list goes on. What is essential everywhere we go? FOOD! And what is not readily available almost everywhere we go? GLUTEN FREE FOOD!
In This Together
This would present a challenge. What will we eat when we travel? Are restaurants safe? Will they be able to go to summer camp? There are no gluten free options for lunch at school! What if they hit the road after school for an away game ? What will they eat at our friend’s wedding celebration? Do I have to send food with them every time they are invited to a friend’s house? The answer to these questions seemed overwhelming, but I was determined to find a way, one step at a time.
Instead of allowing a food restriction to control our lives, we would accept the challenge, make the change, and embrace it. The test results led to the obvious choice – we would become a gluten free family. We were in this together. Grace would no longer be in this alone. She was relieved to have someone with her on the ride. This would be a family endeavor. A new lifestyle for all of us.
Life in a small town means limited access to stores with gluten free products and zero safe restaurant options. Grace and I would take shopping trips over an hour away to go to stores that had a gluten free section. It was the most glorious thing to walk into a place with a whole aisle of amazing choices! Grace had already discovered many products she liked and disliked. She had been our guinea pig and didn’t even know it! (Many of our family's tested and approved items can be found under our Products we Love page).
Mamma Goes Wild
Four kids with celiac disease - Whoa -mama went a little wild. I gutted the cupboards, removing all of the gluten rich food, and packed it up in boxes to be donated to the local food shelf and the grandparents. I got rid of old pots and pans, I threw out the colander, the cutting board, and old plastic and wooden utensils. I thoroughly washed everything that remained: plates, cups, silverware, bakeware. I scrubbed the cupboards and drawers to remove tidbits and traces of gluten that were left behind. After that, I sanitized it all again!
I left one small cupboard space to store a few gluten essentials – my husband was not giving up his peanut butter and jelly sandwiches or his chocolate-covered granola bars! We turned our broom closet into our gluten free pantry – a nice way to keep our kitchen stocked for four hungry teenagers. I made sure the kids had their own separate peanut butter and jelly supply by clearly labeling them.
Mama clears out the cupboards
Our little stash of gluten
Our broom closet transformed
The Morning Routine
Each child would now have to take their own lunch to school. Preparing supper meals took enough thought, I dreaded the idea of having to plan lunch meals as well. I took for granted the lunches provided at school! Each morning our counters are covered with butter, bread, fruits, veggies, cutting board, cheese, peanut butter, yogurt, ice packs, lunch bags, lids and containers galore! It looks like a freight train came through and unloaded in our kitchen. Over time, we have developed a routine, a pretty good process that involves good clean up too! Thankfully, they are old enough to fix lunches for themselves.
School lunch prep - this is a busy kitchen!
Inspiration Times FOUR
Our family has learned a lot together over the past three years. We know what it takes to safely prepare food. We have our favorite gluten free recipes. We know how to eat safely when we are away from home. This process has taught my children to be mindful of their dietary choices. There have been many times when I know they were tempted to eat something they could not – but they have learned to resist that temptation. I know they are not perfect, but they have learned to accept this lifestyle and to embrace it. They have learned so much responsibility. Little did I know this diagnosis would be a wonderful opportunity for growth (both figuratively and literally!). I am so proud of them! They are my inspiration.
Blessings in Our Story
I personally understand the level of commitment it takes to live a gluten free life. I used to take for granted the fact we could eat snacks or meals without much thought. Wow – how things have changed. But, there are so many blessings in our story:
- Our children were diagnosed just before hitting puberty, ranging in ages 9-14, which are some very critical years for growth. I am thankful they were diagnosed before reaching adulthood, while there were still opportunities for growth and development.
- In my opinion, all four children with celiac disease is better than just one. I know that sounds crazy, but it would have been so difficult for just one of my kids to make this change while the others continued to indulge in gluten. For us, it's a team effort and we are all on the same team!
- Because of the diagnosis, our daily diet includes fruit, veggies, eggs, dairy, fresh meats – the good stuff that so many American families are lacking. Even Grace has learned to like veggies! And yes, we bake and snack on our share of naughty things too! But gosh, they taste so good.
- There are so many wonderful gluten free products on the market now compared to 10 or 20 years ago. In fact, the market is exploding with great products. Manufacturers are meeting the demands of the gluten free consumer. What a gift.
- If you were to shop around and pick a disease for your children – this is it! I thank God I am not taking my child to his chemotherapy treatment, or frequently running them to doctor appointments. A change in diet will fix it! Amen.
Help For You
I have some helpful insights to share as a result of our experience. To get you started, I will share a few suggestions that I would like you to consider:
First, if you have someone (especially a child) living in your house with celiac disease, I think it is important to join them in a gluten free lifestyle so they are not alone. At least one other person taking on this lifestyle would make it feel more like a team effort. There is more motivation to succeed, and less chance of giving up, when you have a teammate who is facing the same challenges. From what I have experienced in my own home, it would be very difficult psychologically for a child to face these changes alone. This may seem like an absurd suggestion, but it is one worth considering. It may or may not be the right decision for your family.
Secondly, you must allow others to help you. If your child is invited to a friend’s house and the parents want to provide a gluten free meal – allow them. If school wants to be educated on how to safely prepare lunches for your child – allow them. If Grandma wants to prepare a gluten free treat for your child – allow her. It takes a little time and teaching on your part – but this website will help you do that in a way that is not so painstaking. I have created special posts, graphics, and letters to help you educate friends, parents, grandparents, teachers, and schools. These materials were developed to take the pressure off of you. Have you ever heard the saying "It takes a village to raise a child"? The glutenfreementor.com was created not only to help you, but to help raise awareness within the village!
Paying it Forward
My title says it all – my mission is to be your mentor. As a physician assistant in family medicine, I have the privilege of reaching out daily to patients in need. As a mom, I am blessed with the opportunity to teach my children life skills. I am in my happy place when I can help people. I have learned so much on this journey and I want to share my wisdom with you to make your life a little easier. I could not have managed this lifestyle change without the invaluable knowledge and advice shared by others. You might say I am paying it forward.
So, now you know how The Gluten Free Mentor began. I know you can help me continue my story. I would love for you to take a look around my site. Check out my blog and favorite products page. I know there is something here for everyone!
Wising You the Best on Your Journey,