Over the past 10 years, I have cooked for and/or taught how to cook, a number of people with severe allergies and food sensitivities, including severe celiac. We serve clients on elimination diets, trying to find the root of their problems, or on recovery diets, dealing with the consequences of eating foods that didn’t work for them for too long. We take care of people with lists so long of restrictions and limitations, they don’t even know how or what to eat. Dining Details has become a resource for doctors, nutritionists, dietitians, physical therapists, and other professionals to send their patients who need help learning how to eat again. Being face to face with food allergies has been a constant reminder to be grateful and feel so blessed to not have to deal with such challenges. I can remember many times thinking, “Thank goodness- we are so lucky to not worry about these things.”
That was then, and this is now, and we are lucky and blessed, but in a different way than I expected or thought back then.
When the doctor suggested that we eliminate gluten, dairy, sugar, corn, and soy from Johnny’s diet, I was open to anything that could possibly help him. When you are on the outside, looking in at someone with a food sensitivity, you think, “that would be so hard to eat that way” or, “I could never do that.” I am not saying that eliminating those 5 ingredients from a 2 year old’s diet is EASY. I am saying that when you are the mom, and you are seeing your child get so sick over and over, and deal with so many challenges that other kids his age don’t seem to experience, and your family is so exhausted from a year of sleepless nights, you are willing to try anything to make it better. No one understands a child like their mom- and I knew Johnny just wasn’t well.
Sleeping was always hard for John, but it got really bad at about age 1 and a half. For over 6 months, we dealt with a child who hated his bed, had sleep anxiety, and woke between 5 and 20 times a night. He came to sleep in mom and dad’s bed nightly. Night after night, everyone was up, playing musical beds, trying to usher him back to bed, then giving up and conceding to sleeping all together. Nothing like a restless toddler who’s all knees and elbows squirming around a queen sized bed with a mom and dad trying to run a business and make a living, working 6 days a week on no sleep. Needless to say, mom and dad were exhausted all the time.
John would want to get up at 4 or 5 am every morning, and we would wake to him screaming, throwing temper tantrums at those hours, not knowing how to calm him or what to give him. All he wanted all the time was milk. So, that’s what we gave him. Milk, just to quiet him. And it did, for a few minutes, and we were back to the screaming and crying. This was our life, day after day after day. You can imagine what that does to parents, and the quality of parenting that ensues. Robbie and I half joked that John was pretty lucky to get such amazingly strong and loving parents- even though we struggled day to day, we managed to keep our wits most of the time. But it was hard. We were exhausted, frustrated, and wondered all of the time…. what were we doing wrong? What was wrong with our child? Did we do something in a past life that was coming back to haunt us? Friends felt bad for us, family worried about us and about John. We just didn’t know what to do.
John was always a pistol- from day one, a strong willed child. But, it seemed to be getting harder and harder to deal with him or train him. He was an emotional mess. He wasn’t sleeping, so he wasn’t getting the chance for his body and mind to develop properly. He communicated by screaming and pointing, and lost it about every time he tried to communicate something. We were at such a loss, so frustrated right there with him. We learned not to take him a lot of places, and when we did, to expect there would be a scene. He was exhausted, not feeling good, not able to communicate. In turn, he was falling behind socially.
At 1.5 years, after his 6th ear infection, and 6th (or more?) round of antibiotics, we took matters into our own hands and researched ear tubes. We found an ENT who told us John had been hearing everything “under water”- and that he probably couldn’t sleep because his ears were throbbing. Or he had vertigo. We thought that this explained everything- his imbalance (and subsequent accidents, including losing a tooth from a fall at 13 months!), his sleeplessness, his incessant crying, his frustration, his moodiness. We got right in line to get him ear tubes, so excited for the improvements it would bring. After the surgery, (which was in August of ‘10) we could see that John was hearing things he had never heard- perking up to common neighborhood sounds like owls and airplanes. We kept waiting for his speech to suddenly explode, for the crying to subside, for his behavior to improve. And the sleep… we were so excited to just sleep.
The sleepless nights continued. The screaming and crying continued. We were due to have a baby in late September, and just wanted to rest and relax before adding any more stress to our lives. John was hearing, and not getting ear infections, but nothing was easier.
We saw a family therapist who suggested that John had basically learned to “work us”- his sleeping patterns were a result of behavioral conditioning. We just needed to keep returning him to his bed. We needed to give him rewards for sleeping all night in his bed. More sleepless nights. And prizes that stayed on the top shelf indefinitely.
Our pediatrician was worried. Of course John was having a hard time with speech and social development- he needed his sleep! His brain needed sleep! And, she understood… mom and dad needed sleep to be good parents! She thought his body clock needed resetting. Something was waking him through the night, and we needed to repattern his habits. We started giving him melatonin each night. Although it helped get him to sleep, he still couldn’t stay asleep. After a month of that, we stopped the melatonin, not wanting his body to become dependent on that to fall asleep.
I should also mention that we had already gone over all of the “obvious” sleep training items- the bed time routine, the full tummy, the comfortable bed… we had even bought John his own twin bed with “truck” blankets and “cars” pillows… way back when we thought he just didn’t dig his toddler bed. By the time we were seeing therapists and doctors, we had really tried everything we THOUGHT could be “it.”
Around Thanksgiving, we met with a social worker at the regional center. We had John assessed for speech delay. At the RCSD, they do a comprehensive assessment to identify where kids are on a variety of developmental milestones. Not surprising to learn that John was a year ahead of himself in some areas- his motor skills and comprehension were very advanced. His speech and communication, though, were a year behind. (Yeah, you’d be pretty frustrated too with a 2 year gap between comprehension and communication!) Some good news; he was not on the autism spectrum, which of course we had worried about with his constant explosive tantrums and inability to communicate calmly. We were approved for speech therapy, and also set up with a behavioral therapist to help us with the thing that was central to every piece of John’s development… SLEEP. We would start a weekly speech session, and a bi-weekly meeting with our behavioral therapist to work on sleep and following that, techniques to train John to follow directions. We were SO ready!
The behavioral therapist was extremely helpful. She has been working with kids like John for 17 years! Over the months she worked with us, she gave us plenty of techniques to work on, and many of them have helped us be better parents and to train him. But, on the same token, it was obvious that John “stumped” her every time we worked together. She seemed to be searching for answers based on her experience and expertise, and with John, she really didn’t have all the answers. We could tell that he was a unique case. When our approved time with her was over, she got us approved for more sessions… I didn’t know if that was a good thing or not 
Kind of a catch 22.
In January, John ended up in the ER at Children’s. Robbie was in Panama working, and both kids and I were sick. The baby and I felt pretty awful, but John got it bad. He came down with asthmatic bronchialitis (for the third time in his short life)- and was running temperatures of 104 degrees every night. We were in the doctors every day for breathing treatments, and finally in the ER on a Saturday with severe respiratory distress. A chest X-ray cleared him from suspicions of pneumonia, but he definitely was having a hard time breathing. He was on a steroid medication to help with the inflammation in his lungs. The ER visit was one of the worst days of my life as a mother, and that whole week was one of the hardest weeks of my life. John on steroids was something I decided I NEVER wanted to experience again. Not only did he feel awful, as one does with a bad flu, but he was a complete mess from the steroids. The term “roid rage” takes a whole new meaning when you already have a toddler that is beyond frustrated, can’t communicate, and screams to get what he needs. (Did I mention I was solo parenting and running the business through this time!?) Every step we had taken with the speech was reversed with the meds, and he screamed and pointed and literally “raged” for 5 days. Being John’s parent had always been challenging, but this particular week, being a parent was REALLY hard.
Once JOhnny recovered, we went to see a homeopathic doctor at Scripps Integrative Health, begging him for help. He gave John some herbs and asked me (as John was bouncing off the walls) “Is he always like this? Does he EVER listen to you?” I felt as small as a bug, and like the worst mom ever. Why was my child so hyper, so defiant, and so uncontrollable? I tried to justify his behavior. I don’t know if his concern just came off as judgmental and condescending. Well, anyway we didn’t go back to that Doctor.
In February, my massage therapist/nutritionist friend, Marissa, suggested a handful of practitioners that might have something to offer us to help John. The one that intrigued me most was the chiropractor who took a special interest in helping children. She had some incredible stories about kids he had helped. We scheduled an appointment and went to see him.
Right away, I felt comfortable and cared for, and intuitively, I knew, this man was going to help us. I explained our situation with Johnny. The moods, the screaming, the behavior, the sleep issues, the speech delay, the ear infections, the respiratory problems, the over all feeling that John simply didn’t feel well. I told him I thought that John was a bright, happy, energetic child, being brought down by something I couldn’t put my finger on. I wanted him to “fix” John, to help him feel better, and help our whole family move out from this exhausting place we were stuck in. I told him I never wanted to see another antibiotic and I certainly could go through the rest of my life without seeing John on steroids. He listened like an old wise man (he’s not old- probably not any older than me- but wise beyond years) as I laid out our story. His compassion and genuine concern was clear. He did some testing and probing and asked more questions. By the end of his assessment, he made a few recommendations, suggested some herbs, and said with absolute conviction: remove all gluten, dairy, soy, corn, and sugar. I tried to tell him that we ate healthy at home, John didn’t eat much processed food. He said it again: remove these items from his diet. Feed him chicken, fish, veggies, rice, fruit- NOTHING from a package. I thought, I’m a chef! He already eats so healthy! I can do this! NO problem.
Right. What does a 2 year old LIVE on? Milk, cheese, pretzels, toast, quesadillas, cereal, frozen waffles, breaded chicken… you get the point. What in the world were we going to feed him? Would John STARVE? What I have learned is that John will eat when he is hungry… and although he won’t east ANY THING, he will eat A LOT more things than I ever thought he would. When he got really hungry, he showed me he could eat things that he would have turned his nose up when he knew he could get milk or snacks. I was shocked to see him eating bananas, apples, quinoa salad, turkey meatloaf, curry, balsamic chicken, fritattas, raw carrots, lentil soup…. he was eating better than ever!
THe first couple weeks of “the diet” were hard. He definitely was super moody from the withdrawals from milk, gluten, and sugar. Even though we had been feeding him well, and not giving him nearly what most parents allow with sugar and snack foods, it was still hard to change everything cold turkey. So there was that. We are working parents, so we have a lot of people watching John- from our regular nanny to other baby sitters and friends, grandparents, etc. We had to train everyone on the diet. Those 5 ingredients are in EVERYTHING! It was really hard on all of the care takers to re-learn how to feed John. And, heaven forbid, he gets too hungry and blood sugar drops- never a good thing for ANY toddler! Third, we had to adjust OUR life. We couldn’t bring home our favorite pizza, or burger lounge, or mexican food, or thai… everything was off limits. We cancelled dinners with friends, not wanting to put John in front of things he couldn’t have. The diet wasn’t just John’s- it became all of ours. Lastly, John has friends and cousins- we go to birthday parties! One of the hardest times of the diet was only a few weeks in, and all John wanted was the cake! There was tons of food everywhere, all things off limits to John. And that big, beautiful cake… calling to him. Needless to say, there were several “melt downs” that day. During cake time, he and I went down the street to play at our friend’s house, just to avoid the situation. It was hard, but in hindsight, so worth it.
As John’s system has gotten cleaner and cleaner, he has turned into a well behaved, healthy, energetic, happy child. After more than 3 months without gluten or dairy (we did go back on corn and soy, although we don’t get much of it, we aren’t so crazy about limiting that. Sugar is still off limits, but occasionally he gets something with honey or maple) we can see some very obvious improvements. John SLEEPS! He goes to bed at 8 pm, and wakes around 6:30 most mornings. He rarely wakes in the night, and if he does, it takes only a second to go in to reassure him and tuck him back in. We wake up to cuddles and kisses and him saying “TV” or “milk” (we do hemp or oat milk these days)- not screaming and pointing. He has a word for almost everything, and calmly tells us using his words what he needs or wants. It’s nothing sophisticated, but its effective communication. He is so fun to be around now- we are constantly cracking up at his funny antics or with him as he goofs around lovingly. We have been able to train him on things that we just couldn’t master before a few months ago. He is manageable, trainable, and usually does what we ask when we use our best parenting techniques. John IS a strong willed, determined kiddo, but he’s a GOOD boy, and wants to feel good, be healthy, and make us happy. The combination of his sleep, our sleep, his subsequent improvements in speech and communication (and effectively social skills) has changed our life as a family. Four months ago I would not have believed this was possible.
One afternoon, John ate some playdough. It was like we rewound and were back in our cycle- issues with bed and total sleep anxiety. The only way we could all sleep was if one of us slept next to John. He was clawing the walls and sweating. That was the only night in the past 3 months we had any issue. Playdough is made of flour. You do the math.
We did see Dr. Amonette for 6 weeks following the start of the diet. He adjusted John as we went through the steps, and I know that helped the process. I was glad to tell our behavioral therapist thank you for getting us approved for more sessions, but I didn’t really see any reason to meet with her any more. Our challenges in raising John are completely manageable now. The challenges he faces as a toddler are the same as other kids his age. He has occasional tantrums, sometimes bullies his sister, and once in a while runs away from us to be devious. They are all challenges that we can get through and learn to deal with together. I believe that Johnny is the kid he always wanted to be and that we needed him to be- we just had to figure out how to get him healthier.
Everything in this history is linked. Food keeps us healthy, but it can also keep us from being healthy. In John’s case, we suspect that he was caught in a vicious cycle. Antibiotics were ruining the lining of his intestines as he developed, so his body couldn’t hang on to the nutrients. The dairy caused dampness and mucous in his body, leading to more ear infections and later respiratory problems. Each time he had antibiotics, it fed the original problem. As the lining of his intestine became more impermeable, the gluten attacked his body and his brain. He wasn’t able to absorb his nutrients as the gluten wreaked havock. (Sugar affects ALL kids- it’s just more pronounced now that we have removed everything else). We caught it early, and I am so grateful that we found someone who could see what was happening and offer suggestions on how to help my baby. I don’t know if John would have eventually become celiac, how many more times we’d be giving him antibiotics or visiting the ER, or what more problems could have ensued. I am confident that the changes we have made for him are not only important to his body’s health, but his chances for success in school and socially. He will catch up quickly and be closer to living up to his full potential.
I think we will eventually be able to let down on the severity of the diet. We will try adding dairy and gluten in small doses eventually. For now, we will stay where we are and be grateful. I am surprised and impressed that when there is food around that he can’t have, I just say, “John, that’s not for you.” and he listens. Just last week a plate of snacks sat on the table through dinner with friends- he ate all the carrots and hummus, didn’t touch the crackers that he would have once been all over! Even at the young age of 2- he is learning what makes him feel good, and makes him feel bad. It’s remarkable.
And, do I need to reiterate? We are all sleeping. We are all doing better because John is better. When you weigh the alternative, going gluten and dairy free in our house and making changes as a family is not hard… it saved us.
If you identify with any part of this story, try a 21 day challenge. It took that long to see any changes, and it takes 21 days to make anything a habit. What do you have to lose!? You have only to gain. There are no negative side affects of reducing a toddler’s diet to a whole foods diet for 3 weeks. You will be surprised at how obvious the affects of sugar are on a toddler once you have eliminated it from their body. It’s like night and day. Now we start Johnny’s day with nuts, chicken, beans, or eggs. Even GF/DF waffles and muffins affect him- starting the day with starches makes for a more challenging day. I cannot tell you how pronounced the difference is now that we have come this far. If any of this resonates with you, I am more than happy to share how we have done it and tips for success.
Food is our life at our house…. the irony is that what we thought was nourishing our family was killing us. Johnny was saved, he’s healthy, and we are all going to make it….
A special thanks to Dr Landon Amonette at Clothey Wellness and Marissa Workowski with Hand in Hand Wellness.
I love teaching parents how to cook healthier for kids, toddlers, and babies. Get a group of moms together and let me come teach you. Your kiddo will thank you some day.
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