Lonely but Not Alone
Written by Sylvia Davies of Feeding Carl
I know I am not alone in my experience. My 7 year old son was growing sicker every day and, unlike other childhood illnesses in the past, he wasn’t getting better. In fact, he was getting worse.
It was frightening to watch my child become increasingly ill with no end in sight. I spent hours on the Internet and reading books trying to find out what was wrong with him, lost portions of many days to waiting rooms and emergency rooms, fed my child a series of different pills and rubbed him with creams and salves – anything to help heal him when nothing was working. I would wake up in the middle of the night with the deafening buzz of information, choices and decisions hurling through my mind.
Finally, after nearly two years of deteriorating health, my son was diagnosed with Crohn`s Disease, an autoimmune disorder that causes inflammation in the digestive system. I decided to see if it was possible to keep him away from a lifetime of drug dependency and control his Crohn’s Disease by changing his diet.
As I look back I realize that initially we took baby steps that felt like mammoth strides when we started to change my son’s diet. Initially, I reduced the amount of wheat in my son’s diet, switched to goats’ milk, and increased his intake of fruits and vegetables. I began cooking with spelt, which has less gluten than wheat. Including more fruit and vegetables in our diet was manageable. The challenge was getting my son to eat them.
At this point we had our son tested for food intolerances. Food intolerance (also called food sensitivity) testing is controversial because there is no gold standard for it as there is with allergy testing. I was aware of this but felt it might provide us with some information on what was the best food to feed my son. His health continued to deteriorate and I was desperate to find some answers.
Try to imagine the alarm bells that went off when I saw the list of foods my son could not eat – gluten, dairy (including goat milk), eggs, sugar, soy, peanuts, nuts, sesame seeds and most fish. It was a given that he could not tolerate food colorings and food additives.
I had no idea what I was going to feed my kid with Crohn’s Disease. I was finding the diet too difficult to implement. Then it happened. One evening I got the talking to. It comes from that stern voice that hides in the back of my head and only speaks when I am about to break. Then it yanks on my earlobe, insisting I listen.
After the talking to I walked to my basement and found a large plastic tub, which I set in the middle of the kitchen floor. Then I begin opening cupboards. Everything with gluten, dairy, soy, eggs, peanuts, nuts and sugar went into the tub. Out went the pasta, soy sauce, cereals, peanut butter, soup stock, flour, sugar and anything else that isn’t included in our new diet.
My cupboards were startling and bare when I was done. There is one exception to the cupboard clearing and that was the food my daughter ate for breakfasts and lunches. I knew this was a challenging time for her, too, and she needed to have some familiarity through all the changes living with a sick brother created.
I set the tub at the front door and offered whatever was in it to friends as they came and went. It cleared out over the next week as my cupboards filled with new foods.
The first week after changing diets my usual 30 minute dash around a single supermarket took me over 2 hours at 5 different stores, and I still didn’t have everything I needed. I read every label and purchased foods that I had never heard of AND still had no idea what I was going to cook. Fortunately, the amount of time it took me to shop decreased exponentially as I became familiar with our family’s new diet and where to purchase the specialty products required. Once it dawned on me that I didn’t need all those specialty foods, shopping became even easier and far less expensive.
Scouring every aisle of the store I realized the gluten free, lactose free, soy free, egg free, sugar free and nut free snack food was a rare gem. I had always cooked most of my food from scratch. While walking through the store it hit me that now I was going to have to cook everything.
In the beginning cooking didn’t go smoothly. I have always loved to cook and experiment with food but I found my son’s new diet stretched taut my culinary imagination and skills. I massaged recipes until they were unrecognizable.
The process took a lot of experimentation and more food than I care to admit was tossed in the garbage. There were the loaves of bread that bore a strong resemblance to hockey pucks, chicken fingers that were so rubbery they bounced and desserts that sizzled into nothingness.
Just as shopping grew simpler, with each recipe I developed it got easier to combine foods and ingredients that my son’s system could tolerate.
I learned that diet really did help improve my son’s health. And I learned so much about food along the way. I discovered that the very restricted diet he was on actually removed the 8 most common food allergens, which make up 90% of food allergies. I had no idea as many people reacted to soy as dairy, that a whopping 75% of canola was genetically engineered, that gluten, soy and sugar were in so many products and there was not a single cookbook on the shelf that I could use without having to check every recipe.
Also, I learned there are many people caring for loved ones, modifying diets and dealing with severe allergies and intolerances and that caring for a sick child is often a lonely existence but a rewarding one.