In February, 2017, my son, Henry, was diagnosed with early onset Crohn’s disease. He was only five years old. After three episodes of having Henry wake up in the middle of the night with stomach cramps and slight vomiting, I rushed to the ER, thinking it may be appendicitis. But a diagnosis of ‘I don’t know’ led me to a GI that just so happened to be an expert in the chronic illness known as Irritable Bowel Disease.
I was shocked at what the initial visit held for us: stool tests, blood work, and allergy testing. I immediately started making more appointments with other doctors, because I was certain the IBD specialist was just eager to label yet another child and prescribe a medicine that was going to do more harm than good.
The Crohn’s Diagnosis That Changed Everything
I was attending my oldest son’s baseball game when I got a call with the results, a week later. I could barely hear the doctor. Everything seems to be moving in slow motion as he began to describe the procedures he thought we needed. I watched Henry playing in the dirt with friends while we set up a date for an anesthesiologist to speak to me. This conversation led to a colonoscopy, under sedation (my son was brave beyond his years).
Before Henry awoke from sedation, we received the fateful diagnosis: Crohn’s disease. The doctors were ready and eager to give him a biologic medication called Remicade. I knew nothing of Remicade at the time, but I soon learned that the harsh medication basically wipes out the immune system to prevent it from becoming overactive. More specifically, the drug is intravenously administered during a four-hour period, while the patient (who in our case was five years old), sits quietly and still.I was horrified. I looked at my husband, hoping it was not as big of a deal as it seemed to be. He looked at me with sympathetic eyes, and I knew this was bigger than I had feared.
I immediately started researching IBD. I looked up forums, food restrictions, diets, anything to get us away from the IV in his arm that would take his immune system and flip it inside out. I came across a diet called SCD – The Specific Carbohydrate Diet. The diet involves cutting out all grains, sugar, dairy, starch of any kind including those in salt, herbs, mustard, etc. It was known to be the main diet to suppress symptoms and bring healing for many who suffer from autoimmune and inflammatory diseases. As I read, I felt hope, but I also felt every inch of my son’s freedom with food wipe away. Christmas cookies, Halloween treats, ice cream visits, vacation treats, Easter chocolate bunnies, birthday cakes, cupcakes, preschool treats, restaurants, pizza nights, taco nights, you name it — popped into my mind. I cried, and then I decided I had to give it a try. My life was going to be dedicated to this diet.
Adapting To A New Diet For Crohn’s Disease
I had done a lot of baking prior to the diagnosis, staying up late to make treats that would make my two sons swoon. Now I had to change my whole baking/cooking model to fit this new diet for Crohn’s disease. There is an SCD alphabetized “Legal/Illegal” list that guided me as to what was allowed. These are not foods I had heard of. I had to study, look up, and memorize. I would spend hours in one aisle of a grocery store reading labels. People must have thought I was insane.
But, after hours upon hours of trying recipe book after recipe book, online searches about food, links to autoimmune illness, and a billion forum questions, my son, who is now six years old, has been medication and symptom free for more than a year. Remission was the goal — and we’re almost there! My son no longer suffers any IBD-related pain and is within normal range on all blood and lab work.
To make sure our son was truly improving, we had to conduct a MRI scan on him, which was followed by a live cam colonoscopy. Our son was the first five-year old in Los Angeles county to do an MRI awake (most kids are sedated). Not only did he get in the machine by himself, but he managed to do breath holds at 20 second intervals for an hour. It took me months to get him in, as no one thought he could do it. But we didn’t want to expose him to do a CT scan or other types of radiation type imaging. I told my son if anyone could do it, it was him. I told him to prove those doctors wrong, and boy did he. I stood at the base of the MRI machine reading books (very loudly) and making silly faces while being told by the tech to keep it down. I didn’t stop, and thankfully it worked. The final results of all these tests proved the diet was working! Although my son still has minimal inflammation in his TI (terminal ileum- connecting the small and large intestine), he has symptom relief without further progression of the disease.
Seeing Henry rosy-cheeked and happy has made this whole struggle with an alternative diet for Crohn’s disease worth it. When other children are screaming for another scoop of ice cream my son has his honey-sweetened pumpkin bread made with almond flour — or one of my other homemade treats that his sensitive gut can handle. When all others at school are enjoying a popcorn party or ice cream social, he watches and waits until they are done and he can go back to playing with them. Our family, including my older, 11-year-old son, eats meat or fish and organic vegetables for dinner most nights. Henry sometimes apologies to his older brother for having to eat an SCD meal, and tells him he can have candy or ice cream if he would like. And often, my oldest will take him up on it!
Pure Foods, Deep Healing
At a very young age, Henry has had to learn about allergies, intolerances, inflammatory illness, autoimmune illnesses linked to, cancer — the types of things most adults are clueless about. With so many studies on IBD and autoimmune diseases coming out daily, there is so much to stay on top of. Thankfully, I have found a doctor who is open to questioning this journey with trying new foods and possible medication when needed.
Meanwhile, I continue to make all the grain-free, starch-free, sugar-free treats that keep my son happy, like his favorite strawberry lemonade fruit roll ups!
Nicole Isola is a mother of two vivacious young boys, one of which is a Crohn’s disease warrior. Her life is dedicated to making sure healthy eating leads to healing and wellness for her son living with Crohn’s. She is an advocate of the SCD diet healing this autoimmune disease and hopes that food will become a well known source of controlling disease.
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