How a Gluten-Free Diet Helped Heal My Son
Soon after my 12-year-old son was diagnosed with Crohn's disease in 2014, his new gastroenterologist – the first was a terrible fit – pointed out that my son had focal villus flattening in his duodenum. This could be indicative of celiac disease, although his blood markers were normal. She suggested he switch to a gluten-free diet.
My son had lost a ton of weight before he was properly diagnosed. He was slowly gaining after starting steroids but still looked skeletal. The thought of restricting his diet when he needed to pack on the pounds was terrifying. And he'd already been through so much: horrible pain, invasive tests, and an unexpected hospitalization. Now I had to tell him that the foods that brought him comfort were off limits? It seemed cruel.
But I trusted this doctor and would do anything to help my son heal. I decided to commit to a trial of a gluten-free diet. I knew I needed a game plan to have any chance of success. Here's how I helped my son move forward.
Explaining diet changes to a child with Crohn's
I gathered alternatives to his favorites (cold cereal, mac and cheese, chicken nuggets, muffins, etc.) to have on hand before we started. This involved a lot of Googling, reading of reviews, and posting questions on Crohn's community forums. Even 8 years ago, great-tasting, gluten-free food was a good deal harder to find. There's a lot more out there now.
I made the rationale behind the change in my son's diet very clear. As a boy on the autism spectrum and a concrete thinker, he needed a super simple explanation. We were trying this diet to see if it would help him feel better.
Making his new gluten-free diet fun
I adjusted my attitude. I already felt guilty about what my son was enduring, and it would have been easy to view a change in diet as one more thing I was putting him through. Not the most rational mindset, but one I've heard many other parents share. To be successful, I had to find a place for those feelings so they wouldn't spill over onto my son. I find journaling helpful for getting negative thoughts and emotions out of my head, but exercise, meditation, and sharing with other parents made a difference, too.
I presented the diet as a fun adventure. It was something we could explore together. We bought colorful cookbooks. We tried new dishes or new versions of old favorites. And as he began to regain his strength, we looked for restaurants that had gluten-free options.
My son loved calling restaurants and giving his set speech: "Hello, I'm on a gluten-free diet. Do you have any menu items that would be appropriate for someone like me?" Thanks to his diet, we have tried cuisines
– and restaurants – we might never have tried otherwise. And each year the options expand, so there's always another experience to share.
Diet is an important piece of my son's Crohn's recovery
Now my son loves being gluten-free. He sees it as an area of expertise and is great at advocating for himself by letting others know what he can and cannot eat. In fact, advocating for his dietary needs has helped him advocate for himself in other areas. He values his own viewpoint and knows that he deserves to be treated with respect and compassion.
Most important, he's a healthy, active young man whose BMI is far from the danger zone. It is all due to his diet? Likely not. But I have no doubt that it has made a significant difference in his continued recovery. I wish you the best of luck should you give a special diet a try with your child.
Will you tell us what life with IBD is really like by taking our In America survey?
Join the conversation