I burst into tears when the doctor told me I had celiac disease. At 14 years old, the first thought in my mind was, “What? I can’t eat spaghetti and meatballs anymore?”
Luckily, the world has come a long way since I was first diagnosed. Today’s grocery stores are loaded with gluten-free alternatives, and restaurants that don’t offer a gluten-free bun for hamburgers are way behind the times.
But that doesn’t make the transition to living a gluten-free life any less overwhelming. The day you realize your future health would be dramatically improved by eating a gluten-free diet is also incredibly stressful.
Navigating your way through all the recipes, products, social gatherings, restaurants, trends, and stigmas to the point where living gluten-free feels like a normal part of your life is not always a smooth and straight course.
We asked seven people who have been down the gluten-free path to share their experiences; read on for helpful tips to help you on your gluten-free journey.
‘We aren’t going to suffer’
“I was extremely emotional about my new diet restrictions. I missed gluten like an old friend and felt abandoned by my bestie when I had to give it up. There were tears, grocery store aisle meltdowns, and adult-beverage-induced rants that made my husband intervene.
‘We aren’t going to suffer,’ he assured me. ‘I’ll go gluten-free with you,’ he said. And with that, our whole house was a gluten-free zone. He rocked my world helping me create countless gluten-free and low-carb favorites. It felt like my bestie had returned.
Support is everything. We decided to share our love of gluten-free, low-carb cooking and baking through a blog, supporting others who are going through that same thing.”
— Meagan Esler, blogger living with type 1 diabetes
‘I focused on what I could eat, not what I couldn’t’
“I made a decision to go completely gluten-free the day after Thanksgiving. That’s when I started to consider how I would approach my new life. I decided to be grateful for the opportunity, to approach my new life with a sense of adventure. I chose not to make my gluten-free lifestyle a limitation. Easier vowed than done!
I focused on what I could eat, not what I couldn’t. I think that made a huge difference and led me to explore foods from around the world — and I discovered that most of what we eat is naturally gluten-free. Breads and pastries are occasional foods for me, not everyday foods. I became more excited about exploring the world of food, and it’s amazing to me how big that world is.
But I’ve made mistakes, and I’ve certainly had my share of ‘What can I eat?’ moments during social situations (and the awkwardness that arises when I realize ‘nothing’ is the answer in some restaurants). Every day, I am grateful for learning what was slowly killing me. I am grateful that I can eat well without feeling sick. I approach food with joy and a sense of fun!”
— Kassia Kroszer, blogger living with celiac disease
‘I gave myself an entire month to fully transition’
“Transitioning to a gluten-free diet can feel very overwhelming at first. I found it easier to focus on learning how to cook and prepare a few gluten-free meals I really enjoyed. Once I felt confident in my ability to make those meals, it was easier to start incorporating more gluten-free things into my regular diet. I gave myself an entire month to fully transition to be-ing totally gluten-free and found it to be a lot less stressful this way.
Some other tips that have been useful for me in that gluten-free transition are:
- If you have friends who are gluten-free, ask them for their favorite food blogs or recipes sites
- Make a list of staple items that you always have in your pantry at any given time, and do some research on what gluten-free products are available to replace any of those items.
- Plan a time to do some deep cleaning of your kitchen. Sanitize your pots, pans, bakeware, and even your blender and food processor. If you have Celiac, you want to make sure you don’t have any cross-contamination lurking in your cookware!”
— Asha Brown, founder and executive director of We Are Diabetes, living with type 1 diabetes
‘Gluten-containing foods aren’t generally high in nutrients’
“First, I started to avoid gluten at breakfast and over time, I transitioned to avoiding it at all other meals, too. I lost weight by removing gluten, plus processed foods, and instead eating only nutrient-rich foods like animal protein, vegetables, fruits, nuts, and seeds.
Gluten-containing foods aren’t generally high in nutrients, so I feel motivated to stick with this way of eating because I want everything I eat to nourish me! It is an adjustment, but once you go a few months without gluten, you get into a habit of eating and looking forward to other foods ... real, nutrient-rich food!”
— Sysy Morales, blogger living with type 1 diabetes
‘After years of denial, I realized how good I feel when I’m not eating gluten’
“Honestly, I continued to eat gluten for years after my celiac diagnosis. I wasn’t taking care of myself before being diagnosed, and I just got pissed and overwhelmed and fought it as much as I could. I ate gluten every day. Over the course of about five years, pizza and beer — whatever I wanted — I was in total denial that my increasing depression, no energy, body acne, headaches, and really uncomfortable bowel movements were all directly related to all of the gluten and junk I was eating.
I wrote it all down on paper — the way gluten was affecting my health and my life. And then the next day, I said that was that. No more gluten.
Today, I love baking. I love cooking. I make most of my own food now (gluten-free, of course), and I really enjoy food. I’ve lost a ton of weight. My skin is so much better. I’m off antidepressants. I actually have the energy to exercise, and I like exercising. Living gluten-free is easy now because after years of denial, I just realized how good I feel when I’m not eating gluten.”
— Mark*, living with celiac disease
‘The support from family and friends continues to surprise me’
“The one topic that remains most important to me after my celiac diagnosis is aligning myself with people who support and understand what I go through on a day-to-day basis.
This support comes in many forms; in my home, my family knows the severity of cross-contamination, so our kitchen is gluten-free. I’ve had tremendous support when it comes to dining out in restaurants, being sure it’s a safe place to eat, and preparing for meals in advance for social gatherings with friends. It’s been a journey, and every day I try to make it an enjoyable one.
I do enjoy a life full of dining out (I live in New York City), dating (my boyfriend always orders gluten-free when he’s out with me), and work functions (social events are most difficult and need special attention, like speaking directly with the chef).
Equally important have been my friends and family who constantly surprise me with making sure there are plenty of things to eat and enjoy when I’m visiting.
The second day of my diagnosis, I became a member of the local “Gluten Intolerance Group” chapter, then later became a board member. I also became quite involved through social media (#glutenmatters is a great hashtag for finding others).
All of these sources of support saved me when I was first became diagnosed. My advice is to get involved. Learn about the disease, and one day you’ll find yourself advocating for others along the way.”
— Ilise Ratner, advocate living with celiac disease
‘Start simple and, most importantly, be patient’
"It can be daunting to change all of your food choices at once. And not all gluten-free alternative products are good. With some, you can hardly tell the difference from their gluten-full cousins, while others are downright awful.
I started making the adjustment by keeping things simple: mostly vegetables, lots of salads, meat, and rice. Then I gradually tried different gluten-free products and expanded my repertoire. For example, we finally found a gluten-free pasta brand that the whole family likes, so that's the only pasta we buy now.
I guess my advice would be to start simple and, most importantly, be patient, and always be open to trying new things."
— Jennifer Patterson, living with celiac disease
Responses have been edited for length and clarity.