Learning to Live with Celiac Disease

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Take away: Did you have a recent Celiac diagnosis? Know that it’s all going to be ok.

The beginning: The most part, I would consider myself as having a normal life… Eating what/when I wanted. Learning to cook from my Italian mother and grandmother. Enjoying exploring any and dining options at a whim. Life was good. My ‘Food Life’ was good. Call it living to eat, embracing my culture, or just being a foodie. It was a typical life. But something wasn’t right.

Seemed like no matter what, or how much I was eating, there was always a feeling of discomfort. Knowing that my father also had felt similarly, it was easy to dismiss it as normal. Besides, at the time the word celiac wasn’t in anyone’s vocabulary… anybody I knew anyway.

Fast forward 40 or so years, my sister was diagnosed as having Celiac disorder. She dug in deep and learned to adapt to a gluten free diet. Seeing the steps she needed to take, especially when dining out, seemed over the top to me. Separate workstations, separate fryers, changing out gloves, changing out utensils, and on and on seemed excessive. Judging by the reactions she got from servers often times, it was apparent that they felt the same way. Gluten free diets, as a lifestyle choice, had been around for decades. Many in the food industry saw it as choice that inconvenienced them as opposed to being necessary to avoid an autoimmune response. Still, her resolve never wavered.

It would be ten years later that my “discomfort” turned into a violent reaction. Some how one of the best breakfast burritos I’ve ever had decided to wage war on me that lead to an all-day and all-night battle. I shared the experience with my sister and told her I was considering an endoscopy/biopsy. She warned me to be ready for the results. My first step however, was to try an elimination diet. In May of 2020, it was official. In the words of my doctor, he would be taking away 3 of my favorite types of food to eat… it was an understatement.

***One important note: The only definitive way to diagnose Celiac Disease is to get an endoscopy and biopsy. If you have an endoscopy scheduled, it’s important to continue to eat foods containing gluten… At least as much as you can tolerate. If you start a gluten free diet before getting tested, it can skew the results possibly ending up with being misdiagnosed.***

It was fortunate for me that I didn’t have to jump in to becoming gluten free from square one.  Having witnessed my sister’s experiences and having her available for advise and resources, made the transition more manageable, tho still not appealing. Now in February of 2025, I’ve decided to launch gfGiacomo in hopes of paying it forward. As much as it seems overwhelming at first, there are strategies that will help adjust to a new lifestyle… The first strategy is to realize that it is a new lifestyle. As difficult as that might sound, feeling better is just worth it! 

Admittedly, much of the gluten free food at first might be unpalatable, less than ideal, even ‘gross’ at times. Sorry to be blunt, but it’s true. And it’s important to know that you’re not the only one who may feel this way. But again, it gets better. Really. It does.

In my experience, the first things I learned were:

Look for certified gluten products on the store shelves. Each store carries different products, so you may find yourself saying, ok I need English muffins some I’m going to Trader Joe’s, or some o’dough’s bagel thins at Kroger. Whatever it may be, cruise your local groceries and find out what they have and how they stock it. Some stores have dedicated gluten free sections in the grocery aisles and freezer sections. Some have it dispersed throughout the stores among their glutinous counter parts. Shop around and take notes if needed. The cost of having a product labeled as "Certified Glut Free" can be cost prohibitive to many manufacturer's. It's a good practice to visit their websites for up to date information on their products. It can change over time. The important thing to consider, no matter where you are, is to know the source of what you're eating. There’s an upcoming blog that’ll focus on major chains and what they offer regionally and nationally.

When dining out (yes you can still do that), there are things to look for ahead of time.  Do they have an online menu that shows gf options? Do they sound knowledgeable on the phone about their food handling policies? These aren’t necessarily ’have to haves,’ but they are good indicators. Look for a more in depth discussion in our Dining Out blog.

In the kitchen at home, having a separate toaster is important, as well as a dedicated cutting board/prep area. Otherwise, you should still be able to get by just fine with proper cleaning practices. No need for separate cookware, dishes or flatware. Just keep gf separate from the rest if you’re in a mixed home. A separate pantry, if available, helps as well. More in depth on this in our Setting up your Kitchen blog.

Bottom line, your palate will adjust to gluten free options. What might seem unappealing at first may very well become a favorite in time. The good news is, you're not alone! There are some basic steps to follow to stay safe while more and more gf options become available everyday. Completely gluten free stores, restaurants and bakeries are becoming more popular! You can also check out the gfGiacomo online store for some of the more hard to find pastas and pasta accessories!

A great Facebook group for those newly diagnosed with Celiac Disease is Gluten Free for Beginners.

Helpful apps:  Find Me Gluten Free,  Gluten Free Scanner

What advise would you give to those newly diagnosed with Celiac? Please share your story on Facebook or Instagram.