17 Dec 2013
celiac disease advise

You’re driving home from the doctor’s office with this new label. You have celiac disease.You’re a celiac. You’re gluten-free. And, frankly, you don’t have much of a clue what that means. You may feel scared, panicky. What am I going to do? What am I going to eat?! Ahh! You may feel angry. This sucks! Why me? Why am I stuck with this stupid disease?

Or you may just find yourself thinking about all the things you’ll never be able to eat again (a misnomer, I promise). Doughnuts, pizza, beer, cupcakes, pasta… I have good news for you.

Here’s My Advice to You, Newly Diagnosed Celiac

No matter how difficult things seem now, you’re going to work it out. There has been a lot of progress in the gluten-free space in the 10+ years since I discovered I had celiac disease, and I suspect there is more on the way. Your gut will begin to heal, you’ll make friends who are gluten-free, and you’ll discover gluten-free products that you love.

The first thing you need to do is to educate yourself. Take a couple of hours to read the celiac disease resources available online. Celiac.com and national organization websites like the NFCA, GIG and CSA offer a wealth of frequently updated resources to help you begin your research.

Next, you’ll want to find a support group in your area. The people you meet at this groups are incredibly helpful and supportive. When I was diagnosed, I felt like I was the only person in the world with celiac disease. Finding my local support group put me in touch with a group of people who shared my gluten-free reality. They were a huge help and, consequently, the first people that encouraged Dan and I to open a gluten-free bakery.

With everything on the internet these days, it is becoming increasingly difficult to find local groups. We’ve made a list of gluten-free support groups by state based on the information we found through various online sources.

Finally, you want to get really savvy about food. You’ll need to become an expert at understanding food. Reading labels can be difficult with so many different ingredients and names of ingredients. Read up about reading food labels, and print out Celiac.com‘s list of ‘safe ingredients and unsafe ingredients. While many companies are beginning to appeal for the gluten-free label, your best defense against being glutened is being an expert about what you put in your body.

I’m at a point after 10 years where the gluten-free angst is largely behind me. I hope you can take solace in the fact that it gets better. That doesn’t mean it isn’t tough getting started, or that there aren’t bumps in the road, but it does get better.


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