Newly Diagnosed with Celiac? Here's What a Celiac Dietitian Wants You to Know First

The Celiac Space
May 10
4 min read

PART 1 OF 2

By Erin Kenny, RD

I remember being in my doctor's office when I got my diagnosis. In some ways I was actually relieved, because I knew going gluten-free would help me feel better and finally explain the symptoms I'd been dealing with. But the only information I walked out with was "go gluten-free," and I had no idea how overwhelming that would actually be. I thought it would be simpler than it was. After working with hundreds of clients with celiac, I know many feel the same.

If you just got diagnosed, this is the guide I wish I had!

One more thing before we get into it: the beginning is the hardest part, and it gets easier. But it's also really important right now to be careful about where you're getting your information. There is SO much misinformation online, especially in Facebook groups and on social media accounts run by people who aren't trained in celiac and may have picked up bad information themselves and shared it as fact. I see it constantly. A common example is the claim that envelope glue isn't celiac safe (it is) or that you have to throw away everything in your kitchen (you don't, the research shows that properly cleaned equipment can be safe). Following the wrong protocols early on costs you time, money, and sanity. Get your information from verified sources with updated evidence, like celiac.org, niddk.nih.gov, or our team here at The Celiac Space.

Okay, let's get into it.

What Celiac Disease Actually Is

Celiac disease is an autoimmune condition, not a food sensitivity, not an allergy, and not a trend. When someone with celiac eats gluten (a protein found in wheat, barley, and rye), their immune system attacks the small intestine. Over time, this causes real structural damage to the gut lining, which affects how your body absorbs nutrients.

The only treatment is a strict, lifelong gluten-free diet. There's no medication, no "growing out of it," and no threshold where a little bit of gluten is okay. I know that can feel like a lot. But people with celiac live full, healthy, completely normal lives. You will too.

Step 1: Start the Gluten-Free Diet Right Away

The sooner you go gluten-free, the sooner your gut can start healing. And keep in mind that you will make mistakes and learn things as you go, especially at the beginning. That's normal. Don't let the learning curve discourage you.

Gluten hides in a lot more places than most people expect. The obvious ones are bread, pasta, and cereal, but it also shows up in:

Sauces and salad dressings
Soups and broths
Soy sauce
Beer and malt beverages
Candy and some snack foods
Medications and supplements (more on that in Part 2)

When reading labels, look for: wheat, barley, rye, triticale, malt, and brewer's yeast. A product labeled "gluten-free" must contain less than 20 parts per million (ppm) of gluten under FDA rules, which is the threshold considered safe for most people with celiac. If you want extra confidence, look for a certified gluten-free logo from a third-party certifier like GFCO, which holds products to under 10 ppm.

You can also use our No/Whoa cards which explain the ingredients that contain gluten.

Step 2: Set Up a Safe Kitchen

Your kitchen is one of the most common places gluten exposure happens, and it's often where people get tripped up. You have two options: a shared kitchen where gluten-containing foods are still present, or a fully gluten-free kitchen. Neither is wrong, it depends on your household. I personally have had both!

If you're sharing a kitchen:

Get a separate toaster, a shared one is nearly impossible to clean safely
Color-code sponges and dish towels to avoid cross-contact
Store your gluten-free items on their own shelf, above anything containing gluten
Cast iron pans are hard to clean thoroughly, so consider having a dedicated gluten-free one

If most of your household has celiac or you have young kids, going fully gluten-free is often the easier path because it removes a lot of daily mental load.

And if you're following all the rules but still getting sick, your kitchen is one of the first places to investigate.

Step 3: Build Your Treatment Team

Celiac disease isn't managed by one provider, and this is one of the most important steps people skip. Here's who you actually need:

Gastroenterologist: Your GI doctor confirmed the diagnosis and will monitor your long-term healing, including follow-up bloodwork and potentially a repeat endoscopy down the road.

Registered Dietitian who specializes in celiac: This is where I come in, and I'd genuinely argue it's the most important part of your team. Your GI doctor tells you to go gluten-free. But the how, the label reading, the restaurant navigation, the hidden sources, the day-to-day reality of it, that's dietitian territory. Not all dietitians know celiac well, so look for someone who specializes in it. Our team at The Celiac Space does exactly this.

Primary Care Physician: Your PCP coordinates everything else, including referrals, general labs, and medication reviews.

Mental health support: A new diagnosis is emotionally hard, and finding a therapist who understands chronic illness can genuinely be part of how you heal.

Step 4: Feel Your Feelings

This might seem out of place in a practical guide, but I'd be leaving something important out if I skipped it. Getting a celiac diagnosis brings up a lot. Disbelief, relief, grief, frustration, sometimes all in the same afternoon.

You'll also have days down the road where those harder emotions come back, triggered by a comment, a restaurant experience, or a food you miss. That's normal. Feel it and move through it.

The beginning is the hardest part. It really does get easier, and you don't have to figure this out alone.

This post is for educational purposes and does not constitute medical advice. Please consult your healthcare provider with any questions related to your diagnosis or treatment.

Ready for Part 2? We're covering labs, nutrient deficiencies, medications, and what to say to your family. [Keep reading here.]

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