Newly Diagnosed with Celiac? Here's What a Celiac Dietitian Wants You to Know First
Updated: Sep 15
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. 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 triggers both adaptive and innate immune responses that attack the small intestine, causing progressive damage to the intestinal villi and impairing the body's ability to absorb nutrients.¹
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.¹ 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 — the internationally recognized threshold established by regulatory agencies as safe for most people with celiac.² 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. Clinical guidelines from the American Gastroenterological Association explicitly recommend that celiac patients receive regular follow-up from a multidisciplinary team — including both a gastroenterologist and a dietitian.³ 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, restaurant navigation, 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.
Research consistently shows that people with celiac experience significantly higher rates of anxiety, depression, and psychological distress compared to the general population — and this is especially pronounced around the time of diagnosis.⁴ You're not overreacting. What you're feeling is documented, real, and valid.
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.
Not sure where to start with supplements? Here's my basic starter protocol → Shop Smart Supplementation Basics.
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.]
Erin Kenny is a Registered Dietitian living with celiac disease and the founder of The Celiac Space. Learn more at theceliacspace.com.
References
Catassi C, Verdu EF, Bai JC, Lionetti E. Coeliac Disease. The Lancet. 2022;399(10344):2413–2426. https://doi.org/10.1016/S0140-6736(22)00794-2
Rallabhandi P, Sharma GM, Pereira M, Williams KM. Immunological Characterization of the Gluten Fractions and Their Hydrolysates from Wheat, Rye and Barley. Journal of Agricultural and Food Chemistry. 2015;63(6):1825–1832. https://doi.org/10.1021/jf505716p
Green PHR, Paski S, Ko CW, Rubio-Tapia A. AGA Clinical Practice Update on Management of Refractory Celiac Disease: Expert Review. Gastroenterology. 2022;163(5):1461–1469. https://doi.org/10.1053/j.gastro.2022.07.086
Alkhiari R. Psychiatric and Neurological Manifestations of Celiac Disease in Adults. Cureus. 2023;15(3):e35712. https://doi.org/10.7759/cureus.35712
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