Newly Diagnosed with Celiac: Labs, Medications, Supplements, and What to Tell Your Family

EDUCATION POST — PART 2 OF 2

By Erin Kenny, RD

When I was first diagnosed, I had no idea gluten could be hiding in my medications. I also had no script for telling my family, and those first conversations were some of the most exhausting I'd had. Here's everything I wish someone had told me.

Welcome to Part 2. If you missed Part 1, start there since we covered the gluten-free diet basics, kitchen setup, and building your care team. This picks up right where we left off.

Step 5: Check Your Medications and Supplements

Most prescription and over-the-counter medications are gluten-free, but some do contain gluten as a filler or binder, and it's worth checking every single one.

Here's how:

• Look at the "inactive ingredients" on the label, that's where gluten hides

• Watch for vague terms like "starch" or "modified starch" and ask your pharmacist to clarify the source

• Corn starch is safe. Plain "starch" with no source listed is worth investigating further

• Ask your pharmacist to check whether your medications are flagged as gluten-free in their system, many are

Bookmark the DailyMed website (dailymed.nlm.nih.gov) for looking up full ingredient lists for most medications. The same rules apply to vitamins and supplements, and re-check when you get a new bottle because formulations change.

Step 6: Get Your Nutrient Levels Checked

Before you were diagnosed, your gut was likely damaged and not absorbing nutrients properly. This is extremely common with newly diagnosed celiac. Ask your doctor to test for:

• Iron (especially if you've had fatigue or anemia)

• Vitamin D (important for bone health and immune function)

• B12 and folate (critical for energy and cell function)

• Calcium (often low due to intestinal damage)

• Zinc (plays a role in immune health and tissue repair)

Ask for a full celiac panel (TTG-IgA is the main marker) alongside a nutrition panel at your first follow-up. This gives you a baseline and shows you what needs support.

As your gut heals on a strict gluten-free diet, absorption typically improves, but it takes time. Targeted supplementation can help fill the gaps in the meantime. I have supplement recommendations I trust in my Fullscript dispensary if you want a starting point, and always talk to your doctor before adding anything new.

Step 7: Talk to Your Family

This conversation is both important and surprisingly hard. Here's what people often don't know: celiac disease is genetic. First-degree relatives (parents, siblings, children) have a 1-in-10 chance of also having it, and many people with celiac have no obvious symptoms but are still experiencing intestinal damage. Encouraging them to ask their doctor about testing is genuinely one of the most caring things you can do.

Scripts that actually help:

To family: "My doctors figured out why I was so sick. I was diagnosed with celiac disease. It's an autoimmune condition, not a food preference. I have to follow a really strict gluten-free diet to heal, and since it's genetic, it might be worth asking your doctor to check you too."

To a partner: "I know gluten-free living seems simple from the outside, but some days it's genuinely hard. The best way to support me when I'm struggling is ________."

To a server: "I have celiac disease. Even small amounts or crumbs will make me sick. Can I speak with the manager about how my meal is prepared?"

You don't owe anyone a detailed medical explanation. "Eating gluten-free is the only treatment for my condition" is enough. Have that sentence ready and use it without apology.

Step 8: If You're Still Sick After 4 to 6 Months, Dig Deeper

Here's something nobody tells you at diagnosis: healing takes time. Most people start feeling meaningfully better within 3 to 6 months of going strictly gluten-free, but that timeline varies.

If you've been diligently gluten-free for 4 to 6 months and still aren't feeling well, that's important information and it's time to figure out why. Going gluten-free is the foundation of treatment, but for many people it's not enough on its own. There could be hidden sources of gluten you haven't identified yet, a secondary condition like SIBO or lactose intolerance that developed alongside celiac, or another food sensitivity that needs to be addressed.

Please don't keep suffering through it and assume this is just what celiac feels like. Work with a celiac-specialized dietitian who can look at your full picture, not just your lab numbers. That's exactly what we do at The Celiac Space.

One More Thing: When You Get Glutened

It will happen, even to the most careful celiacs. When it does:

• Rest. Your body is in an immune response and needs downtime.

• Hydrate. Water and peppermint tea can ease cramping.

• Keep your routine. One rough day doesn't have to derail your week.

• Do some detective work. Trace back what you ate so you can avoid it next time.

• Be kind to yourself. This is not a failure.

A bad gluten day is just information. It doesn't define your life or your progress.

You made it through both parts. That already puts you ahead of where most newly diagnosed celiacs start.

Celiac is manageable. Meals out, travel, holidays, dinner parties, all of it is still yours. It just looks a little different now, and I'm here to help you figure out what that looks like for you.

Ready for personalized support? Book a free discovery call with The Celiac Space team.

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

Sources:

• Celiac Disease Foundation. celiac.org

• National Institutes of Health. niddk.nih.gov

• Rubio-Tapia, A. et al. (2013). ACG Clinical Guidelines: Diagnosis and Management of Celiac Disease.

• U.S. Food and Drug Administration. accessdata.fda.gov

Erin Kenny is a Registered Dietitian living with celiac disease and the founder of The Celiac Space. Learn more at theceliacspace.com.