When my son was diagnosed with celiac disease six years ago, I did what I suspect a lot of parents do: I went home and started Googling. Within about five minutes, I had convinced myself that gluten was lurking on every surface of our house and that I would never again be able to feed my family without worrying about making my son sick.
I wish I could go back and tell that version of myself to take a breath.
Over the past six years we've figured out how to make celiac disease work in a very normal, busy family. We've made mistakes, learned which precautions really matter, found our favorite foods and restaurants, navigated school and birthday parties, and gotten to the point where most of it feels remarkably routine. So if you're reading this because you or your child was just diagnosed, here's where I'd start.
1. Make sure the diagnosis is firmly established before changing your diet
If your gastroenterologist has already confirmed celiac disease, great. If the diagnosis was based only on a blood test and an endoscopy/biopsy is still planned, talk to your gastroenterologist before stopping gluten. Celiac blood testing and biopsy generally need to be performed while you're still eating gluten to be diagnostically reliable.
Once the diagnosis is confirmed, you should follow a strict gluten-free diet for life.
2. Learn the three grains you absolutely need to avoid
The big three are:
Wheat, including varieties such as durum, semolina and spelt
Barley, including malt
Rye
Foods such as rice, corn, potatoes, beans, fruits, vegetables, unprocessed meat and many dairy products are naturally gluten-free.
In the U.S., something labeled "gluten-free" must contain less than 20 ppm of gluten.
One thing that's different about celiac disease versus simply choosing not to eat gluten is that cross-contact matters. Gluten can transfer to otherwise gluten-free food during processing, storage, cooking or serving.
3. Don't throw your entire kitchen away
You don't necessarily need to replace everything.
Instead, concentrate first on places where crumbs or residue are difficult to control. For example, place where you might have “double-dipped” and then touched gluten, like butter, peanut butter or jam. Think similarly about shared preparation surfaces and equipment; it’s definitely worth getting a new toaster.
4. See a dietitian who actually specializes in celiac disease
The National Institute of Diabetes and Digestive and Kidney Diseases specifically recommends working with a registered dietitian to learn how to avoid gluten while maintaining a nutritionally balanced diet, including how to read food labels, plan meals and make substitutions.
I'd specifically look for an RD/RDN with celiac experience, rather than simply a general nutritionist.
5. Ask your doctor for baseline bloodwork and whether you need a bone-density scan
Celiac disease can interfere with nutrient absorption, so the diagnosis isn't only about eliminating gluten.
A current Celiac Disease Foundation physician checklist recommends considering baseline testing including:
CBC
Iron studies
Vitamin B testing
Vitamin D
Calcium and phosphate
Zinc
Liver enzymes
Thyroid testing/TSH
If something is deficient, your physician can determine whether supplementation is appropriate rather than guessing and taking a pile of vitamins.
Celiac-related malabsorption can affect bone health. The current follow-up checklist identifies bone-density testing as something your medical team may consider, depending on your individual situation.
I'd put this on the list of questions for your first post-diagnosis appointment rather than assuming everyone needs one immediately.
6. Tell your immediate family
There's an important genetic component to celiac disease. The current Celiac Disease Foundation checklist recommends screening first-degree relatives, meaning parents, siblings and children, and notes that their risk is substantially higher than the general population.
So if this diagnosis is yours, I would specifically mention it to your children's pediatrician as well.
7. Arrange follow-up rather than assuming "gluten-free = done"
Treatment isn't just starting the diet and never seeing the gastroenterologist again.
The American College of Gastroenterology recommends lifelong medical follow-up, and follow-up can evaluate your symptoms, nutritional status, adherence to the gluten-free diet and intestinal healing.
Celiac antibodies such as tTG-IgA generally decline after starting a strict gluten-free diet, although the timeline varies.
If this diagnosis happened today, my short list would be:
This week
Confirm with your GI that diagnostic testing is complete before stopping gluten.
Once confirmed, begin a strict gluten-free diet.
Schedule an appointment with a celiac-experienced RD/RDN.
Make your kitchen reasonably safe from cross-contact.
Start learning labels rather than trying to memorize enormous lists of "safe" foods.
At your next medical visit
Review baseline celiac antibody results.
Discuss CBC, iron, vitamin D and other nutritional labs.
Ask whether bone-density testing is appropriate.
And perhaps most importantly: don't feel like you need to understand everything about celiac disease immediately. The first month is largely about establishing a handful of reliable foods and routines. Most people with celiac disease experience substantial symptom improvement on a gluten-free diet, and for most people the diet allows the small intestine to heal and prevents further damage.
The Good Without
