You’ve been diagnosed with celiac disease. Now what?

July 16, 2020

Providence Nutrition Team

Five steps you can take to ease the transition into a gluten-free eating plan.

It's about progress, not perfection.
Creating a community of support can help ensure your success.
Labels are required reading when going gluten-free.

[5 MIN READ]

Learning you have celiac disease often causes a whirlwind of emotions, questions and concerns. Are bread and pasta gone forever? Are restaurants off-limits now? Will I need a whole new kitchen? Although adapting to a celiac-friendly diet does present some challenges, with a little time and practice, it’s possible to transform your eating plan without completely disrupting your life.

In March, we looked at how to diagnose celiac disease, wheat allergy and related problems in part 1 of our Celiac Series. This month we’ll walk you through five strategies for building the foundation for the lifelong dietary changes your health demands.

After a celiac diagnosis, you’ll want to switch your diet to gluten-free as early as possible. It won't happen overnight, but the faster you begin to implement your new eating plan, the faster your health will improve and you’ll start feeling better.

"After a celiac diagnosis, you’ll want to switch your diet to gluten-free as early as possible," said Paige Becker, RDN, LD, Outpatient Dietitian Nutritionist at Providence Portland Medical Center. "Obviously, it won't happen overnight, but the faster you begin to implement your new eating plan, the faster your health will improve and you’ll start feeling better.”

Focus on the positive

A diagnosis of celiac disease can take the wind out of your sails if you focus on the restrictions it puts on your diet. Although it's only natural to grieve a little when making a significant change, try to focus on what you can eat instead of what you can’t and the related health benefits.

Learning what foods have gluten and developing a basic familiarity with them is the very first step.

Educate yourself about your condition and learn which foods to include and which to avoid. A nutrition specialist can help you map out foods that work for your diet, give you recipe ideas and help you read labels. Knowledge will ease your uncertainty and help calm feelings of frustration or being overwhelmed. “Learning what foods have gluten and developing a basic familiarity with them is the very first step," said Paige.

Develop a team of specialists

Set yourself up for success by taking advantage of the expertise and assistance of healthcare professionals who understand your condition. "It's a great idea for people with celiac disease to find a community who understands the challenges of living gluten-free to help problem solve and offer support," said Paige.

Work with a nutrition specialist to develop a menu of “approved” products and recipes to take the guesswork out of your meals.
Schedule regular checkups with a doctor who specializes in celiac disease to gauge your progress and monitor your condition. Start three to six months after your diagnosis and again at the one-year mark. Continue with annual visits or your doctor's recommendation after the initial year.
Follow up your diagnosis with testing that includes an assessment of your bone density, vitamin D, iron and other nutrients that can be affected by celiac disease.
Consider genetic screening for family members to determine if they share your diagnosis.
Join a support group. Whether it’s a monthly in-person meeting or an online group, creating a community of support for yourself provides an invaluable resource to help you adapt to your new way of eating.

Prep your pantry

A well-stocked pantry can be the key to successfully implementing a gluten-free diet. But where do you start? Don’t panic. Start by ditching the obvious culprits and expand your efforts as your knowledge grows.

Get comfortable with reading labels. Although something may be labeled as “wheat free”, it can still contain gluten. If there’s not a “gluten-free” label, be sure to check for any hidden culprits that could wreak havoc on your system.

“It’s most important to get the big items out of your diet first—like bread, pasta, bagels—those kinds of foods," said Paige. "That’s just the first step. It’s not going to get all the gluten out right away. But any reduction in gluten is going to be helpful.” For instance:

Immediately eliminate any obvious gluten-containing foods from your diet.
Get comfortable with reading labels. Although something may be labeled as “wheat free”, it can still contain gluten. If there’s not a “gluten-free” label, be sure to check for any hidden culprits that could wreak havoc on your system.
Ask the food manufacturer if you need more information about a specific product. Contact information is typically on the label or the company's website. Most companies are happy to answer your questions about their products.
Get familiar with the gluten-free aisle at your grocery store. It offers a wide range of choices that meet your dietary requirements, all conveniently located in one place so they're easy to find and compare.
Plan to spend time in the produce section and in the “outer edges” of the grocery store vs. the inner aisles that often contain gluten-containing boxed foods you’ll want to avoid.

Learn your labels

Labels are required reading when you have celiac disease. With a little practice, you’ll be deciphering them like a pro. Here are some tips:

Look for the words “Gluten-Free.” According to the FDA Labeling Rule, a packaged food product or dietary supplement can be labeled gluten-free if it is naturally gluten-free or if it does not contain any ingredients that have or were derived from gluten.
Food manufacturers can include a gluten-free logo, wording or certification program on their labels as long as the information is true and not misleading.
Avoid all products with rye, barley, wheat, malt or triticale in the ingredient list.
Avoid products made from naturally gluten-free grains, like quinoa or rice, that use the words "may contain gluten" or "made on shared equipment with wheat/gluten."
Naturally gluten-free food products, like fruit or bottled spring water, may be labeled gluten-free.
If a food contains wheat, it must be clearly identified on the label. "Wheat" will appear in parentheses in the ingredient list or a separate "Contains" statement.

Avoid cross-contamination

Avoiding cross-contamination is an essential facet of sticking to a gluten-free diet. Set up your kitchen to make it easy to follow your eating plan with a minimum of fuss and effort. Some people who are especially sensitive, choose to make their home a totally gluten-free zone and ban any problematic products from the house. Others take a less-stringent approach. It’s important to develop a sustainable, manageable approach that meets your individual needs.

Some people who are especially sensitive, choose to make their home a totally gluten-free zone and ban any problematic products from the house. Others take a less-stringent approach.

"You shouldn't have to get rid of everything in your house. That's just not realistic," said Paige. "Carefully clean your utensils and pans if they were used to prepare foods with gluten. A separate toaster would be ideal, for instance. Look at what you use regularly and gauge if it's affecting your life to keep it gluten-free.”

Some additional considerations include:

Designate a butter dish, cutting board or toaster as gluten-free only.
It may be easier to have your own containers of shared food, like mayonnaise, mustard or peanut butter, then trust your family to be vigilant with their crumbs.
If possible, set up an area of the kitchen that’s just for you and restrict its use to strictly gluten-free. At a minimum, always wash the counter before preparing food to clear away any lurking gluten-filled crumbs.
Do gluten-free baking, cutting or food prep first.
Plan to bring your own meals or snacks to gatherings and events.
Color code your utensils and any items you’ve designated gluten-free to keep them easy to identify at a glance. Do the same with the sponge or scrubber you use to clean your “safe” dishware, cutlery and kitchen items.
Put “gluten-free” stickers on the areas where gluten is strictly forbidden to eliminate confusion and remind others where gluten is allowed.

Going gluten-free is a significant life change. With a little preparation and perseverance, the challenges that accompany a gluten-free diet is nothing you can't handle.

“Some people get so stressed from worrying about everything they put in their mouth. That’s not good for your health either,” said Paige. “Definitely read the label on any new food and never assume something is gluten-free without looking first. Don’t forget to be patient with yourself. It’s about progress, not perfection”

Find a doctor

If you’ve been diagnosed with celiac disease, our team of nutrition specialists gives you the tools you need to adjust your eating habits and menu for better health and overall wellbeing. Find a doctor using our provider directory. You can search for a primary care doctor in your area.

In these trying times, whether it’s nutrition or some other chronic illness, it’s important to take care of your health. If you need care, don’t delay. Learn more about your care options with Providence.

Get advice, share strategies and start building your #celiacdisease support system with readers @Providence.