Nearly everyone who has been diagnosed with celiac disease will be able to tell you when, where, and how it happened. The diagnosis comes as such monumental news to most of us that we can’t help but solidify that day in our minds. Afterward, a type of grieving process usually begins and we run through the gamut of emotions from shock to anger to depression, before emerging on the other side with hope. This grieving process is a natural response to any medical diagnosis that significantly affects our lives — it’s how humans process bad news. But how can we make this process easier and less stressful? Here are our top five ways to adjust to having celiac.

1. Take Your Time

The grieving process isn’t always linear. Sometimes we alternate between good and bad days; and sometimes we think that we’ve fully accepted the diagnosis after a while, only to fall back into despair the next day. Go easy on yourself and understand that there is no right or wrong way to move through grief and that we all have different time frames and methods for working this out. Taking things step by step and learning to understand the details of your condition fully (instead of reading 10 books about gluten-free living over one weekend) can help keep you from becoming overwhelmed with information, or worse: misinformation. 

2. Ask For Help

As with any medical diagnosis, advice from experts and people who have been through the process before can be extremely helpful. If you don’t have direct access to a doctor who specializes in celiac disease, ask your family doctor for a referral to a celiac specialist and reach out with any detailed questions when the need arises. When it comes to your health, no question is a silly one.It’s better to be safe than sorry if you have a concern about your health and how it’s progressing.

The fact that you aren’t alone in having celiac disease means that there is plenty of support out there for people like you. Given that 1% of the U.S. population (meaning 1 in every 133 people!) receives a celiac diagnosis at some point, it’s clear just how common the disease is. The greater scientific and medical awareness of celiac has thankfully led to the rise of a number of organizations dedicated solely to providing celiac disease education and support. Here is a partial list of some of our most trusted organizations: 

The Celiac Disease Foundation (CDF)

The National Celiac Association

Gluten Intolerance Group (GIG)

On a more personal note, connecting with fellow celiac sufferers who have already been through the diagnostic and grieving process and now have a good handle on the condition can be bracing and encouraging. Celiac diagnosis come from all ages, genders, races, and walks of life; so finding a support group could be as simple as reaching out to your friends via email or social media to ask if they or anyone they know has the condition. For broader options, there are a plethora of Facebook and online support groups offered by celiac organizations with thousands of participants who support each other and share resources and information. 

And let’s not forget how emotional and logistic support from our gluten-eating family and friends also plays a big part. Tapping into your existing support group, even if they don’t share your diagnosis, can often be the easiest way to work through difficult emotions and times of stress. In addition, those around you can help with the practical management of your condition by sharing such tasks as gluten-free grocery shopping and safe kitchen practices. Our loved ones naturally want to help when life puts roadblocks in our way, so don’t be afraid to reach out and be honest about the type of assistance you need.

3. Avoid Buying Into Common Misconceptions About Celiac 

As with every medical condition, celiac disease also comes with its fair share of misconceptions. Whether the false facts relate to what you can and can’t eat; how celiac affects other aspects of your health; or even if it’s contagious to other people (ridiculous, we know!); false information is prevalent and the ability to parse it out is critical for both your mental and physical well-being. 

Since cutting down on gluten is now a popular dietary option for people without celiac, even non-celiac gluten-free folks can often misunderstand the severity of your condition; seeing as living gluten free isn’t a choice for you, like it is for them. This means that you’ll need to take extra care when ensuring that the casserole at your gluten-free friend’s place really is 100% gluten free versus simply low on gluten, to help dispel the misconception that small amounts of gluten are acceptable for you to eat.

Pivoting back to the idea that many see a gluten-free lifestyle as a “healthy” option, it’s not surprising that people who’ve been newly diagnosed with celiac often believe that their novel gluten-free diet will result in better overall health. And while that sentiment may be true in some cases, it’s important to remember that not all gluten-free products are created equal and that there are a ton of gluten-free junk food options out there. It’s vital to approach gluten-free products in the same way we approached processed foods prior to our diagnosis — with an analysis of their health content in relation to fat, sugar, etc. 

Once final word of advice about celiac misconceptions: Taking advice from the average Joe or Jane on the street might not be the best idea. Although most people mean well when they give you gluten-free lifestyle advice, if they aren’t medical professionals or fellow celiac sufferers, it’s imperative to double check their advice with reputed sources to ensure that the information is above board and helpful instead of hurtful to your cause.

4. Confirm What You Can and Can’t Eat and Take Precautions

While a celiac diagnosis may take some time to adjust to, we must still eat in the meantime! One of the first things that needs to be determined upon being diagnosed is what you can and can’t eat to ensure that all grocery shopping performed from this point onward is safe. Creating a list of foods that you can eat (and another one of foods to avoid) and referring to it while shopping is a great safeguard against accidentally purchasing and eating a gluten-containing item. Of course, double checking all food labels—even those on generally gluten-free items—is also crucial! Additionally, understanding the precautions to take when cooking at home and sharing a kitchen and table with a gluten-consuming family is a necessary step to take, since it directly follows grocery shopping on the to-do list. 

5. If at First You Don’t Succeed, Try Again!

It’s safe to say that we all experience setbacks during our gluten-free journeys — this is simply the nature of starting something new and not holding a full grasp of the situation immediately. Just as no one ever learned how to play the guitar without calloused hands, no one going gluten-free had smooth sailing all the way. When these roadblocks and pitfalls arise, it’s important to remember that: a) they happen to the best of us and b) trying again is a much better option than giving up!

If a store bought alternative tastes awful, try a different brand. If a recipe you tried doesn’t work, experiment with another. If your family doesn’t understand your explanation of the condition, turn them onto a medical professional’s YouTube video for an alternative description. 

After a period of adjustment, living the gluten-free lifestyle and managing your celiac will become second nature to you. Until then (and beyond!), the Eating Gluten Free family is here for you and yours with our supportive resources and wide range of gluten free products you can trust. Let’s make life taste good again together!