How to Cope with a Celiac Disease Diagnosis

How to Cope with a Celiac Disease Diagnosis

If you or a loved one has been recently diagnosed with celiac disease, emotions may be running high. Learn how to cope with the disease and how to effectively take on a gluten free lifestyle.

About 1 in every 133 people has celiac disease – that’s roughly 1% of the population. If you’ve been recently diagnosed, this means that you are not alone.

The fact that celiac disease is frighteningly common may not be very comforting, however, as you deal with the emotional strain of your diagnosis. The only treatment currently available for celiac disease is switching to a gluten free diet which means that you’ll be making some serious changes to your diet as well as your lifestyle.

Such significant change is likely to be a bit stressful, even frustrating at times. So, what can you do to cope with a celiac disease diagnosis? Keep reading to receive some helpful tips.

The Emotional Roller Coaster of a Celiac Disease Diagnosis

When you get the call from your doctor that your blood test or the results of your endoscopy are positive, you may go through a period of shock. Celiac disease is no joke, and the consequences of untreated celiac disease can be very harsh for your digestive system. The sooner you come to terms with your diagnosis and go gluten free, the better.

Though a celiac disease diagnosis can be difficult to deal with, you may also experience a certain degree of relief. The symptoms that come with celiac disease are highly varied and, depending what your individual symptoms have been, you may have been misdiagnosed several or even dozens of times over the past few years. Having an official diagnosis is the first step toward relieving your symptoms, so breathe a sigh of relief before you start worrying about the implications of your diagnosis.

Know What to Expect Going Forward

As you learn what it means to go gluten free, you should expect to go through a transition period before you really get the hang of it. Here are some of the things you should expect to deal with in the coming weeks following your diagnosis:

  • You may have to throw out your cookware, cutting boards, and utensils. Cross-contamination is a serious risk for people with celiac disease, so you’ll need to start fresh with new kitchen utensils to be on the safe side.
  • You’ll have to purge your refrigerator, freezer, and pantry of gluten-containing foods. If you have a family, you don’t necessarily need to get rid of all of these items, but you may want to create a separate space for storing your gluten free food.
  • Your first trip to the grocery store could be a little frustrating. You’re going to need to get used to reading food labels. You’ll need to do more than just check the allergen statement for wheat, too – you’ll need to be on the lookout for hidden sources of wheat, barley, and rye.
  • You’ll have to focus on being more careful about what foods you consume. Going out to eat or going to dinner parties with friends and family is going to become more difficult until you learn to navigate your new diet. You’ll need to either educate your loved ones about your new dietary restrictions or bring your own food – it will probably be a combination of both.
  • Plan ahead when going out to eat and get used to asking a lot of questions. You can’t count on every restaurant having gluten free menu items or even an understanding of gluten. You’ll need to do some research ahead of time to see what’s on the menu and get used to explaining your dietary restrictions to restaurant staff. Be sure to ask plenty of questions at the restaurant to ensure they understand how to prevent cross contamination.
  • Learn how to identify the signs that you’ve ingested gluten. After you’ve been gluten free for a while, the symptoms you experience after accidentally ingesting gluten may not be the same as your symptoms before diagnosis. Know what to look for so you will be aware when you’ve consumed gluten and can take steps to heal your digestion.

It is entirely normal (and completely acceptable) to experience a wide range of emotions after your diagnosis. Knowing what to expect in the coming weeks will help you deal with those emotions, but it is still going to be a rough road as you get used to your new lifestyle. It may help to think positively about your switch to the gluten free diet as a healing process rather than a life of restriction.

How to Get Started with a Gluten Free Diet

Making the switch to a gluten free diet can be challenging, particularly if you knew next to nothing about the diet before your diagnosis. The first thing you need to do is spend some time reading about celiac disease and the gluten free diet. You may already know that gluten is found in wheat, barley, and rye, but you’ll need to be able to identify the many variations of these ingredients that exist in commercial food products.

When you’re first getting started with the gluten free diet, you may want to make things easier on yourself by purchasing certified gluten free packaged foods. This is a good option for staples like bread, pasta, and snack foods. As you learn how to read food labels and identify hidden sources of gluten, you can begin reading ingredient labels of products that are not certified gluten free, but in the early stages, it is better to be safe than sorry. You should also build your diet around naturally gluten free foods like meat and poultry, eggs, fresh fruits and vegetables, nuts and seeds, beans, rice, and healthy fats. Just be sure that all of these products are manufactured and packaged in an environment without any possibility of cross-contamination. For specific dietary guidance, always refer to a dietician.

As you become more comfortable with the gluten free diet, you can start revisiting some of the recipes and dishes you used to eat, making the necessary substations to make them gluten free. Stock up on gluten free flour blends and pantry staples, so you have them on hand when you’re ready to cook. It’s generally easier to start with a gluten free recipe than to try to make the necessary conversions yourself, but if you enjoy experimentation, try incorporating some gluten free substitutions such as these.

In addition to taking these steps to switch over to the gluten free diet, you may want to talk to your doctor about nutritional deficiencies. Depending on how long your celiac disease went undiagnosed, you could have developed some pretty severe deficiencies, so you might need to restore your nutrient levels while your body heals.

You may also want to get tested for other autoimmune diseases since people who have one autoimmune disease (like celiac disease) have a higher risk for developing another autoimmune disease.

Where to Find Support

The fact that you are not alone in having celiac disease means that there is plenty of support out there just waiting to be discovered.

When it comes to learning about celiac disease, there are a number of organizations dedicated solely to providing celiac disease education and support. Here is a list of some of the organizations that offer support and education for celiac disease sufferers:

In addition to educating yourself about your condition, you may find it helpful to connect with people who are in the same situation as you. Reach out on social media to see if any of your friends are also celiac sufferers, and be sure to join one of the many Facebook groups. If that doesn’t work, look for online support groups offered by the organizations listed above. All it takes is a quick online search to find a wealth of resources right at your fingertips.

How Long Does It Take to Feel Better?

After being diagnosed with celiac disease, the sooner you switch to the gluten free diet, the better. But how long does it take for your symptoms to go away?

Unfortunately, there is no one-size-fits-all answer to this question because everyone is different. In many cases, celiac disease patients start to feel better within just a week or two of following the gluten free diet. You may even notice an improvement in digestive symptoms within a matter of days. Symptoms like brain fog and chronic fatigue also tend to resolve fairly quickly.

There are some symptoms, however, which may take longer to clear up. Skin-related symptoms like dermatitis herpetiformis, for example, may take a few weeks to resolve. You may also notice an increase in hunger after making the switch. This is because your body is finally able to absorb nutrition from the food you eat, so it will be making up for lost time.

Even if you start to feel better within a few weeks of starting the gluten free diet, it could take as long as two years for your gut to fully heal from the damage. If you continue to eat gluten, even in small amounts, you might be furthering that damage and postponing the healing process. You should expect to make a few mistakes while you’re getting used to your new lifestyle, but it is important that you commit to it fully for your own health and wellness.

Living with celiac disease is by no means easy, but the tools are out there to help you do it right. Not only are there plenty of resources, but there is also a myriad of gluten free food manufacturers like Schär which offer safe and delicious food products for those with celiac disease.

Your life after a celiac disease diagnosis may not look the way it used to, but it is a new life and that can be exciting too. Best of luck on your gluten free journey, and remember, you’re not alone!