Celiac Awareness

While Celiac Awareness Month is in May each year, it is something that Gluten Free Nation observes every day of the year. We believe we are stronger together as we advocate for ourselves and others that have celiac disease.

The challenge of celiac disease is that it seldom looks the same for people. With a variety of symptoms that one may experience, there are typically no two cases of celiac that are exactly the same. If you have one prevalent symptom, it does not mean that your neighbor will experience it as well. This is one of the main reasons why this disease is so difficult to accurately diagnose.

Our Founder’s Story

Our founder, Randi Markowitz, knows the celiac journey well. Almost twenty-two years ago, she was incredibly sick and so completely dehydrated that she was unable to even stand up. To say that she was feeling bad is a gross understatement.

Randi went to her doctor who took just one look at her before immediately admitting her to the hospital. Randi knew something was seriously wrong, and so did her doctor. She felt as though she was fading away from herself.

After relaying her symptoms and undergoing many rounds of testing, the doctors came to her and officially diagnosed her with an autoimmune disorder called celiac disease. They urged her to never ever eat gluten again. Randi took their advice to heart and gave up gluten on the spot. Within two days she noticed a marked improvement and began feeling much better.

With this progress already in process, they sent her home to continue recovering, and in eight weeks Randi felt she had almost fully recovered from her debilitating symptoms. Although cross contamination and mistakes are always possible, she seldom gets sick anymore now that she is gluten-free and her system is healing.

What is your story? Share it with family and friends to help educate them about the importance of celiac awareness and what it looks like for you to live a gluten free lifestyle.

Reported Symptoms of Celiac Disease

Celiac disease can manifest in many different ways. This can depend on a person’s age, how long they have been struggling with the disease, and how much gluten they regularly consume. Some of the more commonly reported symptoms from patients with celiac tend to be:

• Bloating and/or gas
• Abdominal pain
• Vomiting
• Diarrhea (sometimes chronic)
• Iron deficiency or anemia
• Weight loss
• Constipation
• Headaches
• Vitamin deficiency
• Cognitive impairment
• Fatigue
• Dermatitis herpetiformis (an itchy and blister related skin condition)
• Failure to thrive

Experiencing one or more of the above symptoms can be debilitating for the person experiencing it and may even lead to additional symptoms such as irritability, anxiety, and depression.

On the opposite side of the spectrum, it may be possible for some people to have the disease but recognize symptoms as something more common such as acid reflux, bloating, and gas.

Part of the challenge of diagnosing celiac disease is that a blood test alone is typically not enough to confirm the autoimmune disease. Physicians frequently start with gathering information on a patient’s symptoms. If there is enough evidence that celiac disease may be present, they could order bloodwork and a scope of the stomach to test samples of the tissue to confirm the diagnosis.

It is critical to know that the efficacy of these tests typically work best when a patient is still actively consuming gluten. If they have been avoiding it for two weeks or more before testing, it may give a false negative as the body will have had some time to recover without gluten in its system.

What Celiac Is Not

While gluten sensitivity and gluten intolerance are conditions experienced by individuals across the globe, they are not the same as the official diagnosis of celiac disease. They can be different in the symptoms experienced and the range of effects they have on the body.

There are others who say that by avoiding gluten they simply feel better with less headaches and brain fog. While this may be true, it is possible for them to feel that way and it not be tied directly to celiac disease.

For people living with celiac disease, it is key to educate people around them about the symptoms of celiac disease and how ingesting even the tiniest amount of gluten can impact them. This is an important distinction to make at restaurants when ordering your food. Ensure that the waitstaff and chef understand that eliminating gluten from your meal is not a preference, but a medical necessity.

How to Raise Celiac Awareness All Year Long

One of the simplest ways to raise awareness is by sharing your story. It is possible that others around you could be experiencing similar symptoms. Sharing your story may lead them to make a doctor appointment to get properly checked out.

Sharing your story is not the same as letting it define you. Simply educate others when an opportunity presents itself. If you bring gluten free pizza to a hangout and there are questions why you brought your own pizza instead of eating delivery, that could be the moment to give a brief explanation. Chances are that your answer may even prompt a few interesting follow-up questions.

Some other ways to help educate people about celiac disease can be:

• Sharing your favorite gluten free restaurants on social media
• Bringing your most requested homemade gluten free dessert recipe to gatherings
• Educating with facts about celiac disease
• Getting personal about how celiac affects your daily life

Sharing these things may be just the thing to prompt someone to get tested if they are experiencing symptoms.

Celiac awareness allows others to understand the importance of a gluten free lifestyle, and this can make get togethers safer and more comfortable for those with Celiac disease.