Did you know that 1 in 133 Americans has celiac disease?
That’s roughly 1% of the population. And while that may not sound like much, it makes celiac disease one of the most common genetic diseases.
If we look beyond the US, that number increases even more. 1 in 100 people have celiac disease worldwide. And in recent years, those numbers are increasing rapidly.
According to beyondceliac.org,
“The rate of new diagnosis of celiac disease has increased 7.5 percent every year for the past few decades throughout the industrialized Western world, a new study by Lebwohl and colleagues from Canada, China and Sweden found.”
And because we’re always working to understand how well our community of Evidation Members represents the population as a whole, we wanted to know how many of them are currently living with this rapidly growing autoimmune disease.
We asked Evidation Members if they’d been diagnosed with celiac disease.
What did we discover?
Over 21,000 members responded to the question. And over 14 percent of those who responded answered yes.
That means, out of the 3 million Americans living with celiac disease, 3,000 of them are Evidation Members!
Of course that isn’t an accurate reflection of the population as a whole, but it is interesting to see the numbers and how our members align with the larger community.
What is celiac disease?
According to the National Institute of Diabetes and Digestive and Kidney Diseases (NIH),
“Celiac disease is a chronic digestive and immune disorder that damages the small intestine.”
It is a chronic, genetic, autoimmune disease that often leads to other diseases, and — if left untreated — results in increased hospitalizations and, in some cases, death.
Basically, in a person with celiac disease, the body sees gluten (a protein found in many common foods) as a threat. The immune system attacks the protein, and the small intestine is damaged in the process.
Over time, this leads to damage of other organs as well and numerous other serious health conditions.
This infographic from beyondceliac.org does a great job summarizing the condition.
When is celiac awareness month?
The entire month of May is Celiac Awareness Month. This is a time when people who have celiac and their friends and family get together to raise awareness about the disease.
Those who participate in the awareness month also work to raise money for more celiac research. The goal is twofold. First, advocates want to end the stigma and misinformation about it. Second, they’re working hard to help fund and find a cure.
Remember, knowing the current celiac definition is just the start. You also need to make sure people understand the disease’s impact and how to support those who have it within the local community.
What it’s like to live with celiac disease
For many, living with celiac requires nothing more than a change in diet. Technically.
But it’s not that simple in reality.
Today, it’s easier than ever to find gluten-free options, but it still means a total change in lifestyle. It means limited choices, embarrassment, and often isolation.
In fact, the social and psychological impacts of managing celiac disease are staggering. Often people with celiac choose to risk exposure rather than take on the burden of avoiding gluten. This leads to illness, hospitalization, increased medical expenses, and death.
Eating out is especially difficult. More often than not, individuals living with celiac disease have very limited options when dining out.
Like those with food allergies, even tiny traces of gluten can be enough to cause serious damage, so many restaurants are unable or unwilling to accommodate someone with celiac disease at all.
Those who can often have limited options, maybe a salad with no croutons or a burger with no bun. The risk of cross contamination is high though due to shared prep areas and cooking spaces.
Often individuals with celiac disease steer clear of social eating situations in order to avoid the weight of being a “burden.”
According to The Celiac Disease Foundation,
“The treatment burden of celiac disease is comparable to end-stage renal disease, and the partner burden is comparable to caring for a patient with cancer.”
Luckily, there are resources and advocates. More and more gluten-free options are available every day it seems. And, with education and acceptance, we can start to relieve some of the strain that comes with managing and living with this chronic condition.
Symptoms of celiac disease
One of the challenges doctors face when diagnosing celiac disease is the large list of symptoms. University Health News says there are 281 known symptoms of the condition. Due to this wide range of symptoms, 83% of people with celiac get misdiagnosed or remain undiagnosed.
While symptoms of the digestive system are common, the condition can affect nearly every bodily system. Here are some common symptoms.
Problems with the digestive system are common for those with celiac. Celiac disease causes an immune system response that attacks the small intestine. Specifically, the disorder attacks the villi, which are small, finger-like projections that line the small intestines and absorb nutrients from the food. When someone with celiac disease eats gluten, the villi shrink and become blunted.
The damage to the villi can cause problems such as:
- Bloating and gas
- Vomiting, sometimes severe
- Delayed emptying of the stomach
- Stomach cramping
If left untreated, celiac disease increases a person’s risk of developing more serious problems with the digestive system, including ulcers and stomach cancer.
Neurological and emotional symptoms
For some people, celiac affects the nervous system, not the digestive system. This often causes headaches, including severe migraines. It can also cause:
- Brain fog
- Numbness and neuropathy
- Nerve pain
- ADHD symptoms
- Motor tics
- Autism-like symptoms
In addition, some people will develop a serious condition known as ataxia. Ataxia occurs when the immune system attacks the nervous system after eating gluten. This can lead to slurred speech, coordination problems, gait problems, and trouble controlling the eyes or limbs.
Bone and muscle problems
Celiac disease can cause problems with thinning bones. People may deal with joint or muscle pain with no clear cause. Discoloration of the teeth, especially if someone develops celiac before their adult teeth emerge, can occur. Others may notice problems with tooth enamel.
Growth and development concerns
Some parents notice the first symptoms of celiac when their child fails to grow as expected. Failure to thrive, an otherwise unexplained lack of development and growth, is common. Children may have developmental delays, not meeting expected milestones on time or experiencing delayed puberty.
Historically, doctors watched for children to be losing weight before considering celiac. However, new research has found that nearly 75% of children with the condition are actually overweight, so weight loss or low body weight isn’t the only condition to look for.
The damaged villi caused by celiac disease make it difficult for people to absorb nutrients from their food. This can lead to nutrient deficits, including anemia and vitamin D deficiency. Malnutrition due to celiac can cause a number of other health concerns.
Celiac disease can also affect the skin. Some people develop small, non-itchy bumps called follicular hyperkeratosis. Sores in the mouth are also common. An extremely itchy rash known as dermatitis herpetiformis is another rare but highly problematic symptom.
Other common symptoms
Some additional symptoms of celiac disease include:
- Liver disease
- Spleen disorders
- Loss of appetite
Sometimes, celiac disease causes no symptoms at all. This phenomenon is sometimes called silent celiac. However, if the patient has the disease, the damage to the intestines is still occurring, even if they have no clear external symptoms.
Treatments for celiac disease
The only current treatment for celiac disease is following a strict gluten-free diet. Sometimes, the symptoms and secondary conditions, such as anemia, need additional treatment, but treating the celiac requires a lifetime of gluten-free living.
Avoiding gluten means avoiding wheat, barley, rye, and most oats. Sometimes, wheat is hidden in other ingredient names, such as:
- Modified food starch
Working with a nutritionist who has celiac knowledge can help people with celiac find healthy substitutes for their favorite foods while ensuring that they’re eating a balanced diet in spite of the strict nature of the treatment.
While a lifetime of gluten-free living is challenging, today’s food companies have added many gluten-free products to their lineups. Even major snack food brands, like Oreo, are dipping into the gluten-free market. Eating gluten-free isn’t always easy, but it’s easier now than it was even a decade ago.
Once someone with celiac starts eating gluten-free, the intestines usually start to heal. Once the villi grow back, many of the symptoms will dissipate. However, this isn’t a cure. If the person accidentally eats some gluten, they’ll usually experience symptoms for a few days or weeks afterward.
Raising awareness for celiac disease in May
May is Celiac Awareness Month, and with it comes the opportunity to raise awareness of this common condition.
Whether you’re diagnosed with celiac or someone you know is affected, helping people around you understand celiac is a key factor in accepting the disease and learning to live with it. Here are some ways you can raise awareness during this important month.
- Post educational content to social media – If you’re on social media, find memes from the Celiac Disease Foundation or Beyond Celiac websites, and post them to your social media pages.
- Spread video content – Go on YouTube or another video streaming platform, and find videos from people who have celiac. Share these videos to show what living with the condition is like.
- Reach out to government officials – The celiac disease community is constantly advocating for clearer labeling of gluten-containing ingredients on food packaging. Use May as a chance to send a letter to your government leaders to advocate for this concern.
- Leave brochures about celiac at school or work – Help people learn the facts about celiac by leaving reading material at your school or workplace, if allowed.
- Change your profile picture – Add a green ribbon to your social media profile pages to advocate for celiac disease awareness.
- Wear green – Green is the official color of celiac disease awareness. Find a t-shirt or bracelet you can wear multiple times in the month to advocate for more education and awareness of the disease and its treatment.
- Make a gluten-free treat – Bring a gluten-free treat to work or school. Let people taste how good gluten-free food can be.
- Get tested - If you're dealing with any of the symptoms above, talk to your doctor about getting tested for celiac disease.
- Run for celiac - During Celiac Awareness Month, you'll find virtual and in-person races to raise funds and money for celiac disease and its research. Consider taking part in one. You'll get more steps in your day while advocating for celiac disease treatments.
The more people who participate in Celiac Awareness Month, the more people will find themselves accepting those with celiac disease. The more people accept celiac, the greater number of options people will find for food and support within the community.
Start reaching your health goals today with Evidation
Celiac Awareness Month is a great time to explore additional ways you can support your overall health. Evidation makes tracking your health simple and rewarding. Whether you’re working to avoid gluten due to a new diagnosis or simply want to track your health or daily step count to reach your full potential, our app can help. Simply track your eating and exercise, by synching your favorite tracking app to Evidation, and start earning money for making better choices.
Reach your health goals with help from Evidation. Download the app today.