Today is National Celiac Disease Awareness Day in honor of the birth of Dr. Samuel Gee on September 13, 1839, who identified a link between celiac disease and diet. According to the American Celiac Disease Foundation, celiac disease is the most common autoimmune disorder in the world. It affects as many as three million Americans, or roughly one percent of the population, but 97% of people who are experiencing symptoms remain undiagnosed and suffer needlessly.
I was diagnosed with celiac disease more than 17 years ago and I was ‘lucky’ to spend only two decades suffering from headaches, muscle pain, bouts of fatigue and depression, stomach aches, memory fog, and frequent trips to the bathroom before being diagnosed at the age of 27. My symptoms started at the age of seven, but back then my doctor didn’t find anything unusual with me being 20 pounds underweight even though I ate like a horse, having bathroom issues and unexplained pains, and horrible mood swings.
After the initial shock of having an autoimmune disease subsided, I learned how to safely feed myself through extensive label reading and endless trips to the grocery store. Conducting research, plus lots of trial and error helped me find my confidence. For those with celiac disease, eliminating gluten is the only cure, which means following a gluten-free diet for the long haul. Regardless of what the media or celebrities may say/think, the gluten-free diet is not a fad, but the only ‘cure’ for celiac disease.
It is important to promote awareness on this day (and every other day) to help get more people diagnosed and on the road to health. Here are some facts about celiac disease:
- 1 in 133 people have celiac disease, which is genetic. If an immediate family member has it, everyone should get tested even if they aren’t experiencing any symptoms.
- Celiac disease is an autoimmune disease that damages the villi of the small intestine and prevents the absorption of nutrients and vitamins from foods.
- People diagnosed with celiac disease cannot tolerate gluten, which means products made with wheat, rye, barley, or their derivatives must be avoided. Celiacs should also only eat gluten-free oats, as regular oats can become cross contaminated during processing.
- Celiac disease affects men and women across all nationalities.
- People who are overweight or thin can be diagnosed with celiac disease
- There are no pharmaceutical cures for celiac disease
- According to the Gluten Intolerance Group, the classic symptoms of celiac disease are: diarrhea, bloating, weight loss, anemia, chronic fatigue, weakness, bone pain, and muscle cramps. Other symptoms that do not involve the small intestine can include: constipation, constipation alternating with diarrhea, or premature osteoporosis. Others will have symptoms such as rheumatoid conditions, chronic anemia, chronic fatigue, weakness, migraine headaches, nerve problems such as tingling of hands or difficulty walking, or other conditions that are unexplained and/or do not respond to usual treatment.
- Children may exhibit behavioral, learning or concentration problems, irritability, diarrhea, bloated abdomen, growth failure, dental enamel defects, or projectile vomiting. (Source: Gluten Intolerance Group)
- Many people with celiac disease are misdiagnosed with irritable bowel syndrome, spastic colon/bowel, or Crohn’s disease.
- On average it takes 6 to 10 years for a person with celiac disease to get a proper diagnosis. (Source: Daniel Leffler, MD, MS, The Celiac Center at Beth Israel Deaconness Medical Center).
Being diagnosed with celiac disease has saved my life in more than one way. Now I am striving, living a gluten-free lifestyle. Through my consulting company, Gluten Free Go-To Guide, I work to expand gluten-free options on grocery store shelves and in restaurants, bakeries, and other businesses.
Do you know someone with celiac disease? What can you do to promote celiac disease awareness?