May is here again, and with the cheerful appearance of daffodils and tulips also comes Celiac Disease awareness month – every year! Let’s celebrate by increasing our knowledge and awareness of this condition.
Roughly one in every hundred people worldwide have Celiac Disease [CD], with about one in 133 North Americans affected. Almost three million Americans have it, 83% of which are undiagnosed. This equals two and a half million people who do not know they have Celiac. The prevalence has increased in the last fifty years by four or five fold. Women are diagnosed about two to three times more often than men. Because it is genetic, all first-degree relatives should be screened; they have a 5-15% risk of developing the disease. Interestingly, CD can be diagnosed at any age, and a previous negative diagnosis does not guarantee you will not get it in the future; diagnoses are made across the lifespan.
The average time it takes for a symptomatic person to receive a diagnosis can range from four to eleven years and usually involves an average of five different health care practitioner visits. This can take a large toll on a person’s physical and emotional well being. One reason why it can take so long to get diagnosed may be because the presentation of Celiac has changed over the years. Also, one person’s symptoms can look very different from another’s. It is therefore more difficult to spot. Untreated Celiac can have serious health consequences, not to mention uncomfortable and painful symptoms. It is therefore important to continue to get the word out about this not so uncommon disease.
What it is
Celiac Disease is an autoimmune disorder involving gluten. Gluten is a mix of proteins that are found in wheat, rye, barley, and many other grains related to these, such as spelt, kamut, farro, and durum, as well as processed foods made from these ingredients, like breads, cereals, granola bars, etc. Gluten can be hidden in a myriad of other foods not traditionally associated with grains; be sure to be a food sleuth and read labels carefully [a future article will be dedicated to this.] In certain genetically susceptible people, ingestion of gluten causes an autoimmune reaction in which the body attacks the cells of the lining of the small intestine. The microvilli, or hair like projections at the tips of these cells that aid in absorption of nutrients, become damaged, inflamed, and blunted, or shrink over time with prolonged gluten exposure. This leads to less surface area available for nutrient absorption, which often leads to deficiencies. Untreated or undiagnosed CD can have serious health consequences.
Nutrients that are commonly low in those diagnosed include iron, calcium, magnesium, zinc, folate, niacin, riboflavin, vitamin B12, vitamin D, and possibly A, E, and K. This can lead to conditions such as anemia and osteoporosis. In fact, having untreated CD doubles your risk of bone fractures. Many with CD also have difficulty digesting dairy and may naturally avoid it. This is because the enzymes that digests the sugars in dairy are produced at the tips of the microvilli, which become damaged. Cutting out dairy from the diet can greatly reduce one’s intake of calcium, which is important for bone health.
CD has the potential to affect a lot more than nutrient deficiencies. Untreated, it increases cancer risk, most commonly in the intestinal tract. There is a high rate of infertility and miscarriage. Other autoimmune diseases are associated with Celiac, including Type 1 diabetes, autoimmune thyroid disease, lupus, and rheumatoid arthritis. There is an association between CD and nervous system disorders including depression, anxiety, as well as neuropathy and balance/coordination issues. Other conditions can coexist with CD, such as gallbladder malfunction and decreased enzyme production of the pancreas.
There are over two hundred potential symptoms, many of which overlap with other conditions, making diagnosis more difficult. Some of them are gastrointestinal, such as diarrhea, constipation, abdominal pain, bloating, gas, reflux, and nausea. However, there are countless other symptoms that do not involve digestion. These include fatigue, weight loss or overweight, bone or joint pain, muscle cramps, itchy rash, tingling or numbness in hands or feet, mouth ulcers, dental enamel defects, menstrual irregularities, and migraines. Know that CD can also be asymptomatic, i.e. a person may feel just fine and have no symptoms. A helpful symptom checklist can be found at https://celiac.org/celiac-disease/resources/checklist/.
Diagnosis and Treatment
If you are concerned about CD, consult with your health care practitioner about various antibody blood testing. Most Celiacs also have one or both of the genes HLA –DQ2 and HLA DQ8. If you do not have this genetic marker, you are unlikely to have CD. Note it is extremely important that you be eating gluten regularly for the blood tests to be accurate. Being on a gluten free diet may lead to false negatives.
Treatment of CD is a strict gluten-free diet for life. “Cheating” with even small amounts of gluten can unfortunately lead to damage to your health. The time needed for healing varies greatly, with children healing the fastest. It is common for it to take six months to two years for complete healing after initiating a gluten free diet. Some may still experience symptoms; further gluten sleuthing and possible dietary restrictions may be needed for these individuals.
It is important for all of us to spread the word about Celiac Disease. It is fairly prevalent, and incidence is increasing. Unfortunately, all too many people go undiagnosed or misdiagnosed, suffering unnecessarily as a result, often for years. While it is a serious condition, it can be cured by strictly avoiding gluten for life. Though this process is tricky and has a learning curve, it is very doable, especially if you have the guidance of a knowledgeable health care practitioner. And luckily, there are plenty of delicious alternatives to gluten to enjoy. Gluten-free is by no means a diet of deprivation.
Have a question about gluten or Celiac disease or a request for a future article topic? Send me an e-mail.
The information provided in this article is intended for general use only and is not to be used in place of medical advice from a licensed health professional.