Celiac Awareness Month
Since Pomona is launching during Celiac Disease Awareness month, we wanted to talk about what celiac disease is, what increases a person’s chances of developing it, what some of its symptoms are, how it's diagnosed and treated, and what resources are available to celiacs and their families.
What is celiac disease?
Celiac disease [spelled “coeliac” in the UK, Australia, and New Zealand; and sometimes referred to as celiac sprue, or gluten-sensitive enteropathy (GSE)] is a hereditary autoimmune disorder that can develop at any time during a person’s lifespan. It is one of the most prevalent autoimmune diseases in the world and is believed to affect about 1% of the global population — though some estimates range as high as 3%. According to these statistics, there are between 78.8 million and 236.6 million people affected by celiac disease worldwide.
Individuals with celiac disease experience an immune response when they consume gluten, a protein found in grains — specifically wheat (and its derivatives), barley, rye, malt, brewer’s yeast, and triticale (a hybrid of wheat and rye). This means that the immune system releases antibodies to attack gluten as though it were a pathogen.
Over time, if untreated, the immune response triggered by gluten consumption in individuals with celiac disease causes damage to the microvilli that line the small intestine. Not only can this contribute to an array of undesirable and even debilitating symptoms, but it ultimately inhibits the microvilli’s ability to sufficiently absorb nutrients during the process of digestion.
Pathogenesis and risk factors
It is not clear what exactly brings about the onset of celiac disease, but it is generally understood to be the result of the interaction of certain genetic and environmental factors. However, there are a number of well-known risk factors.
People who have a first-degree relative (i.e., parent or sibling) with celiac disease have a 1 in 10 chance of developing celiac disease themselves. Those with second-degree celiac relatives (i.e., grandparents, aunts, uncles, or cousins) also have an increased risk.
Women are 2 to 3 times more likely than men to be diagnosed with celiac disease, accounting for 60 to 70% of all known cases in most populations.
Since approximately 25% of patients with an autoimmune disease will develop at least one other autoimmune disorder during their lifetime, individuals who have received a diagnosis of another autoimmune disease bear a higher risk of developing celiac disease.
Other groups with an elevated risk of celiac disease are people with Down syndrome, Turner syndrome, Williams syndrome, type 1 diabetes mellitus, juvenile chronic arthritis, and selective IgA deficiency.
Symptoms
Due to the broad range of recognized symptoms (over 250) and the prevalence of asymptomatic cases (known as “silent celiac”), celiac disease can be difficult to diagnose. It is estimated that between 70 to 95% of individuals with celiac disease are undiagnosed, or have been misdiagnosed with another condition. Some of the most common symptoms include:
Abdominal pain
ADHD and learning disabilities
Anxiety and depression
Bloating and gas
Constipation
Delayed puberty and missed periods
Dental enamel defects
Diarrhea
Fatigue
Failure to thrive
Fertility issues
Headaches or migraines
Iron-deficiency anemia
Itchy, blistery skin rash (dermatitis herpetiformis)
Lack of muscle coordination
Mouth ulcers
Nausea and vomiting
Seizures
Stunted growth / short stature
Unintentional weight loss
Whether you are symptomatic or not, if you have a first- or second-degree relative with celiac disease, talk to your doctor about getting screened on a regular basis.
Diagnosis
There are multiple ways that celiac disease can be diagnosed:
The gold standard for celiac diagnosis is an upper endoscopy, during which the doctor takes a biopsy of the intestine; or a video endoscopy.
A “celiac screening” blood test, called a tissue transglutaminase (tTG) IgA test, can detect antibodies in the bloodstream that indicate the celiac immune response. These labs can be prescribed by a doctor, or ordered online from labs like Quest Diagnostics. This is often not relied upon alone as a diagnostic tool because false negatives are possible.
Individuals with dermatitis herpetiformis can be diagnosed via a skin biopsy.
It is extremely important that a gluten-free diet is not adopted until a diagnosis of celiac disease has been confirmed. Cessation of gluten consumption within the 6-to-12-week period prior to testing can produce a false negative lab result.
The importance of obtaining an accurate diagnosis and getting treatment for celiac disease cannot be understated. Undiagnosed or untreated celiac disease can lead to other autoimmune disorders and long-term health conditions, including but not limited to:
Nutrient deficiencies and malnutrition
Osteopenia and osteoporosis
Heart disease
Thyroid disorders
Infertility and miscarriage
Intestinal permeability (leaky gut)
Cancer
It takes an average of four years to be diagnosed, which is one of the many reasons awareness is so important.
Treatment and outlook
The only treatment for celiac disease is adherence to a strict gluten-free lifestyle. This includes food as well as items that are applied to or absorbed into the skin, such as bath, beauty, and skincare products.
Sadly, up to 50% of people with celiac disease who follow a gluten-free diet continue to experience symptoms and intestinal damage.
Resources & education
Major organizations and societies exist in countries all over the world to support individuals who have been diagnosed with celiac disease. Here are a few from around the English-speaking world:
If you or a family member have been recently diagnosed with celiac disease and are looking for guidance or next steps, we invite you to sign up for updates regarding the launch of Pomona’s Celiac Crash Course, a live video call covering everything you need to know to care for yourself or your loved one post-diagnosis.