What You Probably Don’t Know About Celiac Disease
(But Definitely Should)
According to Johns Hopkins Medicine, more than 2 million Americans have been diagnosed with celiac disease. Yet researchers believe that as few as 1 in 5 people who have it are ever diagnosed. Furthermore, often by the time a diagnosis is reached, it’s due to other significant health problems resulting from years of neglect.
If you are anything like I was before I learned about this slow, surreptitious malady, you might think something along the lines of
“Ah, okay, so if you eat wheat, you get a tummyache. Right?”
Wrong. Well, maybe not entirely wrong, but it’s just the tip of the iceberg.
So what is celiac disease? Why is it worth your time to test for it?
Celiac disease is a chronic illness in which a person’s immune system reacts abnormally to the protein gluten (found in wheat, barley, rye, and sometimes in small amounts of mixed oats). When a person with celiac disease consumes gluten, their immune system treats it as a disease. It begins to attack the gluten being absorbed by the villi. Intestinal villi are tiny finger-like projections that line the length of your small intestine and absorb nutrients into the bloodstream. Over time, these recurring infections destroy the intestinal villi, and the small intestine can’t absorb enough nutrients, no matter how much food is eaten.
Usually, the damage happens gradually, and symptoms vary for each person. For some, celiac disease will be evident in childhood, taking the form of:
- Abdominal bloating and pain
- Chronic diarrhea or constipation
- Pale, foul-smelling stools
- Nausea and vomiting
- Dermatitis herpetiformis (itchy, blistery skin rashes)
These are the lucky ones.
I know it’s hard to believe, but having such noticeable indications is a blessing in disguise. It allows parents and doctors to catch it before the intestines have sustained extensive damage.
Others with celiac disease are less fortunate; they have a version of celiac disease known as “silent” or “latent.” These people exhibit no symptoms suggesting complications with the digestive system. Some may have no symptoms whatsoever. Nonetheless, even in its latent form, celiac disease eats away at the intestines. So it can take years to get the diagnosis, and by the time it is discovered, there are nearly always corollary illnesses: most often those associated with malnutrition.
Malnutrition Versus Malabsorption
Malnutrition is a condition wherein a person lacks sufficient nutrients, usually caused by not having adequate food to eat.
Malabsorption isn’t quite the same: it’s when the body cannot absorb sufficient nutrients from food, regardless of how much is consumed.
In short, celiac disease causes malabsorption, which in turn causes malnutrition.
In children, malnutrition due to celiac disease can have life-altering consequences, including:
- Failure to thrive (for infants)
- Attention-deficit/hyperactivity disorder (ADHD) and learning disabilities
- Seizures and lack of muscle coordination
- Bone pain, poor growth, and soft, weak bones that result in deformities
- Deterioration of tooth enamel
- Short stature
- Developmental delays
- Iron-deficiency anemia
- Weight loss
Adults with untreated celiac disease are likely to develop at least some of the following afflictions:
- Irritable bowel syndrome
- Bloating and gas
- Difficulty digesting sugars (lactose, sucrose, and fructose)
- Itchy, blistery skin rash (dermatitis herpetiformis)
- Mouth ulcers
- Headaches or migraines
- Depression or anxiety
- Cognitive impairment
- Balance problems
- Fatigue, commonly from iron-deficiency anemia
- Missed periods
- Infertility or miscarriage
- Weight loss
- Joint pain
- Softening of the bones (osteomalacia)
- Loss of bone density (osteoporosis)
- Loss of bone mineral density (osteopenia)
- Nervous system infirmity, including seizures or numbness/tingling in the feet and hands (peripheral neuropathy)
- Reduced functioning of the spleen (hyposplenism)
- Poor pancreas function (pancreatic insufficiency)
- People with celiac disease who don’t maintain a gluten-free diet have a greater risk of developing cancer, including intestinal lymphoma and small bowel cancer.
Since celiac disease is genetic, it runs in families. So in recent years, when medical professionals identify a case, they suggest screening all close relatives. As a result, many asymptomatic cases are identified through proactive testing, saving countless people from long-term difficulties due to malabsorption.
However, having a relative with celiac disease isn’t the only reason to take a blood test. It’s prevalent in people who suffer from:
- Type 1 diabetes
- Autoimmune liver disease
- Addison’s disease
- Down syndrome
- Turner syndrome
- Williams syndrome
If there are cases of these conditions in your family, testing for celiac disease is prudent. In addition, physicians often refer people with related illnesses such as thyroid disease or anemia for celiac testing. These ailments should prompt your doctor to recommend a celiac blood panel. If not, you should take that step on your own.
All too often, a diagnosis of celiac disease is a surprise for those without apparent symptoms; they are astonished to discover they have a serious digestive tract condition, particularly without the typical indications.
Celiac disease is primarily genetic; other causes are a matter of speculation. Possible factors include diet, infant-feeding practices, gastrointestinal infections, and gut bacteria, but thorough research is challenging to conduct. Sometimes, cases of adult celiac disease become active after surgery, pregnancy, viral infection, or severe emotional stress. However, in these cases, the genetic markers for celiac disease were likely already present, and merely lay dormant until the triggering event.
Unfortunately, there is little you can do to avoid celiac disease except to ensure it is safe to consume gluten. And the only way to do that- is to test for it.
There is currently no cure for celiac disease. For most, adhering to a strict gluten-free diet is the only way to avoid sickness and support intestinal healing. While corollary ailments such as rash or anemia are treatable, it’s a classic case of ‘treating the symptom and not the disease.’ The only proven remedy is to avoid gluten altogether.
Thankfully, there is hope that medication may eventually provide an answer. A noteworthy article posted to SienceNorway.no reveals the development of a pill intended to protect the intestines against gluten, and early results are promising. But more research is required, and the long process of test duplication, peer review, and health authority approval will take some time.
For now, the best solution is to take a celiac disease panel and find out if you need to avoid foods with gluten. After researching and writing this article, I will certainly be taking one.