Celiac disease is an autoimmune disease in which eating foods that contain the protein gluten—found in wheat, barley, and rye—causes damage to your small intestine. It has a wide range of potential symptoms. People who have untreated celiac disease often cannot absorb nutrients from their food, and this can lead to serious health complications, such as malnutrition, osteoporosis, infertility, and even cancer. Fortunately, the damage caused by celiac disease often can be reversed once you’ve been diagnosed and begin following a gluten-free diet, which is the only current treatment for the condition.
In celiac disease, gluten ingestion triggers your white blood cells to attack the lining of your small intestine. The lining of your small intestine is made up of tiny, finger-like projections called villi. The autoimmune reaction in celiac disease attacks those little fingers, ultimately eroding the intestinal lining until it’s worn smooth. Since your villi help you digest foods, losing them to celiac disease leads to major problems.
There are more than 200 potential celiac disease symptoms. Even though you might think of celiac primarily as a digestive problem (it originates in your digestive tract, after all), the condition can affect all your body’s systems, from your brain to your skin.
The most common symptoms include:
- Diarrhea and/or constipation (sometimes alternating)
- Abdominal pain
- Headaches (including migraines)
- Skin conditions (including the so-called “gluten rash” dermatitis herpetiformis)
Symptoms vary by gender and by age:
- Women with celiac disease often have symptoms related to their reproductive tracts; they may have irregular cycles or very painful periods.
- Men with celiac disease may be more likely to be underweight and suffer from reflux symptoms. They also seem to have more skin rashes than women.
- Children with celiac disease might have attention deficit-hyperactivity disorder or other behavioral issues and might also be “picky eaters.” Teens may battle with depression.
- Infants or toddlers with celiac disease may have a sore, swollen tummy or they may just have what’s called “failure to thrive,” which means they aren’t growing and developing as they should.
Although celiac disease is technically a condition involving your digestive tract, many people with it don’t even report any intestinal problems—they may only have, for example, joint pain, perhaps combined with brain fog. They may also have depression and/or anxiety or tingling in their arms and legs (a condition known as peripheral neuropathy that involves nerve damage). In fact, there’s a huge variety of neurological symptomsassociated with celiac disease.
It’s also possible to have celiac disease without any symptoms at all. This is what’s known as silent celiac disease. People with silent celiac disease don’t have any obvious symptoms, but still have the intestinal damage that characterizes the condition.
You need two things to have celiac disease: the genetic potential to develop it plus gluten in your diet. Without one or the other, you won’t develop the condition.
However, that’s far from the end of the story, since many people who have the genes for celiac never develop the condition. But it’s not at all clear why some people with the so-called “celiac genes” wind up with celiac and others do not.
Some experts believe you also need some sort of “trigger” that causes you to develop celiac disease. There are people who believe a stressful period in their lives triggered their celiac disease. In addition, many women report the onset of symptoms after a pregnancy, another potential trigger. However, others who have celiac report a gradual onset of symptoms, so a trigger may not be essential.
It’s unfortunately not always straightforward to diagnose celiac disease—it usually takes multiple blood tests plus a procedure known as an endoscopyto determine if you have it. This process can take anywhere from several weeks to several months.
Celiac disease affects approximately 1 in every 100 Americans. However, most people with the condition—80 percent or possibly more—don’t realize they have it. Studies show that the average patient waits more than four years for an official diagnosis.
The blood tests, which usually represent the first step in the diagnosis process, screen your blood for high levels of antibodies associated with your body’s reaction to gluten in your diet. Because the tests look for the actual reaction to gluten, you must be eating a gluten-containing diet for them to be accurate.
If the blood tests come back positive, the next step, in most cases, is an endoscopy, in which a surgeon uses an instrument to look directly at your small intestine and take samples of your intestinal lining.
In order to be officially diagnosed with celiac disease, those samples of your intestinal lining must show the villous atrophy that’s found in the condition. However, it’s also possible to obtain a diagnosis through skin testing if you have an itchy, gluten-related rash known as dermatitis herpetiformis.
Some people may have celiac disease symptoms but have negative test results for the condition. In that case, they may be diagnosed with non-celiac gluten sensitivity, a recently recognized condition that’s not yet well defined. Not all physicians agree that gluten sensitivity exists, and there’s no accepted way to test for it yet.
Although celiac disease was once thought to primarily affect children, it’s now clear that people of any age can be diagnosed. It’s not at all unusual to find it in people over age 65 whose possible symptoms include potentially reversible dementia. Women are more likely to be diagnosed than men. But because celiac causes such a wide range of potential symptoms, it frequently is mistaken for other conditions. In some cases, it’s even overlooked entirely, although that’s less common than it was a few decades ago, since celiac disease awareness has been rising.
Although there are currently several potential drugs for celiac disease in development, there’s only one treatment you can use right now: the gluten-free diet.
To treat the damage caused by gluten, you need to eliminate gluten from your diet. Once you do that, your intestinal lining will begin to heal and other complications from celiac disease (such as malnutrition) should begin to resolve.
This seems simple but it’s more difficult in practice. You literally have to avoid every speck of gluten, which means replacing kitchen equipment, cleaning out your kitchen and your house, and adopting new rules for eating out.
Following a gluten-free diet isn’t easy. It takes a fair amount of research and practice before you can expect to get it right and get rid of all gluten. However, even if you slip up occasionally as you learn how to follow the diet, you will likely begin to feel better pretty quickly…and that makes your efforts worthwhile.
A Word From Verywell
Awareness of celiac disease is improving dramatically as more people speculate that gluten could be at the root of their health problems. Over the past few years, diagnosis of the condition has risen sharply as well. In addition, eating gluten-free has gotten easier as more food manufacturers produce products that are safe to eat.