While the gluten-free diet has grown increasingly popular in recent years, for some people with an autoimmune condition called celiac disease, the eating approach isn’t just a fad to try — it’s a necessity.
Celiac disease, also called gluten sensitive enteropathy, is an autoimmune disorder where the ingestion of the protein called gluten damages the small intestine and makes it hard for the body to absorb essential nutrients. Gluten is a binding protein that comes from such grains as wheat, rye, and barley; it is used in a wide variety of products. (1)
Celiac disease affects an estimated 1 in 100 people across the globe and about 1 in 141 Americans.
For people who have celiac disease, it’s often not as simple as just skipping the bread or pasta: Gluten can lurk in some vitamins, supplements, hair and skin products, toothpastes, and even lip balm. (1,2,3)
There’s Gluten in That? 13 Surprising Things That Contain the Protein
The disease can be hereditary: People with a first-degree relative who have celiac disease have between a 4 and 15 percent risk of developing the disease themselves. (4) Celiac disease can develop at any age, and, left untreated, can lead to a host of other problems, including iron-deficiency anemia, infertility, nutritional deficiencies, nervous system disorders, and cancer. (1)
“Those with the disease have a genetic predisposition, but something else in the environment ‘flips the switch’ to turn on the exaggerated immune response,” explains Marty Meyer, MD, a gastroenterologist at Ohio Gastroenterology Group in Dublin, Ohio.
What Are the General Warning Signs and Symptoms of Celiac Disease?
Celiac disease can be tricky to recognize, as it can affect each person differently, and not everyone has the same symptoms. (2,3) Those symptoms could depend on a number of factors, including: (5)
- How long you were breast-fed as an infant (according to some studies, the longer you were breast-fed, the later celiac disease symptoms appear)
- How much gluten you eat
- How old you were when you first started eating gluten
- Your age
- The damage to your small intestine
“There are so many different symptoms of celiac disease that it can really manifest in a diverse array of presentations,” says Benjamin Lebwohl, MD, director of clinical research at the Celiac Disease Center at Columbia University in New York City and president of the Society for the Study of Celiac Disease.
Overall, there are more than 200 signs and symptoms of celiac disease — but some people show no symptoms at all. In those cases, people’s small intestine is able to absorb enough nutrients to prevent many related symptoms, though these people are still at risk of suffering from other complications of celiac disease. (6)
In addition, Dr. Lebwohl says, the disease may manifest differently depending on whether you’re an adult or a child. But the most common symptom among all age groups is diarrhea, though that still encompasses less than 50 percent of all the different ways that people can present with celiac disease, he says.
Read on for some common symptoms of celiac disease, broken out by age group.
Possible Symptoms of Celiac Disease in Infants and Young Children
Very young children may not show any signs of celiac disease, as they will not show any autoimmune response to the protein gluten until they’ve been eating it for an extended period of time, such as a year. (6)
In infants and young children, symptoms could include:
- Failure to Thrive Malnutrition as a result of celiac disease could cause a failure to thrive in children, often defined as growth below the third or fifth percentiles, or a fall in growth from above the 75th to below the 25th percentile in a short period of time. (7) This is a fairly common symptom in children with celiac disease, Lebwohl notes.
- Developmental Delays Similarly, malnutrition from celiac disease could cause children to miss development milestones. (7)
- Irritability, Especially After the Ingestion of Gluten Often, this might be the only symptom seen in young children. (7)
- Digestive Symptoms These include stomach pain, bloating, vomiting, diarrhea, and constipation. (8)
- Damage to Tooth Enamel If your child’s dentist notices tooth enamel that’s worn away, you might consider a celiac disease screening. (8)
Possible Symptoms of Celiac Disease in Teenagers
Teenagers may exhibit any of the symptoms above listed for children, in addition to:
- Delayed Puberty This happens due to the body’s inability to absorb nutrients as a result of damage in the small intestine. Delayed puberty might mean no breast development in girls by age 13 and no testicular enlargement in boys by age 14. (6)
- Short Stature This also is caused by nutritional deficiencies that are the result of damage to the small intestine. (6)
- Hair Loss This effect is a result of nutritional deficiencies. (7)
Possible Symptoms of Celiac Disease in Adults
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Some evidence suggests that adults are actually less likely than children to have gastrointestinal symptoms — though they might still experience some, like stomach pain, heartburn, bloating, diarrhea, or vomiting, after ingesting gluten. (6,7) In fact, some research suggests only about one-third of adult patients experience diarrhea. (5)
Still, “whether that’s consistently the case is not clear,” Lebwohl says, noting studies on adults with celiac disease and related digestive symptoms have varied.
Adults also tend to have symptoms that include:
Iron-Deficient Anemia (a Low Red Blood Cell Count)
Because celiac causes damage to the small intestine, this can lead to malabsorption of iron and other essential components needed to make red blood cells. That’s why iron-deficient anemia is one of the most common symptoms of celiac disease in older children and adults. (6)
This symptom may also stem from intestinal damage. Some of the most common are iron, calcium, and vitamin D deficiencies, though others include B12, copper, folate, magnesium, riboflavin, and zinc. (6)
Nervous System Conditions
These include attention deficit hyperactivity disorder (ADHD), anxiety, brain fog, depression, migraines, and irritability. Often these symptoms improve after about 6 to 12 months on a gluten-free diet. (6)
Sometimes, intestinal damage could make it difficult for the body to digest sugar lactose, found in most dairy products — though this symptom often improves over time after adopting a gluten-free diet. (6)
Arthritis or Bone and Joint Pain
This can be caused by inflammation. (6)
Numbness in the Hands and Feet
This also is referred to as peripheral neuropathy. (6)
Weak or Brittle Bones
This may take form as osteoporosis or low bone mineral density, and is caused by intestinal damage, which makes it hard for the body to absorb calcium and vitamin D. (6)
Reproductive Issues in Women
Miscarriage, preterm birth, infertility, and irregular periods are all possible signs of celiac in women. (6,9)
Eczema (atopic dermatitis) or dermatitis herpetiformis are symptoms that often get better after starting to follow a gluten-free diet. (6)
Eczema is a group of inflammatory skin conditions that cause red and itchy patches to form on the skin, but it is quite common and may not be related to celiac disease.
On the other hand, dermatitis herpetiformis is often associated with celiac. It is an itchy rash that usually appears on the elbows, knees, buttocks, back, or scalp. For some people, this is actually their only symptom. (4)
Canker Sores in the Mouth
While everyone can get these uncomfortable sores, if they’re occurring frequently, you may need to be tested for celiac. (7)
Pale, Foul-Smelling Stool
This may be a sign that your body isn’t properly absorbing nutrients, but patients rarely exhibit it. (5)
What Conditions May Be Mistaken for Celiac Disease?
Some conditions have symptoms that could mimic those of celiac disease. To find out if it’s celiac, you’ll need to get tested for the condition while still including gluten in your diet, Lebwohl says.
Some conditions whose symptoms can mimic those of celiac disease include:
Both conditions are related to inflammation of the intestine, but blood tests and biopsies can distinguish between the two. (11)
Unlike symptoms of Crohn’s disease, symptoms of celiac disease tend to disappear on a gluten-free diet. (11)
Gluten Insensitivity (Nonceliac Gluten Sensitivity)
Gluten insensitivity, also called an intolerance, is not the same as celiac disease. The major difference? While patients may experience similar symptoms, celiac disease leads to abnormal test results, while gluten intolerance does not, Dr. Meyer says.
But both groups see an improvement in symptoms when avoiding gluten, so you won’t be able to tell if you have one over the other if you see your symptoms improve on a gluten-free diet, he says.
Another crucial difference is that patients who have celiac disease have an increased risk of small bowel cancer, osteoporosis, and malnutrition if they continue to ingest gluten — while gluten intolerant patients do not, Meyer explains.
Irritable Bowel Syndrome (IBS)
This is a very common condition — much more common than celiac disease — characterized by irregular bowel movements and abdominal pain, Lebwohl says. Some people may have IBS, celiac disease, or even both, as the symptoms can overlap perfectly.
Certain other conditions, including gastrointestinal infections, inflammatory bowel disease, and even lactose intolerance, can all mimic celiac disease, Meyer says. But celiac disease can be confirmed based on certain blood tests and a biopsy of the small intestine, he explains.
Have Celiac Disease Symptoms? When to See a Doctor About Testing
If you are concerned about your symptoms, it’s a good idea to talk with your doctor about getting tested. You should also think about getting tested if: (6)
You have a close relative (parent, sibling, child) who has a confirmed case of celiac disease. In this case, all children older than age 3 and all adults should ideally get tested. Note that for children younger than age 3, antibody testing may not be accurate, though children can still be evaluated by a pediatric gastroenterologist.
You have a related autoimmune disorder, such as type 1 diabetes, Hashimoto’s thyroiditis, Graves disease, or Sjogren’s disease. These conditions are associated with celiac disease.
You have a genetic abnormality disorder. These include Down syndrome, Turner’s syndrome, and Williams syndrome. Doctors recommend regular testing for celiac if you or your child has one of these disorders.
You have experienced multiple miscarriages or infertility, and doctors did not find another medical cause. Research suggests these outcomes are linked. (12)
Should You Go Gluten-Free Without a Medical Reason?
You have other symptoms of celiac disease. These include chronic diarrhea (a change in the frequency or consistency of your stool that lasts longer than a few weeks), unexplained abdominal pain or bloating, or unexplained iron-deficiency anemia, Lebwohl says.
“There is some uncertainty about the threshold of symptoms required to test for celiac disease,” Lebwohl says. “But given that many patients with celiac disease remain undiagnosed, and given that the test for celiac disease is a simple blood test, it is reasonable to test for celiac disease in the presence of any one of these symptoms.”
Should You Get Tested for Celiac Disease, and if So, How Is the Condition Diagnosed?
If you’re searching for a doctor or healthcare professional, the Celiac Disease Foundation has a directory of physicians, dietitians, mental health professionals, and other healthcare providers across the United States. (6)
So once you decide to get tested for celiac disease, how do doctors make a diagnosis? Two ways: one, a celiac disease panel blood test, and two, an endoscopic biopsy of your small intestine. (7) If you are getting tested, it’s important to not stop eating gluten before the blood test, as it can skew your results. (8)
Also, keep in mind that you may need to be tested more than once if you fall into any of the categories above, as celiac disease can occur at any time, once the autoimmune response is triggered. (6)
A Final Word on Detecting Celiac Disease and Possibly Receiving a Diagnosis
Ultimately, it’s important to remember that celiac disease does not affect two individuals in the same way, and to be aware of key risk factors (like family history or related autoimmune disorders) that may suggest you should get tested.
“People should understand that celiac disease is common, and many people unknowingly have it,” Meyer says. Anyone concerned about the possibility of the disease should pursue additional testing, he says.