Celiac disease is misunderstood.
Chronic conditions are often misunderstood, even when there’s an abundance of information available on the web. Celiac disease is no different.
There are a number of myths and misconceptions around this condition that affects the small intestine. When people with celiac disease ingest gluten, which is found in many foods like wheat, barley and rye, the body reacts to the gluten by attacking the lining of the small intestine. This makes it difficult for the body to absorb nutrients from food.
Here are nine myths about celiac disease debunked:
Myth 1: Celiac disease is a rare condition only affecting adults.
Celiac disease is estimated to affect about 2.5 million Americans, according to the Celiac Disease Foundation. Rare diseases, on the other hand, are defined as conditions that affect less than 200,000 individuals in the United States.
Celiac disease can happen at any age. It affects children and adults after they begin to eat foods that contain gluten. Symptoms vary from person to person, so diagnosis can be difficult, but an early diagnosis is critical to avoiding long-term health problems.
Myth 2: Celiac disease can only be inherited.
Celiac disease is a genetic condition, but it can also be caused by environmental factors. If a parent has celiac disease, their child has a higher chance of inheriting the disease.
An estimated 35% to 40% of people with celiac disease carry one or both celiac genes — called HLA-DQ2 and DQ8, according to the American Academy of Pediatrics.
“People who inherit one or both genes are thought to be ‘at risk’ of developing celiac disease, but it’s not purely genetic,” says Dr. Gerard Mullin, associate professor of medicine at Johns Hopkins. “Environmental factors can also cause an individual to become gluten intolerant and develop celiac disease.”
Contributing environmental factors that could lead to celiac disease, according to a review published in the World Journal of Clinical Pediatrics, include:
— Wheat consumption.
— Age at gluten intake.
— Use of proton pump inhibitors and antibiotics.
Myth 3: Celiac disease only causes inflammation of the intestine.
It’s true that celiac disease mainly causes intestinal problems such as diarrhea, stomach pain, loss of appetite, constipation, bloating and weight loss. “By following a gluten-free diet, many symptoms of celiac disease can be managed,” says Mullin.
However, some people affected by the disease can also suffer from non-intestinal symptoms, which may include:
— Slowed growth.
— Joint pain.
Children diagnosed with celiac disease suffer from slowed growth since their bodies are not absorbing nutrition from food. People with celiac disease also have two times greater risk of developing coronary artery disease and four times greater risk of developing intestinal cancers, reports the Celiac Disease Foundation.
Myth 4: People with celiac disease always have symptoms.
For those who test positive for celiac disease but do not experience any symptoms, they are classified with “silent celiac disease.” It’s unclear to researchers why a small percentage of people with celiac disease don’t develop symptoms.
In one study, researchers observed 77 people who tested positive for celiac disease over a three-year period. Sixty-one of the participants experienced symptoms and were put on a gluten-free diet; 16 of them had no symptoms and remained on a gluten-containing diet.
Gluten withdrawal led to significant symptom improvement in 61 participants. Of the 16 individuals without symptoms only one developed intestinal damage over time.
Myth 5: Celiac disease tests are limited and unreliable.
Actually, there are numerous tests available that are used to accurately detect celiac disease, including antibody blood tests, intestinal biopsies and small bowel X-rays.
— tTG-IgA test. This is the most common blood test to detect tissue transglutaminase (tTG) and IgA antibodies for celiac disease. The test is highly sensitive in identifying celiac disease and easy to administer, according to the National Institute of Diabetes and Digestive and Kidney Diseases. A positive diagnosis would show a tTG-IgA result that’s greater than 10 times the normal limit. When celiac disease is suspected, doctors may order a separate test, called tTG-IgG, to confirm diagnosis of the condition. Some individuals with celiac disease have an IgA deficiency, however, which can cause a false negative for celiac disease.
— IgA EMA. After using the tTG-IgA test, the IgA Endomysial antibody (EMA) blood test can help assure the accuracy of a celiac disease diagnosis. The performance of this test may depend on the degree of intestinal damage, making the test less sensitive in patients who have milder cases. It’s also the most expensive option so it’s reserved for hard-to-diagnose patients.
— DGP-IgA and DGP-IgG test. These tests are not as accurate as the other tests, but this one may be used in some situations where the tTG and EMA tests are not as sensitive in infants and young children or for individuals with IgA deficiency.
— Endoscopy. When blood tests identify celiac disease, doctors will often order an upper-gastrointenstinal endoscopy to 100% confirm the diagnosis. An endoscopy uses a long tube with a micro camera passed down through the throat. With the camera, doctors can view the small intestine and take small tissue samples, called a biopsy, to analyze the lining of the intestine for damage.
— X-ray. Some doctors may order a small-bowel X-ray to get a better picture of the intestinal lining. Small bowel imaging is particularly helpful in people with serious or complicated cases of celiac disease.
Myth 6: Celiac disease causes you to have other autoimmune diseases.
Celiac disease does not directly cause other autoimmune conditions, but there’s a greater chance of developing one when someone has celiac disease.
“Anyone with an autoimmune disease is predisposed to develop other autoimmune conditions,” says Mullin. Celiac disease is frequently diagnosed along with Type 1 diabetes, multiple sclerosis, arthritis, autoimmune hepatitis and Sjogren’s syndrome.
According to a 2016 study, celiac disease occurred in children with Type 1 Diabetes ranging from 4.4% to 11.1% versus 0.5% for the general population.
Myth 7: Gluten sensitivity is the same as celiac disease.
The gastrointestinal symptoms are often the same, but gluten sensitivity happens when the immune system reacts to gluten. Gluten sensitivity can damage the intestinal lining, but does not cause the same type of inflammation as celiac disease.
“If you don’t test positive for celiac disease, but still react badly to gluten then you should be tested for gluten sensitivity,” says Peter Osborne, founder of the Gluten Free Society and author of “No Grain No Pain.” “It’s not easy to tell the difference between celiac disease and gluten sensitivity on your own, so talk to a doctor about your symptoms.”
Myth 8: Gluten-free diets can cure celiac disease.
There is no cure for celiac disease, and the only way to manage the condition is to adopt a gluten-free diet. Eliminating gluten from meals is easier today with many more gluten-free food choices and delicious options that are naturally gluten free. Caution is still needed when buying foods and eating at restaurants.
“There’s a chemical added to vegetables and meats called microbial transglutaminase to make food more attractive and appealing to consumers,” says Osborne. “While this chemical is technically gluten free, there is increasing evidence that it can create intestinal damage especially in those with celiac disease. Call the food manufacturer or restaurant to ask whether they add this chemical when processing or preparing foods.”
For more information on what foods contain gluten and about microbial transglutaminase, GFS offers guidelines for foods to avoid if you have celiac disease.
Myth 9: There are no standards for gluten-free claims on food labels.
The Food and Drug Administration regulates what you find in grocery stores that are labeled gluten free. In 2013, the government agency developed criteria for food labels containing terms like gluten free, without gluten and free of gluten. The FDA sets a limit of less than 20 parts per million for any trace of gluten in foods containing a gluten-free label. Imagine 20 grains of sand from a million, that’s 20 ppm — a microscopic amount.
Keep in mind, there are no regulations for labeling gluten foods in restaurants. “There’s always the chance of cross contamination, even at restaurants that say they have gluten-free kitchens,” says Osborne. “I always advise to call ahead and speak to the restaurant manager or chef about the precautions they take to keep gluten-free foods safe.”
9 myths about celiac disease:
— Celiac disease is a rare condition only affecting adults.
— Celiac disease can only be inherited.
— Celiac disease only causes inflammation of the intestine.
— People with celiac disease always have symptoms.
— Celiac disease tests are limited and unreliable.
— Celiac disease causes you to have other autoimmune diseases.
— Gluten sensitivity is the same as celiac disease.
— Gluten-free diets can cure celiac disease.
— There are no standards for gluten-free claims on food labels.
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