Getting Tested for Celiac Disease and How It's Treated

What Is Celiac Disease?

Celiac disease is a hereditary autoimmune disorder in which consuming gluten leads to damage in your small intestine.

When someone with celiac disease eats gluten, the immune cells lining the GI tract will be activated. The resulting inflammation in the small intestine will decrease its ability to perform its primary function, the absorption of nutrients. This can cause a number of health issues.

Gluten

Gluten is one of the many proteins that is produced when the wheat that we consume, including that found in durum, semolina, farro, wheat berries, spelt, rye, barley, and triticale, is digested in the small intestine. Gluten allows food like bread loaves to form and maintain their stiff shape.

Although you might think gluten is found mostly in bread, wheat and gluten are often used as additives in a number of processed food products. This presents a significant dietary challenge to anyone experiencing gluten intolerance.

Where Gluten Is Found

According to the Celiac Disease Foundation, you can find gluten in the "big three" foods:

• Wheat
• Barley
• Rye

You can also find gluten in oats and triticale, a new grain grown to offer a similar taste and texture of wheat.

Foods often containing gluten include the following:

• Breads
• Bakery items (e.g., muffins, cinnamon rolls, bagels, and cookies)
• Soups
• Pasta (e.g., raviolis, couscous, and gnocchi)
• Salad dressings
• Boxed cereals
• Alcoholic beverages (e.g., beer that contains malt)
• Malt milkshakes
• Food colorings

Getting Tested

Anyone can get tested if they meet any of the following three criteria, according to the Celiac Disease Foundation:

Children

Children 2 years of age or older with the following symptoms can be screened for suspected celiac disease:

• Anemia
• Digestive symptoms
• Abdominal bloating and pain
• Constipation
• Weight loss
• Fatigue
• Behavioral issues

Adults

Adults are less likely to have digestive symptoms, but could experience any of the following:

• Migraines
• Fatigue
• Joint Pain
• Depression
• Seizures
• Irregular menstrual cycles

You should also get tested for Celiac disease if any of the following are true:

If you have a gluten sensitivity, you are out of luck with testing for it. According to Beyond Celiac, there are presently no tests that accurately assess for non-celiac gluten sensitivity. Although you may be offered saliva, blood, or stool testing, the results of these tests haven't been validated and have not been approved by the FDA for use in making clinical decisions. 

Types of Testing

The Celiac Disease Foundation says the most appropriate way to test for celiac disease is to start with taking an IgA antibody test. If you are fit for further testing, blood tests can be conducted.

Antibody Testing

If you currently follow a gluten-free diet, your medical professional also might suggest allowing antibodies to build up in your bloodstream before you conduct any test. Should your doctor prefer you do this, the recommended gluten intake is two slices of wheat-based bread each day for six to eight weeks.

You must be supervised by your doctor in case your symptoms become severe. (This test is known in the medical world as The Gluten Challenge.)

Blood Testing

Once your doctor determines you are fit for testing, you move on to step two, blood testing.

The most appropriate way to test for celiac disease is to measure (typically at the same time) the level of IgA in your blood, as well as the presence of Tissue Transglutaminase or tTG-IgA . You must generate sufficient amounts of IgA to be able to confidently say if the level tTG-IgA in a person's blood is sufficiently high to raise suspicion for celiac disease. Patients much be consuming gluten in their diet for blood testing to be valid. The recommended gluten intake is two slices of wheat-based bread each day for six to eight weeks.

1. The tTG-IgA Test is widely available and typically covered by insurance. Other blood tests your health care professional might administer instead include a total IgA or IgA-EMGA.

If You Get a Positive Result

If the test comes back positive, your medical professional will most likely suggest a biopsy of the lining of your small intestine to confirm that it is in fact celiac disease.

You must be on a gluten-containing diet at the time of the biopsy, and although this procedure might sound like a big deal, you should finish in approximately 15 minutes. The procedure is considered low risk.

Because of the damage celiac disease can do to the small intestine, you should get laboratory tests done within three to six months following a positive test result, and again annually for the rest of your life to ensure that you are not developing an elevated tTG-IgA, suggesting that you may be exposing yourself to gluten in your diet. Annual blood work will also help to make sure that you are not deficient in necessary vitamins and minerals.

If You Get a Negative Result

If the test comes back negative, you could still have celiac disease (although the chance remains quite small). For anyone still experiencing severe symptoms after a negative diagnosis, you should talk to your doctor about other tests you can take. These include a biopsy of your small intestine’s lining or genetic screenings.

Getting Tested When The Doctor is Doubtful

You can still get tested if you have trouble convincing a doctor that you might have celiac disease.

According to Beyond Celiac, you can conduct your own at-home with a product from the organization Imaware. They have created a comprehensive test you administer to yourself. The test looks at four biomarkers, including tTG. The only limitation is that you must be 18 years or older to take the test. 

Treatment for Celiac Disease

For those who received a positive diagnosis for celiac disease, the only treatment available is to follow a strict gluten-free lifestyle.

This includes avoiding all foods containing even trace amounts of gluten and vigilantly reading ingredient labels.

Sometimes wheat, barley, and rye are listed under different names. When it comes to celiac disease, you need to be an educated consumer to keep your diet under control. If something is not listed as being gluten-free you will need to look at labels carefully.

According to the Celiac Disease Foundation, look for the following on labels so you can avoid them:

• Barley
• Wheat
• Farina
• Semolina
• Rye
• Spelt
• Triticale
• Graham flour

You can even find gluten in some of these unexpected products:

• Candy bars
• Salad dressings
• Cosmetics (e.g., lipgloss, lipstick, lip balm—these may be ingested since they are used close to the mouth)
• Nutritional supplements
• Vitamins
• Play-dough (children may ingest this)
• Dental care products

Maintaining a gluten-free diet can be complicated, and you should strongly consider working with a registered dietician to map out a healthy and well-balanced gluten-free diet.

According to an October 2017 study from the World Journal of Gastroenterology, the sale of gluten-free products approached $1 billion in 2014 and is likely to be greater than $2 billion by 2020.

Healing

Once starting on a stringent gluten-free diet, your small intestine should start to heal. Complete healing in adults can take many years; children take six months or less.

If you have severe damage to your small intestine, your doctor might prescribe steroids to help with inflammation and reduce your pain. Other drugs such as azathioprine or budesonide could be used as well.

Statistics on Gluten Intolerance

Celiac disease doesn’t discriminate as men and women of all ages and races can be diagnosed with celiac disease. A World Journal of Gastroenterology study estimates that 1 in 133 Americans (or about 1 percent) has celiac disease, and up to 6% have some type of non-celiac gluten sensitivity.

But according to Beyond Celiac, 83% of Americans with celiac disease are either undiagnosed or misdiagnosed with other conditions, and people wait six to 10 years to be correctly diagnosed.

This doesn’t need to be the case. Because of the ease of at-home tests, you can easily discover if you have this autoimmune disease and be on your way to treatment and healing.

If you have concerns about symptoms that you are experiencing that could be consistent with celiac disease, you should discuss testing with your primary care providers.