How to Test for Celiac Disease

Many people with celiac disease don’t know they have it. Typically, celiac disease testing starts with antibody serology tests. If positive, they are often followed up with an upper endoscopy to confirm the diagnosis. Genetic testing can also help rule out celiac disease.

Read more below to learn more about getting tested for celiac disease. It is important to not start a gluten-free diet prior to testing for celiac disease.

When to test for celiac disease

Almost all systems and parts of the body may be affected by celiac disease. As a result, it is a bit of a clinical chameleon that wears many disguises. Knowing when to undergo celiac disease testing can be quite difficult largely because the symptoms often mimic those of other diseases, including irritable bowel syndrome (IBS), Crohn’s disease, intestinal infections, lactose intolerance and depression.

Celiac Disease Symptoms

There are more than 300 symptoms of celiac disease, a serious genetic autoimmune disease. Symptoms may vary among different people. Some of the most common signs and symptoms of celiac disease include:

Anemia
Anxiety
Bloating or gas
Brain fog
Constipation
Delayed growth in children
Depression
Diarrhea
Discolored teeth
Fatigue/tiredness
Headaches or migraines
Infertility
Irritability
Itchy skin rash (dermatitis herpetiformis)
Joint pain
Pale mouth sores
Poor weight gain
Thin bones
Tingling/numbness

Learn more about symptoms of celiac disease

Celiac Disease Tests

Many people with celiac disease don’t know they have it. Two blood tests can help diagnose it:

Serology testing looks for antibodies in your blood. Elevated levels of certain antibody proteins indicate an immune reaction to gluten.
Genetic testing for human leukocyte antigens (HLA-DQ2 and HLA-DQ8) can be used to rule out celiac disease.

It’s important to be tested for celiac disease before trying a gluten-free diet. Eliminating gluten from your diet might make the results of blood tests appear normal. If the results of these tests indicate celiac disease, your doctor will likely order one of the following tests:

Endoscopy. This test uses a long tube with a tiny camera that’s put into your mouth and passed down your throat (upper endoscopy). The camera enables your doctor to view your small intestine and take a small tissue sample (biopsy) to analyze for damage to the villi.
Capsule endoscopy. This test uses a tiny wireless camera to take pictures of your entire small intestine. The camera sits inside a vitamin-sized capsule, which you swallow. As the capsule travels through your digestive tract, the camera takes thousands of pictures that are transmitted to a recorder.

If your doctor suspects you have dermatitis herpetiformis, he or she might take a small sample of skin tissue to examine under a microscope (skin biopsy).

Blood Test for Celiac Disease

Blood tests are the first step in a diagnosis of celiac disease. A doctor will order one or more of a series of blood tests to measure your body’s response to gluten.

How to prepare for celiac blood test: Before the test, continue to eat foods that contain gluten for a time period, such as several weeks, before testing. No preparation is necessary for monitoring celiac disease when you have already been diagnosed.

Currently, recommended celiac disease diagnosis blood test include:

Total IgA
IgA-tTG
IgA-EMA
If IgA is deficient, it is recommended that the IgG/IgA-DGP also be ordered. At the discretion of the doctor, IgG-AGA can also be ordered.

It is important to remain on a normal, gluten-containing diet prior to testing for celiac disease. Do not change to the gluten-free diet before being tested for celiac disease. If the blood tests and symptoms indicate celiac disease, a physician will likely suggest a biopsy of the lining of the small intestine to confirm the diagnosis. See below for more information on the biopsy.

Keep in mind that going gluten-free before being tested for celiac disease can prevent diagnosis. However, people who have already adopted the gluten-free diet without having been tested for celiac disease can undergo a”gluten challenge” in order to receive accurate test results.

How much gluten should I eat before celiac test? Dr. Mclee Tembo recommends eating roughly 2 servings of gluten, equivalent to 2 slices of wheat-based bread, daily for 6-8 weeks prior to testing.

Negative Results

If your blood tests come back negative there is still a chance you could have celiac disease. And if you have other risk factors and still suspect celiac disease, or if you are continuing to experience symptoms after a negative blood test, talk to your doctor about performing further tests such as an endoscopy or genetic screenings. Continued testing is encouraged to establish an accurate diagnosis, whether for celiac disease, non-celiac gluten sensitivity, or other diseases with similar symptoms.

Endoscopy

To confirm a celiac disease diagnosis, your doctor may recommend an upper gastrointestinal endoscopy. This procedure will allow your doctor to identify any inflammation or damage in your small intestines, which is a sure sign of celiac disease. Your doctor will take a small biopsy of your intestines during the endoscopy, which will help to confirm your diagnosis. In order for the endoscopy to be accurate, the patient must be on a gluten-containing diet. An endoscopy may sound like a big procedure, but it only takes about 15 minutes and is a low-risk procedure.

Non-Celiac Gluten Sensitivity

If your small intestinal biopsy results indicate that celiac disease is not present, but you and your doctor still suspect gluten is the cause of your symptoms, you may want to explore the possibility of non-celiac gluten sensitivity (‘gluten sensitivity’). Currently, there are no accepted methods of testing for gluten sensitivity.

Follow-Up Testing

Celiac disease damages the villi, which are finger-like projections in the small intestine. Villi are responsible for absorbing nutrients from food. Because of this, it is highly likely that people with celiac disease will be deficient in essential vitamins and nutrients when diagnosed. Laboratory tests should be done within three to six months following a diagnosis and annually for the rest of your life.

Genetic Testing

In order to develop celiac disease, you must have either the HLA-DQ2 or HLA-DQ8 genes. Without one of these genes, it is virtually impossible to develop celiac disease.

The celiac disease genes alone are not enough to develop celiac disease. Up to 40 percent of people have these genes, yet only a very small percentage of these people go on to develop it. That’s because an environmental trigger is necessary. This trigger can be a stressful event, illness, surgery, pregnancy, etc. Because having the genes does not automatically lead to celiac disease, genetic testing can only rule out celiac disease. It cannot concretely diagnose celiac disease.

Genetic testing is beneficial for relatives of people diagnosed with celiac disease. Since it is a genetic (hereditary) autoimmune disease, family members are also at risk for developing it. It’s recommended that relatives are given the blood test to determine if they have celiac disease. If the test is negative, it should be repeated every 2-3 years or sooner if symptoms occur. That’s because celiac disease can develop at any time. Those with negative test results can go on to get the gene test. If the gene test is negative, the relative can stop with regular screening.

Celiac Disease Treatment

A strict, lifelong gluten-free diet is the only way to manage celiac disease. Besides wheat, foods that contain gluten include:

Barley
Bulgur
Durum
Farina
Graham flour
Malt
Rye
Semolina
Spelt (a form of wheat)
Triticale

A dietitian who works with people with celiac disease can help you plan a healthy gluten-free diet. Even trace amounts of gluten in your diet can be damaging, even if they don’t cause signs or symptoms.

Gluten can be hidden in foods, medications and nonfood products, including:

Modified food starch, preservatives and food stabilizers
Prescription and over-the-counter medications
Vitamin and mineral supplements
Herbal and nutritional supplements
Lipstick products
Toothpaste and mouthwash
Communion wafers
Envelope and stamp glue
Play dough

Removing gluten from your diet will gradually reduce inflammation in your small intestine, causing you to feel better and eventually heal. Children tend to heal more quickly than adults.

Vitamin and mineral supplements

If your anemia or nutritional deficiencies are severe, your doctor or dietitian might recommend that you take supplements, including:

Copper
Folate
Iron
Vitamin B-12
Vitamin D
Zinc
Vitamin K

Vitamins and supplements are usually taken in pill form. If your digestive tract has trouble absorbing vitamins, your doctor might give them by injection.

Follow-up care

Medical follow-up at regular intervals can ensure that your symptoms have responded to a gluten-free diet. Your doctor will monitor your response with blood tests. For most people with celiac disease, a gluten-free diet will allow the small intestine to heal. For children, that usually takes three to six months. And for adults, complete healing might take several years.

If you continue to have symptoms or if symptoms recur, you might need an endoscopy with biopsies to determine whether your intestine has healed.

Medications to control intestinal inflammation

If your small intestine is severely damaged or you have refractory celiac disease, your doctor might recommend steroids to control inflammation. Steroids can ease severe signs and symptoms of celiac disease while the intestine heals.

Other drugs, such as azathioprine (Azasan, Imuran) or budesonide (Entocort EC, Uceris), might be used.

Treating dermatitis herpetiformis

If you have this skin rash, your doctor might recommend a medication such as dapsone, taken by mouth, as well as a gluten-free diet. And if you take dapsone, you’ll need regular blood tests to check for side effects.

Refractory celiac disease

If you have refractory celiac disease, your small intestine won’t heal. Then you’ll likely need to be evaluated in a specialized center. Refractory celiac disease can be quite serious, and there is currently no proven treatment.

Lifestyle and home remedies

If you’ve been diagnosed with celiac disease, you’ll need to avoid all foods that contain gluten. Ask your doctor for a referral to a dietitian, who can help you plan a healthy gluten-free diet.

Read labels

Avoid packaged foods unless they’re labeled as gluten-free or have no gluten-containing ingredients, including emulsifiers and stabilizers that can contain gluten. In addition to cereals, pastas and baked goods, other packaged foods that can contain gluten include:

Beers, lagers, ales and malt vinegars
Candies
Gravies
Imitation meats or seafood
Processed luncheon meats
Rice mixes
Salad dressings and sauces, including soy sauce
Seasoned snack foods, such as tortilla and potato chips
Seitan
Self-basting poultry
Soups

Pure oats aren’t harmful for most people with celiac disease, but oats can be contaminated by wheat during growing and processing. Ask your doctor if you can try eating small amounts of pure oat products.

Allowed foods

Many basic foods are allowed in a gluten-free diet, including:

Eggs
Fresh meats, fish and poultry that aren’t breaded, batter-coated or marinated
Fruits
Lentils
Most dairy products, unless they make your symptoms worse
Nuts
Potatoes
Vegetables
Wine and distilled liquors, ciders and spirits

Grains and starches allowed in a gluten-free diet include:

Amaranth
Buckwheat
Corn
Cornmeal
Gluten-free flours (rice, soy, corn, potato, bean)
Pure corn tortillas
Quinoa
Rice
Tapioca
Wild rice

Coping and support

It can be difficult, and stressful, to follow a completely gluten-free diet. Here are some ways to help you cope and to feel more in control.

Get educated and teach family and friends. They can support your efforts in dealing with the disease.
Follow your doctor’s recommendations. It’s critical to eliminate all gluten from your diet.
Find a support group. You might find comfort in sharing your struggles with people who face similar challenges. Organizations such as the Celiac Disease Foundation, Gluten Intolerance Group, the Celiac Support Association and Beyond Celiac can help put you in touch with others who share your challenges.

Preparing for your appointment

You might be referred to a doctor who treats digestive diseases (gastroenterologist). Here’s some information to help you prepare for your appointment.

What you can do

Until your appointment, continue eating a normal diet. Cutting gluten before you’re tested for celiac disease can change the test results.

Make a list of:

Your symptoms, including when they started and whether they’ve changed over time
Key personal information, including major stresses or recent life changes and whether anyone in your family has celiac disease or another autoimmune condition
All medications, vitamins or supplements you take, including doses
Questions to ask your doctor

For celiac disease, questions to ask your doctor include:

What’s the most likely cause of my symptoms?
Is my condition temporary or long term?
What tests do I need?
What treatments can help?
Do I need to follow a gluten-free diet?

Don’t hesitate to ask other questions.

What to expect from your doctor

Your doctor is likely to ask you questions, including:

How severe are your symptoms?
Have they been continuous or occasional?
What, if anything, seems to improve your symptoms?
What, if anything, seems to worsen your symptoms?
Have you been diagnosed with anemia or osteoporosis?
What medications and pain relievers do you take?

Celiac disease self-care

Eat a gluten-free diet to prevent symptoms and damage to the small intestine. Even a small amount of gluten may cause damage. Avoid all foods that contain wheat, rye, and barley. Foods that are often made with these grains include bread, bagels, pasta, pizza, malted breakfast cereals, and crackers.

What foods help heal celiac? Many foods, such as meat, fish, fruits, vegetables, rice, and potatoes, without additives or some seasonings, are naturally gluten-free. Flour made from gluten-free foods, such as potatoes, rice, corn, soy, nuts, cassava, amaranth, quinoa, buckwheat, or beans are safe to eat.

Celiac disease symptoms in females

Gas, diarrhea, and stomach pain, although these are less common in adults.
Unexplained iron-deficiency anemia.
Extreme tiredness or fatigue.
Depression or anxiety.
Missed menstrual periods.
Weight loss.
A very itchy skin rash with blisters.
Infertility (not being able to get pregnant).

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