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What Is Celiac Disease? Symptoms, Causes, Diagnosis, Treatment, and Prevention

Celiac disease is an autoimmune condition that prevents proper nutrient absorption and the digestion of gluten. When people diagnosed with the condition are exposed to gluten — a binding protein common in grains but also in makeup products — the immune system malfunctions and attacks the walls of the small intestine, which is responsible for absorbing nutrients from food, according to the Celiac Disease Foundation. (1) People with celiac disease have a swollen and irritated small intestine, which can interfere with this absorption, leading to nutrient deficiencies.

The condition requires avoiding gluten to manage symptoms.

What is Gluten?

But first, it’s important to understand just what gluten is. Gluten is a protein found in barley, rye, and wheat. It’s a staple in the Western diet that you’ll encounter in most breads, cereals, and pasta. However, it can also be hidden in many other food products. For example, you’ll often see wheat flour added to many sauces and even chocolates! Many foods may often be cross-contaminated with gluten as well, including oats. (Did you know? Hidden gluten is everywhere and can actually be found in personal care products such as skin care!)

It’s important to know what gluten is, as it can create a toxic response in people with autoimmune disease, including those with Hashimoto’s.

The most severe form of gluten response is seen in people with celiac disease.

What is Celiac Disease?

An estimated 1 percent of people (about 3 million worldwide) have celiac disease. Those with the disease must stay absolutely 100% gluten free in both their diet and their lifestyle, or else they will have significant life-affecting symptoms.

For those with the disease, exposure to gluten triggers the release of zonulin, a chemical that signals the tight junctions of the intestinal wall to open up. This creates intestinal permeability (also known as leaky gut), where toxins, partially-digested food particles, and microbes are allowed to pass into your bloodstream. The body’s immune system is then triggered to attack these invaders. Every time you consume the particular food, (gluten, in this case), your immune system is engaged again, resulting in a variety of symptoms.

But those with celiac disease will also experience an autoimmune attack on the intestines with every bite of gluten. As mentioned above, this reaction is mediated by the IgA branch of the immune system and results in intestinal damage.

This attack destroys the villi, which are delicate, hair-like projections that cover the intestines. The villi are important as they help the body digest and absorb nutrients from food.

This destruction of the villi can result in a malabsorption of nutrients such as selenium, a well-known risk factor for Hashimoto’s; as well as lead to issues relating to nutrient deficiencies such as fatigue, failure to thrive, anemia, osteoporosis, digestive issues, and autoimmune diseases.

Celiac disease is often referred to as “the great imitator,” as many of the symptoms of the disease mimic those of other diseases. It can go undiagnosed for a long time as it may be misdiagnosed as something else. Symptoms vary widely, with some people experiencing the classical severe diarrhea, nausea, weight loss, vomiting, and acid reflux, while others may not experience any gut issues at all.

Left undetected, people with celiac disease are at greater risk of developing intestinal cancer.

The Celiac and Thyroid Connection

Celiac disease can co-occur with hypothyroid. In fact, studies have estimated that between 1.2 and 15 percent of hypothyroid patients also have celiac disease! (2) Furthermore, the antibodies produced in celiac disease can cross-react with thyroid antibodies because they may share similar molecular structures, so molecular mimicry may be one of the reasons for the common co-occurrence of both conditions. (3)

When I first began to research lifestyle interventions that could improve my condition, I came across an Italian study focused on people who had subclinical hypothyroidism, and celiac disease, but who had not been following a gluten free diet.

As the gluten free diet is indicated for people with celiac disease, the diet was helpful for the study participants’ intestinal symptoms and helped them recover the health of their intestines. There were also improvements in thyroid function! The study found that when most of those with subclinical hypothyroidism were placed on a gluten free diet, their thyroid function normalized! 71 percent of people who had subclinical hypothyroidism (a mildly underactive thyroid) and who had strictly followed a one-year gluten withdrawal (as confirmed by intestinal mucosa recovery) saw a return to normal thyroid function.

Additionally, 19 percent of people who followed the gluten free diet were able to normalize their thyroid antibodies, no longer testing positive for Hashimoto’s. The researchers of the study concluded: “In distinct cases, gluten withdrawal may single-handedly reverse the abnormality.” (1)

In another study involving patients with hypothyroid and celiac disease, the average dose of levothyroxine needed (prior to the study) to treat patients with hypothyroid alone was lower than the average dose required to treat patients with both conditions (that is, hypothyroid and celiac disease). Furthermore, the study showed that when the hypothyroid and celiac disease patients went on a gluten free diet, their TSH levels decreased, along with the amount of T4 thyroid medication needed to achieve a targeted lower TSH level!

The study concluded that their TSH likely decreased because of better absorption of thyroid medications and the nutrients the body needs to make thyroid hormones. This makes sense as untreated celiac disease can significantly impair medication absorption. However, I’ve also seen some patients with celiac disease and hypothyroidism wean off thyroid medications completely after going gluten free over the course of 3-12 months, so I suspect that some of the patients in the study also had a recovery of thyroid function that was missed by the researchers because the patients were not followed for a long enough period of time. (4)

In yet another study involving 104 Hashimoto’s patients, researchers found that 50 percent of patients with Hashimoto’s also had celiac-specific genes, putting them at risk for celiac disease. (However, it’s important to remember that though these people had the right genes, genes are not always our destiny- an environmental trigger is often required for the expression of celiac genes and for the condition to manifest.)

Signs and Symptoms of Celiac Disease

Signs and symptoms of celiac disease vary widely based on the individual. In fact, some people with the condition are asymptomatic. Generally speaking, though, there are some telltale signs of that you should know.

First, digestive problems can occur in anyone with celiac disease, but they may be more common in children with the disease than adults. Here are some of the digestive symptoms that may occur, per the National Institute of Diabetes and Digestive and Kidney Disease (NIDDK): (2)

  • Abdominal pain, bloating, or gas
  • Chronic diarrhea (may be constant, or on and off for several weeks)
  • Constipation
  • Pale, foul-smelling, or oily stool
  • Nausea and vomiting
  • Unexplained weight loss

On the flip side, celiac disease can cause problems in other parts of the body, too. And some of these symptoms are more common in adults than in children.

Nondigestive symptoms may include: (2)

  • Anemia (low red blood cell count)
  • Fatigue (extreme tiredness that doesn’t go away with sleep)
  • Infertility or miscarriages
  • Missed menstrual periods
  • Depression or anxiety
  • Seizures
  • Canker sores or ulcers inside the mouth
  • Bone or joint pain
  • Osteoporosis (weak, porous bones that break more easily)
  • Itchy, blistery skin rashes
  • Hair loss
  • Tingling or numbness in hands or feet
  • Headaches

Causes and Risk Factors of the Disease

Unfortunately, researchers haven’t yet been able to identify what exactly causes celiac disease. However, they think it has something to do with genetics combined with environmental factors.

Having a family member with celiac disease can put you at a higher risk for the condition, research shows. For example, someone with a first-degree relative has a 1 in 22 chance of getting the condition, too, notes the University of Chicago. (3)

Indeed, there’s a so-called “celiac gene.” Among those with celiac disease, 95 percent have the HLA-DQ2 gene, and most of the rest of that remaining 5 percent have the HLA-DQ8 gene, per Beyond Celiac. (4)

People with a genetic disorder, such as Down syndrome or Turner syndrome, are also more likely to develop the disease, notes Family Doctor. (5)

If you have another autoimmune disorder, you also are more likely to develop celiac disease. According to the Celiac Disease Foundation, those conditions include: (6)

  • Rheumatoid arthritis
  • Lupus
  • Thyroid disease
  • Sjogren’s syndrome
  • Type 1 diabetes

How Is Celiac Disease Diagnosed?

A number of tests can help your doctor figure out whether you have celiac disease or another digestive condition.

Testing for Celiac Disease

The risk for celiac disease increases if you have a family history of the disease, European ancestry, and/or a personal history of other autoimmune disorders.

There are several options to diagnose celiac disease. However, current testing is far from perfect, with blood-screening tests often coming back negative. Additionally, a person must be eating gluten to test positive for celiac disease! These are the current blood-screening tests available:

  • The Tissue Transglutaminase Antibodies (tTG-IgA) test: This blood test is often used to diagnose celiac disease. If you are currently on a gluten free diet, a gluten challenge (which requires you to have eaten two slices of wheat-based bread over the course of 6 to 8 weeks) is often recommended prior to taking this test, to allow any antibodies to appear in your bloodstream. Unfortunately, this test may results in false negatives and false positives. (5)
  • IgA Endomysial antibody (EMA) test: This test is not as sensitive as the tTG-IgA test. It’s usually used for patients that are difficult to diagnose, but about 5-10 percent of those with celiac disease do not have a positive EMA test.
  • Total serum IgA test: This test checks for IgA deficiency, which is often associated with celiac disease. IgA deficiency can cause false negatives on tTG-IgA or EMA tests.
  • Deamidated gliadin peptide (DGP IgA and IgG) test: This test can be used to further screen for celiac disease in those who test negative for both tTg and EMA antibodies, as well as in those with IgA deficiency.

Please note, it’s possible for people with celiac disease to have negative test results, especially if they’re already following a gluten free diet.

The biopsy of the small intestine is considered the “gold standard” way to confirm a diagnosis and will find more cases of celiac disease than the blood tests. However, again, the person must be eating gluten in order for the biopsy results to be accurate.

A genetic test is a test for celiac disease that can be utilized without a gluten trial. Most people with celiac disease have the HLA-DQ2 and HLA-DQ8 genes, and about 30 percent of all people have these genes. Please note, the genes only predict susceptibility, not whether the celiac disease is expressed. One can do genetic testing through various companies such as Ulta Lab Tests to help determine if you are genetically at risk for developing celiac disease.

If you’re already gluten free and feeling better, I personally believe that your body’s own response to gluten is the best test to determine if you should be gluten free, and I am apprehensive about “gluten challenges” just to get a diagnosis. Specifically, this test is not recommended for pregnant women who have been gluten free, as they can precipitate a miscarriage. But even if you’re not pregnant, I believe in treating your body well and nourishing it!

Duration of Celiac Disease

Celiac disease is a lifelong disease and not something individuals can outgrow. People with the condition must stop eating gluten for the rest of their lives.

In general, once individuals with celiac disease stop eating gluten, their symptoms will ease within a few days. The small intestine should heal completely in several months, though it may take up to two years for the body to heal completely in older individuals, per Johns Hopkins Medicine. (8)

Treatment and Medication Options for Celiac Disease

Adhering to a gluten-free diet is the best way to keep symptoms of celiac disease under control, according to a study published in July 2016 in the journal Nutrients. (9)

At first, the news of a celiac disease diagnosis may be tough to hear. For some, it might mean completely overhauling their diet. But working with a dietitian can help with the transition to a gluten-free diet while still eating healthy and nutritious foods. You’ll be instructed how to:

  • Use food and product labels to identify ingredients that contain gluten
  • Understand which foods are naturally gluten-free
  • Find and eliminate hidden sources of gluten from the diet
  • Make healthy food choices
  • Design meal plans

After starting on a gluten-free diet, individuals with celiac disease will continue to see a doctor for periodic checkups to make sure the condition is improving. Many doctors recommend a follow-up visit four to six weeks after starting on the diet, notes Coeliac UK. (10)

How to Develop a Gluten-Free Diet to Control Celiac Disease

Are There Supplements That Are Good for People With Celiac Disease?

People with celiac disease are at risk of nutritional deficiencies because the disease can limit the small intestine’s ability to absorb nutrients from food, per the Celiac Disease Foundation. (11) Your doctor can test for nutritional deficiencies with a simple blood test.

According to the Gluten Intolerance Group, people with celiac disease often have low levels of: (12)

  • Calcium
  • Vitamin B12
  • Folate
  • Vitamin A, Vitamin E, Vitamin D, and Vitamin K

Taking a multivitamin or nutritional supplement can help you build your levels of essential nutrients back up.

Gluten-free diets are sometimes low in fiber, which can lead to constipation. A fiber supplement with psyllium seed husks can also help, as can fiber-rich foods, like fruits and veggies. (12)

Can Taking Medication Help Manage Celiac Disease?

A small percentage of people with celiac disease find that their symptoms don’t improve, even with a strict gluten-free diet.

Symptoms may go away initially but then return, even in the absence of gluten. It’s unclear why this happens. Doctors call this refractory celiac disease. If you have refractory celiac disease, your doctor may prescribe a steroid medication, such as Deltasone (prednisone). (7)

Steroids are typically taken for a short period of time to suppress the immune system and stop the body’s harmful immune response.

How to Develop a Gluten-Free Diet to Control Celiac Disease

Gluten is found in many commonly loved foods, including traditional pizza crust, several types of sandwich breads, pasta, tortillas, cake, cookies, and even soy sauce. (1) But for people with celiac disease, knowing the foods and products gluten lurks in — and then avoiding them — is key for keeping symptoms controlled and preventing an attack.

Foods to Avoid if You Have Celiac Disease

Any foods made with wheat, barley, or rye contain some amount of gluten. That means that people with celiac disease shouldn’t eat most breakfast cereal, bread, pasta, and processed foods. (1)

Processed foods that may contain gluten include:

  • Bouillon cubes
  • Brown rice syrup
  • Candy
  • Chewing gum
  • Chips, including seasoned tortilla and potato chips
  • Cold cuts, hot dogs, salami, and sausage
  • Communion wafers
  • French fries
  • Gravy
  • Imitation fish
  • Rice mixes
  • Soy sauce
  • Beer and malt beverages (1,13)

Soups and sauces are common sources of hidden gluten, as wheat is often used as a thickener. Pay special attention to sauces or soups that are cream based.

Gluten-Free Foods

Cutting gluten out of your diet may seem like a difficult task, but many foods are naturally gluten-free.

In general, the following food groups are naturally gluten-free:

  • Fruits
  • Vegetables
  • Fresh cuts of meat and poultry
  • Fish and seafood
  • Dairy
  • Beans, legumes, and nuts

Beware, though, that prepared or processed versions of any of the above foods, such as sausage or ice cream, may contain gluten.

There are many gluten-free grains and starches that you can substitute for wheat, barley, or rye products:

  • Rice
  • Corn
  • Potato (but not potato chips)
  • Tapioca
  • Sorghum
  • Soy
  • Quinoa
  • Millet
  • Arrowroot
  • Amaranth
  • Teff
  • Flax
  • Chia
  • Gluten-free oats
  • Buckwheat
  • Nut flours
  • Bean flours

Tips for Dining Out on a Gluten-Free Diet

The following strategies may help you stick to your gluten-free diet when eating out:

  • Choose a restaurant with gluten-free options. This means picking a place that serves naturally gluten-free foods or has a special gluten-free menu.
  • Inform your waiter. Let them know you have celiac disease and may get sick if you eat anything containing gluten, including flour, bread crumbs, or soy sauce. Also ask them to inform the chef or cook. This way, you’ll have more confidence that nothing on your plate has touched gluten.
  • Ask questions. Don’t assume anything is gluten-free. Omelets, for instance, may have pancake batter added to the egg mixture to make them fluffier, and baked potatoes can be coated with flour to make the skins brown and crispy.

Nonfood Sources of Gluten

Some medicines and nutritional supplements, such as vitamins, contain gluten.

Ask your pharmacist if you aren’t sure whether a medication, supplement, or over-the-counter (OTC) drug contains gluten. Some varieties of lip gloss, lipstick, and lip balm also contain gluten. (11,14)

Prevention of Celiac Disease

At this time, there is no proven way to prevent celiac disease.

The best way to keep symptoms of celiac disease under control is to maintain a gluten-free diet.

Complications of Celiac Disease

Getting treatment for the disease and changing lifestyle habits, such as following a gluten-free diet, can help prevent long-term complications.

If left untreated, the Celiac Disease Foundation notes that long-term complications of the disease may include: (15)

  • Malnutrition
  • Anemia (low red blood cell count)
  • Osteoporosis (weak bones caused by loss of bone density)
  • Infertility or miscarriage
  • Certain cancers (intestinal lymphoma, small bowel cancer)
  • Lactose intolerance
  • Dermatitis herpetiformis (an itchy rash of bumps and blisters) or other skin conditions

Research and Statistics: How Many People Have Celiac Disease?

Regardless of what age you’re looking at, celiac disease is seriously underdiagnosed, likely because its symptoms manifest differently depending on who you are, according to an article published in January 2016 in Clinical and Translational Gastroenterology. (16) For example, some people with the disease have digestive problems, especially diarrhea, while others experience problems in other parts of the body, such as anemia, fatigue, headaches, and joint pain.

But best estimates put the prevalence of the condition around 1 in 100 people, or about 1 percent, of the U.S. population, per the Celiac Foundation. (17)

Related Conditions and Causes of Celiac Disease

Unfortunately, receiving a celiac disease diagnosis can be tough for many people because its symptoms are often confused with those of other conditions. But it’s important to know that celiac is distinct from those conditions, including gluten intolerance and a wheat allergy, because of its autoimmune status, whereby the immune system attacks the small intestine, leading to malabsorption.

If you’ve been tested for celiac and the results prove negative, there’s a chance you simply have an allergy to wheat.

Wheat allergies affect millions of Americans, according the the American College of Allergy, Asthma, and Immunology, and and symptoms include: (18)

  • Headaches
  • Stuffy or runny nose
  • Hives or a skin rash
  • Nausea and gastrointestinal symptoms, including diarrhea or vomiting
  • Asthma
  • Anaphylaxis (though this is less common)

These symptoms may appear after eating foods with wheat, including bread, cereal, or granola. Because these foods also contain gluten, a wheat allergy is commonly called a “gluten allergy,” though there’s actually no such thing.

Your doctor can do a blood test to diagnose you with a wheat allergy. (18)

Treatment includes avoiding foods with wheat and using either corticosteroids or antihistamines. You should also have epinephrine on hand in case of an allergic attack. (18)

Could You Have Intolerance to Gluten (Nonceliac Gluten-Sensitivity)?

Gluten intolerance, also called nonceliac gluten sensitivity (NCGS), is a possibility if you’ve tested negative for both celiac disease and a wheat allergy. But unfortunately, there isn’t a good test to diagnose this condition.

If your doctor suspects you have gluten intolerance, he or she may suggest a blood test then a biopsy. If the biopsy is normal, your physician may suspect NCGS, noted an article published in May 2014 in The American Journal of Gastroenterology. (19)

The main treatment for NCGS is a gluten-free diet, but as with celiac, be sure to work with your healthcare team to make sure you’re properly nourishing your body.

Should You Avoid Gluten if You Test Negative for These Conditions?

Probably not, experts say. In fact, research suggests adopting a gluten-free diet without a firm medical reason to do so may be bad for you — for example, it’s linked to an increased risk for heart disease, anemia, and osteoporosis, noted a study published in May 2017 in BMJ. (20)

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