Celiac Disease Care

Celiac disease is an autoimmune disorder. These disorders occur when your immune system attacks part of your body by mistake. In this case, eating gluten (proteins including gliadin in wheat, secalin in rye and secalin in barley) causes your immune system to attack your small intestines. Some people develop what’s known as non-celiac gluten sensitivity, or gluten intolerance. It causes celiac-like symptoms but doesn’t damage your intestines.

Celiac disease is passed down in families. It’s most commonly diagnosed in people of North American or European descent. It is also found in people from the Middle East, North Africa, Turkey, India and other places around the world.

Women are slightly more likely to be affected than men. The average age at the time of diagnosis is about 40 years, but you can get celiac disease at any age. Eating a gluten-free diet for the rest of your life is the only celiac treatment.

Celiac disease is a genetic autoimmune disease that’s triggered by ingesting gluten. If you have the disease, you make antibodies called autoantibodies. You also have an inflammatory reaction that attacks and damages the lining of the small intestine.

Non-celiac gluten sensitivity (NCGS) is a condition with symptoms like those in celiac disease. However, there’s no genetic link to this condition. There’s also no direct damage to the lining of your small intestine. Even though your small intestine is normal, an immune reaction triggered by gluten may be the cause of NCGS.

Symptoms such as fatigue, joint pain and “brain fog” may be seen in both NCGS and celiac disease. Symptoms improve or even disappear after withdrawing gluten from the diet. As a result, many patients with NCGS will try a gluten-free diet on their own.

Doctors only diagnose NCGS if we can rule out gluten or wheat allergies. Researchers are studying whether NCGS is a life-long condition. We’re also trying to learn how important it is to avoid gluten with the condition. Until we know more, it’s best for you to do whatever offers you the best quality of life.

A wheat or gluten allergy involves an adverse immune response to gluten or other wheat proteins. It can lead to these symptoms:

• Hives
• Sneezing
• Stomach discomfort
• Swelling around the mouth

Damage to your small intestine, however, is mild and usually short-lived. Some symptoms are the same as in celiac disease. But at times an allergy can result in life-threatening symptoms that start right away. Allergy testing may help pinpoint an allergic reaction.

There are four main categories of celiac disease:

Classical Celiac Disease

Classical celiac disease typically causes gastrointestinal (GI) problems. Examples include diarrhea, weight loss and abdominal pain. It also can cause nutritional problems because your small intestines don’t absorb nutrients properly. A biopsy of your small intestine will show villous atrophy (damage). But after starting a gluten-free diet, the damage usually improves. Symptoms should improve as well.

Non-Classical Celiac Disease

There are few or no GI symptoms in non-classical celiac disease. These symptoms are more common:

• Dermatitis herpetiformis (a very itchy skin rash)
• Iron-deficiency anemia
• Osteoporosis

Other possible symptoms include:

• Fertility issues
• Movement disorders (ataxia)
• Tingling in your hands and feet, called polyneuropathy
• Unexplained headaches
• Unexplained high liver enzymes

Doctors diagnose this condition with blood tests that look for antibodies that we commonly see with celiac disease. A biopsy of the small intestine will show damage. And with a gluten-free diet, symptoms improve. The ‘atypical’ presentation of celiac disease is currently the most common one.

Subclinical Celiac Disease

Subclinical celiac disease is also called silent celiac disease or asymptomatic celiac disease. This is celiac disease. But it doesn’t have any of the symptoms or other abnormal lab values, except for positive antibodies. Damage still occurs to the small intestine, however.

We usually find subclinical celiac disease through screening if you're at high risk. This might be the case if you have a family history of celiac disease or Type 1 diabetes, for example. We also find it during a routine endoscopy done for another reason. We recommend a gluten-free diet to prevent problems such as malabsorption, osteoporosis and infertility.

Potential Celiac Disease

If your blood tests are positive for celiac disease but your small intestine appears normal, we may diagnose potential celiac disease. This means celiac disease might develop later in life. If you don’t have symptoms or nutritional deficiencies, it’s not clear if you’ll benefit from a gluten-free diet. Most doctors recommend that you continue to eat normally, but be aware that celiac disease could be in your future.

Celiac disease tends to run in families. You may inherit the genes that cause the disease. You also can be exposed to similar environmental risks as family members. Even so, you might not get celiac disease.

To develop celiac disease, you must have genetic markers of either HLA DQ2, HLA DQ8 or both of these genes. If you have the disease, we screen for it among your family members. They may have inherited the genes and have one of the forms of celiac disease.

Environmental or physiological (related to the body) factors also may contribute to the onset of celiac disease:

• Gastrointestinal infections, especially viral infections
• Pregnancy or childbirth
• Severe emotional stress
• Surgery

Researchers are looking into these other factors that may influence the symptoms of celiac disease:

• Age when gluten was introduced
• Breastfeeding
• Cow’s milk formulas
• Quality of cereals
• Quantity of gluten
• Use of probiotics

No one completely digests gluten. If you have celiac disease, eating gluten causes leaky gut. Your immune system can damage the villi (fingerlike hairs) that line your small intestine. These villi take in nutrients from food and move them into the bloodstream where your body uses them. Without enough healthy villi, you won’t get enough of the nutrients you need.

Most of the time, your body makes antibodies against gluten. Your body also makes antibodies against tissue transglutaminase, a common enzyme in your intestinal lining. We can detect these antibodies with blood tests.

It’s best not to make changes to your diet before consulting a physician. Always speak to a doctor if you have any symptoms that concern you.

If you start a gluten-free diet before getting tested, the test results may not be accurate. Your intestines will start to heal, which will make it difficult to get a diagnosis.

The longer you go without a diagnosis and treatment, the greater the chance of developing long-term health problems. As soon as we know you have celiac disease, we can screen for health problems related to the condition. These health problems include osteoporosis, as well as iron, folate and vitamin D deficiencies. The longer you’re exposed to gluten, the greater the risk of developing associated autoimmune diseases, too.

These symptoms and associated conditions usually respond to a gluten-free diet:

• Abdominal bloating
• Abdominal discomfort and pain
• Abnormally high liver enzymes on blood testing
• Anemia from a deficiency of iron, B12, and/or folic acid (if there aren’t any other GI problems)
• Angular cheilitis (cracks at the corners of your mouth)
• Canker sores (aphthous ulcers)
• Constipation
• Dermatitis herpetiformis
• Diarrhea
• Excess gas
• Fatty stools
• Fecal urgency or incontinence (stool soiling accidents)
• Nutritional deficiencies, such as protein, calories, iron, calcium, B vitamins, vitamin D, vitamin A, vitamin E, vitamin K, zinc and other minerals

Keep in mind, celiac disease can coexist with other conditions, such as small intestinal bacterial overgrowth, other food intolerances or irritable bowel syndrome (IBS). So symptoms such as diarrhea, abdominal bloating, gas and constipation can persist even with a gluten-free diet.

If you’re still having problems more than a year after going gluten free, your gastroenterologist may consider another cause.

These symptoms and associated conditions sometimes respond to a gluten-free diet:

• Alopecia (hair loss)
• Dental enamel loss
• Depressed mood
• Fatigue
• Follicular keratosis (a genetic skin disorder)
• Fructose malabsorption
• Heartburn
• Joint pains
• Lactose intolerance
• Microscopic colitis (a condition that causes inflammation of the inner lining of your colon)
• Poor concentration
• Recurrent miscarriages
• Reduced fertility (men and women)
• Reduced function of the spleen
• Short statur
• Osteoporosis and osteopenia (thinning of your bones)

These symptoms and associated conditions are not expected to respond to a gluten-free diet:

• Addison’s disease
• Autoimmune hepatitis
• Cerebellar ataxia (poor coordination)
• Fibrosing alveolitis (fine scarring in the air sacs of the lungs)
• IgA deficiency
• IgA nephropathy (inflammation in the kidneys)
• Inflammatory bowel disease (IBD)
• Lung cavities
• Lupus
• Peripheral neuropathy (tingling and numbness of your hands and feet)
• Primary biliary cirrhosis
• Pulmonary hemosiderosis (bleeding in the lungs)
• Rheumatoid arthritis
• Seizure disorders
• Small intestinal bacterial overgrowth
• Thyroid disease
• Type 1 diabetes
• Vitiligo (patches of lost skin color) 

People with celiac disease get diagnosed with inflammatory bowel disease (IBD) — including Crohn’s disease and ulcerative colitis — more often than people without celiac. This might be because celiac testing helps doctors find IBD earlier than we might have otherwise.