Supporting you to live positively with this life-long condition.
What is Celiac Disease
Celiac disease is a bowel disorder caused by a reaction to ingested gluten, a protein found in wheat, rye and barley and contaminating all commercial-grade oats. If you have celiac disease, eating gluten damages the villi (small finger-like structures) that make up the lining of your small bowel. This injury prevents nutrients from being properly absorbed.
Celiac disease is considered an autoimmune disorder because it results in the body damaging its own tissues. It is the only autoimmune disease in which the trigger is known. Celiac disease is not a food allergy. If you have the disease, your body’s response to gluten differs from the immune response caused by a food allergy.
Rates of celiac disease have nearly doubled in the last 25 years in western countries. In Canada, about 110,000 people have been diagnosed with the disease. It is suspected that up to an additional 220,000 Canadians are living with the disease but have not yet been diagnosed. The disease can occur at any stage of life, including childhood. It may be slightly more common in women than in men, though the higher rate of diagnosis in women could be due to women getting more regularly scheduled health care.
Celiac or gluten sensitivity?
Some people test negative for celiac disease and show no signs of the intestinal damage. However, they still react badly to eating wheat with symptoms such as abdominal pain, fatigue, and headache. Such people are said to be gluten-sensitive or intolerant. Gluten sensitivity exists on a spectrum of severity, so not all people react to the same amounts or types of gluten-containing foods in the same way.
Recent evidence suggests that people with gluten sensitivity may react to other proteins or carbohydrates in wheat, so “wheat sensitivity” or “wheat intolerance” may be more fitting terms for the condition.
For those living with celiac disease, gluten causes normal villi in the small intestine to become damaged.
What causes celiac disease?
Celiac disease often runs in families. If you have a first degree relative (parent, sibling, or child) with the disease, you have an 8 to 15% chance of getting it, and a 5% chance of getting it if one of your second-degree relatives is affected. A few medical conditions can also put you at higher risk, such as:
|Type 1 diabetes||4 to 15%|
|Other autoimmune diseases (thyroiditis,|
rheumatoid arthritis, multiple sclerosis,
primary biliary cirrhosis)
|3 to 5%|
|Down, Turner or Williams Syndrome||4 to 8%|
|Osteoporosis (weak bones that fracture easily)||2 to 4%|
|Deficiency in immunoglobulin A (IgA)||10 to 30%|
|Irritable bowel syndrome||2 to 5%|
Not all people with a genetic vulnerability to celiac disease develop the condition. An additional “trigger” is needed, such as stress, infection, surgery or pregnancy. In children, recurrent gastrointestinal infections can bring on the disease.
Celiac Disease with Dr. Sanjay Murthy
At the 2012 CDHF Digestive Health Public Education Forum, Dr. Sanjay Murthy gave an interesting and educational presentation on Celiac Disease to a capacity crowd.
Signs and Symptoms
Symptoms vary greatly from person to person and some people – especially those with associated conditions – have no symptoms at all. Many adults with celiac disease do not suffer from classic digestive symptoms. Instead, they may experience such symptoms as unexplained fatigue, mouth cankers or joint pain, making diagnosis all the more challenging.
Not all affected individuals lose weight; in fact, about 30% are overweight. About 10% have a skin condition called dermatitis herpetiformis, an intensely itchy rash usually found on the elbows, knees and buttocks. It may appear initially as groups of blisters that form small red lesions from being scratched.
In children, common additional symptoms include dental enamel defects, irritability, poor growth or failure to thrive, and delayed puberty.
Some people first come to their doctor’s attention because of unexplained lab test results such as a low red blood cell count (anemia) or elevated liver enzymes.
In other cases, celiac disease is diagnosed when a patient undergoes an upper endoscopy for other reasons (e.g., gastroesophageal reflux disease). If you have celiac-type symptoms and have an upper endoscopy, ask your physician to obtain tissue to help diagnose (or rule out) celiac disease.
As shown below, symptoms extend beyond the gastrointestinal (GI) tract to all parts of the body and even the mind.
GI symptoms of celiac disease
- Abdominal pain
- Nausea and vomiting
- Gas, flatulence
- Diarrhea, foul-smelling stools
- Mouth ulcers
- Dental enamel abnormalities
- Lactose intolerance
Other bodily symptoms of celiac disease
- Unhealthy pale appearance
- Weight loss (though 30% of affected people are overweight)
- Fluid retention
- Bone and joint pain
- Muscle cramps, weakness and wasting
- Easy bruising
- Skin rash
- Infertility and recurrent miscarriages
- Poor growth, delayed puberty in children
- Perceptual/psychological symptoms
- General weakness and fatigue
- Tingling in legs and feet (from nerve damage)
- Persistent hunger (due to malnutrition)
- Vertigo (dizziness)
- Anxiety, depression
Alarm symptoms of celiac disease
Some alarm symptoms are not unique to celiac disease. These symptoms may signal other, possibly more serious health issues. Consult your doctor if you experience any of the following:
- Rectal bleeding with dark red blood mixed in with the stool
- Unintended weight loss
- Persistent diarrhea
- Abdominal pain that is not relieved by a bowel movement or that wakes you up at night.
Risks of Untreated Celiac Disease
If you have celiac disease, living a gluten-free life is imperative to your good health. Over a period of time, untreated celiac disease can lead to such medical problems as:
This means you’re unable to digest the milk sugar (lactose) found in dairy products. While not dangerous, lactose intolerance can lead to uncomfortable GI symptoms.
Celiac disease interferes with the absorption of bone-strengthening substances like calcium and vitamin D and may also damage bones directly.
If you’re malnourished, you feel weak and tired and you’re unable to recover properly from infections and injuries.
Such as type 1 diabetes and inflammation of the thyroid, joints, nerves or liver.
Untreated celiac disease slightly increases the risk of colon cancer and lymphoma (cancer of the lymphatic system). Whether or not you have celiac disease, it’s important to be aware of colon cancer symptoms, which include blood in stools, unexplained weight loss, and changes in bowel habits lasting more than 4 weeks.
Infertility and Miscarriages
There is evidence that implies that there may be a connection between recurring miscarriage, infertility, and autoimmune disorders. Pregnant women who may unknowingly have celiac disease are more likely to suffer a miscarriage. Additionally, they are at risk of developing anemia or going into preterm labor.
Failure to thrive, poor growth or delayed puberty (in children)
Currently, there is no definitive link. However many researchers attribute malnutrition, and malabsorption of important nutrients to the delay in puberty in children with undiagnosed celiac disease experience a delay in puberty and struggle to thrive and grow in the same way that healthy children do.
To reduce your chances of developing these complications, ensure you follow an entirely gluten-free diet for life. Multiple studies have shown that your risk of getting almost all these complications falls quickly to the risk in the general population – as long as you maintain a gluten-free diet. Remember that even tiny amounts of gluten can trigger symptoms that increase your risk of complications over time. As an example, as little as 1/60 of a slice of bread can cause intestinal injury.
Tests and Treatments
Many people go years without knowing they have celiac disease, while others believe they have it when they actually don’t. Identifying celiac disease can be tricky (if you’re not looking for it), because symptoms may be general, vague or entirely absent. Tests and treatment for celiac disease is a bit of a journey, but it is manageable with practice and open communication with your doctor.
If you think you may have celiac disease and your doctor doesn’t raise the possibility, don’t be afraid to bring it up yourself. In Canada, the average time from the start of symptoms to diagnosis is 12 years for adults and 1 year for children. This should not be the case. Fortunately, new blood screening tests are improving the speed and accuracy of diagnosis. The most effective of these tests are:
- IgA anti-transglutaminase antibody test (tTG)
- IgA anti-endomysial antibody test (EMA)
If you have a positive blood test for celiac disease, you’ll need an upper endoscopy and intestinal biopsies (tissue samples) to know for sure whether you have the disease. This safe outpatient or day procedure is performed under sedation.
If you want, you can reduce the gluten in your diet to the equivalent of 1-2 slices of bread per day without affecting the biopsy results but do not cut out gluten altogether as a gluten free diet before the biopsy may reduce damage which makes it very difficult to confirm the diagnosis.
How is celiac disease treated?
Treatment for celiac disease is both simple and challenging. Those with the disease must maintain a strict gluten-free diet for life. By avoiding gluten, you allow your intestine to heal. Your other symptoms should gradually subside and your risk of developing serious complications of untreated celiac disease will be reduced.
Going gluten-free can be challenging because it requires you to educate yourself about foods that contain gluten, to watch for “hidden” gluten in food products and medications, and to give up a number of common foods you may enjoy. Here’s a partial list of where gluten can be found:
- Most breads and baked goods (e.g., muffins, donuts, cakes)
- Many other grains, including spelt and kamut
- Most breakfast cereals
- Most pasta
- Some soups, sauces and salad dressings
- Some processed meats and fish (e.g., wieners, imitation seafood)
- Most beer (which contains barley)
- Some cosmetic products
- Some condiments
Fortunately, the world has become a much friendlier place for people who can’t eat gluten. In fact, in 2009 the gluten-free diet became the # 1 “speciality diet” in North America. Grocery stores stock an increasing number and variety of gluten-free products, including gluten-free versions of pasta, bagels, crackers, pretzels, and other baked goods. Be sure that these products are nutritionally sound before using them. Gluten-free options are also gaining ground in restaurants, cookbooks and cooking websites. You should also check out our 7 day gluten free diet plan!
Once you’ve been diagnosed with celiac disease, ask your doctor to refer you to a registered dietitian with expertise in celiac disease for nutritional counselling. Your local chapter or the national office of the Canadian Celiac Association can also provide excellent resources about diagnosis and management. You will most likely need to start Vitamin D and may also require extra iron and multivitamins until your intestine heals.
You should get follow-up blood testing to verify that your intestines are healing. This will be done ideally 3-6 months after you’ve started a gluten-free diet and every 1-2 years after that. Some, but not all people, require a repeat intestinal biopsy.
Adults living with celiac disease who have symptoms of malabsorption (such as diarrhea, weight loss, or anemia) or bone pain need a bone mineral density (BMD) test at diagnosis and annually afterwards until the problem is resolved. You should also request BMD testing if you are a woman at menopause or a man over age 50. Children’s bones heal rapidly and most do not require a BMD.
Managing celiac disease
There is no reason to restrict your social activities if you have celiac disease. As previously noted, many restaurants now offer gluten-free options. You don’t need to be shy to ask waiters about modifying dishes to meet your health requirements.
You can also prepare for restaurant outings by checking out their online menus. If you know that gluten-free choices won’t be available, you can eat before going out, bring gluten-free snacks with you or choose a more appropriate restaurant.
Keeping tabs on your overall health, especially the possible complications of celiac disease, can help put your mind at rest and manage problems before they get serious.
For example, it’s a good idea to have regular screening tests for osteoporosis. If a test shows you have strong bones, it’s one less thing for you to worry about. If your bones show signs of weakening, you and your doctor can begin a treatment plan, which could include calcium, vitamin D supplements, and possibly prescription medications.
Celiac disease has a strong presence in the digital world. Take advantage of discussion forums, support groups, and gluten-free apps for smart phones and tablets. Some of them have food databases you can search to find gluten-free products and menu options.
Finally, being open with family and friends can help them accommodate your dietary needs. If you feel uncomfortable divulging details about your personal health, you can give people this guide to read.
Gluten-free cooking tips
The following tips can make your life easier in the kitchen:
- Start with recipes that include very little flour or other gluten-containing ingredients. Then omit those ingredients or use gluten-free substitutes instead.
- Choose old-fashioned recipes that involve preparing dishes “from scratch” rather than using convenience foods.
- Learn to make basic sauces and gravies used in soups and casseroles.
- Use herbs and spices for flavouring. In Canada, spices are gluten-free but seasonings may contain gluten.
- Invest in a gluten-free cookbook.
- Use gluten-free macaroni, bread, and corn tortillas.
- Serve lean protein (e.g., chicken breast, fish, eggs, low-fat cheese), vegetables and fruits while developing your celiac-friendly cooking skills.
- Check out our 7 day gluten free diet plan!
Celiac Disease, Gluten Sensitivity and Diet
There is a lot of talk these days about gluten. Dr. Khush Jeejeebhoy is an expert and shares his insights on how to distinguish between disease and sensitivity and how this can affect your diet and health.
Statistics on Celiac Disease
Below are some statistics on celiac disease:
- Celiac disease is a specific autoimmune digestive disorder of the small intestine. Celiac disease is not a form of food allergy. In celiac disease, the immune system reacts against gluten, a protein found in wheat, causing damage to villi and loss of surface area for absorbing nutrients.
- Celiac disease is one of the most common digestive disorders and its prevalence has been increasing. (Lebwohl et al. 2015; Lerner et al. 2015)
- In Canada, it is estimated that nearly 1.0% of the population (or 1 in 114 Canadians) are affected by celiac disease, although about 90% of celiac disease cases remain undiagnosed. (Health Canada 2018; Jamnik et al. 2017)
- A study showed that Canada is the country with the greatest increase (about 35%) in the incidence and prevalence of celiac disease over the past decades. (Lerner et al. 2015)
- The risk for developing celiac disease is higher for those who have a 1st degree relative with the disease, and the prevalence is about 7.5% in this population. (Singh et al. 2015)
- About 30% of adults with celiac disease have one or more autoimmune disorders, compared to about 3% in the general population. (Reilly et al. 2012)
- The prevalence of celiac disease in type 1 diabetes patients is 5 to 7 times more than in the general population. (Kaur et al. 2018)
- Patients with celiac disease are at increased risk of cancer, including non-Hodgkin’s lymphoma and small intestinal adenocarcinoma. (Lebwohl et al. 2015)
- Lifelong adherence to a strict gluten-free diet is the standard treatment for celiac disease, but this is burdensome, expensive and can be socially restrictive.
- Gluten-free products are 2.5 times more expensive than regular items, making the overall cost of the disease for individuals and their families enormous. (Fedorak et al. 2012)
- According to a Canadian study, total food expenditures in families with a child with celiac disase are higher than the average household. In 2013, the average food expenditure was $1,105/month for Canadian households affected by celiac disease vs. $842/month for the comparable average Canadian household. (Alzaben et al. 2016)
- In 2012, the sale of gluten-free products reached up to $460 million in Canada, representing a 25% increase since 2008. (Alzaben et al. 2016)
- Access to gluten-free foods prevents families with celiac disease from traveling, dining out and taking part in social activities, thereby decreasing their quality of life while increasing the indirect costs associated with the disease.
- Despite the wider availability of serological tests, delays in the diagnosis of celiac disease remain long. The mean age at diagnosis is 45 years, with an average diagnostic delay of 12 years. (Pulido et al. 2013)
- The under-recognition of celiac disease in pediatric patients creates an economic burden on the health care system as families may consult several physicians before receiving a diagnosis for their child.
- Delayed diagnosis of celiac disease increases the individual’s risk for the development of serious chronic medical issues which, in turn, will increase their use of the health care system and reduce their ability to contribute to society.
Alzaben A et al. The cost of the gluten-free diet: Household food expenditures in families with a child or adolescent with celiac disease. Paediatr Child Health. 2016;21(5):125.
Fedorak RN et al. Canadian Digestive Health Foundation Public Impact Series 4: Celiac disease in Canada. Incidence, prevalence, and direct and indirect economic impact. Can J Gastroenterol. 2012 Jun;26(6):350-2.
Health Canada. 2018. Celiac disease – the gluten connection. https://www.canada.ca/content/dam/hc-sc/documents/services/food-nutrition/reports-publications/food-safety/celiac-disease-gluten-connection/26-18-2047-Food%20Allergen-Celiac-EN-FINAL.pdf
Jamnik J et al. Prevalence of positive coeliac disease serology and HLA risk genotypes in a multiethnic population of adults in Canada: a cross-sectional study. BMJ Open. 2017;7(10):e017678.
Kaur N et al. Interplay between type 1 diabetes mellitus and celiac disease: Implications in treatment. Dig Dis. 2018 Jul 25:1-10.
Frequently Asked Questions
I have celiac disease. Is it safe to kiss someone who eats gluten?
Yes, you may kiss that special someone as long as your sweetie’s lips are washed and teeth are brushed before you pucker up.
Can celiac disease lead to more serious illnesses?
30% of celiac disease patients may develop a malignancy, therefore adhering to a gluten-free diet is critical for preventive purposes.
Can children get celiac disease?
In children, stunted growth and an inability to gain weight are important clues to diagnosis. More unusual features of celiac disease appear to be related to an altered immune system.
These include a skin condition called dermatitis herpetiformis, insulin-dependent diabetes, thyroid disease and underactivity of the adrenal glands.
I am anemic and have heard that I may have celiac disease. Could this be true?
Today, many patients have minor symptoms or none at all and the disease is only discovered after routine testing reveals anemia (low red blood cell count) or osteoporosis. In hindsight, many patients will realize that they have had minor symptoms that they ignored.
Is celiac disease genetic?
The risk for developing celiac disease is increased 20 times for those who have a first degree relative with the disease.
What causes celiac disease?
It is not known why certain people have this allergy to gluten but studies suggest that there are both genetic and environmental components. Traditionally, this disease was found to be more common in patients with northern European backgrounds, such as Ireland and Scotland. However, more recent reports suggest that celiac disease occurs in other racial and ethnic groups.
If you have type 1 diabetes, are you more at risk of celiac disease?
Yes there it is recognized that there is an increased risk of celiac disease associated with those living with Type I diabetes. There is likely a genetic basis and hence it is improbable that there is anything you can do to decrease the risk. A serology blood test (tissue transglutaminase antibody) is very useful to screen for celiac disease and if the test is positive a endoscopic duodenal biopsies should be arranged to confirm the diagnosis and assess any damaged to the villi that may have already occurred. Once diagnosed with celiac disease, following a strict gluten free diet for life is recommended to prevent the risk of malabsorption and the development of hypoglycemia (low blood sugar) complicating the management of your son’s diabetes.