WHAT IS CELIAC DISEASE?
Celiac disease is an autoimmune disease, which means the body’s immune system mistakenly attacks itself when it senses a particular trigger. Experts believe that the cause of celiac disease involves interaction between a person’s genetic background and the environment.
With celiac disease, the trigger is a protein called gluten, which is commonly found in wheat, rye, barley, triticale, malt, brewer’s yeast, wheat starch and their by-products (see Table 1 for more information). It is estimated to affect 1 in 100 people worldwide and up to 3 million Americans. Children and adults can develop celiac disease at any age. In children, this can be as young as around six months, which is about the time solid foods containing gluten are introduced.
The lining of the small intestine is covered with small, finger-like projections called villi. If you or your child has celiac disease, eating foods with gluten inflames and damages the villi and the small intestine, via an immune system response to the gluten protein.
One of the consequences of the damage to the small intestine is that food and nutrients are absorbed poorly. This can result in bowel symptoms and various nutrition deficiencies, including iron deficiency. Inflammation also results in problems that can affect the bones, joints, skin and other organs.
Importantly, appropriate treatment with a strict avoidance of gluten in the diet leads to small bowel healing, resolution of symptoms, and a reduction in the risk of complications. Untreated celiac disease and poor management can lead to chronic poor health.
HOW IS CELIAC DISEASE TREATED?
Right now, there is no cure for celiac disease, but fortunately it can be managed by following a strict, lifelong, gluten-free diet. Sticking to a gluten free diet is very important considering even trace amounts of gluten can damage the small intestine, with or without obvious signs or symptoms.
Someone with celiac disease needs to be a gluten super sleuth, and check food labels and ingredient lists carefully to make sure there are no gluten containing ingredients. See Table 1 for an example list of gluten- containing grains.
GLUTEN-CONTAINING GRAINS AND THEIR DERIVATIVES
Varieties and derivatives of wheat such as:
- Wheat berries, Durum wheat, Emmer, Semolina, Spelt, Farina, Farro, Graham, KAMUT® Khorasan wheat, Einkorn wheat
- Wheat Starch that has not been processed to remove the presence of gluten to below 20 ppm and adhere to the FDA Labelling Law Rye
Malt in various forms including:
- malted barley flour, malted milk or milkshakes, malt extract, malt syrup, malt flavouring, malt vinegar
- Brewer’s Yeast
- Wheat Starch that has not been processed to remove the presence of gluten to below 20ppm and adhere to the FDA Labeling Law*
*According to the FDA, if a food contains wheat starch, it may only be labeled gluten-free if it has been processed to remove gluten, and tests show it is below 20 parts per million gluten. If a product labeled gluten-free contains wheat starch in the ingredient list, it must be followed by an asterisk explaining that the wheat has been processed sufficiently to adhere to the FDA requirements for gluten-free labeling.
List adapted from: Celiac Disease Foundation. Gluten-Containing Grains and Their Derivatives.
For comprehensive lists of foods and ingredients to avoid when managing celiac disease, see the Celiac Disease Foundation website www.celiac.org/live-gluten-free/glutenfreediet/sources-of-gluten.
Perhaps more importantly, for a comprehensive lists of foods that you can eat when living with celiac disease, see the Celiac Disease Foundation website for ‘What Can I Eat?’
CELIAC DISEASE LONG-TERM MANAGEMENT
Adjusting to the gluten free diet may seem difficult at first, but as knowledge and confidence grows, managing the diet becomes easier. When first diagnosed, a visit to a registered nutritionist or dietitian who specializes in gluten free diets is advised. They will help to explain and plan your individual gluten-free diet, give you information about how to read food labels, and will help you to plan to get all the right nutrients your body needs. This may involve considering the need for any dietary supplements like iron or calcium. A dietitian may also give you some nice recipe ideas.
Once gluten is eliminated, the small intestine can heal and you or your child should start to feel better, usually within a few days or weeks.
READING LABELS ON ALL FOODS FOR GLUTEN CONTAINING FOODS
There are many foods that could contain gluten, often in hidden or unexpected ways, so remember to always read packaged food labels to check for hidden gluten sources. Some tips include:
- In America, a gluten-free claim can be made if the food contains no detectable gluten
- Most packaged foods must declare ingredients derived from a gluten-containing grain (i.e. wheat or rye) on the food label’s ingredient list
- If “gluten-free” is not specified on a food label, always read the label very carefully
Be careful, as many products may appear to be gluten-free, but are not. For instance, products labeled wheat-free are not necessarily gluten-free. They may still contain spelt (a form of wheat), rye or barley-based ingredients that are not gluten-free. To confirm if something is gluten-free, read the product ingredient list.
To learn more about label reading as it relates to identifying gluten in food, see the Celiac Disease Foundation advice on Label Reading and The FDA www.celiac.org/live-gluten-free/glutenfreediet/label-reading.
OTHER CONSIDERATIONS WITH CELIAC DISEASE
Preschool or school:
Having a child’s school involved may help in the day-to-day management of maintaining a gluten free diet. Some helpful tips:
- Talk with your child’s preschool or school and let them know that your child needs to follow a strict gluten-free diet
- Discuss with your child’s class room teacher whether you and your child may have some ‘circle-time’ with the class, to explain the basics about celiac disease. This is a nice way to build education and tolerance, all at once
- Exercise care around bake sales, classroom parties and snacks outside of the cafeteria.
Keeping gluten-free food separate at home:
It’s important to keep gluten-free food separate from gluten-containing food, to avoid accidental exposure to gluten. Some helpful tips include:
- Prepare and store all gluten-free foods away from foods with gluten. Use separate chopping boards and utensils when preparing or cooking gluten-free foods
- Clean utensils and appliances that might have gluten-containing foods, even crumbs, on them
- A separate toaster for gluten-free bread is best practice.
Taking care when you eat out
Eating out is always a treat and having celiac disease is no reason to stop. However, a little extra care is needed to make sure gluten containing food is not eaten by mistake:
- Pay attention to choose gluten-free menu items
- Inform restaurant staff that you or your child can only eat food that is strictly gluten-free
- Avoid condiments and food that may have been cooked with hidden (i.e. soy sauce).