We recently chatted with Julie Clement, president of the Canadian Celiac Association British Columbia, on behalf of Celiac Canada. Read on to learn more. —Catherine Dunwoody
With May being Celiac Awareness Month every year, I think our readers would like to know: what exactly is Celiac Disease?
Celiac disease is an auto-immune condition, which means the body is attacking itself. In celiac disease the patient’s small intestine is damaged by gluten, which is a protein present in wheat, rye and barley. A celiac patient’s body can’t differentiate between its own healthy tissue and foreign cells, the gluten in this case, and the surface of the intestine that absorbs nutrients is damaged.
Celiac disease is a genetic condition, though for many people when they are diagnosed it comes as a total shock as they have no obvious family history. But when you think that some of the common symptoms of CD are things like diarrhea, constipation, anaemia, fatigue, an itchy rash and neurological problems, it’s easy to see how people are misdiagnosed or may even just brush it off as being “normal for them”.
How do you know, or suspect you have it?
I mentioned some of the more common symptoms, but you may present with osteoporosis, mouth ulcers, infertility, abnormal liver enzymes and so much more. Children may experience the traditional “failure to thrive”, though in recent years we’ve seen a move away from children being the majority of patients diagnosed with CD. Auto-immune conditions often come in twos and threes, so if you have a condition like diabetes or thyroid disease, then a test for CD should be done. It also runs in families, so if a first or second degree relative has celiac disease, then you should be screened too. It’s important to know that some celiacs are asymptomatic but are still experiencing the damage to their small intestine – if left untreated that can cause cancers, osteoporosis and other conditions later in life. Celiac Canada has a simple quiz which you can do which may suggest testing is appropriate for you or your child.
How does one get tested for it? So we know for sure.
In the first instance all you need is a simple blood test which can be ordered by your family doctor or walk-in clinic. It’s important NOT to try going on a gluten free diet before being tested, as you need to be ingesting gluten on a regular basis to get an accurate blood test result. Ask your doctor for a “celiac panel” which will be either the IgA tissue transglutaminase antibody (IgA-TTG) or endomysium antibody (IgA-EMA) for initial testing and should include screening for selective IgA deficiency to make sure the results are accurate. Celiac Canada has some great resources available for medical professionals if your doctor is resistant to run tests for you, as well as information on the follow-up tests that are recommended once you receive a diagnosis and are following the gluten free diet.
If your blood tests show a likely positive for celiac disease then the next steps vary, depending on if you are an adult or a child. In adults then the gold standard for diagnosis is to have an intestinal biopsy, or endoscopy, which will then show if there is damage to the villi, the finger-like projections in the small intestine which absorb nutrients. In celiac patients these villi are flattened, meaning we do not absorb what we need to live a healthy life.
For children, The European Society for Paediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN) has suggested that an endoscopy may not always be necessary to make a confirmed diagnosis, and they review the results of the IgA-TTG tests taken from multiple blood draws. Some gastroenterologists in Canada are starting to follow this practice too, which definitely makes things easier for parents who don’t want to submit their young children to an endoscopy.
Whatever route is taken to diagnosis the most important thing is – do not stop eating gluten until you have received an official diagnosis! It’s much harder to go back on to it for the so-called “gluten challenge” once you have been gluten free, as anecdotally many patients say their symptoms are much worse when they start eating it again.
What exactly is gluten and what foods and drinks contain it?
Gluten is a protein found in wheat, rye and barley, and other grains related to them – triticale is one that we are starting to see more often in Canada, a cross between wheat and rye. Gluten is the “glue” that holds food together, and that lack of gluten is why historically so many gluten free breads and cookies just crumble when you try to eat them.
Some people might think that it would be easy to transition to a gluten free diet – just switch to gluten free bread and cakes and you’ll be safe! Sadly, it’s not that easy, as though gluten can’t be “hidden” in any food product here in Canada – thanks in large part to organisations like Celiac Canada who campaigned long and hard for us to have really robust allergen labelling laws, it does sneak into some products that might surprise you. (Gluten is not technically an allergen but priority allergens and gluten sources have to be clearly labelled on all foods sold here)
Most cereals contain gluten, breaded fish and chicken are now off the menu, sauces and canned soups often have wheat as a thickener, licorice is made with wheat and of course beer is brewed from barley.
One of the first skills you will learn if you’re diagnosed with celiac disease is how to be a great label reader, and many people use the acronym BROW(t) as an easy mnemonic – Barley, Rye, (regular) Oats, Wheat, Triticale – these are the ingredients we need to look for on a label. Oats are naturally GF but regularly come into contact with gluten-containing grains during processing, so we always need to look for oats that are labelled “gluten free”.
Labelling laws and recommendations for people with celiac disease vary around the world, but Celiac Canada says that flours, cereals, pasta and baked goods must always be bought with a gluten free claim to be celiac-safe.
For everything else, we can rely on reading the ingredients listing and any “Contains Statement” or “May Contain Warning” for gluten-containing grains. If we see any of those BROW(t) ingredients, the product is not safe for us to eat.
Fun fact – if a product is labelled gluten free in Canada it must always be celiac-safe – if it also has a “may contain wheat” warning that means there may be a risk to someone who has an allergy to wheat, which is different to celiac disease.
If a person has CD, is it ok to cheat on the GF diet once in a while? And what happens if I don’t react to eating gluten, does that mean I have a mild case of CD?
I’m sure you’ve heard the saying that you can’t be a “little bit pregnant” – well, it’s the same with celiac disease. There are no levels of seriousness of the condition, though people do experience differences in their symptoms – for some people a “glutening”, where they have accidentally eaten something, they shouldn’t, might mean several days incapacitated with diarrhea and bloating, others may feel under the weather but are still able to function. However, both of those people would still be causing damage to their small intestines and so no, it’s never OK to cheat on the diet. For some people a diagnosis of CD feels devastating, but honestly with good education (Celiac Canada and their local Chapters and support groups should be everybody’s first port of call and then not being afraid to advocate for yourself and ask questions around food preparation, it’s very possible to live a normal life, including eating out and enjoying dinner with friends and family.
I think there’s a misconception that what we eat causes CD, and some people think we all ate too much gluten in our pasts, and it backfired. Can you speak to that?
Some people believe that because we are seeing an increase in the prevalence of celiac disease and other gluten intolerances, the cause must be something we eat, or genetic modification of wheat. Some people even say they can eat wheat in Europe, just not in North America. These are potentially dangerous myths that need to be debunked. The reality is that what we are seeing is an increase in diagnosis, in part because we now have a better understanding of the many symptoms that can be caused by celiac disease. Celiac disease is not a new condition, in fact there are references to it in the first and second centuries AD, though it took until the 1880s before scientists realised it could be treated by diet, and until WWII before the actual cause was discovered.
We know there is a genetic component to CD, but it’s believed that up to 40% of the general population have one or both of the genes primarily linked to celiac disease. Only around 1% of people will develop CD, and it seems that there has to be some kind of trigger which activates those genes and the celiac disease. Research is ongoing but doctors believe that something stressful to the body, like pregnancy, a serious viral infection or surgery may activate the condition.
Of course, the other requirement which must be in place to develop celiac disease is that you must be consuming gluten – so in that respect yes, what we eat does “cause” celiac disease.
What cities or provinces have support group chapters across Canada?
Celiac Canada is a vibrant charity, with a huge Facebook community that is managed by experts on the condition and the laws around food labelling and so on in Canada. They have a wealth of information on their website and should be everyone’s first port of call when CD is suspected or confirmed. There is so much misinformation online, partly because it gets out of date quickly, but also because a lot of it just doesn’t apply in Canada. I always recommend going straight to the experts. They also have over a dozen Chapters and support groups across the country, and they are the real boots on the ground, working on a provincial or territorial level to advocate for the celiac community. We work very closely with Home Economics teachers and health authorities to make sure everyone has access to the most up to date information and lived experience. Many of the Chapters also have their own Facebook groups or websites and create lists of safe restaurants and great grocery stores, as well as organising in-person meet up events and support groups.
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