Walk into any grocery store, pharmacy, or even gas station and you are sure to see gluten-free messaging on the products within. The boom in gluten-free eating has emerged from both trendy food marketing and medical necessity. We have learned a lot about the effects of gluten in the past 10-20 years especially. One gluten-related condition that is particularly well researched is celiac disease; a disorder that was once rarely heard of is now a household name.
I’m Marlee Coldwell with Ignite Nutrition, and in today’s post, we will review everything related to celiac disease – what it is, how we diagnose it, and how to manage it. Let’s get started!
What is Celiac Disease?
Celiac disease is an autoimmune condition. This essentially means that the immune system mistakenly attacks the body from within. In the case of celiac disease, the immune system perceives a protein found in wheat, rye, and barley called gluten to be a foreign substance. To fend off this “invader” the immune system then creates antibodies and they go to work. As a result, the lining of the small intestine becomes significantly damaged.
In the healthy small bowel, we have millions of tiny finger-like structures called villi that increase the overall surface area of the intestine and allow us to obtain the best absorption of our nutrients. In celiac disease however, individuals lose a great deal of the villi – making it look like those “fingers” were cut off at the knuckle. This can have all kinds of repercussions if celiac disease is poorly managed including inflammation, nutrient deficiencies, and long-term digestive distress.
For this reason, it is essential to follow a life-long gluten free diet if you have been diagnosed with celiac disease. Any exposure to gluten can lead to further complications, meaning it is crucial to avoid everything from a plate of pasta to even breadcrumbs!
Who is likely to get celiac disease?
When celiac disease originally came on the scene, it was mainly thought to occur in children. However, the research now shows that celiac disease can occur at any age. Different studies have attempted to determine the percentage of the population with celiac disease – with varying estimates. The general consensus is that about 1% of the population have celiac disease.1 Additionally, it appears to be more prevalent in women than in men.
There are genetic factors involved in the development of celiac disease. It is common for first degree relatives of those with celiac disease to also have the condition. This is why it is considered a best practice to screen anyone directly related to celiac disease patients – ie. parents, siblings, or children. While you may carry the gene that predisposes you to celiac disease, it does not mean that you will develop celiac disease – however, it increases your risk of development throughout your lifetime.
Because celiac disease is an autoimmune disease, individuals with other autoimmune conditions such as diabetes, multiple sclerosis or thyroid disease are also at higher risk of developing celiac disease.4
What are the symptoms of celiac disease?
Celiac disease can present itself in different ways. Many patients do tend to have intestinal symptoms while others experience more extra intestinal symptoms. Some individuals have a combination of both – but it is also important to know that some people have no symptoms at all, and the finding is incidental. Some of the most common signs and symptoms of celiac disease include:
- Abdominal pain
- Nausea and/or vomiting
- Unintentional weight loss
- Nutrient deficiencies or anemia
- Bone or joint pain
- Skin rashes
- Poor cognition
According to the Celiac Disease Foundation, only about one third of adults with celiac disease experience digestive symptoms2, but this does not mean it should be ignored if you feel quite normal! As mentioned earlier, damage to the villi in the small intestine can lead to nutrient deficiencies. Nutrient deficiencies don’t always present with symptoms we see or feel. Some of the most commonly deficient nutrients in celiac disease are iron, vitamin B12, folate, calcium, vitamin D, magnesium, and zinc. Missing out on these important nutrients can lead to long-term health complications – everything from weak bones or osteoporosis to extreme fatigue from iron deficiency anemia.
As for the symptoms we can see and feel, they are non-specific, meaning they can be associated with a wide variety of different disorders. For example, diarrhea can stem from so many different things including IBS, food borne illness, a reaction to medication, or simply a poor diet. This does not mean you have celiac disease – however it is very important to rule it out if you do have these symptoms with the proper testing.
How is celiac disease diagnosed?
At this point in time, it is not mandatory to screen all populations for celiac disease. Instead, doctors screen those that present with symptoms of celiac disease, as well as at-risk populations. Groups that should get screened include direct relatives to someone who has been diagnosed with celiac disease and individuals who have autoimmune disorders commonly associated with celiac disease.
The diagnostic protocol for celiac disease involves two steps:
- Screening – First, a blood sample is drawn and tested for a specific biomarker called tissue transglutaminase IgA antibodies – say that 10 times fast! This antibody will appear higher than normal in people with celiac disease. However, if you do not eat gluten or have cut it out prior to receiving the blood test, IgA antibodies may appear normal in your bloodwork. While this may sound like a good thing, it masks the truth! It is crucial that you do not remove gluten from your diet prior to getting the celiac screen blood test. Otherwise, false negative celiac screen results will lead people to add gluten back into their diets, or unnecessarily restrict gluten as they never get clear negative confirmation.
- Diagnosis – To confirm the diagnosis of celiac disease, an intestinal biopsy by a gastroenterologist must be performed. This is considered the gold standard diagnostic test. With an intestinal biopsy, a sample of the small intestinal wall gets removed and examined under a microscope to detect tissue damage. If inflammation and damage is present, the doctor will be able to identify whether the damage is from celiac disease. This is done via endoscopy, an outpatient procedure that can be done in less than an hour!
How is celiac disease treated and/or managed?
Celiac disease is not a condition that can be cured or “grown out of”, as it is a chronic autoimmune condition. Instead, those with celiac disease learn to manage the disease by following a strict lifelong gluten-free diet. Any amount of gluten can leave an impact – even a crumb in a toaster! Therefore, it is important to advocate for yourself and learn about cross contamination and hidden sources of gluten.
By eliminating gluten from the diet, the villi in the small intestine can actually heal, meaning symptoms do improve. Healing the small intestinal lining also helps us to better absorb nutrients, which makes us healthier, stronger, and less likely to develop problems like osteoporosis and anemia. Sounds like a win to me! However, there is no ‘challenge phase’ or reintroduction of gluten at any point, even after the bowel heals. An individual with celiac disease will never become tolerant to gluten!
For many, following a gluten-free diet can feel overwhelming if they’ve never worried about avoiding gluten before. Working with a dietitian to learn about gluten-free eating is highly recommended. A dietitian can help you to understand foods that contain gluten, appropriate gluten substitutes, and tips for eating out – as well as many other aspects of living gluten-free!
What if I still have symptoms after I eliminate gluten?
As humans, we LOVE to see immediate results, but that’s not always how things work when it comes to health. With celiac disease, it can take between 6-24 months for the IgA antibodies (our celiac disease blood indicator) to decrease.5 Many people do start to feel better fairly soon after eliminating gluten, but if it’s slower for you, that is still normal! Sometimes it just takes longer for the gut to heal before we feel a difference.
That being said, there is the potential for celiac disease patients to also have other digestive health issues. Sometimes, those with celiac disease, who are compliant with a gluten-free diet still have symptoms. Often times, we find that IBS (irritable bowel syndrome) can overlap with celiac disease. This may mean there are additional food triggers besides gluten that are also worsening symptoms. It is best to work with a registered dietitian to identify what those triggers may be. A dietitian can also help you to plan and choose foods that won’t cause symptoms, without being too restrictive!
What about medication?
In general, most people with celiac disease can treat the disease simply by following a gluten-free diet and will not require any medications. Keep in mind, if you have been living with celiac disease for quite some time, you may require vitamin and mineral supplements to prevent nutrient deficiencies – at least until your gut heals.
Additionally, those with celiac disease should also be aware of any gluten present in other medications they may be taking. If you take prescription medications or over-the-counter drugs for other reasons, you may want to check with your doctor or pharmacist to see if they contain gluten. Most drugs are safe, but it certainly doesn’t hurt to check!
If you have symptoms of celiac disease or are directly related to someone with celiac disease, it is a good idea to get screened. If this sounds like you, talk to your doctor about getting the celiac screen blood test. But remember, NEVER start a gluten-free diet as your ‘first line defence’ until after you’ve had a blood test done – you may receive a false negative if you’re already cutting out gluten. This will make proper diagnosis very tricky!
If you have celiac disease and need help understanding what it all means – and what the heck to eat – Work with one of our Registered Dietitians.
We can help to guide you through managing your intestinal and extra intestinal symptoms through a lifelong gluten-free diet. At the end of the day, we want to help you achieve the best quality of life without compromising flavour and enjoyment from your food!
- Ludvigsson J.F., et al. (2014). Diagnosis and management of adult celiac disease: guidelines from the British Society of Gastroenterology. Gut, 63: 1210-1228. doi:10.1136/gutjnl-2013-306578
- “Symptoms of Celiac Disease.” Celiac Disease Foundation. https://celiac.org/about-celiac-disease/symptoms-of-celiac-disease/
- “Screening & Diagnosis.” Celiac Disease Foundation.
- “Autoimmune Disorders.” Celiac Disease Foundation. https://celiac.org/about-celiac-disease/related-conditions/autoimmune-disorders/
- Lourdes Moreno, M., Rodriguez-Herrera, A., Sousa, C. & Comino, I. (2017). Biomarkers to monitor gluten-free diet compliance in celiac patients. Nutrients, 9(47). doi:10.3390/nu9010046