May is celiac disease awareness month and, like type 1 diabetes (T1D), celiac disease is a chronic autoimmune condition. Some autoimmune diseases including celiac disease and thyroid diseases are more common among people living with T1D due to shared risk genes. According to the BETTER registry, over 6% of Canadians living with T1D also have celiac disease compared to about 1% in the general population.
What is celiac disease?
Celiac disease is an autoimmune disease that is triggered by gluten, a protein found in many grains. When someone with celiac disease eats food containing gluten, even in tiny amounts (e.g., a crumb of bread), their immune system launches an intestinal attack which can cause serious damage in the short- and long-term.
How to know if you have celiac disease
Celiac disease is often discovered when someone is dealing with persistent gastrointestinal issues (e.g., diarrhea, constipation) and weight loss but can also have less obvious effects like fatigue, migraines, joint pain, iron-deficiency anemia, skin rash, and more. However, some people may have mild or even no symptoms. For people living with T1D, significant unexplained glycemic variability might prompt screening for celiac disease. There is a genetic component to celiac disease, so knowing a family member has the disease may encourage earlier testing.
Testing for celiac disease in Canada is done in two stages; first, a blood test is done to measure the levels of a celiac disease-related antibody. If the blood test suggests a potential for celiac disease, a procedure called an endoscopy is done to collect a small piece of the intestines to confirm damage. It is important that during testing, the patient continues to eat gluten so that damage will be confirmed if the person in fact has celiac disease. At the time of diagnosis, supplements may be needed to fill in existing nutrient gaps (e.g., iron or vitamin D deficiency) caused by this damage. Luckily, strict adherence to a gluten free diet allows the intestines to repair themselves and improve absorption.
How is celiac disease managed?
The only current treatment for celiac disease is a lifelong gluten free diet, though this can be more challenging than it seems. Eating gluten free means no wheat, barley, rye, or oats (unless the oats are certified gluten free). But, a celiac safe gluten free diet means little to no cross contamination with these products, too. This means gluten free bread made in the same toaster as gluten-containing bread is unsafe, as are foods fried in oil used for gluten-containing food. For someone with celiac disease, more than 20 parts per million of gluten, a small crumb, is considered unsafe and can trigger a reaction. However, most kitchenware (pans, plates, cutlery) will be safe after a thorough wash with soap.
Does no reaction mean that you’re in the clear? Not necessarily, some people with celiac disease don’t sense their reaction to gluten, but it can still cause intestinal damage and lead to long-term complications. Even those who previously did react may not after years of the gluten free diet, so continued vigilance is important.
Eating gluten free with T1D
Intestinal damage from celiac disease impairs the absorption of nutrients, which can complicate T1D management. Some, but not all, people living with T1D and celiac disease experience improved glycemic management after starting the gluten free diet.
Processed gluten free foods like breads and pastries often contain more sugar and less fiber than their typical gluten-containing counterparts so bolusing for these foods can be a challenge because of their high glycemic index (glucose can spike more rapidly). Using prepackaged gluten free foods can provide comfort in knowing both the carb counts and ingredients; but these are often highly processed foods containing higher sugar, salt, and fat, and would ideally be consumed on an occasional basis. These products also tend to be more expensive, but the difference in cost, compared to the gluten containing version, can be claimed on your taxes under medical expenses. If possible, leaning on naturally gluten free carbohydrate sources like buckwheat, potatoes, rice, and quinoa can help simplify the transition to gluten free eating with T1D, improve diet quality, and save money.
When you have been “glutened” (accidentally consumed gluten post-diagnosis), depending on your symptom severity, you may want to consider adjusting food and insulin to a typical sick day. Though, some classic easily digestible foods like white bread and crackers (unless gluten free) will need to be replaced by white rice or other gluten free, low-fiber, solid food.
Using your T1D skills to help with a new diagnosis
People living with T1D have many skills that are useful when dealing with celiac disease.
- Reading food labels. Aside from the number of carbs, ingredients lists will need to be checked for wheat, barley, rye, oats, and triticale (an uncommon wheat/rye hybrid). Luckily, Canadian law requires that gluten ingredients be written on the label, but this can be bypassed if the product has a gluten free certification on the front. Certification is needed for high risk products like cereals and grains (e.g., oats).
- Finding community. Whether online or in person (e.g., Canadian Celiac Association local chapters) peer support can be invaluable and help lead you to helpful resources.
- Using available tools. Lean on your community and existing infrastructure. When eating out, apps like Find Me Gluten Free can give great insights. When travelling, Gluten Free Scanner can help check international food labels for gluten.
- Advocating for yourself. Especially when eating outside of your home, be sure to ask the questions needed for your safety and comfort (e.g., awareness of cross contamination, using separate water for gluten free pasta, making sure utensils are not touching both gluten containing and gluten free food).
- Avoiding the common myths. Like with T1D, many myths persist about celiac disease including “cures”, fearmongering, and hacks for eating gluten. It is important to look to evidence-based sources for your information.
Unfortunately, having celiac disease can increase the mental load of T1D. On top of carb counting and blood sugar checks, food labels must be checked for gluten and restaurant staff will have to be asked about ingredients and safety. Indeed among BETTER registry participants, having celiac disease is associated with greater use of depression or anxiety medication. Big life changes will always be a challenge, but after some time and practice, you can live a full life that is free of gluten.
To find out more
For more advice on eating gluten free while managing type 1 diabetes, login to the Support Platform and check out the “All About Celiac Disease and Type 1 Diabetes” course. Your endocrinology clinic may also have resources relevant to your local area.
References/resources:
Canadian Celiac Association: https://www.celiac.ca/
Celiac Quebec: https://www.coeliaque.quebec/fr/
Health Canada, Government of Canada. “Wheat & Triticale – Priority food allergens”. Food and nutrition: Report and Publications. Wheat & Triticale – Priority food allergens – Canada.ca
Written by: Cassandra Locatelli, PhD
Reviewed by:
- Amélie Roy-Fleming, RD, CDE, M.Sc.
- Rémi Rabasa-Lhoret, MD, Ph.D.
- Anne-Sophie Brazeau, P.Dt., Ph.D.
- Johnny Chmiel, Anna Theroux, Pamela Dawe, patients partners
