Adjusting to life with type 1 diabetes — an autoimmune disorder in which the immune system attacks and destroys the insulin-producing cells in the pancreas — comes with its own lessons and trials. In some cases, people with type 1 diabetes may be diagnosed with a second autoimmune disease, such as celiac. For those with type 1 diabetes, the chances of developing celiac disease range from 2% to 16%, compared to 0.3% to 1% in the general population.
What is celiac disease?
Celiac is a genetic autoimmune condition that causes damage in the small intestine when gluten (a protein found in wheat, barley, rye and triticale [a cross between wheat and rye]) is eaten. This process leads to an inability to absorb the nutrients the body needs to thrive. If you have a parent, child or sibling with celiac disease, you are at higher risk of developing the disease. Just like with type 1 diabetes, there is no cure for celiac. Treatment requires eliminating gluten from the diet, which includes removing sources of gluten from food and drink, along with excluding nonfood sources of gluten like medication and cosmetics. A person with celiac disease should also avoid situations where cross-contamination occurs with gluten-containing products (e.g., using a shared toaster or cooking gluten-free pasta in water previously used to cook traditional pasta).
Common Symptoms of Celiac Disease
- Chronic diarrhea
- Abdominal bloating and pain
- Weight loss
- Pale, foul-smelling stool
- Disorders of the liver, gallbladder and bile ducts
- Short stature, failure to thrive or delayed puberty
- Joint pain
- Recurring skin rash
- Tooth discoloration or loss of enamel
- Unexplained infertility, recurrent miscarriage
- Osteopenia or osteoporosis
- Anxiety, depression or “brain fog”
What’s the link between type 1 diabetes and celiac?
These two disorders are linked by genetic predisposition, but are triggered by a number of environmental causes. Due to the increased prevalence of celiac in people with type 1, experts recommend screening for the disorder in this population. While there are several frequent symptoms of celiac, it is also possible that symptoms may not occur. Although a person is born with the genes for celiac disease, it is currently unknown what factors trigger development of the condition. The American College of Gastroenterology recommends screening yearly for celiac, while the American Diabetes Association recommends:
- screening at or soon after diagnosis of type 1 diabetes;
- repeat screening within two years of type 1 diagnosis; and
- repeat screening after five years of type 1 diagnosis and more frequently if there are suggestive symptoms (such as diarrhea, abdominal pain, osteoporosis) or a first-degree relative with celiac disease.
Drawing blood for specific antibodies is the first step. The diagnosis should be confirmed through an endoscopic biopsy. In this procedure, a specialist guides a long thin tube (endoscope) through the mouth, into the stomach and to the small intestine to take a tissue sample. (The sample is evaluated for the flattening of fingerlike nutrient-absorbing projections in the intestine known as villi, which are damaged in people with celiac.) Prior to biopsy, a normal diet containing gluten should continue so that the diagnosis is as accurate as possible.
Useful Resources for Celiac Disease
Managing type 1 diabetes and celiac disease
Managing type 1 diabetes and celiac sounds relatively straightforward: eat gluten-free foods, count carbohydrates and take insulin. However, for optimal management of both type 1 diabetes and celiac disease, additional details to consider include:
Effect on blood glucose levels
Some people find that blood glucose improves once switching to a gluten-free diet. Removing gluten from the diet (resulting in less inflammation in the body) allows for proper absorption of nutrients. In some cases, less hypoglycemia (low blood glucose) occurs because glucose is properly absorbed. Insulin resistance, caused by inflammation of the gut, may resolve. By removing processed food items and focusing on naturally gluten-free foods (fruits, vegetables, low-fat dairy, beans and legumes, lean protein, etc.), blood glucose spikes are less likely. On the other hand, if consumption of gluten-free processed products (such as pasta, pizza crust, bread and crackers) is increased, blood glucose may be higher because these items generally contain more carbohydrate, less fiber and less protein than similar products with gluten. In either scenario, insulin doses may need to be adjusted.
It’s no secret diabetes supplies can be expensive, even with good health insurance coverage. Adapting to a strict gluten-free diet may add to financial stress. One major cost is replacing cookware and kitchen gadgets previously used for gluten-containing food preparation. To eliminate potential gluten contamination, it may be necessary to replace pots, pans, stoneware, wooden cutting boards, wooden spoons, mixers and toasters. In fact, creating a preparation space with separate utensils in the kitchen so cross-contamination is less likely to occur is best. Additionally, specialty gluten-free products typically cost more than their gluten-containing equals. For example, a store-brand 100% whole-grain bread may cost $2.99 per 20-ounce loaf, while a gluten-free multigrain bread can cost $5.99 per 15-ounce loaf — a smaller loaf for double the price.
Availability of gluten-free items
Gluten-free items are now more widely available than in the past, with many local grocery stores boasting multiple shelves of gluten-free alternatives. However, when away from home, you should pack gluten-free snacks or treatment for low blood glucose, as the items you need may not be readily available. For children enrolled in schools that receive federal funding, the Child Nutrition Act of 1966 and the National School Lunch Act require that a nutritious gluten-free meal be provided by the school to students with medical necessity. This option is also included for those who receive free or reduced-price school meals, as a student with celiac disease has the right to gluten-free alternatives under the Americans with Disabilities Act.
Having to manage the frequent, continuous and unyielding responsibilities for one chronic autoimmune disease (and sometimes under stressful and physically uncomfortable situations) is enough to take a toll on mental health. It is only natural that with two chronic conditions, the psychological impact would be even higher. Aside from the stressors surrounding day-to-day diabetes-care tasks and ensuring access to gluten-free meals, related issues may affect emotional and physical health:
Feelings of isolation
Resources or support groups for both celiac and type 1 diabetes are few. Seek those that may provide help (see “Resources for Celiac Disease,” above).
Some with type 1 diabetes notice weight gain after beginning a gluten-free diet. This typically results from the villi healing and the body again being able to absorb nutrients and/or from consuming an abundance of processed (high-fat, high-carbohydrate) gluten-free foods instead of naturally gluten-free items such as fruits, vegetables, beans/legumes, low-fat dairy and lean proteins.
Lack of access to information to make decisions
There continues to be widespread lack of knowledge about what “gluten free” and “cross contamination” mean. Many nonchain restaurants don’t provide nutritional information (like carbohydrates) for items offered on the menu, which may make dosing insulin more difficult. The FDA has outlined specific requirements for labeling foods gluten free, but at this time, this ruling only applies to packaged products.
Whether at a restaurant or a social gathering, you may feel uncomfortable asking questions about the items offered, how they are prepared or the risk of cross-contamination. Additionally, concerns not being taken seriously can be an issue.
Misconceptions about the conditions can create bias
Does the workplace recognize that there is a medical necessity for gluten-free options? Does a place of worship allow for an alternative to the wafer used for communion? Do religious or cultural reasons require a person to consume a food item containing gluten?
Accuracy of carb counting, precise insulin dosing and blood glucose fluctuations are common contributors to anxiety among people with type 1 diabetes. For those with celiac disease, factors include lack of labeling, concerns about accidental cross contamination, or severity of reaction to ingesting gluten.
Overcoming the obstacles
Diabetes management is complex and multifaceted, and the same goes for celiac disease. Together, this can make even the smallest care task feel overwhelming. To overcome obstacles you may encounter, you may find the following points helpful.
Establish your A-team
This is an important group of people to assist you in managing type 1 diabetes and celiac. Your team should include a diabetes care provider, diabetes educator, gastroenterologist, registered dietitian, pharmacist and mental health provider. In building your support system, also include family members, caregivers and friends, who are vital in your journey to achieving optimal health. Follow up as recommended with your team and communicate questions or concerns about your diabetes management, maintaining a gluten-free diet and/or mental health.
Identify valuable resources
If you are looking for recipes, products or advice for eating gluten free at restaurants or at school, check out the Celiac Disease Foundation’s website. The ease of finding local restaurants with gluten-free options may depend how many are available in your area. Larger cities may have a local celiac support group that lists restaurants specializing in gluten-free dishes. If you are in a rural location, you may find this task more difficult. Once you’ve identified a restaurant that seems like a good candidate, do your own research by contacting the restaurant’s management team to ask follow-up questions, including:
- Do you have a gluten-free menu?
- What items can be made gluten free?
- Is there a separate preparation space for gluten-free dishes?
Some gluten-free product companies will offer to send samples for review. This is an easy way to try new foods without spending money.
When in doubt, go without
If you are uncomfortable with alternatives provided or unable to verify if an item is gluten free, remember that it’s OK to say “no.” You have the right to make the best decisions for your health. You can also be an advocate and make a difference. Consider taking the time to educate others and provide reliable resources where they can learn more.
Stay motivated instead of expecting perfection
Know mistakes will happen and have a plan for what to do when they occur. This can greatly reduce stress and anxiety. If you are experiencing diabetes burnout and/or struggling with maintaining a gluten-free diet, discuss the situation with your healthcare team.
The truth about managing multiple autoimmune diseases is that, while unique hurdles exist, you can overcome them. These obstacles may present themselves at any life stage, and there is no single approach to overcome every obstacle. But with the right healthcare team, knowledge and resources, a person with type 1 diabetes and celiac disease can thrive and enjoy a happy and healthy life.