Celiac Disease and T1D: What’s the Connection?
Celiac disease and type 1 diabetes too often come hand in hand. Learn more about what celiac is, what your risk might be for this condition, and how to navigate a diagnosis.
The first time Monica Lanning heard of celiac disease was when she was 12 years old and her endocrinologist, who had been working with her to manage her type 1 diabetes (T1D) for the past decade, ordered routine lab work that showed the possibility of her developing this disorder.
It wasn’t until years later, just as she began college, that intestinal issues began to surface – signaling the arrival of celiac disease – which is diagnosed in about 2 million people in the US, with an estimated 2.5 million more remaining undiagnosed, according to the Celiac Disease Foundation. While this condition is more common in people with T1D, there is not a similar risk for those with type 2 diabetes.
Celiac disease and T1D share a common denominator – they’re both autoimmune conditions that involve the body’s immune system making antibodies (small proteins that help your immune system identify bacteria, viruses, and more) to beta cell antigens in T1D and to the intestinal lining in celiac disease, triggered by exposure to gluten in the diet. While there isn’t a cure for celiac disease, it can be treated with a life-long, gluten-free diet.
“I started to have gut symptoms my freshman year in college, but I was kind of in denial,” said Lanning, now a physician assistant studies student at Stanford University School of Medicine. She struggled at first to adapt her lifestyle to yet another health condition. She said it’s not hard these days to eat well using gluten-free substitutions for most things.
“I felt angry about having celiac at first – in addition to T1D – especially as a college student,” she said. “Eating is the center of social events, so there can be emotional effects, too. I didn’t want to be a burden on anyone – I don’t feel this way now, but I did after diagnosis. Now I tend to go to similar restaurants that take celiac precautions seriously and don’t treat me like I have a trendy diet.”
What is celiac disease?
Celiac disease is an autoimmune reaction to the protein found in wheat, barley, and rye. This can cause damage to the lining of the intestines and a host of other health problems. While anyone can have celiac disease, it’s more common in women, highly associated with T1D, and can happen at any age.
Here’s the tricky part: celiac disease can be symptomless. While some people have chronic headaches, gastrointestinal issues, poor growth during childhood, joint pain, or a skin rash, others may have no symptoms at all.
Why does this matter? Because if you have no idea that you have it and keep eating gluten, you can develop serious medical problems.
What are the symptoms of celiac disease?
Celiac disease has 200 possible symptoms. It can affect each person differently, and this can make it challenging to diagnose, since they often have overlapping genetic and environmental risk factors.
Whether you have symptoms or not – undiagnosed celiac disease puts you at risk for other health conditions. So, it's important for your overall health and well-being to understand if gluten is causing you any ill effects.
Consider using this Symptoms Assessment Tool from the Celiac Disease Foundation to see if you’re at risk. And take note, you must be eating gluten regularly for this test to work properly
Is celiac disease the same as an allergy or food intolerance?
No. Celiac disease shouldn’t be confused with an allergy to wheat or gluten intolerance (non-celiac gluten/wheat sensitivity). While a wheat allergy can cause hives, vomiting, or anaphylaxis – a potentially life-threatening condition – gluten or wheat intolerance does not.
“Individuals with these conditions have legitimate symptoms, but they don’t test positive for celiac disease,” explained Shaina Greenspan, MS, RD, who practices nutritional medicine and lives with T1D herself. “Allergy testing can be helpful, as well as removing the irritant [gluten] from the diet to help resolve symptoms.”
How do I know if I have celiac disease?
If you have any symptoms of celiac disease, the best thing to do is to see a healthcare provider. They'll ask you questions, order necessary testing, and make a treatment plan that works best for you.
This may include antibody or genetic testing, or a referral to a gastroenterologist for an endoscopy (a procedure to see inside your small intestine and take biopsies for testing, if needed).
Greenspan said, “It’s important to keep gluten in your diet before testing. To get accurate results from blood work, endoscopy, or biopsies – gluten must be in your system.” Otherwise, you can get “false negative” results, which means that you could have celiac disease, but the tests aren’t showing it.
Who is at high-risk for celiac disease?
While anyone can develop celiac disease, it’s common within families because it’s hereditary. For example, if you have a first-degree family member living with celiac, you have a 1 in 10 chance of developing it. So, be sure to let your provider know if you have a sibling, parent, or a child that has celiac disease.
Is celiac disease more common in people with T1D?
Yes, there’s a known relationship between type 1 diabetes and celiac disease. While celiac disease affects about 1% of the general population, research suggests that it affects about 6% of the T1D population (with variances up to 10% and greater).
Did you know?
Celiac testing is recommended upon diagnosis with T1D and at prescribed intervals thereafter. Have you been tested? If so, do you know what your results were?
Is there a treatment for celiac disease?
Yes, celiac disease is one of the few conditions that’s treated with a particular food avoidance. Once diagnosed, individuals follow a gluten-free diet for life, because even small amounts of gluten (such as crumbs in a toaster) can damage the lining in your intestines and lead to symptoms.
“With this autoimmune condition, food is medicine. If left untreated, symptoms are likely to continue. A person can have poor absorption of nutrients – which can lead to vitamin and mineral deficiencies – and health problems such as anemia and osteoporosis. And ongoing damage to the gut can happen even with mild symptoms,” explained Greenspan.
What is gluten?
Gluten helps foods to stick together and hold their shape. It’s found in obvious places such as breads, baked goods, cereals, and pastas. It’s also found in some harder to identify items such as lip balms, hair products, and medications.
Gluten-free labeling is regulated by the FDA. If the label says “gluten-free,” this means that it doesn’t have any gluten-containing ingredients, or it has less than 20 parts per million (ppm) of gluten.
Is gluten bad for you?
Not necessarily. While a gluten-free diet may be needed to manage a health condition, most people can tolerate gluten just fine. Plus, having a gluten-free diet doesn’t mean that a person is eating healthfully. This is particularly true with highly processed choices that are lacking in the nutrition department (hello, gluten-free Oreos).
Greenspan added: “If a person doesn’t have celiac disease, but chooses a gluten-free diet, they can have a poorly balanced diet with a lack of complex carbohydrates. These carbs provide the body with fiber, iron, calcium, B vitamins, and folate – all of which are important nutrients.”
Although people living with T1D are at increased risk of developing celiac disease, and research on the relationship between the two conditions is ongoing, many people remain untested and undiagnosed. It’s never too early to talk to your provider to determine if testing is needed.