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As if dealing with one autoimmune disease diagnosis isn’t enough, people with type 1 diabetes (T1D) have a higher risk of being diagnosed with a second one — and celiac disease is a common possibility.
Over the years, research has found that anywhere from 6 to 8 to 19.7 percentof people with T1D also have celiac disease, a digestive disorder caused by an abnormal immune reaction to gluten. There is no research to indicate that one truly causes the other, but these two conditions do go hand-in-hand, at what seems to be an increasing rate.
For that reason, we’ve compiled this guide to facts about celiac disease, and tips for living well with both celiac disease and T1D.
Ariel Warren, a New York-based registered dietitian nutritionist and certified diabetes care and education specialist, who lives with T1D herself, says she isn’t surprised by the relationship between the two diseases, because all autoimmune diseases have one thing in common: inflammation.
“As a dietitian who’s also had type 1 for 25 years, I see any autoimmune disease as the presence of low grade inflammation, or chronic inflammation,” Warren tells DiabetesMine.
Indeed, gluten has been
Warren also explains: “The American Diabetes Association says the risk of celiac disease for a person with type 1 diabetes is 10 percent, but the reason these studies all say something different could be because of other variables in the study, like
Let’s start by defining the enemy here. Gluten is the protein component in many of your favorite grains. A stalk of wheat contains starch (carbohydrate), germ (fat), and gluten (protein).
Gluten is found in the following grains:
- Wheat (which includes white flour)
- Other forms of wheat, including farina, farro, graham, wheat berries, durum, emmer, semolina, spelt, and kamut
- Malt, usually found in processed foods and labeled as: malt extract, malt syrup, malted milk, malted barley, malt flavoring, and malt vinegar
- Brewer’s yeast
For a thorough list of common foods that contain gluten, visit the Celiac Disease Foundation.
Be aware that just because something says it’s “wheat-free” does not mean it’s necessarily also gluten-free. If you don’t see a certified “GF” symbol on a packaged food item, read the ingredients thoroughly to ensure it doesn’t contain gluten.
Celiac disease is an autoimmune disease, which means your immune system attacks your own body. In this case, when you consume gluten, your immune system attacks the lining of your small intestines. This is the most severe form of “gluten intolerance” because of this critical autoimmune aspect.
This attack from your immune system results in damage to the tissue in your small intestines.
Over the past 20 years, with increasing awareness of celiac disease, it’s become known that the symptoms and ways gluten can impact a person’s health are numerous.
The immediate, short-term symptoms can include:
- Stomach pain
- Brain fog
- Rashes, hives, or itchy skin
- Joint pain
- “Failure to thrive” in babies and children
Over time, that damage can significantly impair your body’s ability to absorb vital nutrients from your food, resulting in vitamin deficiencies and conditions associated with low vitamin levels.
While the damage can heal to some extent, because the lining of your gut renews approximately every three weeks, it can only do so if you adhere to a gluten-free diet. Every time a person with celiac disease consumes gluten, the immune system attacks and creates damage.
It’s important to remember that some people have very few signs of this disorder, and those do not always include common digestion issues as many might assume.
“There are not always symptoms for celiac,” explains Warren. “So it’s definitely important to do a yearly blood panel that detects the antibodies associated with celiac if you have type 1 diabetes.”
Getting tested for celiac disease starts with a simple blood test looking for the antibodies that result when your immune system attacks your own body. Celiac-specific antibody testing looks for a number of different antibodies that help to determine if you have the condition.
Remember, it’s important to continue eating gluten during the weeks leading up to your blood test. If you stop eating gluten for several weeks prior to the test, the antibodies won’t be present because you weren’t consuming that critical ingredient.
Celiac disease can also be confirmed with a quick outpatient biopsy. You’ll be sedated while a physician leads a small tool down your throat, into your stomach, and into your small intestines to collect a sample of tissue. Once collected, it will be examined for the presence of antibodies. This procedure is quick and painless for a sedated patient.
Treatment for celiac disease is simple: Avoid eating foods that contain gluten.
While these two forms of “gluten problems” have a few things in common, it’s critical to know the difference and to identify which one may apply to you.
An allergy or sensitivity to wheat, or a so-called “non-celiac gluten intolerance,” means that your body responds negatively when you consume this ingredient. Much like an allergy to lactose in dairy, the symptoms are usually non-life-threatening but very uncomfortable and disruptive, including:
- Brain fog
- Rashes, hives, or itchy skin
- Anaphylaxis: swelling in the nose or throat (potentially life-threatening)
An allergy or sensitivity to wheat does not result in antibodies like celiac disease, but the recommended diet and protocol is the same: Avoid eating wheat and most grains that contain gluten.
Some people with a wheat allergy may find they can still consume grains that contain gluten, such as rye, barley, and spirulina.
If you’ve tested negative for antibodies that indicate celiac disease, the next step would be to remove all gluten-containing grains from your diet for three weeks and then gradually introduce each grain at a time, starting with non-wheat grains. If your body responds well to rye and barley, then it would be safe to conclude that your allergy/sensitivity is towards wheat, not gluten.
As with celiac disease, the treatment plan is simple: Avoid eating foods that contain wheat or gluten, depending on the type of grain to which you appear to be allergic.
“With celiac disease, the only treatment is to avoid gluten,” confirms advocate and author Gina Meagher, who’s lived with T1D for over 45 years and celiac disease for 30, and written books about both conditions.
“Granted, that’s not always easy to do. But the approach is at least simpler than diabetes,” says Meagher. “But if you’re not managing it properly, it can really create havoc with your blood sugar.”
Meagher is referring to the ongoing damage that regular consumption of gluten will do to the lining of your gut, leading to malabsorption of essential nutrients (including carbohydrates and essential vitamins and minerals).
“And that means your blood sugar could be all over the place,” Meagher says. This of course adds to the abundance of variables a person with T1D already faces.
While mainstream media tends to advertise gluten-free foods as though they are healthier versions, a person with T1D needs to keep in mind that gluten-free does not mean less impact on your blood sugar levels.
In fact, gluten-free substitutes for things like bread, bagels, muffins, and cookies, might actually be much higher in carbohydrates than your typical white flour version. Which means a bigger impact on your blood sugar and a call for more insulin.
“For me,” shares Meagher, “I discovered early on that if I eat most types of typical gluten-free bread, I need to take an extra unit or two of insulin compared to bread with gluten.”
“If anything, a gluten-free bread or muffin is sometimes even higher in carbohydrates because it’s more refined and ultra-processed,” cautions Warren. “Always look at the labels, if there are any, and count those carbohydrates.”
Regular white flour offers that fluffy binding that makes glutinous things like donuts and bread so stretchy and wonderful. When you remove gluten, you have to compensate with a variety of other grains, potentially more fat from eggs or oil, and usually some xanthan gum for binding — otherwise, your recipe will likely come out crumbly and dry.
For example, one of the “doughiest” gluten-free breads is Against the Grain’s “baguettes.” They are flavorful, chewy, and feel about as close to the real thing as a gluten-free person could ask for. But the abundance of fat in this bread (which is why it’s so good) will impact your blood sugar in the same way several slices of pizza do; it will slow digestion and prompt a big spike in your blood sugar hours after eating.
It’s high-carb and high-fat.
“On the other hand, if you’re cooking from home, the gluten alternatives like coconut and almond flour are lower in carbs and much higher in protein and fat,” says Warren, “so they’re easier to manage your blood sugar around.”
But these gluten-alternatives aren’t something you’d want to be consuming tons of every day. Too much almond flour can be a bad thing: mostly because it’s extremely calorie-dense. Just as you wouldn’t want to consume a full cup of almonds every day, consuming that much in the form of flour isn’t ideal either. (There’s a flurry of thoughtful blog posts on the topic of consuming too much almond flour.)
The takeaway here is that just because something comes with a “gluten-free” label does not mean it’s healthier or has a lower impact on your blood sugar than regular glutinous baked goods.
Perhaps the benefit of living with celiac disease is that it could encourage you to adopt a healthier, cook-more-at-home lifestyle.
“Eating gluten-free can help you transition to a more whole-foods diet that consists of more vegetables, legumes, nuts, fruits, and healthy proteins,” says Warren.
If you’ve been eating Starbucks muffins on your way to work every day, a diagnosis of celiac disease could be the motivation you need to start making breakfast at home. If regular pasta or a Domino’s pizza have been your go-to choices for dinner when you don’t feel like cooking, having celiac disease could be the encouragement you need to ditch the excuses and cook more “real-food” meals at home.
There are thousands of resources to help you learn about “clean eating” — the trendy term for eating foods in their most natural state and learning how to cook with whole foods.
Choose one whole food and match it with another, looking for a combination that includes one of the following: carbs/fiber and protein or carbs/fiber and fat or protein and fat. For example:
- Instead of a peanut butter and jelly sandwich, try an apple with some peanut butter or nuts.
- Instead of regular pasta with meatballs, try sauteed onions, bean sprouts, shredded carrots with gluten-free meatballs.
- Instead of a bagel with cream cheese, try raw veggies with hummus and some cheese.
- Instead of cold pasta salad, try mixing sauteed onions, celery, and bell pepper with a can of black beans and herbs.
A few links, from Yours Truly, to guide you in eating a more whole-food diet:
- How to Eat a Flexitarian Diet by Ginger Vieira
- What to Eat for Breakfast if You Have Type 1 Diabetes by Ginger Vieira
- Flexible Eating to Create a Healthy Relationship with Food by Ginger Vieira
- A Moderate Carb Diet by Ginger Vieira
- Diabetes Fad Diets by Ginger Vieira
One of the most exciting developments in recent years for anyone who can’t eat gluten is the fact that lots of new ready-made GF dishes like pizza are now popping up in stores, and restaurants across the country are including GF dishes on their menus.
Some popular pizza brands that you can buy in the supermarket with crusts made from cauliflower or other GF alternates include:
Meanwhile, going out to a restaurant with celiac disease has become “easier” than ever because restaurants have, one by one, realized that the GF trend isn’t going anywhere. Many menus these days include symbols to indicate which items are GF or can be made GF upon request.
Many establishments, chains or local, have GF burger buns or sandwich bread ready and waiting. And asking your server to “check with the chef” is no big deal. (That being said, if you’re unsure and it’s unmarked, definitely ask about the ingredients before ordering!)
Several top national chains are offering gluten-free pizza these days, including:
- Papa John’s
- Pizza Hut
- Chuck E Cheese
Loads of other chains — from Chili’s to Shake Shack to Waffle House and Wahlburgers — also offer GF menu items. Check this list of GF-friendly restaurants to search for your favorites.
And, of course, in a life with celiac disease, there’s room for those gluten-free treats, too.
“Making room in your diet for gluten-free products and treats are part of balancing and preventing feeling deprived, making it a diet you can stick to long-term,” says Warren.
“There’s this all-or-nothing mentality regarding carbohydrates, and eating perfectly with diets like Paleo and Ketogenic, that are gluten-free, but that can be very draining,” says Warren.
Warren recalls a mother of a child with T1D talking about how they are always sure to include those “less-than-perfect” treats. “It’s progression, not perfection,” the mother told Warren.
With celiac disease, those treats simply need to be gluten-free in order to protect your gut health.
“Find those gluten-free products or treats that you love and keep a couple of them on hand,” encourages Warren. “Or find a few gluten-free cookie recipes that you love, and always keep those ingredients around so you can satisfy those little cravings in moderation.”
Trying to avoid anything entirely — especially dessert — too often leads you to think about that one thing constantly. Instead of enjoying a normal slice of that gluten-free chocolate cake, you end up eating half of the cake, cautions Warren.
“Take your insulin. Check your blood sugar. Eat mostly whole foods, but there has to be balance,” says Warren. “Keeping both your body and your mind healthy and balanced.”
Luckily, gluten-free foods are becoming more mainstream. Just last month, Nabisco announced the impending 2021 arrival of gluten-free Oreos. We are all very excited, but until they hit the shelves, we must make do with our other options — and there are plenty. In a world full of gluten-free goodies, these are just a few we love:
- Trader Joe’s many gluten-free pasta options
- Edamame Fettuccine
- Ronzoni gluten-free pasta, made from quinoa, corn, and brown and white rice
- Canyon Bakehouse 7-Grain Sandwich Bread
- Against the Grain Baguettes
- Glutino English Muffins
- Schar Artisan Multigrain Bread
- Toufayan Gluten-free Wraps
- Find more gluten-free bread reviews here.
- Hershey’s Gluten-Free Chocolate Cake
- Alton Brown’s Chewy Chocolate Chip Cookie
- King Arthur Flour’s Pumpkin Muffins
- Bob’s Red Mill 1-1 Gluten-free Baking Flour
- King Arthur Flour All-Purpose Gluten-Free Flour
- Cup-4-Cup Multipurpose Gluten-free Flour
Always check to see if your flour contains xanthan gum and what a recipe calls for. Most flour mixes contain xanthan gum while a few do not!
These are truly just a few of the many, many, many products out there designed to make your gluten-free life yummier.
After a celiac disease diagnosis, the guidance of “just don’t eat gluten” may leave some people feeling lost and frustrated.
Meagher also recommends seeking out local celiac disease/gluten intolerance support groups, learning from others how to best fill the void (and cravings) that a gluten-free life may leave you with.
“The individuals involved in these groups have a wealth of information on tips and tricks for navigating the gluten-free lifestyle — at school, food substitutes, eating at restaurants, great recipes, etc.”
There’s a reason that the national magazine on the gluten-free diet is called “Living Without.” It can be difficult to avoid all normal baked goods, pasta, and more while others around you are enjoying these foods.
“Don’t let your condition(s) hold you back from living your life the way you want to live it,” says Meagher. She says that with the myriad of delicious GF alternates out there, she’s not even tempted.
“It really is a cause-and-effect reaction. I have extreme abdominal distress when I eat gluten that lasts several days. Certainly not pleasant!”
“I also tend to have food in my bag and my pockets that I can pull out if nothing is ‘safe’ for me to eat when I’m out.”
Meagher adds that many of her friends are especially supportive by providing gluten-free alternatives at gatherings, or altering recipes to make foods GF when they invite her over for a meal.
While some people can “get away” with cheating a bit here and there, others simply cannot. But keep in mind that the lining of your gut is being damaged whether you feel the symptoms or not.
Personally, I hadn’t eaten gluten on purpose in nearly 15 years, but when my father died very suddenly and tragically in 2016, I ate a cinnamon bun the size of my head after his funeral. Zero symptoms, but it triggered an “every now and then” habit of treating myself to something glutinous once every few weeks for well over a year. Not a safe or healthy habit to adopt.
“The lining of your intestine is made of millions and millions of cells,” explains Harvard Health Publishing from Harvard Medical School. “These cells join together to create a tight barrier that acts like a security system and decides what gets absorbed into the bloodstream and what stays out.”
Meagher suggests most of all skip the self-pity and embrace celiac disease as yet another challenge in life that you boldly take on each day.
“Do you have to live with a few limitations? Well, yes. Do you have to plan a little more? Sure. But in the larger picture, that’s just life. We all have circumstances or situations, chronic or otherwise, that we must deal with every day. The key is to find solutions or at least workarounds so that those circumstances or situations won’t stop us.”