No, You Can't Eat Gluten in Europe if You Have Celiac Disease

And other celiac myths that need to die.

This article was updated on August 4, 2024.

In my four years of living with celiac disease, I’ve come across a lot of misinformation online. Early on in my diagnosis, I joined a few online celiac support groups and quickly realized that outside of offering restaurant recommendations for my travels, they were no place to get advice related to navigating life with celiac disease.

I constantly came across statements that made me do a double-take and seriously stressed me out. I saw posts from people who said they got “glutened” (aka they were exposed to gluten and then got sick) from their tampons and their moisturizers. I saw posts from people who mixed up celiac disease with food allergies and thought that soy, corn, rice, and other naturally gluten-free foods contained gluten.

Even with my background as a health writer, I’ll admit I was pretty confused and found it difficult to decipher true from false. I left most of these online groups and stuck to sourcing information from legitimate organizations, like Beyond Celiac and the Celiac Disease Foundation.

Then, last year, a TikTok influencer (not in the celiac space) posted a video where she stated that although she was sensitive to gluten, she was able to eat gluten-containing foods in Italy without feeling sick due to the difference in the way food is processed in Europe. Insert record scratch sound here.

While this influencer noted that she didn’t have celiac disease, only a sensitivity, I had multiple non-celiac people in my life reach out to me with the recommendation that I should try eating gluten the next time I traveled abroad because they had heard it was safe for celiacs to eat gluten over there.

I got tired of explaining the nuanced differences between celiac disease and gluten sensitivity, so I just started ignoring these suggestions (which I never asked for in the first place).

Additionally, I also noticed an uptick of users in the few remaining celiac groups I was a part of proclaiming that they felt great eating gluten in Europe. At first, I did my best to explain why they should not eat gluten in Europe if they had celiac disease—but it wasn’t feasible for me to comment on every single post I saw.

That said, helping educate others about celiac disease and combating misinformation about the disorder are two of the main reasons I started this newsletter. So this week, I’m busting eight myths I’ve seen come up over and over again during my four years of living with this condition.

Disclaimer: I’m not a doctor and the information in this post isn’t intended as medical advice. You should always work with a medical professional to devise a plan that works best for you!

Myth #1: Celiac disease is a food allergy

I often hear celiac disease referred to as a gluten allergy—sometimes even by people living with the condition. But it’s an autoimmune disorder, not a food allergy, and that’s an important distinction to make. (ICYMI, you can’t technically be allergic to the gluten protein—however, you can be allergic to wheat, barley, or rye, the grains that contain gluten.)

An autoimmune disease is a genetic disorder that causes your immune system to mistakenly attack healthy cells. With celiac disease, when you ingest gluten, this triggers your body to launch an immune response, which damages the cells that line your small intestine.

If you eat gluten, this may result in symptoms ranging from bloating and gas to fatigue and brain fog. Left untreated, celiac disease can put you at higher risk for developing nutritional deficiencies, infertility, cancer, and other autoimmune disorders.

Food allergies are serious too, but they affect the body differently. When you ingest a food you’re allergic to, your immune system can overreact by producing antibodies that attack said allergen, resulting in potential symptoms like hives, swelling of the lips and face, and trouble breathing.

Depending on the severity of your allergy, this can be life-threatening and require immediate medical attention. However, if you’re allergic to wheat, barley, or rye and you ingest gluten, it won’t damage your intestines.

In both cases, avoiding cross-contact with food is essential for preventing a reaction. My one caveat is that I sometimes say I have a severe gluten allergy when ordering food at a restaurant because it’s an easier concept for people to grasp if they’re not familiar with celiac disease.

Myth #2: Celiac disease only affects the digestive system

Many believe that celiac disease is purely a digestive condition. And while a lot of celiacs suffer from gastrointestinal distress—think bloating, gas, constipation, and/or diarrhea—before diagnosis, those are hardly the only symptoms.

Celiac disease is an autoimmune disorder that can affect just about every system in the body, resulting in over 280 documented symptoms. Some of the most surprising symptoms of celiac disease include fatigue, brain fog, depression, and anemia. These can happen in untreated celiac disease due to the nutritional deficiencies caused by intestinal damage from eating gluten.

Celiac disease is one of the most underdiagnosed conditions, in part because symptoms can be so vague. Beyond Celiac speculates that up to 83% of Americans who have celiac disease are either undiagnosed or misdiagnosed—and people often go six to 10 years before receiving the correct diagnosis. You may not think to get tested for it if you’re experiencing non-GI symptoms.

Myth #3: Gluten and wheat are the same thing

Gluten and wheat are often used interchangeably, but they’re different. Gluten is the protein found in wheat, barley, and rye—therefore, someone with celiac disease needs to avoid eating all three of these grains.

If a food is labeled wheat-free, that doesn’t necessarily mean it’s gluten-free or safe for someone with celiac disease since it could still contain barley or rye. On the other hand, a wheat-free product would be safe for someone with a wheat allergy.

On the flip side, some gluten-free products are made with “gluten-free wheat starch,” which is wheat that’s been processed to remove the protein from it. Gluten-free wheat starch is generally safe for people with celiac disease because it’s the gluten protein in wheat that affects us.

Keep in mind that some people with celiac disease claim to react to gluten-free wheat starch, so it’s up to you to decide if you’re comfortable eating it. However, those with a wheat allergy definitely shouldn’t eat products made with wheat starch as they’re allergic to the entirety of the wheat grain.

Currently, gluten isn’t considered a major food allergen by the FDA, which makes deciphering food labels difficult for those with celiac disease and food allergies. It’s essential to understand how gluten and wheat differ from each other so you can make smart choices when it comes to buying packaged food items.

A beautiful dish of gluten-free pasta carbonara I enjoyed in Rome last summer

Myth #4: You can eat gluten in Europe because it’s “different” over there

If there’s one myth that bothers me most, it’s this one. If you have celiac disease, it’s NEVER safe to eat gluten, regardless of where it comes from, according to the National Celiac Association (NCA).

Remember: Celiac disease is a serious genetic autoimmune disorder that can cause long-term health issues from the intestinal damage that occurs when you eat gluten. Even a crumb of gluten can make someone with celiac disease sick and lead to intestinal damage—so consuming wheat in Europe isn’t something experts advise trying.

Think about it: Why would gluten-free products exist in Europe if it was safe for people with celiac disease to eat gluten there? It doesn’t make sense! Plus, Europe has the same rates of celiac disease as the US, per the NCA—and people living with celiac disease in Europe avoid gluten just like we do here in America.

As for whether the gluten in Europe is really “different” than the gluten in the US? Let’s unpack that below.

According to the United States Agricultural Department (USDA), the US is one of the biggest exporters of wheat—and we actually export wheat to the European Union. That means some of the gluten-filled foods in Europe are being made with wheat that originally came from America.

When it comes to the types of wheat grown in Europe specifically, Food Science Babe, a chemical engineer and food scientist, debunks common wheat flour myths in a recent Instagram post and explains why European-grown wheat still isn’t celiac-safe.

She notes that “the principal varieties of wheat grown in Europe are of the soft variety and contain less gluten than the hard wheat varieties grown in the U.S.” She goes on to explain that while these soft wheat varieties may be lower in gluten, “they absolutely still contain gluten.” Therefore, it’s not safe for celiacs to consume.

Addressing the rumor about glyphosate in wheat and the potential for it to cause a reaction, Food Science Babe says this: “There’s no evidence to show a sensitivity to glyphosate at extremely low residues potentially in foods containing wheat. And since Europe imports plenty of Canadian- and U.S.-grown wheat, you could even be eating the same U.S.-grown wheat when in Europe too.”

The bottom line: If you have celiac disease, then enjoy all the delicious gluten-free bread, pastries, pizzas, and pasta in Europe. I can attest to the quality of gluten-free food abroad, especially in Italy and Spain.

Myth #5: Only certified gluten-free packaged foods are safe

If you’re a member of any online celiac support groups, you’ll learn that many, many people with celiac disease suffer from extreme food anxiety. They’re terrified to eat any packaged foods that aren’t certified gluten-free or made in a dedicated facility.

IMO, and in the opinion of credentialed experts in the industry, you don’t need to be quite that strict. Everyone’s comfort level is different, but as the NCA explains, “Foods do not have to be certified gluten-free (GF) or made in a dedicated GF facility to be safe for people with celiac disease.”

The NCA notes that if a product is labeled gluten-free (but not certified gluten-free) it must contain less than 20 parts per million (ppm) of gluten, according to Food and Drug Administration (FDA) regulations. 20 ppm is the accepted maximum amount of gluten someone with celiac disease can consume safely.

Gluten-free certifications are somewhat different. They’re done by an independent third-party organization (and cost brands money) and usually have stricter requirements than the FDA. A certified gluten-free food may contain somewhere between 5 ppm and 20 ppm of gluten.

The downside to these foods is that they tend to be more expensive because getting the certification costs money—so it’s not always financially feasible to rely solely on these items.

What about packaged foods that don’t have a gluten-free label? It depends. If they don’t contain any gluten ingredients, then they could be safe—but you’ll have to get very good at reading food labels to figure that out because gluten could be hiding in innocuous-sounding ingredients such as “natural flavors.”

I recommend the Gluten-Free Label Reading Guide from the Celiac Space so you can confidently read food labels and know how to spot and avoid hidden sources of gluten.

As for the facilities where packaged foods are made, the Celiac Disease Foundation explains that if an item has a gluten-free label and is made in a shared facility, then this would still be safe for someone with celiac disease to consume.

“The gluten-free label represents the procedures put in place to prevent cross-contact with gluten meet FDA standards,” notes the Celiac Disease Foundation.

Myth #6: Soy contains gluten

I spent a lot of time early in my diagnosis looking up what foods contained gluten because I was so confused by the conflicting statements I saw in online support groups. Foods made from wheat, barley, rye, and sometimes oats (due to the potential for cross-contact) are the only foods that contain gluten.

One misconception I continue to see perpetuated in online groups is that soy contains gluten. Someone will post a label on a packaged food, saying they got sick from it and asking if they missed a hidden source of gluten.

Inevitably, there will be comments stating, “Oh, there’s soy in this, which contains gluten—that’s why you got sick.” While it’s true that regular soy SAUCE is made with wheat, soy on its own (the soybean or protein in soy) is naturally gluten-free.

It’s entirely possible to have a soy allergy or sensitivity—but again, that’s separate from celiac disease. Plain tofu is gluten-free and generally thought to be safe for people with celiac disease, though—so go ahead and enjoy!

Myth #7: As long as something is labeled gluten-free on a restaurant menu, it’s safe

Life would be so much easier if you could order a gluten-free item off a menu without asking a million questions. Unfortunately, that’s not the case. If you have celiac disease, then you still have to be careful and ask the right questions. That’s right: Just because something’s labeled gluten-free doesn’t mean it’s celiac-safe.

Many times, items that are gluten-free on their own (like potatoes) will be prepared in a shared fryer with gluten-containing foods, rendering them unsafe for someone with celiac disease to eat.

Or, take pizza: Gluten-free pizza is oftentimes unsafe for celiacs because it’s cooked on the same surface in the same oven as regular pizza. Same with pasta: Some restaurants will boil gluten-free noodles in the same water used for regular noodles, rendering the gluten-free version unsafe.

I urge you to ask your waiter or the chef how an item is prepared before ordering, even if it says it’s gluten-free on the menu.

Myth #8: Your beauty and personal care products need to be gluten-free

This myth is second on my list of most frustrating. I can’t tell you how many posts I’ve seen in online support groups where someone states that a random beauty or personal care product like a moisturizer or tampon has gluten in it and makes them sick.

When it comes to celiac disease, the only way you can get sick from gluten is if you ingest it. Gluten can’t be absorbed through the skin or scalp—it’s just too big of a molecule.

As far as beauty and personal products go, you should absolutely pay attention to what you’re putting on your lips/in your mouth and choose toothpaste, lip balm, lip gloss, and lipstick that are gluten-free. You don’t necessarily need to change the rest of your routine, though, because simply touching gluten shouldn’t cause a celiac reaction.

Now, if you’re allergic to an ingredient in a formula, then that’s a different story—but that would be unrelated to celiac disease. And if you have kids, I get that you might be worried they’ll accidentally get some shampoo in their mouth while bathing or lick their hands after applying lotion. In that case, you may want to choose gluten-free formulas for your little ones to ensure peace of mind.

I hope you found this post helpful and that it cleared up some confusion. Which celiac myths bug you the most? And are there any others you’d add to this list? Let me know in the comments!