Despite the growing gluten-free diet craze, many people remain surprisingly uninformed or misinformed when it comes to celiac disease. In this lesson I’ll try to dispel the most common celiac disease myths.

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Celiac Disease Myth #1

Celiac disease is an allergic reaction to gluten.

Celiac disease is an autoimmune disease, not a food allergy. A food allergy is a type 1 hypersensitivity and involves an immediate or near-immediate reaction. Celiac disease is not a type 1 hypersensitivity and may involve a delayed reaction or no perceptible reaction at all. Even when you don’t perceive a reaction, the damage occurs internally.

Celiac Disease Myth #2

A bread crumb or two won’t hurt someone with celiac disease.

The most recent research suggests it takes only 30 milligrams of gluten to cause significant, measurable damage. An average piece of bread contains about 5000 milligrams of gluten. So it only takes about 1/164th of an average slice of bread to do significant, measurable damage to the intestines of a celiac disease patient. Remember: this doesn’t mean that patient will feel it or in any way notice the damage being done.

Celiac Disease Myth #3

A celiac disease patient will have an immediate and severe reaction to eating something with gluten in it.

This is one of the biggest myths and one of the most important ones to dispel. This may elicit cognitive dissonance for many people, but someone with celiac disease might be able to eat a large plate of pasta or a sandwich with large pieces of wheat bread… and still not experience any evident or tangible reaction.

As I stated in Myth #1, celiac disease is not a food allergy. The damage is done internally and may not present itself in obvious ways. And it may not always manifest itself with digestive symptoms.

Celiac Disease Myth #4

When celiacs eat gluten, they only experience temporary digestive problems.

There are a number of symptoms of celiac disease that seem unrelated to digestive problems. Patients with celiac disease can experience anything from joint pain to depression. Also, if a celiac disease patient isn’t vigilant in avoiding gluten, that patient will develop a much greater risk for serious malignant cancers. In addition, a wide range of autoimmune diseases correlate with improperly treated celiac disease.

Celiac Disease Myth #5

An effective gluten-free diet simply requires removing gluten.

This is a myth for two reasons. First, someone recovering from celiac disease needs to proactively heal to minimize the long-term consequences of malnutrition. Second, a gluten-free diet isn’t a simple and foolproof solution to illness. New problems can arise on a gluten-free diet if the patient isn’t careful about replacing nutrients often obtained from gluten-containing foods.

Current evidence suggests many people on a gluten-free diet develop new nutritional deficiencies because their diet relied on gluten-containing foods for many nutrients. Of particular note are many of the B vitamins.

To further complicate matters, different people may develop different conditions — including full-blown autoimmune diseases — as a result of untreated celiac disease. These different conditions may require separate, additional nutrition considerations to properly heal.

Celiac Disease Myth #6

Celiac disease always causes you to lose weight.

Many doctors used to think this was the case, but now we know some celiac disease patients can be overweight. The reasons for this aren’t entirely understood yet, but one of the more interesting theories is that in some people, celiac disease triggers the body to go into a survival mode because it lacks nutrients, greatly increasing appetite. To learn more about this phenomenon, read my lesson on gluten intolerance and weight gain.

Celiac Disease Myth #7

Celiac disease patients must keep gluten from touching their skin.

This myth arises from confusing celiac disease with an allergy and a simple and understandable fear of gluten when you have celiac disease. For celiac disease patients, however, gluten must be ingested to do its damage. I know some people will have a strong reaction to this being a myth, but no credible evidence suggests otherwise. Even gluten-related skin rashes like dermatitis herpetiformis are a result of gluten ingestion, not gluten contact.

However, accidental ingestion of lotions, lipsticks and cosmetics can occur. So with children, and with lotions or cosmetics that may accidentally be ingested, it’s still a good idea to go with the gluten-free options.

Celiac Disease Myth #8

You can outgrow celiac disease.

Celiac disease is a genetic life-long illness. The condition may go into remission while you avoid gluten, but once you develop celiac disease you must avoid gluten for the rest of your life.

I’ve known people who were diagnosed with celiac disease in their youth and had long since abandoned their gluten-free diet because they thought they no longer had celiac disease. But celiac disease isn’t just a childhood phenomenon.

One can develop celiac disease at any age. You may go your whole life digesting gluten without disease, then suddenly in your 70s, celiac disease develops and gluten becomes toxic to your body.

We don’t yet understand what environmental trigger causes people to go from being able digest gluten to having a severe reaction to it.

Celiac Disease Myth #9

As soon as you stop eating gluten, you’ll feel much better.

While this might be the case for a few people, for most people it will take at least four to six weeks to experience noticeable recovery. In some cases, patients may not experience real, tangible relief for several months. Please see the Gluten Contamination Elimination Diet for tips on making sure you experience real recovery.

Celiac Disease Myth #10

Celiac disease is rare.

As recent as a decade ago, celiac disease was considered very rare. We now know that around 1 in every 100 people suffer from celiac disease, with a vast majority of those individuals still walking around undiagnosed. In addition, we now know a non-celiac gluten sensitivity exists and likely affects an even larger number of people than celiac disease.

Celiac Disease Myth #11

Celiac disease always involves digestive problems like diarrhea, constipation, bloating or cramping.

More and more research suggests celiac disease may present neurological symptoms more often than digestive symptoms. While the immediate damage is done to the lining of the small intestine, sometimes this is imperceptible to patients. Yet that damage, through the inflammation it triggers and the poor absorption of critical nutrients it causes, may cause symptoms throughout the body but not in the gut.

In addition, the antibodies triggered by gluten may directly affect different parts of the body. This explains gluten intolerance symptoms such as gluten ataxia and migraines.

Celiac Disease Myths In Review

Celiac disease is a serious and life-long autoimmune disease. A strict gluten-free diet is a necessary prescription for this serious illness. Be careful not to assume someone is just a sucker for a diet fad or is over-reacting to the presence of gluten in their food. We need patients to develop a better understanding so they can heal, but we also need the general population to develop a better understanding of celiac disease. Remember celiac disease is not a food allergy and may not trigger an obvious, immediate reaction. The consequences of untreated celiac disease are severe and may include cancer, including potentially fatal forms of lymphoma.