Celiac disease is a disorder of the digestive system that is characterized by an autoimmune reaction to gluten, a protein present in rye, barley, wheat, triticale, and many other cereal grains.
The persistent auto-response to gluten causes gut inflammation and destroys villi, finger-like projections in the small bowel, leading to acute malabsorption and therefore malnutrition.
Left untreated, celiac disease can result in a range of health problems from infertility and miscarriage to anemia and coronary heart disease. The longer you unknowingly ingest gluten-containing foods, the more damage it does to your gastrointestinal tract (GI).
Unfortunately, only about three percent of at least 3 million Americans with celiac disease have been diagnosed, according to the University of Chicago Medical Center. Getting tested sooner rather than later can make a huge difference. Early screening means the disease will be detected sooner, allowing you to avoid health complications, pain or the adverse damage that comes with delayed diagnosis.
Once you are confirmed to be celiac, embracing a 100 percent gluten-free diet is the best course of action. However, the gluten-free lifestyle is currently riding on a wave of popularity, a phenomenon that has woven a plethora of misconceptions around gluten sensitivity and celiac disease.
Celiac disease shares several common symptoms with GI disorders: ulcer colitis, gluten allergy, and inflammatory bowel syndrome (IBS), thus adding more confusion to the mix. This is part of the reason why some people are wrongly self-diagnosing themselves with the disease.
In response, we have explored and debunked 13 of the most common misconceptions and myths surrounding celiac disease.
#1: Celiac disease is an allergy
Wrong, celiac disease is not an allergy – although both conditions exhibit similar symptoms. Celiac disease is actually an autoimmune disorder, which is a technical term for when the immune system mistakenly starts attacking healthy cells or body tissue. Interestingly, celiac disease has historically been thought to be a wheat allergy ever since it was identified by the Greek physician Aretaeus of Cappadocia eight millennia ago. In fact, it wasn’t until around 1990 that it became widely recognized as an autoimmune condition. Celiac disease isn’t the only autoimmune disorder out there. Others include multiple sclerosis (MS), rheumatoid arthritis, lupus, type 1 diabetes, Duhring disease (dermatitis herpetiformis), and Sjögren’s syndrome, just to mention a few.
Like allergies, autoimmune disorders are usually triggered by a foreign substance, which in the case of celiac disease is gluten. One of the many interesting facts about food allergies is that there is no way of completely preventing them. Celiac disease, on the other hand, can actually be avoided by simply not ingesting anything with gluten.
Another difference is that people are genetically predisposed to develop celiac disease; food allergies are mostly caused by environmental factors.
The effects of celiac disease are far-reaching, while allergic reactions are usually short-lived and mild. If a celiac continues to consume gluten, for instance, inflammation will cause extensive damage to the villi. If this goes on for long, the small intestine will be rendered unable to absorb vitamins, minerals and other much-needed nutrients from food.
#2: Celiac disease is the same as gluten sensitivity
This is closely related to Myth #1 because celiac disease is neither a gluten allergy nor is it the same as gluten intolerance. You can read all about food intolerance vs food allergies in this comprehensive guide. True, a reaction to gluten plays a big role in the development of both gluten sensitivity and celiac disease. The two also share common digestive system symptoms, such as constipation, bloating, excessive gas, fatigue, and stomach pain.
However, gluten sensitivity (aka gluten intolerance) has nothing to do with the body’s immune system. On the other hand, celiac disease is a full-blown autoimmune reaction to the presence of gluten in the small intestine. The symptoms and effects of gluten sensitivity are milder and often less damaging than those of celiac disease. As already stated, when someone with celiac disease consumes gluten, the villi are damaged, interfering with normal small intestine activity.
Genetics is a big risk factor for celiac disease, and the responsible genes can be triggered at any age. In short, one is born with celiac disease while gluten intolerance can be developed by anyone. Also, you can develop celiac sprue at any time after you start consuming gluten foods. The gut bacteria and GI microbiome ecosystem might influence when genes for celiac disease are triggered.
#3: Celiac disease is not a real disease
Celiac disease is a real and serious condition that can be very enfeebling. Symptoms include: skin rash, headaches, fatigue, anemia, stomach pain, excess gas, bone pain, constipation, and other digestive problems. Celiac disease can have a major effect on your quality of life.
But that isn’t the worrying part. When you’re celiac, gluten (found aplenty in wheat, rye, and barley) can actually cause severe malabsorption. Without a sufficient supply of nutrients, you will most likely experience drastic weight loss, heart problems, and kidney issues.
If left untreated, celiac sprue can lead to other health complications, including: miscarriage, infertility, coronary heart disease, pancreatitis, osteoporosis, thyroid disease, several cancers, and even neurodegenerative disorders like Alzheimer’s, dementia and Parkinson’s disease. So, before you belittle celiac disease as something trivial, think again.
#4: Celiac disease is only a child’s disease and can be outgrown
Although celiac disease is usually deemed a children’s disease, it can actually affect anyone and can develop at any moment. This is a common misconception because celiac sprue often shows symptoms as soon as you ingest gluten, which is typically at a tender age.
Nonetheless, adults and children with celiac disease share several symptoms, including itchy skin rash, diarrhea, and stomach pain. Some children may experience stunted growth, behavioral issues, neurological problems, delayed puberty, and other symptoms of juvenile celiac disease. It’s not uncommon for such a child to have short stature or fail to thrive.
Bloating, depression, fatigue, anxiety, iron-deficiency anemia, miscarriage, and infertility are some of the additional symptoms common to adults. Given that celiac disease is highly hereditary, it’s best to talk about it with your physician if you or any of your children have been diagnosed with the disorder. The sooner you get on a gluten-free diet, the more likely you will reverse or stop the symptoms.
#5: There is no way to diagnose celiac disease
That’s far-fetched — there are numerous ways to screen, detect or diagnose celiac disease.
Blood serology (or blood screening) is the most common method for diagnosing the condition. More specifically, the blood tests screen for antibodies associated with celiac disease. The standard blood test for the disease is known as tTG-IgA. The good news is that you don’t have to make an expensive trip to the doctor’s office or your local pharmacy.
With our imaware™ at-home tests, you can not only screen for celiac disease but also manage the condition right from the comfort of your own home. The best part? These cutting-edge tests are painless, super simple, and can be done in a matter of minutes.It is worth keeping in mind, however, that some celiac people may return a negative blood test result. That’s why a blood test cannot in and of itself be a conclusive diagnosis.
If the results of the blood test show that you might be celiac, your doctor may recommend other modes of diagnosis. More often than not, a biopsy of your small intestine will help confirm the diagnosis. In addition, you may decide to be screened for the gene that causes celiac disease.
#6: There’s a cure for celiac disease
There is no known cure for celiac disease. That is the sad truth. Once you develop the disorder, the only treatment option is a strict diet completely free from gluten. That means you have to avoid anything and everything that may contain gluten, from the food and drinks you consume to certain cosmetic products and medication. Some people find it better to complement their gluten-free lifestyle with multivitamins, supplements, and other health programs. Generally speaking, while a gluten-free treatment may help, the disorder itself isn’t curable.
People with celiac disease may also benefit from support groups and therapies. A pneumococcal vaccine has also been found to help keep celiac disease at bay.
As a general rule of thumb, someone with celiac disease should be in close contact with a general practitioner, pediatrician (for celiac children), nutritionist, dietician or gastroenterologist.
#7: You can treat celiac disease with drugs or a gluten free diet
As we’ve seen, this is not exactly true because there is no true cure for celiac disease. Yes, only a gluten-free regimen can help, but the condition is not treatable or curable in the long run. In fact, celiac disease is a life-long condition, which means you have to stick to a strict diet that’s free of gluten for the rest of your life.
You have probably heard that there are some drugs and medications that can help with celiac disease. These can only treat other conditions caused by your celiac disease, ranging from diarrhea to stomach complications.
Simply speaking, a gluten-free diet doesn’t cure celiac disease; it just helps you to manage it.
#8: Celiac disease is “only” a gastrointestinal disease
Yes, gastrointestinal symptoms like diarrhea, bloating and stomach pain are very common with celiac disease. These apparent symptoms can make you believe that the disease only affects the GI.
Although the digestive system bears the brunt of the problems, celiac disease can adversely affect a host of organs and body systems. For instance, severe inflammation can damage the bile duct, leading to pancreatic malfunction, liver problems, and kidney disease.
Don’t forget that most autoimmune diseases go hand-in-hand, so celiac disease usually occurs in conjunction with thyroid disorders, type 1 diabetes, multiple sclerosis, and so forth. One study published by researchers at the University of Padua in Italy showed that celiac children are 4.5x and 2.5x likely to develop autoimmune thyroid disorder and type 1 diabetes respectively.
Plus, celiac disease can lead to an array of other non-GI symptoms, such as itchy skin rashes, drastic weight loss, joint pain, migraines, anemia, and fatigue. Some people may suffer from infertility and irregular menstrual periods, or experience pregnancy complications, including preterm delivery and miscarriage.
#9: If you don’t experience the same symptoms as your relatives who are diagnosed with celiac disease, then you don’t have the condition
This isn’t true. Celiac disease symptoms vary from person to person. This is also true among related people with celiac disease. You may be surprised that a younger sibling has symptoms, while other family members have none.
If you have celiac disease, your 1st and 2nd degree relatives are more likely to develop the condition. That’s why celiac disease specialists recommend that you get tested as soon as possible if you have a relative with the disorder. The presence of the disease in a family is the first step towards a proactive diagnosis.
Because the symptoms and onset of the disease vary from individual to individual, it is recommended that you get tested as soon as a relative is diagnosed. Then undergo another screening every two to three years. It is not uncommon for a family member to test negative during one blood test, but then have a positive test result later. In such a case, the best option is to carry out a gene test for celiac disease.
#10: Food labeled as “gluten free” doesn’t include any gluten
No, that’s not always true. It is very difficult to get rid of all gluten from food. Today, gluten can be detected using specialized tests that can measure the quantity of the protein down to 3ppm (parts per 1,000,000). More crucially, experts say that people with celiac sprue can tolerate gluten levels of up to 20 parts per million.
Sadly, labeling items “gluten-free” is voluntary for food manufacturers. Even if you find a food item labeled as such don’t take their word for it. It doesn’t even mean that the food has zero gluten in it. When a manufacturer labels food “gluten free” it means is that the food contains less than 20 parts per million of gluten. As such, if you are extremely sensitive to gluten, you might still experience mild to acute symptoms of celiac disease. Remember that food designated ‘gluten-free’ can still be contaminated with gluten during processing, packing or distribution. Our article on what to expect when you are living with celiac disease will help you know what makes certain foods great for a gluten-free diet.
#11: Restaurants offering gluten-free food can guarantee there’s no gluten
Eating out is an extremely delicate affair for anyone with celiac disease. You want to be absolutely sure that the food on your plate is gluten-free. Unfortunately, restaurants cannot guarantee there is zero gluten in the gluten-free menu items. But there’s logical reasoning behind this. Food making is a multi-step process that starts with individual ingredients. Whereas each ingredient may be gluten-free, the food can be contaminated in any of the steps before it reaches your plate. Gluten can make its way into a gluten-free dish during the process of transportation, washing, cutting, storage, making, and even serving the food.
#12: Celiac people cannot drink alcohol
This isn’t far-fetched, but it is not always true. The truth of the matter is that most beers are made with hops, barley, wheat or other gluten-rich grains. That’s how this myth came about.
However, several alcoholic beverages are gluten-free. Take hard ciders, for instance. Churned out of from fermented fruit punches, hard ciders contain virtually no gluten. But you should still be careful: some cider makers do use barley, so it pays to check out the label. Pure distilled gins, whiskeys, and other liquors are usually safe for celiac drinkers. How so? The distillation process typically breaks down almost all types of dietary protein, leaving only purified alcohol.
The lesson? If you’re a confirmed celiac, be sure to carefully go through the label to make sure your alcoholic beverage is indeed devoid of gluten To be on the safe side, stick to pure distilled liquors.
#13: A gluten free diet is great for everyone, not just people with celiac disease
The gluten-free diet movement is all the rage right now, and with good reason. Most people believe it will help them lose weight and keep it off. While this might have a grain of truth, going on a gluten-free diet without having celiac disease can come with a battery of risks.
Wheat, barley, oats, rye, and other gluten-rich grains are loaded with much-needed dietary fiber. This helps digestion and prevents complications like bloating and constipation. When you stay away from gluten foods, you are essentially removing fiber from your diet. That’s a big no-no.
Yes, a gluten-free diet may seem attractive to those who want to shed a few unwanted pounds. However, this diet can have a negative effect. Did you know that most gluten-free cookies, brownies, and other baked items are jam-packed with sugar, calories, and other undesirable ingredients?
A gluten-free diet can also translate into less mineral and vitamin intake. However you look at it, you should think twice before you go gluten-free if you don’t actually have celiac disease. Besides, when you finally return to consuming gluten after a long hiatus, the results might not be pleasant.
Summary
Marked by a severe autoimmune reaction to gluten protein present in barley, rye, wheat, and other grains, celiac disease affects 1 in every 141 Americans. This isn’t a rare disease. Unfortunately, approximately 97 percent of people with celiac disease in the US don’t know they have it because they haven’t been diagnosed. ndiagnosed or untreated celiac disease is known to cause widespread inflammation in your small bowel. The result is ugly: it destroys villi, the small hair-like projections on the walls of the small intestine.
Celiac disease is linked to malnutrition because the villi, which are responsible for the absorption of nutrients from the food you consume, are attacked. It can also lead to a series of other health complications, including infertility, pregnancy problems, anemia, heart disease, pancreatitis, headaches … the list goes on and on.
The worst part is that every day that you consume gluten, celiac disease continues to wreak havoc on your small intestine and other vital organs, from the pancreas to the brain. To add insult to injury, this disorder shares a number of common symptoms with typical gastrointestinal conditions like ulcer colitis, irritable bowel disease (IBS), gluten intolerance, lactose intolerance, and much more. This makes diagnosis difficult.