Both Cassie and I are gluten intolerant and sometimes we wonder if Cassie is Celiac. So this article was of great interest to us.
Celiac disease was first described over 8,000 years ago by a Greek physician who had no idea that this disorder was a type of autoimmune reaction to gluten. (1) This information didn’t become clear for thousands of years later, when researchers realized that celiac patients were triggered by eating gluten, a protein found in numerous foods eaten all over the world (especially bread!).
Even in the past 50 years, we’ve come to understand much more about how celiac disease symptoms and gluten intolerance symptoms manifest, along with the dangers of untreated food allergies, such as malnutrition, stunted growth, neurological and psychiatric illness, and much more.
The Most Common Celiac Disease Symptoms
Celiac disease — often triggered by an allergy to gluten, a protein found in wheat, barley or rye grains — is believed to affect about a little less than 1 percent of all adults (most statistics indicate a diagnoses rate between 0.7 percent and 1 percent of the U.S. population). For people who have been diagnosed with celiac disease, following a gluten-free or gluten sensitivity diet is considered “medical nutrition therapy” and is the only definitive way to improve symptoms and prevent future health problems.
The presence of celiac disease and gluten intolerance has been rising significantly over the past several decades, although the debate is still out as to why this is. According to certain reports, celiac disease rates have risen by nearly 400 percent since the 1960s.
While celiac disease rates are still very low compared to other common chronic health problems — like cancer, diabetes, obesity or heart disease, for example — what’s alarming is that many experts in the field of food allergies and gluten intolerance believe the many more people might actually have celiac disease but not even realize it. For instance, researchers from the University of Chicago estimate that only about 15 percent to 17 percent of celiac cases are actually known in the U.S., making roughly 85 percent of people with celiac disease unaware of the problem. (2)
Many celiac disease symptoms boil down to dysfunction within the digestive track, including within the gut and intestines. Celiac disease is a type of autoimmune disease characterized by an inflammatory response to gluten that damages tissue within the small intestine. The small intestine is the tube-shaped organ between the stomach and large intestine, where a high percentage of nutrients are usually absorbed — however, in people with celiac disease this process stops working right.
According to the Celiac Disease Foundation, this disease can be difficult to diagnose because it affects people on all different levels in various ways. In fact, in people with gluten allergies it’s believed that there are hundreds of symptoms of celiac disease within the body that are related to the effects of the disease on the immune and digestive systems. (3)
Celiac disease symptoms typically include:
- cramping and abdominal pain
- diarrhea or constipation
- trouble concentrating or “brain fog“
- changes in weight
- sleep disturbances including insomnia
- chronic fatigue or lethargy
- nutrient deficiencies (malnutrition) due to absorption problems within the digestive tract
- chronic headaches
- joint or bone pains
- changes in mood, such an anxiety
- tingling numbness in the hands and feet
- irregular periods, infertility or recurrent miscarriage
- canker sores inside the mouth
- thinning hair and dull skin
Gluten is sometimes called a “silent killer” because it can be the source of lasting damage throughout the whole body, without someone even knowing it. The microbiome is considered “ground zero” for where celiac disease symptoms first start and spread throughout various tissue. Celiac disease symptoms can range in terms of intensity and depend on the person’s unique response, so not every person will experience the same reactions or signs.
For some people, practically no symptoms might be present. For others, their symptoms might start out as ongoing headaches, unexplained weight changes or feeling more anxious than usual. This can then continue to progress and turn into insomnia, feeling “wired but tired,” having joint pain, and even causing symptoms of depression and eventually cognitive decline or dementia in older people.
It can be hard to recognize celiac disease because symptoms are usually very similar to those caused by other digestive diseases and autoimmune conditions, such as irritable bowel syndrome (IBS), iron-deficiency anemia, food allergies like lactose intolerance, sensitivity to FODMAPs, or digestive disorders like inflammatory bowel disease and diverticulitis. (5)
Less Common, but More Serious, Celiac Disease Symptoms
While the list above represents more common symptoms of celiac disease, there have also been findings that suggest that damage done by this disease goes far beyond the gastrointestinal tract and that it manifests in ways different than what we previously thought. Research related to food allergies, including gluten intolerances, over the past few decades has revealed that gluten can have effects on almost every system in the body. (6) And whether or not someone displays any classic symptoms, all people with celiac disease are still at risk for long-term complications.
While not everyone with celiac disease will experience such drastic symptoms or problems, it’s possible that the underlying inflammatory reactions to gluten will cause health problems within the gut microbiome, brain, endocrine system, stomach, liver, blood vessels, smooth muscle and even the nuclei of cells. This is why celiac patients are at a higher risk for numerous diseases, including:
- Type 1 diabetes
- Heart complications
- Multiple sclerosis
- Skin disorders (like dermatitis or eczema)
- Autoimmune thyroid disease
- Anxiety or depression
- Other food allergies
What Causes Celiac Disease Symptoms?
A gluten allergy (or sensitivity, meaning the type that isn’t confirmed as celiac disease) increases the production of inflammatory cytokines. These are sent out from the immune system in order to attack perceived threats throughout the body. This happens in certain people due to a combination of both environmental and genetic factors. People with celiac disease usually are genetically predisposed to having a gluten allergy (including abnormalities in human leukocyte antigens and non-HLA genes), although having celiac disease in the family alone doesn’t mean someone will necessarily be diagnosed.
One of the hallmarks of celiac disease is elevated levels of antibodies formed from contact with gliadin, one compound that makes up the protein gluten. Exposure to gliadin can turn on specific genes in someone’s immune cells that trigger the release of cytokine chemicals. Cytokines are normally beneficial when they do their intended job — helping repair and protect the body from things like bacteria, viruses, infections and injuries. However, we know that cytokines are also pivotal players in causing chronic inflammation, the root of most diseases.
High inflammation levels are tied to generally poor health and higher rates of disease. High inflammation ups the risk for myriad health problems, including mental disorders, autoimmune diseases and even cancer. Research also suggests that people with other autoimmune disorders and diabetes are at a higher risk for having celiac disease because they share some of the same genetic factors and immune reactions.
Why and how exactly does gluten cause such problems? It all comes down to the chemical composition of this protein and how it impacts the digestive organs. Gluten is found in certain grains and is considered an “antinutrient.” Antinutrients can be both good and bad — for example, some are called “phytonutrients” and are found in many vegetables and fruits. Antinutrients are present in plants that have evolved to protect themselves from threats by forming “toxins” that repel insects, bugs, rodents and fungus.
Gluten is one type of natural antinutrient that acts like a toxin when humans eat it — since it can damage the lining of the gut, bind essential minerals making them unavailable to the body, and inhibit digestion and absorption of essential nutrients, including protein.
How Celiac Disease Affects the Digestive System
When celiac disease symptoms increase, it’s a result of gluten kicking off inflammatory responses that are tied to dysfunction mostly within the digestive, endocrine and central nervous systems. Much of the problem begins in the gut, where a large percentage of the immune system is actually held. When someone with celiac disease consumes gluten, essentially an “alarm” is sounded within the gut environment that sends the immune system into a tailspin.
Exposure to the gliadin protein increases gut permeability, which means small tears (or junctions) in the gut lining can open wider and allow for substances to pass through and enter the bloodstream. The immune system responds by damaging or destroying villi, which are the tiny protrusions that line the small intestines. Normally in someone who is healthy, the gut wall does a great job of keeping particles from emptying into the bloodstream, but irritations caused by food sensitives causes this system to break down.
This process is known as “leaky gut syndrome,” and when you develop this condition you can become highly susceptible to other food allergies or sensitivities that you didn’t previously have, due to the immune system working on overdrive to get things under control.
Gluten is also said to have certain “sticky” qualities that can interfere with proper absorption and digestion of important nutrients when people have a gluten intolerance, which leads to poorly digested food within the digestive tract, deficiencies and further inflammation. (8) When the immune system recognizes that foods aren’t being properly broken down within the intestines, leaky gut syndrome symptoms can increase as the body continues to assault the lining of the small intestine, causing reactions like abdominal pain, nausea, diarrhea, constipation and intestinal distress.
Leaky gut syndrome makes it possible for lipopolysaccharides to dysfunction, which are structural components of our small microbial cells that live within our guts. When these are able to penetrate the gut lining by sneaking through small openings in the gut wall, they increase systemic inflammation.
How Celiac Disease Affects the Central Nervous System
Many people think of celiac disease caused by food allergies as only damaging the digestive system, but in fact, the brain is one of the most susceptible organs to inflammation. Gluten increases inflammation and gut permeability but also can contribute to a breakdown of the blood-brain barrier, which means that certain substances can make their way to the brain that are normally kept out. This is exactly the reason why celiac disease symptoms can commonly include brain fog, depression, anxiety, trouble sleeping and fatigue.
And the brain isn’t even the only other organ that’s vulnerable to the effects of untreated food allergies — many people might not experience obvious signs of gastrointestinal troubles from celiac disease or gluten sensitivity but can still find that the immune system is “silently attacking” the body elsewhere, such as the muscles or joints.
Antibodies that are intended to attack gliadin appear to cross-react with certain brain proteins, meaning they bind to neuronal synapsis and contribute to complications within the brain. In some serious cases, when this occurs dysfunctions can show up in the form of seizures, learning disabilities and neuro-behavioral changes.
How Is Celiac Disease Different than Gluten Sensitivity?
Some researchers even speculate that a high percentage of the population might have some form of sensitivity to gluten, whether they truly suffer from celiac disease or not. In fact, it’s been suggested that nearly everyone has some level of negative reaction to gluten that falls somewhere along a spectrum, with some people (especially those with confirmed celiac disease) having reactions that are much more serious than those of others.
We now know that it’s possible to have “gluten intolerance” without having celiac disease. This is a condition known as non-celiac gluten sensitivity (NCGS). (9) Even people who are not clinically allergic to gluten (they test negative for celiac disease and don’t appear to have some of the classic signs of not digesting the protein correctly) can experience similar widespread problems when eating foods with gluten, which tend to decrease substantially when they avoid eating it. While rates of celiac disease diagnoses remain relatively low, more and more people are also identifying themselves at sensitive or intolerant to the effects of gluten.
Why is this? One reason might be an overexposure to gluten, since this stuff is everywhere today! Gluten is included in many processed foods in one form of another and lurks in everything from cookies and cereal to ice cream, condiments and even beauty products. Another reason more people are choosing to stay away from gluten is that knowledge of its effects is steadily rising. The “gluten-free movement” has been growing in popularity — even big-name food manufacturers are now offering gluten-free flours, breads, cereals, etc. There is even gluten-free alcohol nowadays!
There’s also such thing as an allergy to wheat, which is different than an allergy to gluten. People with wheat allergies can also benefit from following gluten-free diets, but they don’t necessarily need to severely restrict rye, barley and oats from their diets like celiac patients do.
How to Deal with Celiac Disease Symptoms and Diagnoses
If you can identify with the celiac disease symptoms described above, it’s best to visit a doctor for screening tests and a confirmed diagnosis. Diagnoses are usually based on test results from a small bowel biopsy followed by clinical and serological responses to exposure to gluten to confirm the diagnosis. Positive anti-tissue transglutaminase antibodies or anti-endomysial antibodies are used to confirm the diagnosis. Following a gluten-free diet during an elimination diet period can also show whether symptoms go away once gluten is removed.
Follow a Strict Gluten-Free Diet
There is no known cure for celiac disease, which is chronic and autoimmune in nature, so there are only ways to minimize symptoms and help rebuild the immune system. First and foremost, it’s crucial to follow a completely gluten-free diet if you have celiac disease by avoiding all products containing wheat, barley or rye. Gluten makes up about 80 percent of the protein found in these three grains, although it’s also hiding in many other products and contaminated grains too.
Keep in mind that because a large percentage of people’s diets is now based on packaged foods, most people come into contact with gluten more often than ever before. Modern food-processing techniques even often result in gluten appearing in trace amounts in products containing other “gluten-free grains,” such as corn or gluten-free oats.
It’s important to read food labels very carefully and avoid products made with additive ingredients that contain even small traces of gluten — such as nearly all flour products, soy sauce, dressings or marinades, malt, syrups, dextrin, starch, and many more “sneaky” ingredients. The Celiac Disease Foundation offers helpful resources for how to strictly avoid gluten, including this list of gluten sources, when grocery shopping or eating out at restaurants. (10) The good news is that you still have plenty of options when following a gluten-free diet, and today there’s even a plethora of gluten-free food items available on the market, including ancient grains and gluten-free flours.
A lifelong adherence to a strict gluten-free diet will allow the immune system to repair itself, which will keep symptoms from flaring up. This process can take anywhere from a few weeks to many months depending on the severity. Avoiding gluten allows the villous atrophy in the small intestines or gut lining to close up once again and helps prevent future complications caused by ongoing inflammation.
Correct Any Nutrient Deficiencies
Many people with celiac disease also need to take supplements to help rebuild their nutrient stores and heal symptoms caused by malabsorption. (11) This can include deficiencies in iron, calcium and vitamin D, zinc, B6, B12, and folate. These are a common celiac disease symptoms because the digestive tract cannot absorb nutrients as well when damage and inflammation occurs, which means even if you eat a great diet otherwise, you might still have deficiencies. (12) You can talk to your doctor about performing tests to confirm any deficiencies, and then you can take quality supplements to help speed up the healing process and fill in any gaps.
Your doctor might prescribe dietary supplements in high doses or encourage you to take a gluten-free multivitamin. Most gluten-free foods are not fortified with additional nutrients (like many packaged enriched wheat products are) so supplements are another way to cover your bases. Of course, loading up on nutrient-dense foods is the best way to obtain more vitamins and minerals naturally.
Consider Having Additional Tests Done to Check Bones, Skin and Joints
Some doctors will order a bone density test or other tests to determine if deficiencies have caused problems like bone loss or joint inflammation. You might also consider having various leaky gut syndrome tests done to determine how severe your condition has become. Medication is not normally required except in some cases. If your skin has developed a disorder due to autoimmune conditions, such as dermatitis herpetiformis, medications can help clear up symptoms while you work on tackling the root causes by following a gluten-free diet.