Because these symptoms develop after consuming gluten, celiac disease symptoms are often misinterpreted as signs of other digestive disorders, such as irritable bowel syndrome, Crohn’s Disease or Ulcerative Colitis. But celiac sprue disease is an autoimmune disease, and often the most insidious and serious signs are not as tangible and immediate as the most common gastrointestinal problems associated with it. Celiac disease may manifest itself differently in different people, so it is challenging to isolate a simple checklist of celiac symptoms.
Note: I just published a Celiac Disease Symptoms Checklist. Because CD is complex, the checklist addresses family history and medical history as well as celiac symptoms. If you’re just looking for a concise checklist you can fill-out and take to your doctor, start there.
Since the signs and symptoms of CD can be so complex and varied, they require a comprehensive discussion. Use the following Table of Contents to jump to a specific section:
- What Is Celiac Disease?
- Celiac Disease Symptoms and Signs
- Celiac Symptoms In Children
- Symptoms of Celiac Disease In Adults
- Causes
- Diagnosis
- Treatment
- Refractory Celiac Sprue Disease and How It Increases Your Cancer Risk
It all begins in your gut: your immune system reacts to consuming gluten by attacking and inflicting severe damage to the lining of your small intestine, particularly to the villi and microvilli. This damage prevents your small intestine from absorbing the nutrients your body needs from the food you eat and allows proteins and toxins to pass through your intestinal wall into your bloodstream (a phenomenon sometimes referred to as leaky gut syndrome). In addition, this process creates inflammation along the mucosal lining, which causes problems both within your small intestine but it also causes problems because your body reacts in a number of ways when it detects excess inflammation.
What Is Celiac Disease?
Celiac disease is commonly referred to as gluten intolerance, although the clinical distinction between the two terms is more complicated. Gluten is a protein composite mostly found in grassy grains like barley, rye, spelt and especially wheat. Gluten itself, however, is used in a broad range of products where you might not expect it. For a better understanding of gluten itself, I recommend you read my guide: What Is Gluten?
Celiac disease (CD), also referred to as coeliac disease, celiac sprue disease, coeliac sprue disease, gluten enteropathy (or gluten-sensitive enteropathy), and non-tropical sprue. Celiac comes from the Greek word, koiliakós, which translates into abdominal. Yes, this autoimmune disease features many names, which is why I have an article discussing the semantics of gluten intolerance: Gluten Intolerance Vocabulary
Regardless of what you call it, CD refers to an autoimmune disease where one’s body responds to gluten by attacking itself, with the proximal intestine being the first and primary target. Basically, your body over-reacts to gluten by producing a high concentration of specific antibodies. Here is a clinical or technical definition of celiac disease:
Positive antibodies (AGA, EMA and Anti-tTG) to the protein peptides gliadin and glutenin (or secalin or hordein), intestinal endomysium, and tissue transglutaminase, in addition to a positive test for the genes HLA-DQ8 or HLA-DQ2.
People susceptible to CD contain the genes HLA-DQ8 or HLA-DQ2 and the primary culprit that triggers the ill effects in those who are genetically susceptible is called gluten. While gluten is casually referred to as a protein, the term gluten actually represents a specific composite of proteins called peptides. The protein that contains these peptides varies in different gluten-containing grains: rye contains secalin, barley contains hordein and in the most common culprit, wheat, the proteins are called gliadin and glutenin.
One confusing part is that celiac disease is not a wheat allergy. You might suffer from a wheat allergy yet not be gluten intolerant and you might be gluten intolerant but not suffer from a wheat allergy. Wheat allergies are not an autoimmune disease like celiac disease; instead a wheat allergy is an allergic reaction, like hay fever or a peanut allergy. Wheat allergy symptoms occur when mast cells and basophils in your body react to IgE (or Immunoglobulin E), and are a type 1 hypersensitivity. Celiac disease is a Type IV Hypersensitivity, which is also called a delayed type hypersensitivity or a cell-mediated response.
While the most pronounced damaged caused by CD occurs in your small intestine along the lining of intestinal wall and its villi (and microvilli), the more we understand this autoimmune disease the more we realize it may impact far more of our anatomy than we previously assumed. CD can develop at any stage of your life. It has been diagnosed in babies and it has been diagnosed in the elderly. Adult onset celiac disease is not uncommon.
In case you can’t tell, the definition of celiac disease is a little confusing for many people. Often times, the only distinction between gluten sensitivity or gluten intolerance and celiac disease involves clinical diagnosis. People suffering from non-celiac gluten sensitivity (NCGS) can experience severe consequences of eating gluten despite not being diagnosed with celiac disease (see non-celiac gluten intolerance for more). And yet, even the means for diagnosing celiac disease seems to be evolving. Different degrees of gluten-sensitive enteropathy seem to indicate more genes than just the ones I’ve mentioned, and I wouldn’t be surprised if our definition of celiac disease changes a bit within just the next couple of years.
Celiac Disease Symptoms and Signs
While the effects of celiac disease are not entirely understood yet and may be more far-reaching than we currently realize, the main effect we do understand is this: over time, people with celiac disease have a high concentration of antibodies (AGA, EMA and Anti-tTG) that attack their intestinal lining. These antibodies cause intestinal inflammation and gradually atrophy the tiny finger-like hairs along the intestinal wall called villi. These villi absorb nutrients from foods as those foods pass through the intestine.
When these villi are worn down, several things happen. First you are less able to absorb nutrients from the food you consume, causing even people with healthy diets to manifest symptoms of malnutrition or malabsorption. Secondly, because these foods aren’t as well-digested earlier in the intestine, they catalyze various problems later in the digestive tract, which include constipation and increased toxicity in your intestinal tract. And third, because the intestinal wall is less protected, the gluten peptides triggering this problem can pass across your intestinal wall and into your bloodstream, further exacerbating the autoimmune response.
The phenomenon where proteins, toxins and perhaps more pass through the intestinal membrane and into the blood is often called leaky gut syndrome. In the past, the term leaky gut syndrome was used by alternative medicine practitioners, but recent research by Dr. Alessio Fasano, professor of pediatrics and physiology and director of the Center for Celiac Research at the University of Maryland, suggests an association between intestinal permeability and not only celiac disease, but other autoimmune diseases as well.
But what are the exact symptoms of celiac disease, you may be asking at this point. Well it isn’t an easy list to compile, but here goes my attempt.
The signs of celiac disease differ with each individual. The symptoms sometimes look like the symptoms of other digestive diseases. This disease is many times confused with Irritable Bowel Syndrome (IBS), and many of its indications overlap with the symptoms of conditions like lactose intolerance, candida infections, ulcerative colitis, and Crohn’s disease. Some people report not having any symptoms at all. There are over 250 documented celiac symptoms, which makes listing all symptoms feel pretty futile, but I will try here anyways as I really want to help my readers identify and treat their ailments.
Celiac Symptoms In Children
- Abdominal pain
- Abdominal distention
- Bloating
- Constipation
- Dental Enamel Defects</>
- Intermittent diarrhea
- Malodorous flatulence
- Weight loss
- Vomiting
- Delayed growth, stunted growth or Failure to Thrive
- Grayish stools with a foul odor
- Dermatitis Herpetiformis
- Urticaria
You should note several serious conditions which many people associate with celiac disease, although a direct connection isn’t 100 percent clear at this point. These include:
- Sjogren’s Disease
- Juvenile Idiopathic Arthritis
- Turner Syndrome
- Peripheral Neuropathy (including tingling in your feet and legs)
- Type 1 Diabetes
- Autism
Please note several recent studies indicated celiac disease does not cause Autism, so I don’t want to accidentally create unsubstantiated hope for people trying to treat Autism with a gluten-free diet. However, many people believe significant anecdotal evidence suggests a correlation between Autism and some form of gluten intolerance, and also believe that a study will eventually find the connection (even if it is not yet clear). Some doctors also still prescribe a gluten-free diet for some children with Autism. This is a bit controversial and still being debated, but I thought I should at least mention it.
For more on children with celiac disease and the challenges they face, read Gluten Intolerance In Children. You can also learn to appreciate the confusion of the different terminology used by reading my article on gluten allergy symptoms in children. And for my essay that narrows down the focus to just the symptoms most likely to occur in children, read my comprehensive guide: Celiac Disease Symptoms In Children.
Symptoms of Celiac Disease In Adults
- Anemia
- Arthritis
- Back pain
- Bone density loss
- Borborygmi (stomach rumbling)
- Depression and irritability
- Fatigue
- Infertility (see Celiac Disease and Infertility)
- Joint pain
- Low Ferritin Levels
- Nausea
- Seizures
- Numbness in the patient’s hands and feet
- Dermatitis Herpetiformis
- Urticaria
For more discussion specific to the symptoms of celiac disease in adults, please see my article: Celiac Disease Symptoms in Adults.
Inclusive Celiac Disease Symptoms List:
- Abdominal pain
- Bloating
- Constipation, specifically Celiac Disease Constipation
- Diarrhea
- Weight loss
- Vomiting
- Delayed growth, stunted growth or Failure to Thrive
- Gluten Ataxia
- Sjogren’s Disease
- Low Ferritin
- Juvenile Idiopathic Arthritis
- Turner Syndrome
- Peripheral Neuropathy
- Type 1 Diabetes
- Autism
- Anemia
- Arthritis
- Bone loss
- Bone pain
- Depression, irritability or Celiac Depression
- Fatigue
- Infertility
- Joint pain
- Mouth sores or mouth ulcers
- Seizures, Epilepsy
- Numbness or tingling in the patient’s hands and feet
- Stomach pain
- Gas
- Foul smelling or bloody stools
- Hypoglycemia
- Hair loss (Alopecia)
- Lactose intolerance
- Teeth and gum problems
- Vitamin and Mineral deficiencies
- Dermatitis Herpetiformis (a skin rash)
- Osteoporosis
- Steatorrhea (high fat or lipids within the stool or feces); often causes floating stools
- Urticaria
In addition, it may be critical to mention that often times we may experience silent celiac disease symptoms, which make the disease all the more insidious and troublesome, especially among otherwise healthy adults. Latent celiac disease symptoms may make diagnosis difficult as well. A latent celiac disease symptom is a delayed symptom that may seem to come and go while not occurring consistently, making it difficult to define as a celiac symptom rather than a symptom of an altogether unrelated condition.
Causes
There still is not a definitive and 100 percent cause of celiac disease. It is believed that the disease is genetic in nature. Research is still being done to understand this disease. Fundamentally you could best boil it down to a genetic vulnerability somehow being exploited by a trigger. Some might think the trigger is gluten, but in fact, some people with the celiac disease gene can eat gluten without difficulty for decades without celiac disease manifesting itself. Something is triggering the transition from genetic vulnerability to disease manifestation.
The nearest theory at this point seems to indicate a possible relation to a change in the bacteria of your gut. For that reason, more and more people are recommending probiotics to help treat celiac disease. Additionally, some evidence suggests a correlation between vitamin D deficiency and celiac disease. Still more anecdotal evidence suggests environmental issues could trigger problems, which is one reason many celiac specialists recommend not only strictly adhering to a gluten-free diet, but also strictly adhering to a diet containing all natural and organic foods.
Another recent and promising development indicates that many people with autoimmune diseases (including celiac disease, diabetes and rheumatoid arthritis) often have a leaky gut (or permeable intestinal wall), which means food components pass more easily across the intestinal wall into your bloodstream. While there is still much research to be done on this matter, this discovery could help pinpoint autoimmune disease causes and treatments in the future.
Diagnosis
A blood test can help determine if the special antibodies (AGA, EMA and Anti-tTG) are present in your blood. If the test comes back positive an intestinal biopsy is done to test a piece of your small intestine. A biopsy is then done after several months of being diagnosed with the disease to see how you are responding to treatment. Additionally a genetic test (to look for the HLA-DQ8 or HLA-DQ2 genes) can be done to see if you are considered at risk for the disease. Usually these tests are combined to pinpoint celiac disease as the culprit and not another similarly manifesting condition such as Crohn’s disease or Ulcerative Colitis.
Celiac disease is still misdiagnosed most of the time because the symptoms resemble many other diseases. In particular, if you’ve ever been diagnosed with irritable bowel syndrome (IBS) or lactose intolerance, I suggest you discuss your situation and the possibility of celiac disease with your doctor. These are two of the most common misdiagnoses made related to celiac disease symptoms, and gluten intolerance statistics strongly indicate that a majority of celiac disease sufferers have not been diagnosed and thus are not being treated.
To read more on diagnosing celiac disease, please read gluten intolerance test.
Treatment
The one proven way to manage celiac disease is to eliminate all gluten from your life. Many of the foods that contain this complex protein composite are grains, particularly grassy grains like rye, barley, spelt and wheat, and other high carbohydrate foods. But unfortunately, gluten may also hide away in unexpected places, like as a filler or binder for pills and supplements and a texturizer for sauces (like barbecue sauces) and other foods. Thus adapting to a gluten-free diet means you must do more than just avoid wheat products.
However, please don’t despair. You will find plenty of other tasty foods you can still eat and easily maintain a healthy balance and lifestyle. More and more manufacturers support a gluten-free lifestyle with increased quantity and quality of gluten-free foods and you will find more online and offline resources to assist you on your way today than ever before. You will find the path to healing your CD significantly more smooth and accessible now than it was just a few years ago.
Many people have found that their symptoms improve within a couple of weeks of changing their diet, but for some who have gone undiagnosed for a long time it may take much longer to recuperate. But let me be clear: a disciplined and completely gluten-free diet is a must. Don’t make the mistake of thinking you can just reduce gluten or occasionally cheat by sneaking in an occasional gluten-containing food. You must commit to a totally gluten-free diet.
I have several pages which may help you adapt to your new gluten-free diet. Please see my gluten-free pantry for a comprehensive guide to replacing this pesky protein composite in your everyday meal choices.
As I mentioned earlier, I recommend both probiotics (especially Lactobacillus rhamnosus, Lactobacillus acidophilus and Lactobacillus reuteri) and a vitamin D supplement to aid your body in repairing your intestine and get back to health.
I also recommend you take a comprehensive gluten-free vitamin and mineral supplement along with gluten-free enzymes because you have probably been suffering from malnutrition and you need to recuperate from your insufficient intake of vital nutrients. Some evidence suggests L-Glutamine may help heal the small intestine just as it helps repair muscles.
Additionally, you may need to supplement your diet with a lactase supplement as people with recently diagnosed celiac disease or gluten intolerance are often also lactose intolerant. Make sure it is a gluten-free enzyme supplement. As your gut heals with a strict and healthy gluten-free diet, it is likely it will produce lactase on its own again. Again, make sure all of them are gluten-free supplements. This may require contacting the manufacturer as labeling isn’t always explicit.
Most importantly, however, I urge you to consult both your doctor and a nutritionist as you approach this endeavor.
Refractory Celiac Sprue Disease
In some rare cases, people don’t seem to heal despite a gluten-free diet. In cases where a patient reaches a year of remaining strictly gluten-free, the patient will be diagnosed as having refractory celiac disease. I am researching and writing a new article to cover the delicate topic of refractory celiac disease symptoms. Refractory celiac disease is a serious condition which often requires serious medications such as orticosteroids (like prednisone) and immuno-suppressive drugs (like azathioprine). Many researchers are beginning to refer to refractory celiac disease as a malignant condition, or even a cancer. Read my lesson on cancer and celiac disease.
Patients with Type I Refractory Celiac Disease (RCD) will have a normal T-cell population along the lining of their intestines while Patients with Type II Refractory Celiac Disease will have an abnormal T-cell population. The distinction is further clarified depending on a patient’s response to azathioprine or steroids, with Type II celiac disease sufferers not responding well. This is a very serious condition as people with Type II Refractory Celiac Disease have a high chance of developing Enteropathy-associated T-cell Lymphoma (EATL), a serious malignant cancer.
Before you panic, however, please note that people who don’t respond to a gluten-free diet are usually suffering from another undiagnosed condition and not type II refractory celiac disease. These conditions could include ulcerative colitis, microscopic colitis, Crohn’s disease, fructose intolerance, lactose intolerance or small intestine bacterial overgrowth (also known as small bowel bacterial overgrowth syndrome). However, if after six to ten months of being strictly gluten-free you are not getting better, I suggest you consult a doctor and a nutritionist to improve your prognosis or help you isolate the reason you’re not getting better.
Recently, promising research conducted in The Netherlands suggested that cladribine therapy (2-chlorodeoxyadenosine or 2-CdA) may be an effective treatment for type II refractory celiac disease.
Please note that a gluten-free diet is not a fad diet or a way to lose weight. I can’t believe I’m seeing some people treat it as such. While there are some rare situations where a relationship between gluten intolerance and weight gain exists, a gluten-free lifestyle is not a hot weight loss solution but a necessary prescription for people suffering from gluten intolerance symptoms.
Even though the medical community has come a long way in dealing with celiac disease, research must still continue to better understand what triggers celiac disease symptoms and how to better treat them. CD is a very difficult and troubling condition but I hope my writings help as many people as possible. Thanks for visiting Gluten Intolerance School. I sincerely hope you found this specific guide helpful.