Could you belong to the 80% of Canadians with undiagnosed Celiac Disease?

Do you suffer from some form of debilitating “mystery” symptoms that you and your doctor just can’t determine why?

When most people think of celiac disease, they immediately think of the common digestive symptoms that manifest if gluten is consumed, including diarrhea, gas and bloating. But there are many other less common, or “atypical” signs and symptoms of the disease - some of which may surprise you. Could you be suffering from one of them?

In honour of May being Celiac Awareness Month, let’s dive right into the disease, test your knowledge of celiac, and examine symptoms during Part 1 of my series on celiac disease. Then be sure to return next week for part 2 of this series to learn how to live gluten-free healthfully.

Is it Celiac? Test Your Knowledge with this Quiz

That’s right, not everyone who has celiac exhibits the common stomach issues often associated with the disease. Instead, they may have one or many of the myriad of symptoms listed above. 

If this is the case, diagnosis and treatment can become much more difficult. Let’s take a look at each of these symptoms in more detail.

Mystery Symptoms of Celiac

Abdominal distension - This is usually caused by excessive gas and/or fluid in the intestine. It is one of the more common symptoms of celiac, and can occur for a variety of reasons. Most commonly, when food cannot be properly digested and absorbed, as a result of damaged villi in the small intestine, undigested food particles enter the large intestine where they ferment. This fermentation produces excess gas which expands or distends the bowel. Some people with celiac also exhibit an intolerance to lactose (milk sugar). This, too, enters the colon where bacteria ferment it and gas is produced. In addition, if the intestine is inflamed, normal gut motility may be impaired, which also results in distension and bloating.

Abdominal pain - The fundamental problems in celiac disease are inflammation and a damaged small intestinal mucosa. When food is eaten, the gut produces digestive enzymes and pushes the food through the intestine with regular contractions. If inflammation is present, these bowel contractions can cause pain. A distended stomach containing excess gas can further aggravate this pain.

Abnormal liver enzymes - Autoimmune hepatitis is another autoimmune disease where the liver is attacked by one’s own immune system. People with celiac have a greater risk of developing other autoimmune diseases, like autoimmune hepatitis, or other liver diseases like primary sclerosing cholangitis and primary biliary cirrhosis. The opposite is also true. People with autoimmune hepatitis or other autoimmune liver problems are at higher risk of developing celiac. In fact, it’s recommended that anyone with autoimmune hepatitis be screened for celiac.

Bone pain, fractures, or osteoporosis - In celiac, damage to the small intestine lining causes poor absorption of all nutrients including minerals like calcium and vitamins like vitamin D. Since calcium and vitamin D are necessary for the development of healthy bones, a lack of them can lead to osteoporosis (weak bones) and an increased risk of fractures. In fact, celiac disease is one of the causes of osteoporosis, creating chronic bone pain or frequent fractures. Since this can be present with or without any intestinal symptoms, diagnosis of celiac disease is often missed in these cases.

Chronic constipation - The exact cause of constipation in celiacs is not exactly clear. It’s thought that intestinal inflammation impairs normal bowel contractions which causes motility problems and constipation. Additionally, some people may just not be consuming enough food or fibre to form a normal amount of stool.

Chronic diarrhea - The lining, or mucosa, of the small intestine is responsible for nutrient absorption. When damaged, as a result of celiac disease, nutrients cannot be absorbed properly. Undigested food pulls water from the body into the intestine, which creates diarrhea or loose bowel movements. 

Chronic itchy skin rash - A chronic skin condition called Dermatitis Herpetifomis is considered "celiac disease of the skin.” It is a rash with intense itching and burning sensations, and often affects the knees, elbows, scalp, back of the neck and buttocks. About 10% of people with celiac present with this mystery rash.

Delayed puberty - Normal puberty requires adequate nutrition and growth. The malabsorption and nutrient deficiencies that come with celiac disease can lead to problems which can impair the normal hormones that are necessary for puberty.

Depression - Why celiacs often become depressed is not quite clear. However, living with chronic stomach pains, diarrhea and fatigue is enough to make anyone feel depressed. Additionally, gluten may have a direct toxic effect on the brain which can lead to depression. And people with celiac are at risk of developing other autoimmune disorders, some of which can also contribute to depression.

Epilepsy or seizures - It’s been suggested that people with celiac have a higher incidence of epilepsy, though the exact cause and effect relationship is not always clear. Both epilepsy and celiac are common disorders in the general population, so it’s possible some people have both by coincidence. In some people, a deficiency of folate, an important nutrient for brain function, may be responsible for seizures. Again, this deficiency may arise as a result of malabsorption. Additionally, a specific type of neurological problem has been described in certain kids who have celiac disease, seizures, and areas of abnormal calcium deposits in the brain.

Fatigue - In celiac disease, fatigue may have several causes. Weight loss can cause both weakness and fatigue. Anemia due to iron, folate or vitamin B12 deficiency may also lead to fatigue. People with celiac are also at risk for contracting other autoimmune disorders like hypothyroidism - in which fatigue is a common symptom. Additionally, intestinal inflammation leads to the release of several chemical mediators that can affect energy levels and lead to feelings of having a bad flu, but on a chronic basis.

Infertility - The exact cause of higher infertility rates in celiacs is unclear. But two schools of thought exist to explain why this may be. One is that a damaged small intestine creates deficiencies in the nutrients vital for reproductive health, including folic acid, zinc and selenium. But if levels of these nutrients are normal, it’s thought that other factors must be at work. In a woman with celiac and a low BMI, levels of important fertility hormones may be altered. The good news is that women who have been diagnosed with celiac and who follow a gluten-free diet, do not seem to have a higher risk of infertility. If a woman has had spontaneous miscarriages or has repeatedly given birth to pre-term babies, it’s suggested she be screened for celiac.

Irritability - Irritability is a symptom of celiac usually seen in infants and young children. It can happen when young kids experience stomach pain and cannot articulate their feelings. Gluten also negatively affects the gut microbiome, which hampers the gut-brain axis and can lead to irritability. This symptom typically improves fairly quickly after starting a gluten-free diet.

Muscle wasting - Protein is an important nutrient in our diet which has several important functions. Since the body can't effectively store protein anywhere other than our muscles, when there is a deficiency from either poor intake or malabsorption, the proteins in muscles are broken down to provide protein to other vital organs. Eventually, this results in muscle wasting.

Numbness in arms and legs (peripheral neuropathy) - Peripheral neuropathy is another manifestation of celiac. “Neuropathy” means inflammation of body nerves. Surprisingly, this is one the most common non-digestive symptoms of celiac. It can include a burning, tingling and numbness in the hands or feet, the loss of feeling in the hands or feet, or a numbness, tingling or reduced sensation in the face or body. Again, it’s speculated that the nutrients important for proper nerve function, like folate, vitamin B12, and vitamin E, are deficient due to the damaged small intestine. However, in some cases, the neuropathy has an autoimmune basis.

Oral canker sores - The ravages of celiac disease spares no part of the human body - including the mouth. Recurrent mouth canker sores is another manifestation of celiac. In some people, this may be the only symptom of the disease. Sometimes, it’s due to an autoimmune phenomenon. Regardless, the canker sores often improve once a gluten-free diet has been adopted.

Point pain or swelling - When someone with celiac consumes gluten, the immune system reacts and inflammation results. This inflammatory reaction can occur anywhere in the body causing pain and/or swelling - including the joints.

Poor appetite - Chronic stomach pain and bloating can lead to a poor appetite. Because eating food causes pain, people with celiac often hold back on eating. Intestinal inflammation also leads to the release of several chemical mediators, some of which affect the appetite centres in the brain.

Poor growth in children - In order for children to grow appropriately, not only do they need enough nutrients, but they also need to absorb these nutrients properly. With celiac disease, this process is impaired due to a poor appetite and malabsorption of nutrients, resulting in delayed growth.

Recurrent vomiting - Often seen in infants and young children, when the first part of the small intestine is inflamed, it cannot work as it should. The normal contractions of the duodenum are impaired so food cannot be propelled down the intestine normally. Instead, it comes back into the stomach and causes vomiting.

Short stature - It’s possible that a short stature may be the only presenting clinical feature of celiac disease. In fact, celiac is a far more common cause of short stature than a deficiency of growth hormone or any other organic issue. Though it’s not clear why, it stands to reason that a slowed growth rate may be due to malnutrition and the malabsorption of nutrients required for growth. Other thoughts are that celiac causes changes in the insulin-like growth factor-1 system. The good news is that after starting a gluten-free diet, these mechanisms can revert back to normal.

Unexplained iron or folate deficiency anemia - It should be no surprise now that malabsorption of nutrients is common in celiacs. This extends to iron and folate. In fact, iron deficiency anemia is the most common form of anemia seen in celiacs and is currently one of the most common presentations of celiac disease in adults. Why? Iron is absorbed through the first part of the small intestine - the same part that is heavily damaged from ingesting gluten. Sadly, the diagnosis of celiac in these cases is often missed because anemia often gets blamed on a diet low in iron, bleeding in the bowel, or blood losses during heavy menstruation. Because the patient might not have any other symptoms, a celiac diagnosis is often delayed or not even considered. Though iron deficiency anemia is the most common, anemia from a deficiency of folate or vitamin B12 can also occur. 

Unsteady gait (ataxia) - Gluten ataxia is yet another gluten-related disorder. It refers to poor coordination of movements or an unsteady gait and is an immune-mediated disease seen in genetically susceptible people when gluten is consumed. It causes damage to the cerebellum, the part of the brain that controls the coordination and movement of muscles. Switching to a gluten free diet often improves ataxia and prevents its progression. People with gluten ataxia may or may not also suffer from celiac.

Weight loss - We need to have a normal appetite, adequate food intake and proper absorption of nutrients to maintain or gain weight. An inability to absorb nutrients due to intestinal inflammation in celiac can lead to diarrhea and weight loss.

Now that you are better informed about the the signs and symptoms of celiac disease - some of which may have surprised you - if you happen to suffer from any of these symptoms, you may want to explore celiac disease as a possible cause. Talk to your doctor about appropriate blood testing as a first step. [quote]

Even if results come back negative, you may want to attempt a gluten-free diet to see if your symptoms improve. 

Of course, if you need nutritional advice or meal planning support, contact me. I’d be happy to help! 

Celiac is an autoimmune disorder

As discussed, celiac is an autoimmune disorder triggered by gluten. This means that when its ingested, a cascade of events begins. Undigested food proteins escape into the bloodstream and your own immune system can no longer distinguish between foreign invaders and your body’s own tissue. The immune system ends up attacking healthy body tissue, resulting in a variety of symptoms - as is evident from the symptoms explained above.

To discover more, please refer to my previous blog post. And be sure to return next week to learn how to live gluten-free healthfully.

As always, I welcome your thoughts and value your feedback. Let me know what you think by dropping me a line or commenting below.

If you haven’t already done so, please sign up to receive my newsletters for more information about brain health, neuronutrition, lifestyle tips, and nutritional advice. Of course, if I can help you or a loved one who may be suffering from celiac disease or any of the mystery symptoms associate with it, make an appointment to see me today!