For every diagnosed case of celiac disease, there are 7-10 cases of silent celiac disease that go undiagnosed. (1) Could fatigue be one of the hidden signs of celiac disease?
Diagnosing celiac disease based solely on symptoms is notoriously challenging. Symptoms often come on gradually and have a tendency to ebb and flow. More importantly, the hallmark symptoms of celiac disease may not be what you think. Yes, fatigue could be your only symptom. Celiac disease does not only affect your gut.
Celiac disease is an illness that causes damage to the digestive tract, right?
The small intestine is where celiac disease exerts most of its damage. But the symptoms may have nothing to do with digestion at all! The symptom picture of celiac disease is far greater reaching than researchers originally thought.
What is celiac disease?
Celiac disease is a chronic intestinal disease caused by an intolerance to gluten. It is characterized by your own immune system attacking the villi of your intestines. Celiac disease is associated with maldigestion and malabsorption of many vitamins and nutrients. (2)
Gluten is the primary culprit for those with celiac disease. The immune system in one with celiac disease treats gluten as a foreign invader and inflames the villi of the small intestine in order to protect the body from the perceived threat.
The intestinal villi are small, finger-like projections that protrude from the walls of your intestine into the lumen. Intestinal villi add a great deal of surface area to your digestive tract. The added surface area increases your body’s ability to digest and absorb nutrients from our food. In celiac disease, these villi become inflamed and eventually flattened. This decrease in surface area is what causes the malabsorption and malnutrition commonly found in celiac disease.
Where did celiac disease come from?
The first clear description of celiac disease was given by Samuel Gee in 1888. (3) Though, it is thought to have originally been detailed by Aretaeus of Cappadocia in the second century. The doctoral thesis of Wim Dicke in 1950 established that exclusion of wheat, rye, and oats from the diet led to dramatic improvement in symptoms. The link between the gluten protein and celiac disease was made in 1952 by a team of scientists from Birmingham, England. (4)
Historically, celiac disease was thought of as a wasting disease. Wasting refers to the process by which a debilitating disease causes muscle and fat tissue to “waste” away. (5) The typical picture of celiac disease involved a child with diarrhea, malabsorption, failure to thrive, muscle wasting, and a distended belly. (6)
In 2004, The National Institutes of Health (NIH) re-classified celiac disease to include symptoms not historically associated with celiac disease. The NIH experts agreed that atypical celiac disease (no GI symptoms) was the most common form of celiac disease today and changed the terminology for the condition.
Did you catch that last part?
Celiac disease that has no symptoms related to the digestive tract is the most common form of the disease. Chronic joint pain, headaches, muscle aches, fatigue, and many other symptoms could actually be undiagnosed celiac disease.
Why does celiac disease develop?
At the time of this writing, there is not a clearly understood mechanism as to why celiac disease exists. Currently, we only have plausible theories. Though, none of them have been proven. Celiac disease is an incredibly complex disease process and its effect(s) on our body are still poorly understood.
Signs and symptoms of celiac disease
I’m going to divide this section into two parts. The first is classic celiac disease – this is the celiac disease you’re familiar with. The second- silent celiac disease – silent celiac disease has a wide-range of symptoms that you probably never associated with a glluten intolerance!
Classic Celiac Disease:
The symptoms of classic celiac disease are primarily located in the digestive tract. Typical symptoms of celiac disease include:
- Weight loss
- Acid reflux (heartburn)
Silent Celiac Disease:
Silent celiac disease includes a symptom picture that often has nothing to do with the digestive tract. Many of which are not associated with classic celiac disease. These include:
- Brain fog
- Dental enamel defects
- Itchy skin
- Neuropathy (altered nerve sensation)
- Migraines and/or chronic headaches
To further complicate the diagnostic picture, some patients with celiac disease are truly asymptomatic. Meaning that they present with no symptoms. None! Please note, that while symptoms may not be present, due to the flattening of intestinal villi, nutrients are not being absorbed. Over time, nutrient deficiencies will become more severe.
I always advocate that fatigue is not a normal feeling. It’s a sign that something is not functioning right in your body. It could be a simple as a lack of sleep. But if your fatigue continues unchecked for a long period of time, you should dig a little deeper. A celiac screen is a perfect place to start!
Yet another form of celiac disease
Are you starting to get an idea of how murky celiac disease can be?
To make matters even more unclear, allow me to introduce a condition known as latent celiac disease. Those with latent celiac disease will they have negative test results. Which then turn positive months or years later. (8, 9) Alternatively, this part of the population may have a negative biopsy but positive blood markers for celiac disease.
In latent celiac disease, it is commonly agreed upon that treatment with a gluten-free diet is not recommended. However, my clinical experience goes against this ruling. As the gluten protein is often a trigger for autoimmune disease through its effect on causing intestinal permeability or, leaky gut. Adherence to a gluten-free diet is likely to show improvements in tissue antibodies.
The connection between gluten and fatigue
Look how similar the symptom presentation of silent celiac disease and chronic fatigue syndrome are – fatigue, insomnia, brain fog, skin issues, and headaches. Sounds a lot like CFS doesn’t it?
Those with celiac disease report higher levels of fatigue. (12) And not just a little bit more fatigue – 20% reported an increase in fatigue! This could be due to a lack of absorption of vitamins and minerals caused by the flattening of their intestinal villi.
Another study found that those with chronic fatigue syndrome or myalgic encephalomyelitis were more likely to have non-celiac gluten sensitivity. (13) It is thought that the elevated levels of inflammation commonly seen in chronic fatigue syndrome and myalgic encephalomyelitis could be caused by an undiagnosed gluten sensitivity. (14)
If you’ve been diagnosed with chronic fatigue syndrome, you need to get screened for celiac disease!
How should celiac disease be diagnosed?
For the sake of simplicity, you are gluten intolerant if you react to gluten. Gluten intolerance encompasses both gluten allergies and sensitivities. Thus, all those with celiac disease are gluten intolerant. It is possible to be gluten intolerant but not have celiac disease.
Those with celiac disease often carry one of two specific genes – the HLA-DQ2 or the HLA-DQ8. These genetic markers help point towards celiac disease but they do not diagnose it. Nearly 30% of the population are carriers for these genes. Yet celiac disease occurs in only 1-3% of the population. (15)
Patients with these HLA genes are at increased risk of gluten proteins triggering an abnormal response from their immune system. This can result in the production of tTG autoantibodies and a chronic inflammation of the lining of the small intestine.
There is only one definitive means of diagnosing celiac disease. This is done through an intestinal biopsy. A positive blood test or genetic markers are not indicative of celiac disease. In a biopsy, a positive result occurs when flattened intestinal villi are found. Please keep in mind that a biopsy is often only performed if your blood test reveals a positive result. (16)
If you are experiencing unexplained fatigue, a good place to start is with genetic testing. If you find that you’re positive for the HLA genes, you have good reason to explore further gluten-related testing.
Should you get tested?
I stated at the beginning of this post: for every diagnosed case of celiac disease, there are 7-10 individuals who have celiac disease that continue on, undiagnosed. (17)
With this statistic in mind, a routine blood test to rule out celiac disease is a great idea. In fact, mass screenings for celiac disease is seeming like a great idea. (18) But before you go out requesting celiac screens from your doctor, please read the below to see if you’re at increased risk.
The following are factors that increase the risk for celiac disease: (19)
- Those with the above-listed symptoms of celiac disease.
- Both classic and silent cases are included.
- Remember, fatigue is often the first symptom to manifest!
- HLA-DQ-2 or HLA-DQ-8 genes.
- First-degree relatives of people with celiac disease.
- Parents, siblings, and children have a 1 in 10 risk compared to 1 in 100 in the general population. (20)
- Any individual with an autoimmune disorder.
If you have one or more of the above risk factors, it is worth talking to your doctor about ruling out celiac disease. If you’ve been suffering from unexplainable levels of fatigue, a celiac screen is worth ruling out. If you have other unexplained symptoms, a celiac screen should be performed. There is no downside to testing and there is a massive upside!
Now, I want to hear from you!
What symptoms did you have before being diagnosed with celiac disease?
Where you fatigued/exhausted before you learned you were sensitive/allergic to wheat?
Also published on Medium.