Celiac disease can be mysterious in so many ways. It is often difficult to diagnose, has a variety of possible initial symptoms and it can lead to many health consequences.
The good news is that once you know you have the disease, the treatment is simple (although not always easy).
All you have to do is change your diet.
- What is Celiac Disease?
- Celiac Disease Symptoms
- What Causes Celiac Disease?
- How Common is Celiac Disease?
- Celiac Disease Diagnosis
- Is Celiac Disease Genetic
- Celiac Disease Treatment
People with celiac disease have a digestive disorder caused by damage to their intestines that occurs when they eat gluten.
Gluten is a protein found in wheat and other grains. Celiac disease can be thought of as an allergy to gluten.
You may also hear it referred to as 'celiac sprue' or 'gluten-sensitive enteropathy'.
Symptoms experienced by people with celiac disease can be varied. This has led to the creation of different groups within the diagnosis of celiac disease (1).
These classifications include classic celiac disease, atypical celiac disease, asymptomatic or silent celiac disease, and latent celiac disease. Some people who test negative for celiac disease but still feel badly when the eat gluten are said to have gluten intolerance.
It makes sense that the symptoms people with celiac disease suffer from are primarily related to the intestines, as it is the main organ affected by the allergy.
Many celiac disease symptoms are caused by the intestines impaired ability to absorb vitamins and other nutrients.
- Stunted growth (children)
- Diarrhea filled with fat (called steatorrhea)
- Weight loss
- Weaker bones (osteopenia)
- Abdominal Pain
- Low blood counts of hemoglobin (anemia)
Some people with celiac disease (10-15%) also have a terrible itchy rash, a condition called dermatitis herpetiformis.
In classic celiac disease people typically have these signs of nutrient deficiencies, weight loss, and damage to their intestine. Their symptoms resolve with removing gluten from their diet.
But not everyone falls into this textbook definition.
Atypical celiac disease includes those that often only have minor symptoms that can be nonspecific.
For example, unexplained anemia (low blood counts) may be due to atypical celiac disease, even though the person may be of normal weight without any other symptoms. These individuals may also have mild symptoms that occur at different times and range in how severe they are.
In silent celiac disease, people don’t have symptoms - or at least they don’t seem to be aware of them. Yet they still have similar intestine damage that resolves when removing gluten from their diet. These individuals are often diagnosed when doctors working them up for unrelated problems unexpectedly find patterns consistent with the disease.
Latent celiac disease may provide some hope for people who just love gluten. One study found that as many as 20% of children diagnosed with celiac disease were later able to reintegrate gluten back into their diet without any problems (2)!
Unfortunately, this may be more rare than this one study suggested as the majority of people continue to suffer from this allergy throughout their entire lives. Regardless, it may be worth discussing with your doctor the possibility of giving gluten another try at some point if your heart is set on all of the grains.
Celiac disease is caused by an autoimmune condition that is triggered by eating gluten.
But what does this mean?
The immune system can be thought of as your body’s military that among other roles helps to fight off infections. And this defense system is usually a good thing!
While the immune system normally works to protect the body, it can cause damage in autoimmune conditions. Examples of other autoimmune disease include type 1 diabetes and lupus. In celiac disease, gluten causes the immune system to attack the intestines.
The intestine is in charge of taking nutrients out of the food we eat into the rest of our body. Specifically there are many parts within the small intestine called ‘villi’ that help these nutrients to be absorbed.
When these villi and other parts of the intestine are damaged, it becomes harder and harder for them to absorb nutrients. This places people with celiac disease at risk of developing various nutrient deficiencies. It can also cause abdominal pain and the other disease symptoms.
The exact prevalence is not known and varies in different regions between 0.7% and 2% .
Celiac disease affects about 1% of the population.
This variability can be largely blamed on the fact that diagnosing the disorder can be both challenging and involve invasive procedures. This means that it can be difficult to tell exactly how many people are affected in very large populations and it may be under-diagnosed in some regions (3, 4).
It's important to know that you need to be actively eating gluten for doctors to accurately diagnose an allergy to it. Diagnosing celiac disease can be tricky and can involve a variety of tests - some of which are invasive.
Many people start with a blood test. If the suspicion for celiac disease is still high, doctors may take a piece of your intestine called a bowel biopsy. Most of the time this enough to diagnose celiac disease.
Parts of the immune system called antibodies can help with diagnosing autoimmune disorders. The most frequent blood test used looks for something called IgA antibodies.
Unfortunately this test isn’t always perfect. So if celiac disease is still suspected despite a negative test, there are other parts of the immune system that can be tested. While these blood tests are often positive in people with celiac disease, they can also still be negative, especially if you've been following a strict gluten-free diet.
If celiac disease is strongly suspected and blood tests are negative, people are sometimes asked to start eating gluten again for a period of time and then have these tests repeated.
The other common diagnostic tool is a small bowel biopsy. This involves a doctor using a small camera to look down your throat into your small intestines and take a piece for further investigation. Some of the things they look for in this sample are IgA deposits.
Small intestine villi are classically destroyed in the disease. A video capsule can be used to look closer at parts of the intestine that are too far for a traditional camera to reach. And yes, this is exactly how it sounds. A tiny video camera is swallowed and as it passes through your body it shows your doctor what your intestines look like.
Unfortunately, it is also possible for damaged intestines to look like they’re caused by celiac disease but the destruction may instead be due to other conditions such as Crohns disease, malnutrition, and a variety of other autoimmune diseases.
This is why it can be so important for doctors to have many different pieces of information in order to solve this puzzle.
Celiac disease can run in families. And another way to test for celiac disease is to look at your DNA. In confusing cases, the answer may lie in our genes.
Bottom line: the diagnosis is complex. A combination of blood tests, small bowel biopsy, symptom presentation, and genetic testing may all be utilized to determine whether or not a person has celiac disease.
Some people still feel like they are allergic to gluten even when all of these tests are negative. This condition is often referred to as gluten intolerance
Once the diagnosis is made the treatment sounds simple: just change your diet.
While long term damage can be present in severe cases, symptoms often resolve within a few months with the right diet modifications.
However, despite the flood of gluten-free food marketing, it can still be difficult to make sure you’re going without gluten while getting all the nutrients you need.
Read this article to learn how to eat gluten-free.