Celiac disease is a life-changing disorder that requires strict adherence to a life-long and restrictive gluten-free diet. For the millions of people affected by celiac disease, many are curious about what causes celiac disease and wonder if it could have been prevented. This post contains affiliate links. Please read my disclaimers and disclosures.
Getting diagnosed with celiac disease can turn a person’s life upside-down. This is because the only treatment for celiac disease is a lifelong adherence to a strict gluten-free diet. Gluten is a protein found in wheat, rye, barley and sometimes oats, and it’s hidden in many foods.
In fact, figuring out what foods are safe – and not safe – to eat is a constant struggle for those with celiac disease and other gluten disorders, making the emotional burden of the gluten-free diet high.
Celiac disease is a rare autoimmune disease where the body mistakenly attacks the healthy tissue surrounding the small intestine every time a person eats gluten. Currently, there is no cure for celiac disease, and the treatment options, while promising, are non-existent beyond the gluten-free diet.
What Causes Celiac Disease?
Ninety-five percent of people with celiac disease have the HLA-DQ2 gene, the more popular “celiac” gene, while only five percent carry HLA-DQ8 according to this article.
However, 35-40 percent of the American population carry one of the celiac genes, but only 2-3 percent of people with the genes ever go on to get diagnosed with celiac. This means only a small fraction of celiac gene carriers actually get celiac disease. Why?
In The Autoimmune Fix by Dr. Tom O’Bryan (read my book review here), Dr. O’Bryan says that while your genes make you vulnerable to the disease, your genes do not dictate whether or not you’ll eventually get the disease.
In fact, he and other experts say that three factors must be present in order for someone to get diagnosed with celiac disease:
Factor #1: Genetics
In order to get celiac disease, a person must carry one of the two known celiac genes – HLA-DQ2 or DQ8. A person inherits these genes from one or both of their parents, which means celiac disease often runs in families, with first-degree relatives (siblings, parents, children) being at the highest risk.
While having HLA-DQ2 or DQ8 means a person has a genetic predisposition to celiac disease, it does not mean the person has or will eventually have celiac disease.
In fact, genes are controlled by other factors, such as environmental triggers and toxins, that affect how the genes become expressed. Genes rarely determine the full scope of a person’s health and are not, simply put, a person’s destiny. The cumulative effect of what a person eats and the lifestyle they lead ultimately determines the expression of a person’s genes.
Bottom line, genes don’t predict disease; rather they can be used to identify the weak link in a person’s genetic chain, potentially indicating where disease may develop one day.
Factor #2: Gluten
A person must be consuming gluten in order to be diagnosed with celiac disease. Interestingly enough, celiac disease is the only autoimmune disease in the world that has a known trigger (gluten).
If a person is already on a strict gluten-free diet, a celiac disease blood test can no longer detect celiac disease in that person.
However, if that same person were to go back to eating gluten – or took what is known as the Gluten Challenge – a blood test would be able to detect celiac disease if the disease was present. In other words, a person must be eating gluten (the trigger food) in order for a celiac disease test to be accurate.
On a personal note, I was diagnosed with celiac disease many years ago via a simple blood test followed up with a biopsy. However, years later I took another celiac disease blood test and it came back negative for celiac disease. Does this mean I no longer have celiac disease? No. It simply means my disorder is in remission and should I go back to eating gluten, it would rear its ugly head again.
Remember, celiac disease is a lifelong affliction and a lifelong gluten-free diet is the only treatment option.
Factor #3: Intestinal Permeability
When looking at what causes celiac disease, many researchers say you have to look inside the small intestine or gut.
The small intestine is responsible for breaking down food into molecules that either get eliminated (waste) or get absorbed by the body and used as fuel to feed every organ and cell in the human body.
However, when a person consumes foods that are difficult to breakdown (i.e. gluten) or that the body cannot tolerate well, the macromolecules break through the delicate lining of the intestinal walls and enter the bloodstream. This is what leads to intestinal permeability or leaky gut.
The body doesn’t know what to do with these large, intrusive molecules so it produces antibodies to fight them. This is why when a food sensitivity test comes back with dozens of high reactivity foods, it doesn’t mean a person is intolerant to all these foods; it simply means a person is eating those foods, they’re leaking out of the gut and into the bloodstream, and as a result, the body is producing antibodies to those foods. A food sensitivity test with a lot of high reactivity foods simply means a person suffers from leaky gut.
For people genetically predisposed to celiac disease, a constant drip of gluten will eventually damage the intestinal wall and the celiac disease genes will turn on. When this happens, the body’s immune system mistakenly launches an autoimmune attack on the healthy tissue surrounding the small intestine, damaging it further and causing further dysfunction.
Can Celiac be Prevented?
Many people with celiac disease wonder if the disorder could have been prevented, particularly in high-risk, genetically-predispositioned children.
Unfortunately, no one can control their genes since they’re inherited at birth. However, simply carrying one of the celiac genes does not mean that person will get celiac disease, it just predisposes the person to the disorder.
For celiac gene carriers, the are a few ways to prevent the celiac disease genes from turning on.
First, someone can follow a low-gluten diet to prevent their body from overreacting to the protein like these researchers tested.
Someone could also avoid gluten altogether, although many healthcare professionals do not recommend avoiding gluten without a celiac disease or gluten sensitivity diagnosis.
Furthermore, if someone has one of the celiac disease genes, it’s always wise to maintain good gut health as changes in the gut can lead to intestinal permeability and adversely affect gene expression.
Anyone worried about getting celiac disease should eat a diet rich in anti-inflammatory foods and naturally gluten-free foods, take gut-boosting supplements and probiotics, avoid antibiotics unless absolutely necessary, and live a stress-free life as stress can adversely alter a person’s microbiome.
However, while such behaviors may deter your celiac genes from officially turning on, but no diet is foolproof, and many environmental toxins and triggers that exist in everyday society are out of any one person’s control.
Plus, research suggests that gut microbes have a strong impact, even from a very young age, in determining whether or not someone will eventually get diagnosed with celiac disease. This means some babies are born with microbiomes that are ripe for disease.
In fact, researchers followed 47 newborns considered at-risk for celiac disease. They regularly collected and analyzed microbes from 16 of them, and found that the genetically at-risk children had an “impoverished, unstable microbial community.”
Two of the children in that study went on to develop an autoimmune disease. One developed celiac disease, the other developed Type 1 diabetes. In both children, a decline in lactobacilli bacteria preceded disease onset. (Lactobacilli bacteria is found in most probiotics.)
Dr. Fasano tells the New York Times that this research suggests that keeping the lactobacilli levels in the gut high in at-risk children may be able to prevent autoimmunity. More research is needed to confirm this initial finding, but it does show the promising potential of probiotics in deterring autoimmunity.
The Bottom Line
There are no simple answers to what causes celiac disease and whether or not it can be prevented.
What researchers know, however, is that three factors can cause celiac disease, and there is only marginal research to support celiac disease prevention. Hopefully more research is on the way.
Enjoyed this article? Also read these article:
- Dear Gluten, It’s Not Me, It’s You (book)
- Celiac Disease in Babies
- Genetic Testing for Celiac Disease
- How to Get Tested for Celiac Disease
- 10 Signs and Symptoms of Celiac Disease
- 10 Facts Your Doctor Doesn’t Know about Celiac Disease
- 10 Signs of Celiac Disease in Kids
- The Emotional Burden of the Gluten-Free Diet