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, most wonder why it happened to them, and could it have been prevented. This post contains affiliate links. Please read my disclaimers and disclosures.
I remember it like yesterday when my doctor called me to tell me, “You have celiac disease.”
Those four words, turned my entire world upside-down. I’ve had to change my diet, lifestyle, relationship with food and so much more. It truly is a life-changing disorder. I wrote about my journey to break up with gluten in my book, Dear Gluten, It’s Not Me, It’s You.
Over the years, I’ve had time to reflect on what may have caused celiac disease, a rare autoimmune disease where the body attacks itself after eating gluten, to happen in my body and understand if there was something I could have done to prevent the disease from happening in the first place.
Currently, there is no cure for celiac disease, and the treatment options, while promising, are currently non-existent beyond the gluten-free diet.
In this article, I will discuss what causes celiac disease, and whether or not it can be prevented.
What Causes Celiac Disease
What we know about celiac disease is that it has a genetic component, and that 99 percent of people with celiac disease carry one of two genes, HLA-DQ2 or DQ8, according to Dr. Alessio Fasano in his book, Gluten Freedom.
Ninety-five percent of people with celiac disease have the HLA-DQ2 gene, the most popular “celiac” gene, while only five percent carry HLA-DQ8 according to this article in the New York Times. We know that someone who carries the gene can suggest someone might have celiac disease, but it does not diagnose celiac disease.
Interestingly, 35-40 percent of the American population carries one of the celiac genes, yet only 2-3 percent of people with the genes will ever get the autoimmune disease. Why is it that only a fraction of celiac disease gene carriers go on to get diagnosed with celiac disease while the vast majority do not?
This is the magic question that doctors are trying to understand in their quest to understand what causes celiac disease.
In The Autoimmune Fix by Dr. Tom O’Bryan (a book I highly recommend – read my book review here), Dr. O’Bryan says that celiac disease is one of the most researched autoimmune diseases in the world and there are many lessons we can learn about other autoimmune conditions from celiac disease.
He 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, three factors must be present in order for someone to get celiac:
- Genes
- Gluten/Trigger
- Intestinal Permeability (aka, leaky gut)
Let’s break down the three factors that lead to celiac disease.
Factor #1: Genetics
You cannot control your genes. You are born with the genes for celiac disease – either HLA-DQ2 or DQ8 – which you inherited from one or both of your parents. Chances are if you have the genes, so do your siblings and other first and second degree relatives as celiac disease tends to run in families.
To check if you have one of the celiac genes, you can talk to your doctor about undergoing genetic testing, or you can test yourself via an at-home genetic test. Be sure to work with a health professional to help you interpret the results.
While having HLA-DQ2 or DQ8 means you have a genetic predisposition to celiac disease, it does not mean you have or will eventually have celiac disease.
In fact, your genes are controlled by other factors, such as environmental triggers and toxins, that affect how your genes express themselves. In fact, genes rarely determine the full scope of your health and are not, simply put, your destiny. The cumulative effect of what you eat and the lifestyle you lead will ultimately determine the expression of your genes.
Bottom line, your genes don’t predict disease; rather they identify the weak links in your genetic chain where disease may develop.
Factor #2: Gluten
You must be consuming gluten, a protein found in wheat, rye, barley, and sometimes oats, in order to get celiac disease. In fact, celiac disease is the only autoimmune disease in the world with an identified trigger (gluten).
Dr. O’Bryan says that a variety of offending triggers can turn on autoimmune diseases, including celiac disease, in your body.
For example, exposure to unwanted foods (sugar, highly processed foods, etc.), molds, pesticides, preservatives, additives, and other environmental pollutants will influence how your genes express themselves.
Factor #3: Intestinal Permeability
When looking at what causes celiac disease, many researchers say you have to look inside your gut.
Your small intestine is responsible for breaking down the food you eat into molecules that will either continue through the digestive track to become either eliminated from your body or will pass through the thin lining of the intestinal walls and become absorbed by the bloodstream and fuel all the cells in your body.
The lining of your small intestine is delicate and paper thin. This is by design so that only small molecules of properly digested food get through the paper-thin lining, enter your bloodstream, and eventually deliver much-needed nutrients throughout your body.
However, when you consume foods that your body can’t properly break down (like gluten) or that your body cannot tolerate, macromolecules break through the delicate intestinal walls and enter your bloodstream. This is a sign of a leaky gut.
Your body doesn’t know what to do with these large molecules so it makes antibodies to fight them. When that happens, you suddenly have elevated antibodies to a particular food or many foods. (This is why some food sensitivity tests come back with dozens of foods – your body is making antibodies to all these foods “leaking” into your bloodstream. You may not be sensitive to all those foods, you may just have a leaky gut.)
For people genetically predisposed to celiac disease, a constant drip of gluten will cause the body to mistakenly go into defense mode, and will prompt the body to launch an autoimmune attack on the small intestine, damaging it further and wreaking havoc throughout the body.
Your small intestine is an essential organ delivering nutrients throughout your body. An attack on the organ means your body won’t be properly nourished, and that’s when things start to go awry.
Intestinal permeability can happen at any time and can be triggered by food sensitivities, trauma, stress, environmental toxins, viruses and other external factors.
Can Celiac be Prevented?
Now that I’ve discussed what causes celiac disease (genetic predisposition, gluten, and intestinal permeability), I want to shift this discussion from what causes celiac disease to whether or not celiac disease can be prevented, particularly in high-risk, genetically-predispositioned children.
Unfortunately, you cannot control your genes, so if you carry one of the genes for celiac disease, you may one day have the disorder. However, simply carrying a gene does not mean you will eventually get celiac disease, it just predisposes you to the disease.
If you carry the gene, perhaps you can eat less gluten to prevent your body from overreacting to the protein like these researchers tested. Or maybe you would avoid gluten altogether (although many healthcare professional do not recommend avoiding gluten if you don’t have celiac disease or gluten sensitivity). Remember, you must be eating gluten in order for the celiac genes to turn on.
Additionally, if you have one of the celiac disease genes, it’s important to keep your gut healthy. Changes in your gut health can adversely affect gene expression.
Focus on eating a diet rich in anti-inflammatory foods and naturally gluten-free foods, taking gut-boosting supplements like probiotics, avoiding antibiotics unless absolutely necessary, and living a clean, stress-free life. Such behaviors may deter your genes from turning on.
However, no diet is foolproof, and many environmental toxins and triggers that exist in our everyday society are out of our control.
Plus, this research suggests that gut microbes have a strong impact, even from a very young age, in whether or not someone will eventually get celiac disease. 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. Dr. Fasano tells the New York Times that this finding might suggest that if you keep the lactobacilli levels in the gut high in these at-risk children, you might be able to prevent autoimmunity. More research is required, to confirm this initial finding, but it does show the promising potential of probiotics in deterring autoimmunity.
Although it’s difficult to prevent celiac disease and to fully control how our genes express themselves, if you do get celiac disease, the good news is you can put your symptoms into remission by eating a strict gluten-free diet, and by working towards healing your damaged gut. I write about how I healed my broken body in this article.
The Bottom Line
There are no simple answer to what causes celiac disease and understanding whether or not it can be prevented.
What we do know, however, is that three factors need to exist in order for celiac disease to develop, and researchers are trying to understand how those factors impact – or deter – the onset of celiac disease.
The research continues to roll in, and I suspect we’ll know more about what causes celiac disease in the coming years, at least, that is the hope. Fingers crossed.
Additional Reading
If you enjoyed this article, you might also enjoy:
We are having our 4 year-old tested for celiac disease later this week. If he does have it, this article shed light on how it could have developed. He had an ear infection every other month as a baby, which included the time period he started eating bread. Antibiotics would have had a great effect on his gut microbiome thus allowing the trifecta to occur for him.
Thank you so much for the feedback!
That is a great point Jim. Our thoughts control much of how our genes express themselves. Thank you for adding that idea to the mix!
Great work, Jenny. Well said and clear. My work is in the world we tend to label as “thinking and imagination” that addresses the possibility to turn genes on and off by certain levels of thinking – epegenetics and how we do that. Epignetics needs real researchers as well.
Great article! Lots of good book recommendations too 🙂
Babies can be affected by what you eat while breastfeeding. This is true for what you drink (alcohol is full of gluten) and what you eat. True celiacs can be effected my the very smallest trace amounts of gluten some even to the extent of food cooked in the same kitchen as gluten products from the small molecules of gluten on dishes or when flour gets into the air.
I couldn’t agree more!
Interesting thoughts. My son started showing signs of having issues at 9 months (he had only been eating solid foods for 2.5 months when the problems started). By 18 months we had a Celiac diagnosis. I have always struggled with what his trigger would have been. And his gut should have been perfectly healthy given that he had nothing but brrastmilk and fruits and vegetables at the time his problems started. I will be glad for more research so we can better understand how this came to be in his life.