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I remember it like yesterday when my doctor called me to tell me, “You have celiac disease.” It was nearly six years ago, but who’s keeping track? 🙂
Those four words, “You have celiac disease,” turned my entire world upside-down. Since then, I left my day job and began educating people on celiac disease, gluten-free living, nutrition and how to achieve true health through diet.
I’ve taken a lot of time to reflect on what causes celiac disease and if there was something I could have done to prevent the disease from happening inside my body in the first place. I know a lot of people with celiac disease wonder the same thing. (There is no cure for celiac disease, and research funding is sparse for celiac disease).
Much of the information that is readily available talks about how celiac disease is a genetic disease that cannot be prevented. This isn’t quite right (more on that to come).
In fact, according to Dr. Alessio Fasano in his book, Gluten Freedom, 99 percent of people with celiac disease carry one of two genes, HLA-DQ2 or DQ8. (Dr. Fasano says that these markers are NOT always present with someone with a wheat allergy or gluten sensitivity.)
According to a presentation I attended given by Dr. Edward Liu of the Colorado Center for Celiac Disease, 92 percent of people with celiac disease have the HLA-DQ2 gene and only eight percent have the DQ8. (Of note… Dr. Liu says 40 percent of the population has DQ2 or DQ8!)
Now that we know there are genetic markers that predisposition someone to celiac disease, why is it that someone can still have those genes, or genetic markers, and still not have celiac disease? In fact, more than 95 percent of people who carry the celiac genes can eat gluten and are just fine.
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 a lot of lessons we can learn about autoimmune conditions from celiac disease.
Dr. O’Bryan says that while your genes only make you vulnerable to the disease, your genes DO NOT dictate whether or not you’ll get the disease. In fact, two other factors must be present, in addition to having these genes, in order to get a full-blown celiac disease diagnosis. He says you need a “trigger,” which is gluten found in wheat, rye and barley, and a “last straw,” which is intestinal permeability (aka, leaky gut).
Given this information, you can better understand the three factors that can lead to celiac disease:
- You likely have a genetic predisposition to the disease (you can partially blame it on your “bad” genes).
- You eat gluten – the trigger food. And if you’re gluten-free, you know gluten is everywhere and difficult to fully avoid. (Interesting to note, celiac disease is the only autoimmune disease with an identified trigger (gluten) according to Dr. O’Bryan in The Autoimmune Fix.)
- Your gut health has been compromised (gluten, and possibly other foods and environmental toxins, has slowly chipped away at your intestinal lining). In other words, you have experienced loss of intestinal barrier function.
If you’re trying to understand what causes celiac disease, you naturally want to blame your genes, as it is one of the factors that leads to a celiac diagnosis; however, as we’re seeing, genes alone do not cause celiac disease and emerging research suggest that all THREE factors are required in order for celiac disease to develop.
What Causes Celiac Disease?
Let’s break down the three factors that can lead to celiac disease.
Factor #1: The Role of Bad Genes
You cannot control your genes. You are born with the genes for celiac disease (HLA-DQ2 or DQ8), so if you have them, you have them (and chances are someone else in your immediate family has them too and they simply have not been expressed or “turned on” – more on that later).
To check if you have the “celiac genes,” you can undergo genetic testing with your doctor or do an at-home genetic test through 23andMe, Helix or another online testing service. (I have not done a genetic test at this time and have no personal experience with either service.) 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 will get celiac disease. You are not just a victim of your genes. What I mean is that there is an emerging science called epigenetics. This is the study of how environment and lifestyle factors affect how your genes are expressed (whether your genes are turned on or remain off).
The good news is this means YOU ARE NOT A VICTIM OF YOUR GENES and you absolutely have some say and control over how your genes express themselves. In other words, epigenetics shows us that while our genes influence our health, they do not determine the full scope of our health and are not, simply put, our destiny. The cumulative effect of what you eat and the lifestyle you lead will ultimately determine the expression of your genes. In other words, your genes don’t predict disease; rather they identify the weak links in your genetic chain where disease may develop.
Factor #2: The Role of Environmental Triggers
In The Autoimmune Fix, Dr. O’Bryan says that a variety of offending triggers can turn on autoimmune disease, such as 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 are expressed. For someone with undiagnosed celiac disease who continues to consume gluten, the damage compounds over time until your body gives.
Dr. O’Bryan goes as far as to say, “There is no condition that may not be helped by removing the offending foods, thus calming down the inflammatory cascade.” If you can identify the food trigger early on and avoid it, your immune system will recover and the body will heal.
When someone with celiac disease, for example, removes the offending gluten, his or her body is able to restore and heal. However, gluten is sometimes not the only trigger causing genes to express themselves in a certain way. For example, if a person with celiac disease is on a strict gluten-free diet but isn’t feeling better, there could be a second, third or fourth trigger, in addition to the gluten trigger, making and keeping them sick. In fact, 44 percent of people with celiac disease have a sensitivity to corn, and 50 percent of people with celiac disease are also sensitive to cow’s milk.
If you have put in the hard work to heal your gut yet still experience occasional digestive symptoms, consider taking an at-home food sensitivity test. I wrote about these tests in this article, The Truth about Food Sensitivity Tests.
Unfortunately, if you don’t have celiac disease (or don’t have it yet), it’s important to note that the proteins found in wheat, rye and barley often are the cause of inflammation and intestinal permeability in all humans regardless if the disease is present, according to a research team from Harvard University that included Dr. Fasano. This is disturbing news as avoiding gluten is difficult, especially if you’re used to the Standard American Diet (SAD). In the U.S., the average person consumes 132.5 lbs of wheat per year!
Factor #3: The Role of Intestinal Permeability
When looking at what causes celiac disease, many researchers believe you have to look inside your guts.
Your small intestine is responsible for breaking down the food you eat into molecules that will either continue through the digestive track to become eliminated from your body, or will pass through the thin lining of the intestinal walls into the bloodstream.
Let’s start our discussion on intestinal permeability by focusing on those delicate intestinal walls. Your intestinal lining is paper thin, like a cheesecloth. This is by design. Only small molecules of properly digested food are supposed to get through the cheesecloth, enter your bloodstream and eventually deliver nutrients throughout your body.
However, when you consume foods that your body can’t properly break down (like gluten), these macromolecules break through the intestinal walls and enter your bloodstream. Your body doesn’t know what to do with these large molecules so it makes antibodies to fight them. Poof – 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!
Dr. O’Bryan says that when you continue to eat foods that your body can’t digest, your gut becomes ripe with inflammation. An inflamed gut encourages the growth of bad bacteria and yeast, and these bacterial changes will ferment in your gut, create gas and bloating, and cause the immune system to attack the bacteria in your gut, leading to even more intestinal damage.
In other shocking news, a study published in Nutrients, researchers noted that all individuals with celiac disease or a gluten sensitivity develop intestinal permeability whenever they’re exposed to gluten. Wow!
Something important to note is that the microbiome, a community of bacteria and yeast that weigh up to five pounds and live in the gut, drives gene expression. Yep, your gut bacteria are in charge, my friends!
It’s not surprising, though. Humans are made of only about 23,000 genes (even a worm, with its 90,000 genes, is more complicated than a human). You cannot change your 23,000 genes. They are what they are.
However, what you can change is the state of your microbiome. In fact, your microbiome contains more than 100 times the amount of genes than the human genome. Indeed, it is your microbiome pulling the strings on how your genes express themselves.
Want to change your gut microbiome? Read my articles, The Benefits of Probiotics for Women and How I Healed Myself from Celiac Disease to learn more about the gut healing process. Also consider taking my free Heal Your Gut Challenge.
Can Celiac Disease be Prevented?
Now that we’ve discussed what causes celiac disease (genetic predisposition, food and environmental triggers and intestinal permeability), I want to shift this discussion from what causes celiac disease to whether not celiac disease can be prevented, particularly in high-risk, genetically-predispositioned children.
The truth is what causes celiac disease is not exactly known nor fully understood. Even Dr. Liu said there isn’t a strategy for preventing celiac disease at this time, and this disease requires more research in order to fully understand preventative measures.
However, what we do know is that celiac disease requires ALL three factors (genetic predisposition, the gluten trigger, and intestinal permeability) to come to surface.
So, let’s say you have the genes for celiac disease (so you know you’re at risk for the disease), but you avoid gluten. Will you get celiac disease?
In this case, the answer is no because you need gluten to trigger the genes to express themselves (and the gluten will also be a key contributing factor to intestinal permeability). Without gluten, celiac disease cannot exist. For me, after going gluten-free, I was able to heal my gut and put my celiac disease into remission. (And it would be quite challenging to put 40 percent of the population, the number of people who carry an at-risk gene for celiac disease, on a gluten-free diet!)
Now let’s say you have the genes, eat gluten, and maintain excellent gut health… will you get celiac disease?
This is a tougher question to answer.
Dr. Fasano’s research might give hints on how gut microbes impact whether or not you’ll get celiac disease. He followed 47 newborns considered at-risk for celiac disease. He regularly collected and analyzed microbes from 16 of them. He found that the genetically at-risk children had “impoverished, unstable microbial community.”
What’s more interesting to note, however, is that two of the children went on to develop an autoimmune disease… one celiac disease, another Type 1 diabetes. In both children, a decline in lactobacilli 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, however, to confirm this initial finding.
No Simple Answers
As you can see, there is not a simple answer to what causes celiac disease and understanding whether or not celiac disease can be prevented.
The bottom line is, however, we do know three factors need to exists 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’s the hope. Fingers crossed…