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If you’ve found this article, chances are you or someone you know has celiac disease and you’re interested in learning more about the disorder. You have come to the right place! I not only write about celiac disease, but I have the disorder so I uniquely understand how it works and what it’s like to live with it.
While most articles you find online will only give you the textbook description of what is celiac disease, I will help you truly understand the disorder beyond what science books can tell you.
What is Celiac Disease?
Celiac disease is an autoimmune disease that afflicts about 1 in 133 people or one percent of the population. When someone has celiac disease, their immune system gets confused and mistakenly launches an attack on the healthy tissue surrounding the small intestine.
The small intestine is a vital organ. It’s responsible for ensuring that the nutrients from the food we eat are properly absorption and distributed to different parts of your body.
When someone with celiac eats gluten, his or her immune system become confused and lines up its killer T cells that are programmed to attack the small intestine.
The attack is swift and constant. Overtime, the microvilli, or the hair-like follicles surrounding the small intestine, become so damaged that they flatten.
Someone with celiac disease typically becomes nutrient-deficient and/or malnourished and their other vital organs and systems in the body will become negatively impacted due to the lack of proper nutrition.
Is Celiac Disease Hereditary?
Celiac disease is a hereditary disorder. People with the disorder carry either the HLA-DQA1 and HLA-DQB1 genes.
Research shows that people with a first degree relative with celiac have a higher risk for getting the disease (with siblings of first degree relatives having the greatest risk).
Also, a 2019 study found that early consumption of gluten puts a genetically predisposed child at higher risk for developing the disease. Read more about this study here.
What Causes Celiac Disease?
While you must have a genetic predisposition to celiac disease in order to have the disorder, researchers have found that two additional factors must be present as well.
First, you must also be eating gluten (obviously), and second, you must experience some sort of intestinal permeability (leaky gut).
Interestingly enough, celiac disease is the only autoimmune disorder in which the trigger (gluten) is known. When someone with celiac stops eating gluten, their symptoms resolve (with some exceptions).
In fact, their bodies begin to heal and celiac is no longer detectable in their bodies. It’s why people with celiac disease who get tested after years of being on the gluten-free diet have negative celiac disease tests (including me). Once someone with celiac goes back to eating gluten, their body begins to make antibodies to gluten. A blood test is looking for those elevated antibodies to gluten.
Most people who have one of the celiac genes do not have celiac disease out of the gate. Rather, the disease starts like a tiny crack in your pipes. The slow drip of water wears down the popes over time until the pipes can’t take anymore and bursts.
After eating enough gluten, and then experiencing some sort of leaky gut episode (typically caused by a weakened immune system related to a virus, trauma, or taking a round of antibiotics etc.), the celiac genes seemingly “turn on.”
The study of how our genes express themselves is called epigenetics. Researchers are only beginning to scratch the surface in their understanding of what makes genes turn on and off.
Related Reading: What Causes Celiac Disease and Can It Be Prevented?
Are You At Risk?
To understand if you’re at risk for celiac, it’s important to know (a) if you have a genetic predisposition, and (b) the signs and symptoms of celiac disease.
While a majority of people experience gastrointestinal symptoms, such as severe bloating, constipation, gas and/or diarrhea, some people with celiac disease experience little to no GI symptoms.
Related Reading: 8 Roaring Symptoms of Celiac Disease
Common symptoms that may be caused by undiagnosed celiac disease include:
- Nutrient deficiencies (anemia, Vitamin B deficiency, feeling shaky between meals)
- Osteopenia or osteoporosis
- Joint pain or arthritis
- Weight loss
- Chronic gas
- Failure to thrive and short stature (children)
- Dental issues (enamel issue, canker sores, geographic tongue)
- Irregular menstruation
- Fertility issues
- Depression, anxiety or other mental and/or behavioral disorders
- Dermatitis herpetiformis (itchy skin rashes)
Related Article: Gluten’s Effect on Canker Sores, Cold Sores and Geographic Tongue
If you have any of these symptoms, please talk to your doctor about getting tested (more on testing next 👇).
Getting Tested for Celiac Disease
A simple-yet-accurate blood test can tell you if you have celiac disease. You can request the test from your primary care physician, or skip the hassle of the doctor’s office and order the test yourself on this website.
Regardless of how you get tested, follow up your test with a discussion with your doctor. If your test is positive, you have celiac but your doctor will need to officially diagnose you. He or she also may want to perform an endoscopy procedure to biopsy your small intestine. Your doctor is looking for damage consistent with celiac (flattened villi and inflamed lining of small intestine).
Related Reading: How to Get Tested for Celiac Disease
If your blood test is negative, it’s also important to follow up with your doctor to discuss what else might be going on.
If your doctor suspects gluten is behind your symptoms yet the celiac test is negative, he or she may still want to conduct an intestinal biopsy to see if the damage is consistent with celiac disease and assess whether or not the small intestine is inflamed.
If you suspect gluten is causing your symptoms, read this article where I discuss getting the Cyrex Array 3 test to better understand if you have a gluten sensitivity vs. celiac disease.
Related Article: How Do I Know If I’m Gluten Intolerant?
Right now, the only treatment option for celiac is strict adherence to a gluten-free diet. Gluten is a protein found in wheat, barley, rye and spelt (and sometimes oats – read more here). It works as a binder and is what gives baked goods that stretchy, doughy appeal.
People with celiac disease should avoid any product that contains or is derived from gluten grains.
Related Reading: What is Gluten?
That said, there are some promising treatment options on the horizon, some that work by breaking down gluten into digestible and undetectable bits, as well as a potential vaccine, which I talk about in this article.
Related Article: How I Healed Myself from Celiac Disease
Despite not being able to eat gluten, people with celiac can still eat a lot of foods. Naturally gluten-free foods includes all vegetables and fruits, unprocessed meats, fish, eggs, beans, potatoes and a variety of gluten-free grains including rice, buckwheat and quinoa.
Related Article: The Celiac Disease Diet: What a Celiac Can Eat
While a whole foods diet is best for those with celiac disease, it’s not always easy to do in today’s world filled with enticing packaged foods and delectable dinners and take out meals. That’s why avoiding gluten can be tricky for individuals with the disorder.
Related Article: 10 Surprise Products that Contain Gluten
Unfortunately, gluten is found in so many hidden foods, like soy sauce and licorice, and so many people, including chefs and short-order cooks, do not fully know the ins and outs of creating a safe, gluten-free meal free from even a crumb of gluten.
In this article, I decode the top 20 most confusing ingredients to help you better understand what does and does not contain gluten.
Long Term Prognosis
For those individuals following a gluten-free diet and properly managing their symptoms, the prognosis is good.
In fact, you can put your celiac disease symptoms into remission as long as you adhere to the gluten-free diet. The disease will never go away, but it can be managed and will be undetectable in your body if you strictly adhere to the gluten-free diet. (I’ve taken several celiac disease blood tests over the years and they all come back negative; only my first test came back positive.)
However, many individuals struggle to completely adhere to the gluten-free diet. Some make mistakes or get accidentally glutened from time to time, while others choose to cheat on their gluten-free diet.
Related Article: Don’t Cheat On Your Gluten-Free Diet
Furthermore, gluten is addictive, like sugar, making it hard for many people to give up even if they are diagnosed with celiac disease (or a gluten sensitivity).
Dr. William Davis, in his New York Times best-selling book, Wheat Belly, talks about gluten’s opiate-like effect on the brain. He says wheat is hard to give up and causes distinct withdrawal symptoms in those who stop eating it. While the gluten-free diet is the only treatment option for people with celiac disease, it also is a difficult treatment regimen for many to follow.
Related Article: 10 Reasons Why You Still Crave Gluten
Unmanaged (or improperly managed) celiac disease can lead to additional autoimmune diseases, difficulty conceiving a child, worsening and painful symptoms, as well as serious, life-threatening diseases such as cancer, particularly intestinal lymphoma and small bowel cancer.
Common sense tells us that when you body lives in a chronic state of inflammation, it is ripe for disease and creates an environment where cancer cells can grow.
A study published in Gastroenterology said that the later in life you’re diagnosed with celiac, the higher your risk for getting additional autoimmune disease. This is just one of many reasons early detection of celiac disease is crucial!
Related Article: 5 Reasons Why Early Detection of Celiac Disease is Crucial
Living with Celiac Disease
As mentioned, celiac disease is a lifelong affliction that must be continually managed via a strict, gluten-free diet. Currently, there is no cure for the autoimmune condition.
As someone who lives with celiac day-in and day-out, I uniquely understand the challenges. It’s not easy to eat out, travel, shop for groceries, or eat at a friend’s house.
Social eating is the fabric of Western culture. Most of my social plans revolve around food. I imagine yours do too.
I have spent many years figuring out ways to mitigate the risks of eating out and getting sick from accidental gluten exposure.
First, I wrote an ebook called The Ultimate Guide Out Gluten Free. I eat out as safely as possible and have packed this ebook with my best tips.
I also use a Nima Sensor when eating out, which allows me to test my food for gluten before I eat it.
Related Article: 13 Things You Need to Know about the Nima Sensor
I believe you can live a healthy, happy life with celiac, but you must always be vigilant and aware of everything you eat. Labeling reading, advocating for yourself and communication about the seriousness of your diet can help you mitigate the risks of accidentally eating gluten.
There is an emotional burden to the disease that is hard to describe. As much as my celiac disease diagnosis has brought me good health and resolved my symptoms, it’s still a burden to manage day-in and day-out.
Related Article: The Emotional Burden of the Gluten-Free Diet
Regardless, celiac remains one of the only disorders where the treatment burden is solely diet. And while it’s nice to not have to depend on pharmaceutical pills to manage my disease, the burden of the disease is always with someone wherever they go.