If you’re asking the question, What is Celiac Disease?, you’ve come to the right place for answers. I live with the disorder every day, and have studied the disease in earnest both as a patient of celiac disease and as an integrative nutrition coach. This article should not be construed as medical advice and contains affiliate links. Please read my disclosures and disclaimers.
Want to learn all about celiac disease in a book? Check out Dear Gluten, It’s Not Me, It’s You – your survival guide to breaking up with gluten and restoring your health post celiac disease or gluten sensitivity.
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 deal with it day-in and day-out.
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 a genetic autoimmune disease that affect about 1 in 100 people or one percent of the population. When someone has celiac disease, their immune system gets confused and mistakenly attacks the healthy tissue surrounding the small intestine every time they eat gluten.
The small intestine is a vital organ responsible for ensuring the nutrients from the food are properly absorbed and distributed to different parts of the body.
Once someone with celiac eats gluten, their body begins to make antibodies to gluten. A blood test is looking for those elevated antibodies to gluten.
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. There are dozens of symptoms related to celiac disease.
Is Celiac Disease Inherited?
Celiac disease is a genetic, hereditary disorder. People with the disorder carry either the HLA-DQ2 and HLA-DQ8 genes.
Furthermore, 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.
You can undergo genetic testing to find out if you carry one of the celiac disease genes and therefore if screening for the disorder is necessary.
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, like those with refractory celiac disease).
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 a pipe. The slow drip of water wears down the pipe over time until the pipe bursts.
After eating 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” in many celiac patients.
Are You At Risk?
While a majority of people experience classic gastrointestinal symptoms, such as severe bloating, constipation, gas and/or diarrhea, some people with celiac disease experience little to no GI symptoms or silent celiac disease, which is where the symptoms don’t present themselves in an obvious way.
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)
- Hair loss
- Oral issues (canker sores)
If you have any of these symptoms, please talk to your doctor about getting tested (more on testing next).
Getting Tested for Celiac Disease
The process to get tested for celiac disease is simple. You need to take a celiac disease screening blood test that you can either request from your doctor or order on this website. The blood test is looking for antibodies to gluten.
Follow up your test results with a discussion with your doctor. If your test is positive, you will be diagnosed with celiac disease. Most doctors will also 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).
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.
He may also want you to undergo a genetic test to see if you even have one of the celiac disease genes. If you do, you are genetically predisposed to having celiac disease one day; if you don’t, you won’t have the disorder.
If you intuitively suspect gluten is causing your symptoms, I suggest you get get tested for gluten sensitivity. A test that Dr. Tom O’Bryan, author of The Autoimmune Fix and leading gluten sensitivity doctor in the world, recommends is the Wheat Zoomer test.
Celiac Treatment Options
The only treatment option for celiac disease is strict adherence to a gluten-free diet. Gluten is a protein found in wheat, barley, rye and spelt (and sometimes oats). It works as a binder in foods and is what gives baked goods that stretchy, doughy feel.
People with celiac disease should avoid any product that contains or is derived from gluten grains.
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.
Despite not being able to eat gluten, people with celiac disease 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.
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.
Unfortunately, gluten is found in so many confusing ingredients labels and 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.
People with celiac disease need to become educated on all sources of gluten and learn everything they can about decoding food labels for hidden gluten and communicating the seriousness of their disorder to those preparing their food.
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.
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.
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.
Unmanaged (or improperly managed) celiac disease can lead to additional autoimmune diseases, fertility issues, 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!
Living with Celiac Disease
Celiac disease is a lifelong affliction that must be continually managed via a strict, gluten-free diet. Currently, there is no cure for celiac.
As someone who lives with celiac day-in and day-out, I uniquely understand the challenges. The daily struggle and emotional burden of the gluten-free diet are real. 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. (Please read this article for the latest updates on the Nima Sensor.) There is also a new portable testing device called the ALLIS Sensor that also tests your food before you eat it.
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.
Celiac disease remains the only disorder where the treatment burden is solely diet. And while many people with celiac disease agree that it’s nice to not have to depend on pharmaceutical pills to manage their disease, the burden of the gluten-free diet is always with someone wherever they go.
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