From Hashimoto’s to Grave’s disease and Multiple Sclerosis to Arthritis, living with an autoimmune disease isn’t easy. As you likely know from reading the other pieces in our series, autoimmune diseases mean your immune system is attacking your organs, tissues, and cells.
There are various causes, including genetics, bacteria, viruses, and certain drugs. And the symptoms vary too, including everything from general health problems like fatigue to more uncomfortable things like digestive problems and thyroid issues. It's not impossible but not always easy to determine your risk factor for autoimmune diseases that are not genetic.
According to the National Institutes of Health, up to 23.5 million Americans live with autoimmune conditions, which disproportionately affect women. Since their prevalence (researchers don’t know why) is increasing, now is as good a time to dive into the next one in our series on autoimmune conditions. This week, we’re focusing on the symptoms and causes of celiac disease and what you can do about it.
What is Celiac Disease?
Celiac disease is a common autoimmune disease that occurs when your immune system reacts to gluten and results in inflammatory damage to the intestinal cells. The autoimmune disease is sometimes thought of in the same vein as gluten intolerance. When you eat gluten, your immune system attacks your small intestine. But (as we will explain more later), the two are not always the same.
With an autoimmune condition like celiac disease, consuming glutenous foods can permanently damage your small intestine. Other consequences of the condition include an inability to absorb enough nutrients, digestive symptoms like abdominal pain, and other gastrointestinal issues.
When celiac disease damages your small intestine, it directly targets something known as the villi.
Villi are small projecting tissue matter found along the wall of your small intestine. Their purpose is to absorb nutrients from your food. People with celiac disease need to be extra careful because the villi stop absorbing nutrients when they ingest gluten.
It can cause or add to various health problems, including malnourishment, miscarriage, infertility, neurological diseases like peripheral neuropathy, certain cancers, and a loss of bone density.
Current estimates suggest that around 2 million people in the United States and 1 million people worldwide have celiac disease. Of course, many people don’t know they have it. Diagnosis can be difficult, especially because some symptoms can mimic other gastrointestinal conditions, including non-celiac gluten sensitivity. That’s why it’s vital to learn more about the causes, symptoms, and treatment.
What Is Gluten?
As we tell you about celiac disease, we’ve been talking a lot about gluten, which is a protein you find in various types of wheat. Many, many foods we eat contain gluten. For example, durum wheat, semolina wheat, spelt, farina, farro, rye, and barley contain gluten. Gluten’s purpose is to maintain the shape of food, kind of like a glue that holds it together.
You’ll typically find gluten in the following foods:
Gluten is sometimes used as a filler in different types of food, making it hard to tell what foods contain it unless you carefully read nutrition labels. Remember when we said it’s like glue holding things together? Here’s a fun fact: “gluten” actually comes from the Latin word for “glue.”
What Are Some Common Symptoms of Celiac Disease?
Celiac disease, like all other autoimmune disorders, affects everyone differently. You may experience various symptoms, from the more common digestive symptoms to less common ones like delayed growth, calcium deficiencies, and behavioral problems.
As research from NIH shows, people with celiac disease are also more likely to have inflammatory bowel diseases like Crohn’s disease and ulcerative colitis.
Here are some common ones to watch out for. Remember that these may all be a marker of other health problems. So it’s a good idea to visit a healthcare professional for a proper diagnosis if you suspect any may be celiac disease symptoms.
- Iron deficiency (or anemia)
- Bloating and abdominal pain
- Chronic diarrhea
- Pancreatic problems
- Gallbladder malfunctions
- Pale, foul-smelling, or fatty stool
- Iron-deficiency anemia
- Weight loss
- Irritability and behavioral problems
- Dental enamel defects on your teeth
- Delayed growth and puberty
- Attention Deficit Hyperactivity Disorder (ADHD)
If you don't treat celiac disease, it can cause many long-term health conditions. Not only can other symptoms develop and become permanent, but the ones listed above can become more severe or permanent. That's why detecting and diagnosing it is important to focus on.
How to Detect and Diagnose Celiac Disease
Celiac disease is passed down genetically, and recent medical discoveries and research have made it easier to diagnose. However, it's still not as simple as recognizing when you have a cold! But if you have celiac disease, there's a high likelihood one of your parents or aunts and uncles has it too. So if you have relatives (especially first-degree relatives) with the autoimmune condition, you have a one in 10 chance of developing it yourself.
Celiac disease does not develop at a specific age but rather when people begin to eat foods or take prescribed medications that contain gluten. If your doctor thinks you may have celiac disease, they will probably ask you to take one or more of the following tests:
Your doctor may run two different blood tests if they think that you have developed celiac disease.
1) Genetic Testing: This test looks for human leukocyte antigens.
2) Serology Testing: This type of test looks for antibodies in your bloodstream. You can measure specific antibody proteins to determine if you have reactions to gluten consumption.
If your doctor suspects celiac disease, they may suggest a biopsy. This test usually involves a procedure called an endoscopy. There are two types of endoscopy that your doctor may order to determine if you have celiac disease:
1) A Regular Endoscopy: This type of test uses a tube put down your throat with a camera attached. It will take footage of your small intestine and may also take a small tissue sample from the area for your doctor to examine.
2) A Capsule Endoscopy: This test involves swallowing a small, wireless camera that will pass through your body, capturing footage along the way. The capsule is approximately the size of a vitamin tablet.
A Note on Non-Celiac Gluten Sensitivity
As we mentioned above, gluten intolerance and celiac disease have many of the same symptoms, but they’re not the same. One key difference, of course, is that celiac is an autoimmune condition. At the same time, gluten intolerances are simply gluten sensitivity. One of the most common intolerances is known as non-celiac gluten sensitivity (NCGS)
While you will find relief from symptoms of celiac disease and NCGS when you avoid eating gluten, it’s more important for those with celiac to modify their diets. If you have a gluten intolerance, you will see improvements when you cut out foods that trigger the sensitivity.
Still, you can eat the occasional gluten-filled treat without too many adverse effects. So you can minimize consumption rather than avoid it altogether, forever. However, with celiac disease, avoiding gluten is essential—typically for the rest of your life.
If you don’t have a gluten intolerance, you don’t need to focus on a gluten-free diet. Cutting out foods without learning more about how your body responds to them is not a good idea. Always consult with a healthcare professional like a credentialed dietitian or nutritionist before making any significant changes to your diet.
Some Interesting Facts About Celiac Disease
There’s so much more you can learn about this autoimmune condition and new things to learn as research on it continues. In the meantime, here are a few facts from the Celiac Disease Foundation that you may find interesting.
- 20 percent of people suffering from celiac show no symptoms but are at risk for long-term health effects.
- Those who have celiac disease may develop lactose intolerance.
- If a product is labeled “gluten-free,” it means that it does not have more than 20 parts per million of gluten, not that it doesn’t have any. Remember to read nutritional facts labels carefully.
- Six percent of Americans have a gluten sensitivity or gluten intolerance that is not related to celiac disease.
- Here’s some interesting facts about the global prevalence of celiac disease: 0.4 percent in South America, 0.5 percent in Africa and North America, 0.6 percent in Asia, and 0.8 percent in Europe and Oceania. It’s also interesting that the prevalence is higher in females, and greater in children than adults.
Does Blood Sugar Play a Direct Role in Celiac Disease?
The short answer to this question is no; blood sugar does not play a direct role in celiac disease. However, as we know, everything impacts and affects your blood sugar levels. For example, if you have celiac disease, you most likely have a sensitive digestive system. The more understanding you have of your food consumption and digestive system, the better you get at maintaining healthy blood sugar levels.
The healthier you are, the better your body will be able to handle any side effects or symptoms that may have developed with your celiac disease. According to studies, there’s some relation between the two—patients with type 1 diabetes have a 6 percent chance of also having celiac disease.
If you have type 1 diabetes, healthcare professionals will likely recommend tests to see if you also have this autoimmune condition. Regardless of test results, some doctors will even recommend a gluten-free diet.
While more research will help experts fully understand the connection, what we know right now is that it does exist, even if in some small way. So, it’s a good idea to be on the lookout for symptoms of the other when you have either one.
How to Treat and Manage Celiac Disease
There is no known pharmaceutical cure for celiac disease, and one of the only ways to treat it is through your diet. If you’re diagnosed with it, your doctor will help you create a gluten-free diet that caters to your lifestyle.
Those with celiac disease will find that their symptoms improve once they eliminate gluten from their diets. Following a gluten-free diet will reverse and heal the damage done to your small intestine. Most patients will find that their symptoms begin to disappear within weeks of eliminating gluten.
If you don’t treat and manage the disease, it can lead to other health problems like osteoporosis. It can also increase your risk factors for other autoimmune diseases and conditions like type 2 diabetes.
Once a healthcare professional diagnoses you and instructs you to begin living a gluten-free lifestyle, they will probably refer you to work with a credentialed dietitian or nutritionist. They will help you learn what foods to eliminate and how to compensate for the loss of certain grains in your diet. So you can ensure you’re not cutting out essential macro or micronutrients, undereating, or replacing gluten with foods that your body does not respond well to.
Finding Support to Manage Celiac Disease
When you have celiac disease, eating a gluten-free diet is essential for maintaining your health and wellbeing. However, it can be difficult, as gluten is in many common foods like bread and pasta. Fortunately, many resources are available to help people with celiac disease find support and manage their condition effectively.
Online communities and support groups can provide crucial information about dining out or traveling on the go. Dietetics experts can offer guidance on planning nutritious meals free of gluten. Whether you are new to celiac disease or are a long-time sufferer, there is always help and advice available to help you successfully manage your symptoms and stay healthy.
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Heather is a Registered and Licensed Dietitian Nutritionist (RDN, LDN), subject matter expert, and technical writer, with a master's degree in nutrition science from Bastyr University. She has a specialty in neuroendocrinology and has been working in the field of nutrition—including nutrition research, education, medical writing, and clinical integrative and functional nutrition—for over 15 years.