The complications of celiac disease can be severe. In fact, they can be life-threatening — and I’m not using hyperbole to hold your attention. See Gluten Intolerance Increases Mortality Rates. Between 80% and 90% of all people with celiac disease remain undiagnosed. That means around 1.4 million people in the United States alone may suffer the following complications.
Some consequences are direct results of untreated celiac disease, such as cancer. Other complications result from the combination of malnutrition and systemic inflammation caused by celiac disease, like depression.
While cynics and skeptics roll their eyes at the growing gluten-free diet fad, millions of undiagnosed and untreated celiac patients will experience one or more of the following complications of celiac disease if they remain undiagnosed and untreated. If you or someone you love is worried about celiac disease, I encourage you to visit my celiac disease checklist.
A gluten-free diet isn’t easy. Believe me, I know: I went gluten-free over a decade ago, when celiac awareness and gluten-free foods were far less widespread than they are today. But legitimate and disturbing reasons should compel you to remain vigilant.
Table of Contents
- The Four Primary Causes of Serious Complications
- Bone Loss
- Ulcerative Jejunitis and Collagenous Sprue
- Neurological Disorders
- Infertility, Miscarriage and Congenital Malformation
- Final Thoughts
The Four Primary Causes of Serious Complications
I’m sure you want to get to the seven consequences, but let me briefly outline the four main ways these problems develop.
First, celiac disease does significant damage to your small intestine, flattening the villi and inflaming the mucosa. This causes malabsorption of every kind of nutrient, which in turn causes malnutrition. Malnutrition leads to all kinds of different ailments, including too many for me to list in this lesson.
Second, the inflammation process triggers the production of proteins called pro-inflammatory cytokines, which may trigger inflammation in other parts of your body. This can occur anytime you have inflammation anywhere in your body, but long-term, untreated celiac disease causes long-term, severe inflammation in your gut, which means an high amount of pro-inflammatory cytokines begin to course through your veins, triggering additional inflammation throughout your body.
Third, as celiac disease damages your intestine, you develop more and more of a permeable intestine, also referred to as leaky gut. This means all kinds of toxins, peptides (unbroken amino acid chains) and antibodies meant to stay in your intestine cross the wall of your intestine and reach your bloodstream.
A leaky gut is a common denominator among several autoimmune diseases, including Addison’s disease, type 1 diabetes, multiple sclerosis, and rheumatoid arthritis. In many cases we have a bit of a chicken or the egg situation, where we’re not sure if a leaky gut causes the autoimmune response or if the autoimmune response causes the leaky gut. However, we do know that people with celiac disease are far more likely to develop additional autoimmune diseases than the general population, and we do know that people with long-term untreated celiac disease are more likely to develop multiple autoimmune diseases. Untreated or undiagnosed celiac disease causes the gut to become more and more permeable or leaky over time.
Fourth, system-wide problems occur as a result of the disease process in the intestine. For example, antibodies attacking gluten and the lining of your intestine may get into your bloodstream and attack other parts of your body, including your nerves, your skin, your heart and your brain. In addition, undigested gluten peptides passing from your intestinal lumen into your bloodstream may trigger additional problems: a common theory is that these gluten peptides may be related to mental or psychological symptoms or conditions.
7 Serious Complications of Untreated Celiac Disease
Now that you understand how complications arise, let’s go over seven possible consequences of long-term, untreated celiac disease.
Your bone marrow produces red blood cells. These red blood cells contain an iron-rich protein called hemoglobin, which give the cells their red color. The hemoglobin in red blood cells carries oxygen from your lungs to all your cells, organs and tissues.
Your body stores iron in storage proteins called ferritin, which it keeps in the liver and bone marrow. Ferritin molecules also course through your body to help maintain healthy red blood cells. To better understand ferritin, read my lesson on low ferritin symptoms.
Anemia is a common consequence of untreated gluten intolerance. The three most common forms of anemia seen in celiacs are folate deficiency anemia, iron deficiency anemia and vitamin B12 deficiency anemia. Your body needs folate, iron and vitamin B12 to manufacture red blood cells and deliver oxygen to every cell, tissue and organ in your body. You may develop a broad range of symptoms when you have anemia, most often beginning with fatigue, weakness and dizziness.
Anemia develops in people with celiac disease because of the damage incurred by the small intestine. When the small intestine can no longer absorb iron, folate, vitamin B12 or other nutrients required to manufacturer red blood cells (like vitamin C), patients become anemic. If left untreated, anemia can be a serious condition, causing arrhythmias and decreasing survival rate for any number of health emergencies, including stroke, heart attack or cancer. A strict gluten-free diet and supplementing your diet with folic acid, iron and vitamin C can help you make a full recovery.
If anemia persists beyond a gluten-free diet and supplementation, seek professional medical attention as there may be another, separate cause at the root of your problem.
Did you know that 40% of people diagnosed with celiac disease suffer from reduced bone mass, with 26% of them having full-blown osteoporosis? These numbers are probably worse among the legions of long-time undiagnosed celiac disease patients. Only about 1 in 5 or 6 celiac disease patients have been diagnosed, so millions of afflicted individuals walk around undiagnosed and unmeasured in commonly referenced statistics.
Osteoporosis is a condition where bones have become brittle, porous and weak. The term itself literally means “porous bones.” Bone tissue requires constant renewing through a process called bone remodeling. As older bone tissue is absorbed into the bloodstream as minerals (a process called resorption), new bone tissue must be made (formation). Osteoporosis occurs when resorption greatly exceeds formation for an extended period of time.
The consequences of osteoporosis include breathing problems from poor skeletal integrity, chronic back and hip pain, reduced height, stooped posture, and most dangerously, a greatly increased risk for bone fracture. Even relatively minor events, such as coughing, can cause fractures in long-time osteoporosis patients.
Most recently-diagnosed celiac patients need to supplement their diet with a combination of calcium, vitamin D and magnesium. These nutrients work together to help you improve your overall bone health.
Even if you know you don’t suffer from a problem with bone mass or osteoporosis, you should at least consider supplementing your diet with vitamin D, as this is the most common nutrient deficiency among people suffering from any type or degree of gluten intolerance.
Osteomalacia (softening of the bones) and osteopenia (a form of early or mild osteoporosis) may also occur, and if these diagnosed conditions are not treated, they can develop into osteoporosis.
If you have celiac disease, you have an increased risk for several different cancers. The longer you go undiagnosed and untreated, the greater your risk. If you have been diagnosed with celiac disease, you can decrease you risk by adhering to a strict and healthy gluten-free diet. However, you increase your risk by being less vigilant about the gluten in your life.
Lymphomas (cancers of the lymph glands), esophageal carcinoma and cancer of the small intestine (adenocarcinomas) are all more common in celiac disease patients than the general population. Early detection and treatment is critical.
For more on the relationship between cancer and celiac disease, see my comprehensive recent lesson: Celiac Disease and Cancer.
Ulcerative Jejunitis and Collagenous Sprue
Ulcerative jejunitis and collagenous sprue are two serious conditions that can occur in untreated celiac disease or in refractory celiac disease (a serious and rare form of celiac disease that doesn’t respond to a gluten-free diet).
Ulcerative jejunitis, which you may see called ulcerative jejunoileitis or non-granulomatous ulcerative jejunitis, involves chronic ulcers along the small intestine. These ulcers don’t heal and may cause strictures, or a narrowing of the intestinal lumen, the central tube of your small intestine through which food passes as it is digested and absorbed. This condition is difficult to treat and may require surgical removal of the afflicted portion of the small intestine.
Collagenous sprue, sometimes referred to as collagenous celiac disease, involves the build-up of collagen scar tissue along the walls of the small intestine. Collagenous sprue may also cause a narrowing of the lumen, and treatment may also require surgical removal. Collagenous sprue is more common in unresponsive refractory celiac disease.
Both ulcerative jejunitis and collagenous sprue increase the patient’s risk for cancer, even over the already increased risk for people with celiac disease. Symptoms can be seen as more severe versions of common symptoms of celiac disease. These symptoms include cramping, diarrhea, malnutrition, weight loss and in some cases, blood in the stool. Treating these conditions can be very difficult, which is why early and accurate diagnosis and treatment of celiac disease is so critical.
Because ulcerative jejunitis involves mucosal lesions like Crohn’s disease and ulcerative colitis, clinically differentiating ulcerative jejunitis from these other two inflammatory bowel diseases can be very difficult.
For more on refractory celiac disease, see my lesson on refractory celiac disease treatment.
This is a topic close to my heart, so I’ll go into greater detail elsewhere. In fact, I’m writing a book about gluten intolerance and depression. If anyone reading this doubts how serious a consequence depression can be, you either haven’t battled real clinical depression yourself or haven’t had someone close to you battle it.
Inflammation and the cytokines produced in the immune process may cause depression symptoms, either directly or through affecting thyroid hormones. As celiac specialist Dr. Fasano put it in his book, Gluten Freedom, “The gut is not Las Vegas: what happens in the gut does not stay in the gut.” In addition, one study suggests celiac disease patients experience reduced blood circulation in their brains.
We have a proven causal relationship between folate deficiencies and neurological disorders as well as common symptoms of depression, like apathy and fatigue. Folate deficiencies are common among celiac disease patients. In addition, tryptophan deficiencies are common among celiac patients and can cause symptoms such as anxiety and frustration.
In addition, 90% of serotonin in your body is in the walls of your small intestine. This often surprises people because serotonin is one of the most famous neurotransmitters, commonly associated with mental health and often manipulated by popular mental health medications. When celiac disease wreaks havoc in the small intestine, the volume and function of serotonin in your body can be severely impaired.
The longer you go without your celiac disease being diagnosed or treated, the more likely it is you’ll experience one or more of these depression-triggering phenomenons. I sort of hurried through this section for now, but hopefully you can see how there’s little doubt that untreated celiac disease influences behavioral problems and mental health.
This is a biggie: it persists as an umbrella over every other condition. Celiac disease causes damage and inflammation to the small intestine. This makes your small intestine less able to digest and absorb a wide range of vital nutrients. The longer you go undiagnosed and untreated, the worse this damage becomes, and the greater your malnutrition will become.
It varies with every individual, but the most common vitamin and mineral deficiencies presenting themselves in celiac patients are calcium, iron and vitamin D.
Long-term untreated celiac disease can cause a deficiency in every nutrient we obtain from our diet. The second most common deficiencies celiac patients develop include the B vitamins — folate, niacin, riboflavin and thiamin — and the fat-soluble vitamins and minerals, including vitamins A, D, E and K along with minerals like magnesium and zinc.
Newly diagnosed celiac patients often need to take supplements in addition to removing gluten from their lives. Calcium, vitamin D and a multivitamin are often prescribed. I strongly recommend gluten-free enzymes and probiotics to help the gut digest these supplemental nutrients, at least until your gut has healed to the point where it can better absorb nutrients.
Please note that many gluten-free foods are not fortified with the vitamins and minerals legally required to be added to their gluten-containing counterparts. This can make replenishing nutrients difficult for some gluten-free dieters. This is another reason I recommend a multivitamin. I also recommend you incorporate a wide variety of fresh vegetables into your gluten-free diet. Try not to rely on packaged foods.
According to the University of Chicago’s Center for Peripheral Neuropathy, sometimes neurological symptoms appear before gastrointestinal symptoms in celiac disease patients. However, both patients and doctors alike don’t connect the neurological symptoms with what most people still consider primarily a disease of the gastrointestinal tract.
People suffering from neurological conditions as a result of some kind of gluten sensitivity may experience one or more of the following symptoms:
- Ataxia – characterized by jerky, clumsy coordination or gait, or in some people difficulty speaking
- Brain Fog
- Epileptic seizures
- Peripheral Neuropathy – most often characterized by numbness or burning of extremities
- Unexplained muscle twitches
There are, in fact, more neurological symptoms and conditions associated with gluten intolerance than just this list, but these are the most common and well-established.
Our nervous system includes two key parts: the central nervous system, which includes the spinal column and brain, and the peripheral nervous system, which includes millions of nerve fibers that relay signals to and from every inch of your body to and from your central nervous system.
If you experience any degree of neuritis — inflammation of the nerves — some of your nerves cannot relay information and signals to and from the brain. The result could be misinformation (a burning sensation when nothing is actually burning) or delayed information (which may cause poor balance or coordination).
You can summarize the ways gluten intolerance causes these conditions with three categories: direct consequences of the autoimmune response to gluten (gluten antibodies attack tissues or cells), and two indirect consequences of the autoimmune response: inflammation (which produces pro-inflammatory cytokines) and vitamin deficiencies.
Infertility, Miscarriage and Congenital Malformation
Multiple studies suggest that between 4% and 8% of women with unexplained infertility suffer from celiac disease. A recent study published in the Journal of Reproductive Medicine found that about 6% of women with unexplained infertility had celiac disease, with most of those women having undiagnosed and untreated celiac disease.
Preliminary research on celiac disease and reproductive health suggests a relationship between untreated celiac disease, recurrent pregnancy loss and poor obstetric outcome, but more comprehensive research still needs to be conducted and verified.
There’s no doubt untreated celiac disease in a pregnant woman can affect newborn health. A broad range of causes influence this outcome, not least of which is malnutrition caused by a damaged small intestine. Folic acid is one of the most common supplements prescribed during pregnancy, and unfortunately a folate deficiency is a common problem for people with undiagnosed celiac disease. (Folic acid is the supplemental form of folate.)
I know some of this information can be troubling; but as I tell my newsletter subscribers, I don’t write these lessons to scare you or trouble you. I’m trying to empower you with knowledge so you can feel more confident and effective in treating yourself or your loved ones. Sometimes we need to be reminded of the serious complications so we feel more compelled to be vigilant in our gluten-free lifestyle.
Remember, if you have celiac disease, you greatly minimize your risk for all of these complications by adhering to a strict gluten-free diet. Most celiac patients make a remarkable recovery on a healthy and strict gluten-free diet. It was life-changing for me; it was the dawn of a better life and brighter future. I hope to help you feel this way too.