Celiac disease and cancer have a strong association, and unfortunately that association grows stronger with poor diagnosis and poor treatment. The good news is that you greatly reduce your risk by living a healthy life and adhering to a strict gluten-free diet.
Celiac disease, particularly untreated celiac disease, appears to increase the risk for several cancers, including colorectal cancer and primary liver cancer. However, for this lesson I’m focusing on the cancers most strongly associated with celiac disease.
Table of Contents:
- Two Paths to Poor Treatment
- The Cancer Risk
- Non-Responsive Celiac Disease and Refractory Celiac Disease
- Thyroid Cancer
- Squamous Cell Carcinoma of Digestive Tract Epithelial Cells
- Small Intestine Adenocarcinoma
- Carcinoid Tumors and Gastrointestinal Stromal Tumors
- Lymphoma (including Non-Hodgkin’s Lymphoma)
- Symptoms of Intestinal Cancer, Digestive Tract Cancers and Thyroid Cancer
- Reduce Your Risk: Be Vigilant and Be Healthy
Two Paths to Poor Treatment
Celiac disease is a serious lifelong condition requiring vigilant treatment. I find two troubling cases where poor treatment arises.
First, people who, through no fault of their own, just aren’t diagnosed. This requires increased awareness and education, including improved celiac awareness in medical professions. While I’ve seen great strides in this area in recent years, I still worry how backlash against the current gluten-free diet fad may cause some doctors to roll their eyes when a patient presents the possibility of celiac disease.
Please see my celiac disease checklist for help in determining your risk and for a comprehensive worksheet you can fill out and bring to your doctor.
Second, I worry about diagnosed patients who don’t fully understand the stakes involved. In some cases, patients were diagnosed so long ago that doctors may have told them celiac disease was an allergy (it’s not!) and that they’d grow out of it (they won’t!).
But I also worry about some of my readers diagnosed with celiac disease who tell me innocent little stories about letting a little gluten into their lives. Maybe they went to a birthday party. Maybe they were traveling. Whatever the reason, one small little bit of gluten after a long time away from it wouldn’t hurt, would it?
Some people heal on a gluten-free diet, then when most symptoms have resolved, they feel they can cheat now and then. Because celiac disease is not a food allergy, patients often don’t feel or perceive the damage done if they consume a little gluten after having been gluten-free for any extended period. So they cheat once and don’t feel the consequence, then feel a little less vigilant about letting it slip into their lives the next time.
This is a grave mistake. Celiac disease is a lifelong illness. Once you are diagnosed you must avoid gluten for the rest of your life. Even if you don’t perceive symptoms after eating a little gluten, the damage is being done somewhere inside, even if you can’t perceive it.
I understand and appreciate how going gluten-free can have a steep learning curve. I encourage you to peruse the lessons in my Celiac Disease and Gluten-Free Diet lesson areas. To start, gluten intolerance patients need to make sure they really can answer, what is gluten?
The Cancer Risk
The greatest risk for malignancy is in cases of undiagnosed, untreated celiac disease, particularly in people where celiac disease is believed to have been present and undiagnosed for several years. However, there is a strong correlation between adherence to a gluten-free diet and decreased cancer risk. The better you are about avoiding all traces of gluten, the more you reduce your risk for developing one of the cancers discussed in this lesson.
But remember that the opposite is true as well. The less vigilant you are about avoiding gluten, the more you increase your risk for these cancers. Please, be vigilant about avoiding gluten and living a healthy lifestyle.
Non-Responsive Celiac Disease and Refractory Celiac Disease
Another area of unfortunate risk is in people with refractory celiac disease. This is a form of celiac disease that doesn’t respond well to a gluten-free diet. Read my lesson on effective refractory celiac disease treatment for more on this frustrating phenomenon. Some researchers are even beginning to refer to Type II refractory celiac disease as a form of cancer.
For some people previously diagnosed with refractory celiac disease, they may just have a form of non-responsive celiac disease that can be treated with the Gluten Contamination Elimination Diet. Read that lesson on the Gluten Contamination Elimination Diet for more.
Let’s cover the different forms of cancer most strongly associated with celiac disease.
Research published in the peer-reviewed medical journal Digestive Diseases and Sciences suggests that celiac disease patients have 22 times the risk of developing thyroid cancer compared to the general population. The Journal of Clinical Gastroenterology also found a 2.5 fold increased risk of papillary thyroid cancer in celiac disease patients. However, they found a prompt celiac disease diagnosis and a strict gluten-free diet reduced the risk down to the baseline of the general population.
There is also a high correlation of thyroid disorders with celiac disease, including Graves’ disease (hyPERthyroidism) and Hashimoto’s disease (hyPOthyroidism). The association between thyroid disorders and celiac disease is high enough that many doctors will screen for celiac disease when a thyroid condition presents itself. I believe celiac disease patients should be regularly screened for thyroid disorders as well, and I’m relieved to see more gastroenterologists are making this a regular practice.
Beyond excess exposure to radiation, smoking tobacco and drinking alcohol, we currently don’t know of any other factors increasing your risk for thyroid cancer. We do know, however, that it affects women more than men and is more likely to develop in people aged 40 or older.
Squamous Cell Carcinoma of Digestive Tract Epithelial Cells
Squamous cell carcinoma is most often associated with skin cancer, as it is the second most common form of skin cancer. However, as a cancer of epithelial cells, it can also occur anywhere along the epithelial cells lining the digestive tract.
Celiac disease patients have a significantly increased risk for squamous carcinomas of the esophagus, mouth, pharynx, tongue and tonsils. Risk is believed to be greater for patients who suffer undiagnosed celiac disease for five or more years.
Most risk factors relate to squamous cell carcinoma as a skin cancer. We don’t know how or if those same risk factors (like fair skin and sun exposure) apply to squamous esophageal cancers. We do know that your risk may be increased further if you’ve experienced something that triggers a weakened immune system. This includes taking medications that suppress the immune system, such as corticosteroids like Prednisolone. It may also include organ transplants.
Esophageal carcinomas have a high mortality rate, so early detection of these dangerous cancers is critical.
Smoking and alcohol consumption also increase your risk for these squamous cell carcinomas.
Small Intestine Adenocarcinoma
Adenocarcinomas occur among epithelial cells lining secretory tissues, particularly exocrine glands. Celiac disease patients have an increased risk of adenocarcinomas of the small intestine, where it most often develops in the lining of the duodenum and the jejunum, which are the first two thirds of the small intestine. These parts of the small intestine, especially the duodenum, are where celiac disease often does its earliest and most severe damage.
Adenocarcinomas are the most common form of small intestinal cancer. If adenocarcinomas of the small intestine go undiagnosed for long, they can cause intestinal obstructions, which can be deadly in their own right.
Men are more likely to develop small intestine adenocarcinomas, and the elderly are at much higher risk compared to young celiac disease patients. Smoking tobacco products and drinking alcohol increases your risk for small intestine adenocarcinomas, particularly if you smoke and drink alcohol at the same time.
Crohn’s disease greatly increases your risk for adenocarcinomas of the small intestine, especially if a patient suffers from both Crohn’s disease and celiac disease. These two different inflammatory bowel diseases with similar symptoms are difficult to diagnose when they are both present, as being diagnosed with one often causes the diagnosing physician to miss the other.
Some studies indicate a high fiber diet can decrease your risk for this form of cancer. Unfortunately, studies suggest people on a gluten-free diet don’t consume enough fiber. So you need to strictly avoid gluten, but make sure you replace gluten-containing foods with plenty of fiber-rich alternatives. I can’t stress enough how learning to love a variety of vegetables can improve your health and improve your life.
Carcinoid Tumors and Gastrointestinal Stromal Tumors
While less common than some other cancers associated with celiac disease, carcinoid tumors and gastrointestinal stromal tumors may also manifest as small intestinal cancer in celiac patients.
Carcinoid tumors are also called neuroendocrine tumors, and may occur throughout the body. They most often occur in the small intestine when associated with celiac disease. This cancer occurs most often in people with a family history of it. It is also more common in women and African Americans.
Gastrointestinal stromal tumors are rare and sometimes benign. They typically begin in interstitial cells along the lining of the gastrointestinal tract, called interstitial cells of Cajal (ICC). Currently, little is known about the causes and risk factors of these rare tumors, though there appears to be increased risk for people with a family history of gastrointestinal stromal tumor syndrome, which encompasses both malignant and benign tumors.
The most serious malignancy associated with celiac disease is lymphoma (cancer of the lymph glands), particularly non-Hodgkin’s lymphoma. Research suggests celiac disease patients suffer around 7 to 9 times the risk of non-Hodgkin’s lymphoma compared to the general population. Celiac disease is associated with any form of non-Hodgkin’s lymphoma, including B cell, mantle cell and T cell lymphomas.
Enteropathy-associated T-cell lymphoma (EATL) is a rare and deadly cancer that is well-associated with celiac disease. It is most common in untreated celiac disease patients or in patients with certain types of refractory celiac disease (celiac disease that doesn’t respond to a gluten-free diet). EATL is a challenging cancer that does not respond well to chemotherapy.
This celiac-associated cancer makes me feel desperate and urgent for increased celiac awareness among diagnosing physicians. It troubles me terribly that it takes most patients several years to be properly diagnosed.
Having celiac disease and contracting one or more of the following viruses or bacteria further increases risk:
- Epstein-Barr virus (EBV)
- Chlamydophila psittaci (formerly known as Chlamydia psittaci)
- Helicobacter pylori (H. pylori)
- Hepatitis C virus (HCV)
- Human immunodeficiency virus (HIV)
- Human T-cell leukemia virus type 1(HTLV-1)
Obesity and age also increase your risk, with most cases of lymphoma occurring in people aged 60 or older. Some preliminary research suggests exposure to certain insecticides and herbicides may increase risk, but this research is not yet conclusive. Some other preliminary research suggests consuming a large amount of animal products, particularly red meat, may also increase risk, but again, the research is not yet considered conclusive.
Other autoimmune diseases are also associated with an increased lymphoma risk, particularly rheumatoid arthritis and lupus.
Maintaining a healthy weight while eating plenty of vegetables, engaging in an active lifestyle free of alcohol and smoking, and adhering to a strict gluten-free diet will help you minimize your risk.
Symptoms of Intestinal Cancer, Digestive Tract Cancers and Thyroid Cancer
Identifying these cancers can be difficult because symptoms can vary depending on the individual and symptoms may be vague and general. Fatigue, pain and a general aches are a common complaint across multiple cancers.
For small intestinal cancer, weight loss and abdominal pain are the most common symptoms, but as you might imagine, those symptoms dovetail with a wide variety of other conditions. Cramping, bloating, nausea and blood in the stools (which sometimes looks dark and tar-like) are also common symptoms.
Generally speaking, bright red blood in the stool indicates a problem further along the digestive tract (such as the colon), while dark, sticky tar-like blood indicates a problem earlier in the digestive tract (such as the stomach or esophagus). Iron-deficiency anemia and jaundice sometimes occur when small intestinal cancer is present.
For thyroid cancer, pain and tangible lumps around the lower neck are common, though sometimes the pain and the lump are not in the same location.
Symptoms of squamous cell carcinoma of the upper digestive tract typically involves difficulty swallowing, pain and pressure in the upper chest area, and many symptoms that overlap with Gastroesophageal reflux disease (GERD), such as chronic, stubborn heartburn.
If you even remotely suspect you or someone you know might have cancer, please consult a medical professional. You really shouldn’t try self-diagnosing cancer with information you find on the internet.
Screening and diagnosis of these cancers usually begins with some combination of blood work and physical examination. Then, depending on the suspected location and type of cancer, a barium contrast study, colonoscopy, ultrasound or upper GI endoscopy may be conducted. When tumorous masses are found, a biopsy will be taken to confirm diagnosis.
Treatment may depend on the exact location, type and stage of the cancer. For most small intestinal cancers, surgery is performed to remove the tumor and surrounding tissue. In some cases, radiation therapy follows. For lymphomas, radiation therapy is the most common treatment. Please note, as mentioned earlier, Enteropathy-associated T-cell lymphoma (EATL) often doesn’t respond well to chemotherapy. Diagnosing and treating celiac disease and Crohn’s disease early is the best possible treatment.
Reduce Your Risk: Be Vigilant and Be Healthy
Remember these set-in-stone rules:
1. Celiac disease is not a food allergy and you do not grow out of it. It is a lifelong condition requiring lifelong vigilance.
2. Do not cheat on your gluten-free diet! You greatly reduce your risk for cancer by strictly avoiding gluten.
3. Early diagnosis of all cancers greatly improves success rate of treatment.
In addition, remember that obesity, smoking and alcohol consumption all appear to increase your risk for most cancers. If you can adhere to a strict gluten-free diet while eating plenty of vegetables, keeping your weight down, and avoiding cigarettes and alcohol, you can rest assured you’ve established a strong foundation. These habits can help you minimize your risk for associating your celiac disease with cancer.
If you have celiac disease, especially if you are over 40, I strongly recommend regular, annual visits with your gastroenterologist. And if your GI doctor isn’t attentive and vigilant, find another GI doctor. Early diagnosis of these cancers, or any other complications, can literally be the difference between life and death.