Updated September 2024 | Celiac Disease & COVID-19 Vaccines
Information about COVID-19 is constantly evolving. Beyond Celiac will provide updated evidence-based information and guidance to this page as it becomes available.
Our Science Team is answering the questions on this page. Learn more about our Science Team.
With new COVID19 vaccines approved recently by the Food and Drug Administration, you may have questions about what steps you can take and what the best advice is for those who have celiac disease.
The US Centers for Disease Control and Prevention (CDC) notes that vaccine protection decreases over time, so it is important to stay up to date with your COVID-19 vaccine. Find more information from the CDC.
Additionally, an organization made up of celiac disease healthcare professionals recently updated its position statement on Covid vaccines and vaccines in general.
“The Society for the Study of Celiac Disease (SSCD) recommends the use of updated Covid vaccines among all eligible individuals with celiac disease,” the statement says. “Data on updated Covid vaccines in people with celiac disease are limited, but studies from the first year of the Covid pandemic found that people with celiac disease mount a response to Covid vaccine similar to that of the general population.
The SSCD notes that people with celiac disease do not appear to be at increased risk of severe outcomes related to Covid, but studies have shown a modest risk of severe cases of the flu and pneumonia.
The organization also recommends the flu vaccine for everyone older than 6 months and a pneumococcal vaccination for children older than 2 years and adults 19 years or older.
Vaccines do not contain gluten, according to SSCD.
“Common reactions to a vaccine dose include myalgias, fever, and other signs of immune activation, which may overlap with the symptoms experienced after inadvertent gluten exposure,” the vaccine statement says. “Despite this clinical overlap, there is no evidence that any commercially available vaccine contains gluten.”
Read the complete SSCD statement on vaccines.
From Ken Kilgore, PhD, MBA Beyond Celiac Chief Scientific Investment Officer
Certainly there are potential links between the mechanisms involved in celiac disease and COVID-19 immunity, which creates the possibility of increased response in those with celiac disease. However, this is purely hypothetical and has yet to be proven. At Beyond Celiac, we are closely monitoring the situation and will post any necessary updates on this page.
From Benjamin Lebwohl, MD, MS, Director of Clinical Research, The Celiac Disease Center at Columbia University
The bottom line is that we don’t have any direct evidence that people with celiac disease are at increased risk of developing severe consequences of COVID-19, but there is theoretical concern based on studies of other infections (including viral infections such as herpes zoster, an influenza). These prior studies show that people with celiac disease are at slightly increased risk of these conditions, or of more severe manifestations of these conditions. At the same time, it is reassuring that these increased risks are small, and so do not justify any additional precautions separate from those of the general population.
So my hope and expectation is that any increased risk of COVID-19 related complications in people with celiac disease, if present, will be very small. Certainly there’s no evidence to support additional precautions beyond what is advised to the general population at this time.
Data Collection Efforts
Since data about celiac disease and COVID-19 needs to be collected, we have introduced two new surveys in Go Beyond Celiac. One asks about the implications of COVID-19 on the celiac disease community whether or not they have been diagnosed. The other is specifically for people who have been diagnosed with COVID-19.
There is also an international effort to collect clinical data from physicians treating patients with celiac disease and COVID-19. That information is being collected here and is for physicians to fill out.
October 2020 update: A study found that those with celiac disease are NOT at increased risk of contracting covid-19.
People with celiac disease who are otherwise healthy are not immunocompromised and not at higher risk for coronavirus. According to the CDC, people who are at higher risk are older adults and people with serious chronic medical conditions, such as heart disease, diabetes and lung disease. Currently, there is no evidence that children are more susceptible.
The immune system of someone with celiac disease activates in response to gluten when it shouldn’t. The immune system is over-active rather than suppressed. In contrast, the immune system of someone who is immunocompromised doesn’t react when it should. It is less effective at fighting off germs like those causing the flu and the coronavirus. Treatments such as chemotherapy, certain drugs for autoimmune conditions, steroids and some conditions (like AIDS), suppress the immune system’s response. Therefore, people with those conditions or taking those treatments are more at risk.
If you are taking corticosteroids and other immunosuppressant medications, you are at increased risk for coronavirus. While not typically used for celiac disease, these medications are often used to treat other autoimmune diseases.
The CDC says the data from China suggest that those with diabetes, heart disease, and lung disease are all at higher risk of getting more sick from coronavirus.
Acknowledging that there is no specific research data available, it follows that if celiac disease is carefully controlled and a strict gluten-free diet is in place, the immune system will have returned to a state similar to the rest of the population, and therefore the susceptibility to COVID-19 should not be different from that of the general population. If celiac disease is in its active stage, and a strict gluten-free diet is not observed (as in the case of those who are undiagnosed or those who continue to have accidental or intentional gluten exposure), the immune system is over-activated by the presence of gluten. Such over-activation of the immune system will make a person more susceptible to any viral infection, including COVID-19. Because more research is needed, we are collecting information about how COVID-19 impacts people with celiac disease through our Go Beyond Celiac database. With your feedback we can better understand the interplay between celiac disease and COVID-19 infection.
A recent article in The Atlantic had many in our community wondering about this question, so we reached out to experts for their comment.
From Ken Kilgore, PhD, MBA Beyond Celiac Chief Scientific Investment Officer
Certainly there are potential links between the mechanisms involved in celiac disease and COVID-19 immunity, which creates the possibility of increased response in those with celiac disease. However, this is purely hypothetical and has yet to be proven. At Beyond Celiac, we are closely monitoring the situation and will post any necessary updates on this page.
From Benjamin Lebwohl, MD, MS, Director of Clinical Research, The Celiac Disease Center at Columbia University
The bottom line is that we don’t have any direct evidence that people with celiac disease are at increased risk of developing severe consequences of COVID-19, but there is theoretical concern based on studies of other infections (including viral infections such as herpes zoster, an influenza). These prior studies show that people with celiac disease are at slightly increased risk of these conditions, or of more severe manifestations of these conditions. At the same time, it is reassuring that these increased risks are small, and so do not justify any additional precautions separate from those of the general population.
So my hope and expectation is that any increased risk of COVID-19 related complications in people with celiac disease, if present, will be very small. Certainly there’s no evidence to support additional precautions beyond what is advised to the general population at this time.
Data Collection Efforts
Since data about celiac disease and COVID-19 needs to be collected, we have introduced two new surveys in Go Beyond Celiac. One asks about the implications of COVID-19 on the celiac disease community whether or not they have been diagnosed. The other is specifically for people who have been diagnosed with COVID-19.
There is also an international effort to collect clinical data from physicians treating patients with celiac disease and COVID-19. That information is being collected here and is for physicians to fill out.
People with celiac disease who are otherwise healthy are not immunocompromised and not at higher risk for coronavirus. According to the CDC, people who are at higher risk are older adults and people with serious chronic medical conditions, such as heart disease, diabetes and lung disease. Currently, there is no evidence that children are more susceptible.
The immune system of someone with celiac disease activates in response to gluten when it shouldn’t. The immune system is over-active rather than suppressed. In contrast, the immune system of someone who is immunocompromised doesn’t react when it should. It is less effective at fighting off germs like those causing the flu and the coronavirus. Treatments such as chemotherapy, certain drugs for autoimmune conditions, steroids and some conditions (like AIDS), suppress the immune system’s response. Therefore, people with those conditions or taking those treatments are more at risk.
If you are taking corticosteroids and other immunosuppressant medications, you are at increased risk for coronavirus. While not typically used for celiac disease, these medications are often used to treat other autoimmune diseases, such as rheumatoid arthritis and lupus, which those with celiac disease are at higher risk of also having.
The CDC says the data from China suggest that those with diabetes (a common celiac disease comorbidity), heart disease, and lung disease are all at higher risk of getting more sick from coronavirus.
Acknowledging that there is no specific research data available, it follows that if celiac disease is carefully controlled and a strict gluten-free diet is in place, the immune system will have returned to a state similar to the rest of the population, and therefore the susceptibility to COVID-19 should not be different from that of the general population. If celiac disease is in its active stage, and a strict gluten-free diet is not observed (as in the case of those who are undiagnosed or those who continue to have accidental or intentional gluten exposure), the immune system is over-activated by the presence of gluten. Such over-activation of the immune system will make a person more susceptible to any viral infection, including COVID-19. Because more research is needed, we are collecting information about how COVID-19 impacts people with celiac disease through our Go Beyond Celiac database. With your feedback we can better understand the interplay between celiac disease and COVID-19 infection.
If you are not sick, it is still important to take precautions that will keep you from contracting coronavirus. Current recommendations from the CDC include:
In general, it could be useful to have a small stockpile of food on hand, in case you or a family member gets sick and you can’t go to the grocery store. This may be especially important for people with celiac disease and other gluten-related disorders so that they are ensured that there is food safe for them to eat if they were to be quarantined.
It can also be helpful to make sure you are getting timely refills of your prescription medications and have a small supply of gluten-free cold and flu type medications.
Coronavirus symptoms include fever, cough, and shortness of breath. (Learn more about the symptoms associated with COVID-19.)
According to the CDC: Call your doctor: If you think you have been exposed to COVID-19 and develop a fever and symptoms, such as cough or difficulty breathing, call your healthcare provider for medical advice.
Over-the-counter cold and flu medications may be helpful to relieve symptoms. Gluten in medications is a worry for those with celiac disease. For over-the-counter medications, you may be able to review the active and inactive drug ingredients either in the store or online. More information is available on our website about key ingredients that may contain gluten.
If you feel like you may have the coronavirus, you stay at home as long as you have mild symptoms. Call your healthcare provider before seeking medical attention, unless it is an emergency.
The CDC recommends that you stay at home, and do not go to school or work or use public transportation. As much as possible, stay away from others in your household, especially those at increased risk. If you must go out in public or be in the same area as someone else, wear a facemask to prevent the spread of the virus.
Cover your mouth with a tissue if you cough or sneeze, and dispose of tissues in a lined trash can. Continue to wash your hands frequently, especially after coughing, sneezing, and blowing your nose.
More information from the CDC is available here: https://www.cdc.gov/coronavirus/2019-ncov/about/steps-when-sick.html
If you become more sick and have more urgent symptoms, such as having trouble breathing, you should seek medical attention. Call your healthcare provider before going into the office, and wear a face mask to avoid spreading the virus to others at the office.
You may want to also discuss the gluten-free food safety measures with your hospital ahead of time so you know whether you need to bring your own safe foods or not. However, do not let this process delay you in getting to a hospital if you need to.
Nonessential travel is not recommended at this time. Cancelling travel plans is a decision that should be made based on where you are traveling and your health condition. If you are traveling overseas, the State Department lists travel warnings for each country on their website.
Updated information about the spread of the coronavirus in the United States is available from the CDC.
CDC recommends that travelers avoid all nonessential travel.
The Department of State advises U.S. citizens to avoid all international travel due to the global impact of COVID-19.
If you must travel, be sure to take steps to help prevent getting and spreading COVID-19 and other respiratory diseases during travel. For the most up-to-date COVID-19 travel information, visit CDC COVID-19 Travel page.
Airplane air filters can filter out particles as small as the coronavirus, but travel presents a risk that you may come into contact with someone who is sick. Frequent hand washing and use of hand sanitizer is recommended.
Follow all government regulations regarding travel.
October 2020 update: A study found that those with celiac disease are NOT at increased risk of contracting covid-19. At this time, there is no compelling scientific evidence to indicate that you are at greater risk to contract COVID-19. There is research that indicates that viral infections may trigger the onset of celiac disease, but no scientific evidence that having celiac disease “per se” increases risk of contracting a virus.
According to the CDC: “Older adults and people who have severe underlying chronic medical conditions like heart or lung disease or diabetes seem to be at higher risk for developing more serious complications from COVID-19 illness.” You may be at higher risk because of one of these factors.
You may also be at greater risk of contracting COVID-19 if you have other diseases associated with suppression of the immune system or requiring treatments that suppress the immune system (e.g., corticosterois, TNF inhibitors, etc.)
Regardless of whether you are in a higher risk group or not, Beyond Celiac recommends that you adhere to the recommended guidelines from the CDC to maintain your health and the health of others, including hand washing, not touching your face and keeping a social distance of 6 feet. If you feel ill, stay home. If you have a dry cough and fever, follow the guidance of your local health agency for whether and how to get tested for COVID-19.
When you get glutened, your immune system reacts to the gluten in the same way it would to a germ. At this time, there’s not compelling scientific evidence that shows that the reaction to gluten keeps your immune system from responding to other threats, including virus infections, or amplifies the immune response to a viral threat . Nevertheless, we recommend that you continue to carefully avoid getting glutened.
Yes, hand sanitizer is safe for those with celiac disease to use. Most hand sanitizers do not contain gluten. Additionally, research has found that gluten cannot be absorbed through the skin. So as long as you do not apply it to an open wound and you’re taking care to not ingest it, hand sanitizer should be safe. If you have a reaction to a hand sanitizer, consider an alternate culprit like an allergic reaction instead of gluten. The CDC recommends washing your hands with soap and water, but if they are not available, use a hand sanitizer with at least 60% alcohol.
A number of common viral infections are already suspected as possible reasons celiac disease develops, including enterovirus, reovirus and Epstein-Barr. Covid-19 is too new to know if it will cause autoimmune diseases to develop/be triggered in those at risk of developing them. Future research is needed to answer this question definitively, however, a study did show a link between respiratory viral infections, such as coronavirus, and the development of the autoimmune disease rheumatoid arthritis.
Selective immunoglobulin A (IgA) deficiency is a genetic immunodeficiency condition in which individuals do not make or have very low blood levels of IgA antibodies. It is estimated that 1 in 500 people have selective IgA deficiency. Diagnosis can be established through a blood test measuring immunoglobulin levels in blood serum. For some with IgA deficiency, the condition is ‘silent,’ meaning they have no symptoms, however for others it is associated with a heightened risk of infections, allergies, asthma and autoimmune diseases. Some affected by IgA deficiency face serious health issues such as chronic infections or diarrhea. You are considered at heightened risk if you have IgA deficiency. If you were diagnosed with IgA deficiency, you should consult your physician for further guidance.
Malfunctioning spleen, called hyposplenism, can be the result of chronic deficiency of folic acid and has been documented in celiac disease.
The spleen, a small, fist-shaped organ in the upper left part of the abdomen protected by the rib cage, is a filter for the blood as part of the immune system. It clears pathogens from the bloodstream and helps control infection.
“People with celiac disease who also have a malfunctioning spleen can be at higher risk of any infection, including COVID-19,” said Salvatore Alesci, MD, Beyond Celiac chief scientist and strategy officer. However, the connection between celiac disease and malfunctioning spleen has not been extensively investigated in studies that follow patients over a long period of time, called longitudinal studies. “Of course, there have been no specific studies on COVID-19 and malfunctioning spleen in general,” Alesci noted.
Also, while chronic deficiency of folic acid is common in those who have celiac disease, it does not always lead to hyposplenism. Typically, the lack of folic acid is managed with a vitamin that contains folic acid.
Even in people with a normal spleen, viral infections might cause the spleen to over function leading to enlargement, which is often asymptomatic. However, it may also be associated with pain in the left abdomen that may spread to the shoulder. Fatigue, anemia and easier bleeding can also occur. It is not known if COVID-19 could cause this, but everyone should be on the look out for these symptoms, especially if they have a malfunctioning spleen.
A cytokine storm is a relatively rare event which can occur in several types of infections and autoimmune disorders. It is a “hyper-response” of the immune system, with “over-production” of immune cells and inflammatory molecules including cytokines, which among other things can accumulate in the lungs, explains Salvatore Alesci, MD, PhD, Beyond Celiac chief scientist and strategy officer. This leads to inflammation and fluid build-up and increases the risk of mortality in affected patients, he said. Cytokine storm has been reported in a subgroup of patients with severe COVID-19.
A cytokine storm is marked by the magnitude of the immune response, including the speed, quantity and variety of cytokines and immune mediators involved. During a cytokine storm, the entire immune system is activated, and the body is flooded with high levels of primarily pro-inflammatory cytokines.
Although cytokines play a role in the autoimmune response of celiac disease, there are significant differences with cytokine storm events, such as those observed in COVID-19. In celiac disease, the magnitude of cytokine release following an autoimmune response triggered by gluten is not as intense and does not produce as severe a response. Also, there is no scientific report of a cytokine storm observed in celiac disease, said Ken Kilgore, PhD, MBA, Beyond Celiac chief scientific investment officer. A cytokine storm would be like water coming out of a fire hose, while cytokine activation in celiac disease would be more like water coming out of a faucet, Kilgore noted.
You can read more about the cytokine storm in COVID-19 here.
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