LDS and Allergic Disease

child sneezes from allergies

People with Loeys-Dietz syndrome (LDS) are more likely than others to have allergic diseases like allergies, eczema, asthma, and eosinophilic gastrointestinal disease.

How do you know if you have an allergic disease? What to do if you have one? Keep reading to find out.

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    Allergic disease and LDS

    People with Loeys-Dietz syndrome are more likely than the general population to have an allergic disease such as:

    • Food allergy;
    • Environmental allergy;
    • Eczema;
    • Asthma;
    • Eosinophilic gastrointestinal disease (eosinophilic esophagitis, gastritis, colitis)

    Comorbidity of allergic disease (the presence of two or more allergic diseases in the same person) is common, especially in children. Treatment for these conditions may vary from person to person. Always ask your doctor before changing your medication or treatment plan.

    If your child has an allergic disease, reading about it may help them to identify with others and learn more about their body and feelings. 

    • For picture books, click here
    • For other books, click here or here

    What is an allergy?

    Your immune system helps to protect your body from potentially harmful substances. It reacts to antigens, foreign substances like bacteria, viruses or parasites, by creating proteins called antibodies. Specific antibodies fit and bind to specific antigens and help your body to eliminate the foreign substance. As part of this process, your body may produce certain physical features (runny nose, fever, etc) known as symptoms

    When you experience an allergy or allergic reaction, your immune system is reacting to an antigen (substance) that most people do not react to. These antigens (substances) are called allergens and include animals, pollen, dust, mold, and certain types of food. Depending on where your body is exposed to the allergen, you may experience symptoms on your skin, in your airways, or in your gastrointestinal tract.

    What is the difference between allergies and intolerances?

    Allergic diseases are conditions (like allergies) where the immune system reacts to an allergen and symptoms can range in severity and location in or on the body.

    Intolerances and sensitivities (such as lactose intolerance and non-celiac gluten sensitivity) are not caused by an immune response. Instead, they occur when an individual has difficulty digesting certain proteins or foods. They typically result in symptoms that are mild and are located in the gastrointestinal tract.

    What is a food allergy?

    A food allergy occurs when your immune system reacts to an allergen that is a food. The most common food allergies are to eggs, nuts, shellfish, soy, cow’s milk, and wheat.

    People with LDS are more likely than the general population to have a food allergy. In fact, food allergies are found in approximately 31% of people with LDS, compared to 6% of children and 2 to 4% of adults without LDS.

    Food allergies can produce a range of symptoms, from mild to severe. Symptoms usually develop within seconds or minutes of eating a food, but can take hours or days to appear.

    Mild symptoms include:

    • Skin symptoms: flushed, itchy or slightly swollen skin;
    • Gastrointestinal symptoms: bloating or stomach discomfort;
    • Respiratory symptoms: a small cough (however, a small cough is considered a severe respiratory symptom in people who have asthma).

    Mild symptoms can be treated with antihistamines.

    Severe symptoms can be life-threatening and include:

    • Skin symptoms: hives (especially hives that spread) or swelling that makes it difficult to swallow or breathe;
    • Gastrointestinal symptoms: diarrhea, vomiting, severe cramping, or pain;
    • Respiratory symptoms: uncontrollable cough, wheezing, or shortness of breath;
    • Circulatory symptoms: dizziness, confusion, fainting, pale skin, or fingertips or lips that become slightly blue.

     An allergic reaction with severe symptoms is referred to as anaphylaxis or an anaphylactic reaction. These reactions can be caused by foods as well as medications, dyes, and insect venom. Anaphylactic reactions can be life-threatening and should be treated immediately with an epinephrine injector and a call to emergency medical services like 911.

    Caution: Using epinephrine injectors in people with LDS

    Because of its effect on the circulatory system, an epinephrine injector should only be used to treat anaphylactic reactions or life-threatening symptoms (not mild symptoms) in people with LDS. Ask your cardiologist and allergist about exactly when to use an epinephrine injector.

    What is an epinephrine injector? An epinephrine injector is about the size of a marker or deck of cards and is usually injected into your thigh. It contains epinephrine (also known as adrenaline) that constricts blood vessels, increases blood pressure, and expands airways to counteract severe allergic symptoms.

    Diagnosing a food allergy

    To test for food allergies, your doctor or allergist may use:

    • a blood test to look for specific antibodies in your blood;
    • a skin-prick test to observe your immune system’s reaction to specific antigens. They may place food particles on your arm, prick your skin to expose your immune system to the food, and wait to see how your skin reacts. If your skin becomes red, itchy, or swollen in response, you are likely allergic to the food;
    • a food elimination diet to track your symptoms while certain foods are eliminated from and then reintroduced to your diet.

    Even if your symptoms are currently mild, they can become more severe over time. If you or your child has experienced any symptoms of a food allergy, ask your doctor about getting tested.

    Emergency Preparedness

    If you or your family have food allergies, it is important to prepare for an emergency medical situation.

    We suggest that each person with a food allergy carries an Emergency Alert Card and, if needed, an epinephrine injector. Your doctor may also recommend medical identification jewelry like a bracelet or necklace.

    If you have children or teenagers, our School Packet can help to inform and communicate with their school. Older children, teenagers, and adults should be aware of their allergies, understand how to avoid them, and be prepared to handle reactions or ask others for help.

    Resources:
    • For a peer mentorship program for children 7 to 15 years old, click here.
    • For teen resources, click here.
    • For food allergy support groups for adults, click here.

    What is an environmental allergy?

    An environmental allergy occurs when your immune system reacts to an allergen in your environment, such as pollen from trees, weeds, or grasses, pet dander or saliva, dust mites, or mold.Some outdoor plants and molds release allergens like pollen and spores at specific times of the year and cause a type of environmental allergy known as a seasonal allergy

    Environmental allergy symptoms include a runny nose, sneezing, itching, headaches, fatigue, shortness of breath, and wheezing. If you have asthma, you may experience these symptoms more severely, and they may be life-threatening.

    If you suspect that you or your child has an environmental allergy, ask your doctor about getting tested. To test for allergies, your doctor or allergist may use a blood test or a skin-prick test.

    To minimize allergy symptoms, consider the following ways to minimize your exposure to allergens:

    To limit your exposure to pollen:

    • Keep windows closed when at home or driving;
    • If you have a forced air furnace, use a high efficiency particulate air (HEPA) filter. Clean filters often and clean air ducts yearly;
    • Avoid letting clothes air dry. If possible, dry clothes in the dryer;
    • Limit walks in forested areas and gardens;
    • Stay indoors when pollen counts are highest (from 5:00 am to 10:00 am and on days that are dry, hot, and windy);
    • Wear a mask when gardening or mowing the lawn;
    • Shower and change clothes when coming inside.

    To limit your exposure to pet dander and saliva:

    • If possible, avoid having pets in your home, or allow only hypoallergenic pets;
    • Do not allow pets on furniture or in your bedroom;
    • Bathe, brush, and comb pets frequently;
    • Close bedroom vents or air ducts;
    • Vacuum frequently;
    • Choose window shades or blinds instead of long, fabric drapes;
    • Limit the number of throw rugs in your home and wash throw rugs regularly;
    • If you have a forced air furnace, use a high efficiency particulate air (HEPA) filter. Clean filters often and clean air ducts yearly.

    To limit your exposure to dust mites:

    • Wear a mask when vacuuming and vacuum twice a week;
    • Wash your bedding weekly in hot water (over 130 degrees F);
    • Avoid down-filled pillows and bedding;
    • Do not keep stuffed animals on your bed;
    • Do not sleep on the bottom bunk of a bunk bed;
    • Choose window shades or blinds instead of long, fabric drapes;
    • If possible, choose hardwood flooring or low pile carpeting instead of thick carpeting
    • Limit the number of throw rugs in your home and wash throw rugs regularly;
    • If you have a forced air furnace, use a high efficiency particulate air (HEPA) filter. Clean filters often and clean air ducts yearly.

    To limit your exposure to mold:

    • Use dehumidifiers in the most humid areas of your house (basements, garages, compost piles, and crawl spaces). Keep the humidity below 50 per cent and clean these areas often;
    • Avoid leaving wet, clean clothes in the washing machine;
    • Avoid letting clothes air dry. If possible, dry clothes in the dryer;
    • Avoid mulch, hay, and raking leaves;
    • Use mold-killing products to clean shower curtains and bathroom floors;
    • Limit the number of indoor plants you own as damp soil can allow mold to grow;
    • Limit the number of throw rugs in your home and wash throw rugs regularly;
    • If you have a forced air furnace, use a high efficiency particulate air (HEPA) filter. Clean filters often and clean air ducts yearly.

    Environmentally allergy symptoms can be treated with antihistamines. Other types of medication that treat nasal congestion, such as decongestants, can increase blood pressure and are generally not recommended in people with LDS. Ask your doctor about what is right for you.

    What is eczema?

    Eczema is a chronic inflammatory condition that causes red, itchy, dry, and/or scaly skin. There are several causes, including genetics, environmental triggers, chemical irritation, stress, problems with the immune system, or an allergic reaction.

    If your symptoms don’t go away, or begin to interfere with your life, talk to your doctor. Your primary care physician or dermatologist can examine your skin and evaluate your medical history to diagnose eczema. Since eczema triggers differ from person to person, your doctor may recommend a variety of moisturizers, medications, and therapies.

    While specific diets cannot cure eczema and eczema is not known to be caused by a food allergen, certain dietary and lifestyle changes can help to prevent or minimize outbreaks. Drinking water (about eight glasses daily), regular exercise, and an anti-inflammatory diet (high in vegetables and fish, and low in dairy, red meat, whole grains, flour, and sugar) may help.

    Resources:

    • For eczema resources for adults and children, click here.

    What is asthma?

    Asthma is chronic inflammatory condition that can make it difficult to breathe. If you have asthma, the muscles that surround your airways are more inflamed and sensitive than in others.

    When your body encounters an asthma trigger, the muscles surrounding the airways contract, the lining of the airways swells and produces mucus, the airways narrow, airflow decreases, and it can be difficult to breathe.

    What is an asthma attack?

    After encountering an asthma trigger, you may experience symptoms, known as an asthma attack, that include difficulty breathing and speaking, tightness in your chest, excessive coughing and wheezing, sweating, and lips or nails turning blue. An asthma attack can occur suddenly after exposure to a trigger, or can develop slowly over hours, days, or weeks.

    If you think you may have asthma, talk to your doctor. To diagnose asthma, they can perform a physical examination, test your lung function, and discuss your symptoms and family history.

    How do I treat asthma?

    To reduce asthma symptoms, it’s important to identify and reduce your exposure to triggers.

    Common allergic triggers include dust mites, pollen, animals, and mold. Common non-allergic triggers include air pollutants like smog or smoke, chemical fumes, strong-smelling products, exercise, and cold air.

    Your medical provider may prescribe medication to treat your asthma.

    • You may be prescribed a bronchodilator, which temporarily dilates or widens your airways during an asthma attack. As bronchodilators increase blood pressure, people with LDS should avoid frequent or long-term use of bronchodilators. You may be able to use one to treat a severe asthma attack; speak to your doctor about exactly when to use a bronchodilator.
    • Your doctor may also prescribe an inhaled corticosteroid to reduce the number and severity of asthma attacks you experience.
    • Be sure to discuss all your medications with your doctor. For example, some people with LDS take a class of medication called beta-blockers, which may worsen your asthma symptoms, and is important for your provider to know.

    A clear plan of action can help control your asthma symptoms. Visit Asthma Canada to download their Asthma Action Plan for kids and adults, and ask your doctor for help filling it out.

    Where does asthma come from?

    Researchers have not yet identified the cause of asthma. However, there are several risk factors that can increase your likelihood of developing asthma:

    • Genetics: asthma has been linked to over 30 genes. Other genes and environmental factors can affect these genes, affect their expression of certain proteins, and increase the chance of developing asthma.
    • Family history: children whose mothers have asthma are three times more likely to have asthma; children whose fathers have asthma are 2.5 times more likely to have asthma
    • Allergies: individuals with allergies, especially ones that affect the nose and eyes, are more likely to have asthma.
    • Premature birth: children born before 37 weeks of age are more likely to have asthma.
    • Lung infections: individuals who had a lung infection as a baby or young child are more likely to have asthma.
    • Occupational and environmental exposure: individuals who inhale certain dust particulates, gases, chemical and exhaust fumes, smoke or other airborne substances are more likely to have asthma.
    • Hormones: individuals experiencing the hormonal changes of menopause are more likely to develop asthma.
    • Obesity: obese individuals may experience more inflammation and breathing difficulties and may be more likely to develop asthma.

    Resources:

    • For an Asthma & Allergy HelpLine, click here.
    • To find an asthma clinic near you, click here.
    • For other asthma-related resources, click here.

    Tips for visiting your medical provider

    Track your symptoms and ask about treatment. Keep track of your allergic symptoms and their timing related to potential triggers (diet, outdoor activities, stress levels, interactions with animals, cleaning products, makeup, detergents, soap, time and temperature of a shower or bath, etc). Bring this list to your doctor to help identify what may be causing a reaction in you, and how to minimize those reactions in the future.

    Ask about diagnosis. Your medical professional can explain the different diagnosis options that exist for allergies, asthma, and eczema.

    Talk about your current medications and LDS. It’s important for your medical provider to be aware of all the medication you’re currently taking and to be aware of the effect different medications can have on people with Loeys-Dietz syndrome. Your medical provider will consider your current medications, LDS diagnosis, and medical history when suggesting new medications.

    This article mentions medications that are not recommended or are to be used with caution in people with LDS. You can find these medications within each allergic disease section: food allergies, environmental allergies, eczema, asthma.

    Prepare a list of questions to ask. Bring your questions to the appointment and be sure to write down the answers.

    Consider bringing someone with you to the appointment. A friend or family member can help to ask questions, advocate for you, and keep track of the information being discussed.

    Ask about booking a follow-up appointment. The next appointment may be based on standard timing or on how your symptoms progress.

    Current research on LDS and allergic disease

    Researchers continue to learn about allergic disease and how it impacts people with LDS.

    In the United States, Dr. Pamela Guerrerio and the National Institute of Allergy and Infectious Diseases (NIAID) are conducting a clinical trial (research conducted in humans) to learn more about food allergies and other allergic conditions.

    They will investigate substances in the body that could reveal how food allergies develop and change in a person over time. These substances include biomarkers (molecules in fluids or tissues) and pathways (series of actions taken by molecules).

    The researchers also aim to test new therapies for food allergies, investigate the impact of nutritional deficiencies on allergic disease, and explore the likelihood of having multiple allergic conditions.

    Dr. Guerrerio and the NIAID are currently recruiting participants and plan to complete the study by June 15, 2025. Participants include people affected and unaffected by Loeys-Dietz syndrome, food allergies, atopic dermatitis (eczema), and eosinophilic esophagitis. Learn more about participating in research and talk to your friends, family, and doctor about the impact it may have on you. Study details are available online or by email to Ellen Zekster at niaidfars@niaid.nih.gov with the subject line “NCT02504853, 150162, Natural History and Genetics of Food Allergy and Related Conditions”.

    Resources

    General resources:

    • For picture books for children on allergies, click here
    • For books for children on chronic illness, including allergies and asthma, click here or here
    • For peer support, visit a community-run, private Facebook group: Loeys-Dietz Families.
    • Forsigns and symptoms of LDS, check out our diagnostic Head to Toe.
    • For the Foundation’s resource directory, click here.
    • For the Foundation’s LDS helpline, call us at 1-888-LDS-FCAN.
    • For clinics familiar with LDS, click here.

    Food allergy resources:

    • For an Emergency Alert Card, click here. This card was created by the Loeys-Dietz Syndrome Foundation.
    • For the LDS School Packet, click here. This packet was created by the Loeys-Dietz Syndrome Foundation Canada.
    • For a peer mentorship program for children 7 to 15 years old, click here.
    • For teen resources, click here.
    • For food allergy support groups for adults, click here.

    Eczema resources:

    • For eczema resources for adults and children, click here.

    Asthma resources:

    • For Asthma Canada’s Asthma Action Plan, click for kids and adults.
    • For an Asthma & Allergy HelpLine, click here.
    • To find an asthma clinic near you, click here.
    • For other asthma-related resources, click here.

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