Celiac disease (CD) is an autoimmune disorder that causes damage to the small intestines and disrupts the absorption of nutrients from food. As food passes through the small intestine, small finger-like projections from the intestinal wall called villi, absorb the nutrients into the body. We all have millions of these villi in our intestines and they play a vital role in getting adequate amounts of nutrition from the foods we eat. People with celiac disease have intolerance to gluten, which is a protein found in wheat, rye, and barley and is in a number of different foods and products. Gluten can also be present in medications, vitamins, lip balms, and other products. Celiac disease causes an abnormal immune reaction to gluten, resulting in inflammation in the small intestine that makes the villi shrink and flatten, resulting in malnourishment regardless of how much food is eaten. Celiac disease is not a food allergy that might be out grown. Celiac disease is a genetic autoimmune disease that currently has no pharmaceutical cure.
Between 2 and 3 million people in the United States are believed to have celiac disease, although 95% of people with celiac disease are undiagnosed or misdiagnosed with other conditions. Often times it is confused for irritable bowel syndrome, iron-deficiency anemia, diverticulitis, chronic fatigue syndrome, or intestinal infections. With more reliable blood tests and genetic testing, diagnosis rates for celiac disease are increasing. For people with an immediate relative with celiac—a parent, sibling, or child—the likelihood they will have the condition is between 5% and 15%. Often times, the disease is triggered after childbirth, pregnancy, viral infection, surgery, or severe emotional stress. People with celiac disease are at a higher risk of developing other disorders, including infertility, reduced bone density, liver disease, neurological disorders, certain types of cancer, and other autoimmune diseases.
A gluten-free diet is the only treatment for celiac disease. Gluten comes from wheat, rye, and barley, so it is present in any foods made with any of these ingredients, which includes most grains, pastas, cereals, and many processed foods. Wheat gluten contamination in other food products is also a concern because often times corn and rice products are processed or packaged in the same facilities as wheat products. It is important to look for gluten-free products. Even with these foods excluded, it is possible to have a diverse, well-balanced diet. Soy, rice, potato, buckwheat, quinoa, amaranth, and bean flour are all alternatives to traditional wheat flour. A number of gluten-free products are being created and carried in mainstream stores. Fish, rice, fruits, vegetables, and “plain” meat do not contain gluten, so they can be eaten by people with celiac disease.
Working with a dietitian who specializes in food and nutrition and has experience helping people with celiac disease is often the first step to learning how to manage your condition. One of the most important things you will need to learn is how to read ingredient labels on packaged food products. Avoiding gluten can be very challenging, especially when dining out or traveling, so it is important to learn how to read labels and ask questions about what is in the food you eat and how it is prepared.
For most people, dietary changes to avoid exposure to gluten will stop symptoms, give the intestine time to heal and repair damage and control their condition. If dietary changes do not work, it is most likely due to continued exposure to gluten. Many products are made in the same factories that process wheat products which could cause cross contamination of gluten. There could also be hidden sources of gluten in preservatives, medications, vitamins, and other products. In some rare cases, dietary changes will not stop continuing damage to the intestines. This condition is called refractory celiac disease. For these people, the injuries to their intestines are so severe it cannot heal, continuing their malnutrition, and often requiring them to receive intravenous nutrients.
One of the things you can do to manage celiac disease is start tracking your diet, symptoms, medications, and more. HealtheHuman provides an integrated suite of health trackers and personal health record (PHR) tools to help you track, understand, and manage all aspects of celiac disease. With an extensive set of charting and reporting features, you can easily share your information with your doctors, dietitians, and other health advisors as you progressively get your condition under control.
Key Health Information to Track for Celiac Disease
Eliminating all gluten from your diet is the only way to treat celiac disease, which starts by creating a detailed log of everything you are eating and drinking. The Diet and Nutrition Tracker in HealtheHuman helps you keep a daily food diary. We have a database of over 40,000 different foods to search from including ingredients for many of the popular packaged goods. A number of reports are available to quickly share your information with your dietitian or doctor.
Digestive symptoms are often associated with celiac disease. They include abdominal pain, intestinal gas, cramping, chronic diarrhea, and constipation. Often times the bowel movements for people with celiac disease are pale, foul-smelling, or fatty stool (steatorrhea). Changes in your bladder and bowel movements can be indicators of changes in your disease, either good or bad. HealtheHuman provides a detailed tracker for your bladder and bowel movements, including a number of flags to watch for important changes. A series of reports and charts provide ways to quickly analyze and share your information with your doctors, dietitian, or other health advisor.
While some people experience no symptoms, many people with celiac experience a range of symptoms, often beyond digestive problems. Symptoms more common in adults include fatigue, iron-deficiency anemia, bone or join pain, numbness or tingling in the hands and feet, canker sores in the mouth, skin rashes, bone loss (osteoporosis), depression, migraines, and seizures. Both men and women might experience infertility issues. Women might experience missed menstrual periods and have recurrent miscarriages. For young children with celiac disease, they might have a delayed puberty. Tracking your symptoms can provide valuable insights into what makes your condition better or worse. This can be particularly valuable when you are trying to get your diet under control or have introduced new foods or drinks. The Symptom Tracker feature helps you create detailed daily logs of all your symptoms, allowing you to rate them from 1 to 10 for each hour of the day. Powerful charting tools help you see your symptom levels throughout the day, identify spikes, and investigate potential causes.
Malnutrition is one of the primary concerns for people with celiac disease. Your doctor will likely order various tests to monitor for nutritional deficiencies, inflammation levels, and other indicators. During diagnosis, your doctor might also order blood tests for anti-tissue transglutaminase antibodies (tTGA) or anti-endomysium antibodies (EMA) which are proteins that react with your own body’s cells and tissues and are frequently at higher levels for people with celiac disease. There are also tests to measure your body’s response to gluten. Testing of folic acid, B12, and iron might also be common to check for anemia. You can track all of your lab results in HealtheHuman, including a number of features for creating charts and reports of your values over time. Looking for changes in your lab test results over time can be valuable to monitor improvement in your condition or to identify potential flare-ups even without symptoms.
Whenever you are managing a chronic condition like celiac disease, keeping accurate and up to date records of all your medications, supplements, and vitamins is important information to share with your doctors and other health specialists. For celiac disease, you should also ensure that the medications, vitamins, and supplements you are taking do not contain gluten, which is occasionally used as a filler or additive. Check with your pharmacist to see if any of your prescriptions contain gluten. The Medication Tracker and Supplement Tracker make it easy to keep records of all your medications and vitamins, as well as detailed daily logs of when you are using them. All of this information is automatically added into your Medication History and can be linked to your Health Advisor History (doctors, dietitians).
Some people with celiac disease report unexplained weight loss at the onset of the condition, which would be expected with reduced absorption of nutrients and fats in the intestines. Children with celiac can experience problems with normal growth patterns, causing delayed or stunted stature. The Body Measurement Tracker can be used to log all of your key measurements, including charts and reports to highlight changes.
Women with celiac disease can see changes in their menstrual cycles, including missing periods. Issues with infertility and recurrent miscarriages are also possible. Regular tracking of your cycles can help you see if your body is functioning normally or if the disease is potentially interfering with other aspects of your health. The Women’s Health Tracker helps you track your ovulation, menstruation and other details relating to your menstrual cycle.
Stress is hard on your mind and body. Often times the first onset of celiac disease comes with a stressful event. High levels of stress, especially over a prolonged period of time, can make your symptoms worse, so you should try to keep your stress levels low when possible. You can log your stress levels throughout the day, including sources of the stress, using the Stress Tracker. Logging your stress levels might help identify trends so you can make lifestyle changes to improve or avoid stressful situations.
When you are learning how to manage your condition, it can be very helpful to create detailed logs of everything you ate and how you felt throughout the day to identify potential causes. Even after you have your condition under control, flare-ups are going to happen, usually related to accidentally getting gluten in your diet, a stressful event, or catching a cold or flu. One of the benefits of using a software tool like HealtheHuman to log all of your health information in one place is that it is easy to look at all your information for a given day and see what was happening. The Event Tracker is a feature in HealtheHuman than helps you create chronological timelines of significant events in your health, like a flare-up of symptoms from celiac. You can create events, add in the details of your diet, medications, supplements, symptoms, and much more, quickly creating detailed reports of the incident for your analysis or to share with your doctors and advisors.
Keeping your doctors informed on your medical history is an important part of your care, and could have an impact on their course of treatment. There are also a number of other conditions that might result from untreated celiac disease, often caused by long-term malnutrition. Conditions like vitamin and mineral deficiencies, iron deficient anemia, osteoporosis, osteopenia, vitamin K deficiency, central nervous system disorders, pancreatic problems, intestinal lymphomas, GI cancers, gall bladder malfunctions, or neurological problems are all potentially related to untreated or refractory celiac disease. Sharing any previous or existing conditions with your doctor might provide valuable diagnostic and treatment information. Make sure to provide your physicians and other health advisors with as much detail on your past medical conditions, procedures, surgeries, hospitalizations, or any other relevant aspect of your health. All of the features in HealtheHuman help you build and share a comprehensive personal health record and history with all your health advisors.
Other Things You Can Do To Help Manage Celiac Disease
Tracking your health information is most valuable when this information helps you have more effective and meaningful visits with your doctors, specialists, and other health advisors. Maintaining regular appointments with your treating physicians and specialists is vital to your long-term success managing celiac disease. It is important to keep your appointments with your doctor and to provide as much detail as possible to help make their treatment accurate and effective.
One of the most important skills you will need to effectively manage your celiac disease is to learn how to read labels for any ingredients that contain gluten. For starters, look for anything that says gluten, like hydrolyzed wheat gluten or vital wheat gluten. Next, look for any ingredient that has the word wheat, rye, or barley. Next you will need to check for types of flour, like enriched flour, whole wheat flour, atta flour, bleached flour, bread flour, brown flour, graham flour, granary flour, strong flour, unbleached flour, and whole-meal flour. Some of the other ingredients you need to search for include bran, beer, yeast, bulgur, Chilton, couscous, spelt, farina, Fu, germ, malt, orzo, pasta, and semolina. There are other ingredients and specialty foods that you will need to learn, but it all starts with reading the labels and understanding the ingredients.
For many people managing celiac disease, the best way to eliminate gluten from their diet is to use whole foods and prepare their own meals. More consumer packaged goods providers are adding gluten-free labels to their foods. However, as of November 2011, the FDA has not set or enforced standards for how much gluten is acceptable to use this marking. For the most part, foods marked gluten-free have no gluten or extremely low trace amounts, less than 20 parts per 1,000,000, or 20 ppm.
Celiac disease can affect the enamel on your teeth. It is important to see your dentist on a regular basis to ensure your teeth and gums remain healthy. Issues with your mouth and gums, like gingivitis, can increase the inflammation levels in the body as well, which could exacerbate your symptoms.
For many people with celiac disease, it can feel isolating and overwhelming, especially right after diagnosis. Not being able to dine out or participate in certain social events can be difficult. Additionally, with so many necessary changes in your diet and lifestyle to control your condition, talking to people who are struggling with the same disease can be very valuable and comforting. There are a number of support groups for people with celiac disease, online and potentially in your community. Talk to your doctor or other health care provider about support groups in your area.
Medical Disclaimer: All information on this site is of a general nature and is furnished for your knowledge and understanding only. This information is not to be taken as medical or other health advice pertaining to your specific health and medical condition.