Celiac Disease: What You Need to Know & What to Do

What is Celiac Disease?

Celiac disease is a chronic autoimmune disorder that affects the small intestine. When people with celiac disease consume gluten, a protein found in wheat, barley, and rye, their immune system reacts by damaging the lining of the small intestine. This immune response damages the villi—tiny finger-like projections lining the small intestine—which are crucial for nutrient absorption. This damage hinders the absorption of essential nutrients, leading to various health problems. Over time, this damage can lead to malnutrition, anemia, osteoporosis, and other serious health problems.

Celiac disease is hereditary, meaning that it runs in families. People with a first-degree relative with celiac disease (parent, child, sibling) have a 1 in 10 risk of developing celiac disease. Celiac disease can develop at any age after people start consuming gluten. Left untreated, celiac disease can lead to additional serious health problems.

 Celiac disease can present a wide range of symptoms, including:

• Digestive Issues: Chronic diarrhea, constipation, bloating, and abdominal pain.

• Systemic Symptoms: Fatigue, weight loss, anemia, and delayed growth in children.

• Neurological and Psychological Symptoms: Headaches, depression, anxiety, and numbness in the hands and feet.

Celiac disease is diagnosed through blood tests that detect specific antibodies and a biopsy of the small intestine to confirm villi damage. A strict, lifelong gluten-free diet is the only treatment for celiac disease.

Key Differences Between Gluten Intolerance and Celiac Disease

1. Immune Response:

   • Celiac Disease: Involves an autoimmune response where the immune system attacks the small intestine.

   • Gluten Intolerance: Does not involve an autoimmune response or intestinal damage.

2. Intestinal Damage:

   • Celiac Disease: Causes damage to the villi in the small intestine, leading to nutrient malabsorption.

   • Gluten Intolerance: Does not cause visible intestinal damage.

3. Diagnosis:

   • Celiac Disease: Diagnosed through blood tests and an intestinal biopsy.

   • Gluten Intolerance: Diagnosed based on symptoms and by ruling out celiac disease and wheat allergy; there is no definitive test.

4. Treatment:

   • Celiac Disease: Requires a strict, lifelong gluten-free diet to prevent complications.

   • Gluten Intolerance: Symptoms are managed by avoiding gluten, but the severity of the reaction may vary, and some individuals may tolerate small amounts of gluten.

5. Long-Term Health Impact:

   • Celiac Disease: Untreated celiac disease can lead to serious long-term health issues, including malnutrition, osteoporosis, and increased risk of certain cancers.

   • Gluten Intolerance: Generally does not lead to long-term damage but can cause significant discomfort and affect quality of life if not managed.

Gluten intolerance and celiac disease are both conditions that necessitate avoiding gluten, but they differ significantly in their underlying mechanisms, symptoms, and long-term health implications. Understanding these differences is crucial for appropriate diagnosis and management. For those experiencing symptoms related to gluten ingestion, consulting with a healthcare provider is essential for proper evaluation and to determine the most suitable dietary approach.

Testing for Celiac Disease

1. Initial Consultation

• Symptom Discussion: Your healthcare provider will start by asking about your symptoms, such as digestive issues, fatigue, and any family history of celiac disease or related autoimmune conditions.

• Physical Examination: The doctor may perform a physical exam to check for signs like weight loss, malnutrition, or skin rashes associated with celiac disease.

2. Blood Tests

• Serology Tests: These tests measure specific antibodies in your blood. High levels of certain antibodies, like tissue transglutaminase antibodies (tTG-IgA), suggest an immune response to gluten, which is common in people with celiac disease.

• Total IgA: Since some people have low IgA levels, which can affect the accuracy of tTG-IgA tests, doctors often check total IgA levels to ensure the results are reliable.

Important Note: It's crucial to continue eating gluten before and during testing. If you avoid gluten, the antibodies might not show up in your blood, leading to inaccurate results.

3. Biopsy

• Why It’s Needed: If blood tests suggest celiac disease, the next step is usually an endoscopy. This procedure allows the doctor to look directly at your small intestine and take small tissue samples (biopsies) to check for damage caused by gluten.

• The Procedure: During an endoscopy, a thin, flexible tube with a camera is passed through your mouth into the small intestine. The doctor will take several small tissue samples to examine under a microscope for damage typical of celiac disease, such as villous atrophy (flattening of the lining of the small intestine).

4. Genetic Testing (Optional)

• HLA-DQ2 and HLA-DQ8 Genes: Genetic testing can be done to see if you carry the genes associated with celiac disease. While these genes are common in people with celiac disease, not everyone with these genes will develop the condition. However, if you do not have these genes, celiac disease can be ruled out.

• When It’s Used: Genetic testing is sometimes used when the diagnosis is unclear, or if family members of someone with celiac disease are being tested.

5. Follow-Up Testing

• Response to a Gluten-Free Diet: After a diagnosis, following a strict gluten-free diet should lead to symptom improvement and intestinal healing. Your doctor may repeat blood tests to see if antibody levels have decreased, which indicates that your body is responding well to the diet.

• Monitoring for Complications: Ongoing follow-up care may include monitoring for nutritional deficiencies or other complications associated with celiac disease.

Understanding the Results

• Positive Diagnosis: If your blood tests and biopsy results are positive, you’ll be diagnosed with celiac disease. Your doctor will guide you on starting and maintaining a gluten-free diet.

• Negative Diagnosis: If your tests are negative but you still have symptoms, your doctor may explore other conditions like non-celiac gluten sensitivity or irritable bowel syndrome (IBS).

Why is it Important to Stay Gluten-Free When You Have Celiac Disease?

• Prevents Symptoms: Eating gluten can cause a range of symptoms, including abdominal pain, diarrhea, fatigue, headaches, and skin rashes.

• Improves Nutrient Absorption: A gluten-free diet helps your small intestine heal, which improves the absorption of nutrients from food.

• Reduces Complications: Long-term exposure to gluten can lead to serious complications like osteoporosis, infertility, neurological conditions, and an increased risk of certain cancers.

What Foods Contain Gluten?

• Wheat Products: Bread, pasta, cereals, cookies, cakes, and pastries.

• Barley: Often found in malt, soups, and beer.

• Rye: Common in bread and cereals.

• Processed Foods: Many processed foods, sauces, and even candies can contain gluten as an additive or filler.

Naturally Gluten-Free Foods

• Naturally Gluten-Free Grains: Rice, quinoa, millet, buckwheat, and corn.

• Fruits and Vegetables: All fresh fruits and vegetables are naturally gluten-free.

• Proteins: Meat, poultry, fish, eggs, beans, legumes, and nuts.

• Dairy: Milk, cheese, yogurt, and butter are safe unless flavored or processed with gluten-containing ingredients.

• Gluten-Free Products: Look for specially labeled gluten-free breads, pastas, and snacks.

Tips for Maintaining a Gluten-Free Diet

1. Read Labels: Always check food labels for gluten-containing ingredients.

2. Avoid Cross-Contamination: Use separate utensils, cookware, and toasters to prevent gluten contamination.

3. Plan Meals: Prepare meals at home to control ingredients and avoid accidental gluten exposure.

4. Educate Others: Inform friends, family, and restaurant staff about your need for a gluten-free diet.

5. Find Support: Join a celiac support group to share tips and experiences with others who have the same condition.

Here's a list of common foods that contain gluten to avoid for individuals with celiac disease or gluten sensitivity:

1. Wheat (including all varieties such as durum, semolina, spelt, farro, kamut)

2. Barley

3. Rye

4. Triticale (a cross between wheat and rye)

5. Bulgur

6. Couscous

7. Oats (unless certified gluten-free due to potential cross-contamination)

8. Pasta (unless gluten-free)

9. Bread (unless gluten-free)

10. Cereals containing wheat, barley, or rye

11. Beer (unless specifically labeled gluten-free)

12. Wheat-based flour tortillas

13. Croutons

14. Breadcrumbs and breaded foods

15. Wheat-based sauces and gravies (e.g., soy sauce, teriyaki sauce, hoisin sauce)

16. Some processed meats and meat substitutes (check labels for added fillers or breading containing gluten)

17. Some soups and soup bases

18. Some candies and sweets (check labels for wheat ingredients or potential cross-contamination)

19. Some salad dressings and marinades

20. Some condiments (e.g., malt vinegar, some mustard brands)

It's important to carefully read ingredient labels and look for gluten-free certification when purchasing packaged foods, as gluten can sometimes be hidden in unexpected products or ingredients. Additionally, cross-contamination can occur during food preparation, so it's essential to communicate dietary needs when dining out or consuming foods prepared by others.

Here's a list of common foods and products that may contain hidden sources of gluten:

1. Soy sauce and soy sauce-based products (unless labeled gluten-free)

2. Teriyaki sauce

3. Worcestershire sauce

4. Malt vinegar

5. Some salad dressings (check labels for wheat ingredients or malt vinegar)

6. Gravies and sauces (thickened with flour)

7. Imitation seafood (e.g., imitation crab meat)

8. Processed meats and meat substitutes (e.g., sausages, hot dogs, veggie burgers - check for fillers or breadcrumbs containing gluten)

9. Soups and soup bases (some may contain wheat-based thickeners)

10. French fries (if coated or seasoned with flour)

11. Potato chips and other snack foods (check for malt vinegar seasoning or wheat-based flavorings)

12. Candy and sweets (check labels for wheat ingredients or potential cross-contamination)

13. Ice cream and frozen desserts (check for additives or flavorings containing gluten)

14. Processed cheese spreads and cheese products (check for added ingredients)

15. Medications and supplements (some may contain gluten as a filler or binding agent)

16. Cosmetics and personal care products (some lip balms, lotions, and other products may contain gluten-derived ingredients)

17. Play-dough (some brands contain wheat flour)

18. Communion wafers (traditionally made with wheat flour)

19. Some herbal supplements and vitamins (check labels for gluten-containing ingredients)

20. Some sauces and marinades (check labels for wheat-based ingredients or malt vinegar)

Always read ingredient labels carefully, and when in doubt, contact the manufacturer to verify if a product is gluten-free. Additionally, look for products that are certified gluten-free to ensure they meet strict gluten-free standards and minimize the risk of cross-contamination.

Here’s a list of hidden gluten-containing ingredients that individuals with celiac disease should watch out for:

1. Modified food starch (unless specified as gluten-free)

2. Hydrolyzed vegetable protein (HVP)

3. Textured vegetable protein (TVP)

4. Maltodextrin (unless specified as gluten-free)

5. Caramel color (may contain barley malt)

6. Dextrin (unless specified as gluten-free)

7. Natural and artificial flavors (may contain gluten-based additives)

8. Soy sauce (unless specified as gluten-free tamari or soy sauce)

9. Malt extract, malt flavoring, or malt vinegar

10. Stabilizers and thickeners like dextrin, modified food starch, and hydrolyzed plant protein

11. Emulsifiers like mono- and diglycerides (may be derived from gluten sources)

12. Fillers in medications and supplements (check with a pharmacist)

13. Processed meats and deli meats (may contain gluten fillers or seasonings)

14. Seasoning blends and spice mixes (check for hidden gluten ingredients)

15. Salad dressings and sauces (thickening agents may contain gluten)

16. Imitation seafood (such as imitation crab meat)

17. Soups and broths (thickening agents may contain gluten)

18. Ice cream and frozen desserts (check for gluten-containing additives)

19. Processed cheese products (may contain gluten fillers)

20. Some alcoholic beverages (beer, certain types of wine coolers, flavored spirits)

Always verify with the manufacturer or opt for products labeled as gluten-free to ensure safety for individuals with celiac disease.

Cross-contamination refers to the unintentional transfer of gluten from gluten-containing foods or surfaces to gluten-free foods. For individuals with celiac disease or gluten sensitivity, even trace amounts of gluten can trigger symptoms and damage to the small intestine.

In the context of a gluten-free diet, cross-contamination can occur in several ways:

1. Shared cooking surfaces: If cooking surfaces, such as countertops, cutting boards, or cooking utensils, are used for both gluten-containing and gluten-free foods without proper cleaning in between, gluten particles from the gluten-containing foods can transfer to the gluten-free foods.

2. Shared cooking equipment: Kitchen appliances like toasters, grills, and deep fryers can retain gluten residues from previous use. If these appliances are not thoroughly cleaned or dedicated gluten-free versions are not used, gluten can be transferred to gluten-free foods during cooking.

3. Bulk bins and scoops: In grocery stores or bulk food sections, scoops used for gluten-containing grains (such as wheat flour or barley) may also be used for gluten-free grains (such as rice or quinoa), leading to cross-contamination.

4. Condiments and spreads: Shared jars of condiments, spreads, or dips can become contaminated if used with utensils that have touched gluten-containing foods (e.g., spreading butter on regular bread and then dipping back into the jar).

5. Deep-fried foods: Even if a food item itself is gluten-free, if it is fried in oil that has been used to fry gluten-containing foods without being changed, cross-contamination can occur.

6. Bulk packaging: Sometimes, gluten-free products may be packaged alongside gluten-containing products, leading to the potential for cross-contamination from airborne gluten particles or residues on packaging surfaces.

To minimize the risk of cross-contamination and ensure a gluten-free diet, individuals with celiac disease or gluten sensitivity should:

• Use separate cooking utensils, cookware, and appliances for gluten-free foods or thoroughly clean them between uses.

• Avoid shared condiments or spreads unless dedicated gluten-free versions are used.

• Be cautious when dining out and communicate their dietary needs to restaurant staff.

• Read labels carefully and look for products that are certified gluten-free.

• Choose certified gluten-free oats to avoid potential cross-contamination with wheat, barley, or rye during processing.

• Be mindful of hidden sources of gluten and inquire about ingredients or preparation methods if unsure.

• Regularly educate themselves about safe gluten-free practices and sources of gluten contamination.

Staying Healthy on a Gluten-Free Diet

 • Balanced Nutrition: Ensure you get a variety of foods to provide all essential nutrients. Include fiber-rich foods like fruits, vegetables, and gluten-free grains.

• Vitamins and Minerals: Sometimes, you might need supplements to address deficiencies, especially during the initial phase of your gluten-free diet. Consult with a healthcare provider.

• Stay Hydrated: Drink plenty of water to aid digestion and overall health.

• Regular Check-Ups: Schedule regular visits with your healthcare provider to monitor your condition and nutritional status.

 Living with celiac disease requires diligence and careful dietary management, but it’s entirely possible to lead a healthy and active life. By sticking to a gluten-free diet, you can manage your symptoms, promote healing, and prevent long-term complications.

 Remember, your health is worth the effort, and many delicious, gluten-free foods are available to help you enjoy your meals while staying safe.

 For more gluten-free resources and gluten-free recipes, visit https://celiac.org/