These days, most of us have friends or acquaintances who are trying to eat a gluten-free diet. Gluten sensitivity has been tied to a number of conditions, including Attention Deficit Hyperactivity Disorder, migraines, Irritable Bowel Syndrome, and eczema, among other problems. But only one to three percent of the population has an actual auto-immune response to gluten that can cause life-long issues and complications. These individuals have Celiac Disease, a disorder characterized by an auto-immune reaction to even trace amounts of gluten. Gluten is found in products that contain wheat, barley and rye. When gluten products are eaten, their body reacts by attacking the villi, small brush-like fingers in the upper intestine that are responsible for absorbing nutrients. The villi become damaged by ongoing inflammation and irritation, which can ultimately lead to extreme malnutrition and even death.
Celiac disease is hereditary and up to 22% of patients have a first-degree relative with the disease. The disease affects approximately 1 in 100 people. It is not uncommon for one member of a family to discover that they have the disease, which then leads to the diagnosis for their parent, child or sibling. The condition can pop up in childhood, but many individuals do not have symptoms until adulthood. Most people that have celiac disease are undiagnosed, or have been misdiagnosed for years. Some studies estimate that more than 75% of Americans with celiac’s are undiagnosed. The average time between onset of symptoms and diagnosis for Celiac patients is over seven years. Men and women are equally affected, and celiac disease is found in all races, at all ages. If not treated, celiac disease can lead to neurological disorders, other auto-immune diseases, and even cancer.
People with Celiac Disease commonly have other autoimmune diseases, including:
- Type I diabetes
- Autoimmune liver disease
- Autoimmune thyroid disease
- Rheumatoid arthritis
- Sjogren’s syndrome
- Addison’s disease
The link between celiac disease and these diseases may be genetic in nature.
There are over 300 symptoms associated with Celiac Disease, which is part of the reason that it can be so difficult to diagnose. Celiac Disease can cause a number of gastrointestinal and digestive symptoms in children, including chronic diarrhea, vomiting, weight loss, bloating and unexplained abdominal pain, fatty and pale or unusual stools, and cramping. Infants may fail to thrive, causing their parents significant concern. Older children may exhibit delayed growth due to ongoing malnutrition, abdominal distention, short stature, delayed puberty, hormonal imbalances, irritability and emotional problems, and unexplained fatigue.
In adults, celiac disease may not cause any digestive problems until the condition is highly advanced. Adults may have a strange array of symptoms that are easily brushed off or attributed to other conditions. Typical symptoms for adults include migraines, seizures, joint pain, arthritis, osteoporosis, fatigue, anxiety and depression, alopecia (hair loss), and allergic rhinitis. Adults may also have severe anemia, caused by iron-deficiency, that does not respond to treatment with iron tablets. Women may experience an irregular menstrual cycle, infertility issues, or miscarriages. Celiac disease can also affect the skin, causing painful canker sores in the mouth, and dermatitis herpetiformis, which is an itchy red rash that looks like insect bites.
Fortunately, there is a much wider recognition of celiac disease among medical professionals. If you or a member of your family are experiencing any of the symptoms listed above, it makes sense to be screened for celiac disease antibodies. Your physician will most likely order a tTG-IgA test. Make sure you eat gluten products in the weeks before the test, equivalent to consuming four or more pieces of wheat or rye bread, otherwise your body will not be producing the antibodies and will not lead to accurate test results.
If you test positive for the antibodies, then your physician will order an endoscopy with a biopsy as a means of confirming the diagnosis. . The test is done on an outpatient basis by a gastroenterologist. Under light anesthesia, a probe or scope with a small camera is sent via the mouth down through the esophagus, stomach and to the small intestine. Most gastroenterologists recommend taking several different samples of the duodenal, including one sample from the duodenal bulb. These samples analyzed to see if the intestine lining or villi are damaged, or if there are other signs of inflammation typical with celiac’s. Then, a pathologist will examine the tissue samples and assign a Marsh classification, as follows:
- Marsh 0 – The intestinal lining is unaffected, meaning that celiac disease is not detected. This is also known as the pre-infiltrative stage.
- Marsh I – The epithelial cells that are on top of the lining are covered in white blood cells or lymphocytes. Many other gastrointestinal issues lead to the same condition, so this is not a definitive diagnosis.
- Marsh II – There are lymphocytes, as well as ‘hyperplastic’ or larger than normal, depressions surrounding the villi.
- Marsh III – This stage includes lymphocytes, hyperplastic crypts, and atrophy of the villi. This means that the villi are becoming smaller and are atrophying or becoming flatter. There are three types of Marsh III including partial, subtotal and total atrophy. Most celiac patients with active symptoms present as Marsh III classification.
- Marsh IV – At this point the villi are almost nonexistent, and completely flattened. They are incapable of absorbing adequate nutrition.
For most patients, endoscopy is the only way to confirm a diagnosis. However, patients that have dermatitis herpetiformis (DH) can be diagnosed through a skin biopsy of the rash. A dermatologist or physician will remove a little bit of flesh near the rash, and test for IgA. If positive, this skin biopsy is a definitive diagnosis of celiac.
Celiac is a chronic and lifelong condition that can only be treated by complete avoidance of all gluten products for life. Even small, trace amounts of gluten will create ongoing auto-immune issues, and continued damage to the small intestines. But a strict gluten-free diet will allow the small intestine lining and villi to heal, and may even reverse the atrophy. Many patients experience a near-complete recovery after following a stringent diet that does not include any gluten products. In most cases, medication is not required to treat celiac disease. Individuals who have dermatitis herpetiformis will require a medication like pyridine or dapsone to treat the rash, in addition to a gluten-free diet. But once eating only gluten-free foods, the skin rash will typically fade.
A gluten-free diet could be described as follows:
- Avoid all foods with wheat. Such food includes bread, cereals, pasta, and baked goods as cakes, roux and salad dressings.
- Avoid goods and food rich in barley. This includes beer, malt vinegar, food coloring, soups and malt.
- Avoid food and drinks rich in rye. This includes rye beer, cereals and rye bread such as pumpernickel.
- Avoid taking meals that include rice, corn, millet and buckwheat.
The doctor may also advise you to avoid cow milk and any other meal cooked with it until your intestinal walls heal. You may then reintroduce milk in your diet gradually following the doctor’s prescription. You can still eat eggs, meat, fish, fruits and vegetables.
Most newly diagnosed celiac patients have vitamin and mineral deficiencies, including insufficient calcium iron, vitamin D, zinc, folate, and the B vitamins. Other complications may include osteoporosis, so a bone density scan may be ordered, especially for women.
It is extremely important for new celiac patients to make an appointment with a nutritionist or dietitian to understand how to embark on a gluten-free life. Gluten is hidden in an astonishing array of modern food products, and it will be very important to read the label of every product consumed to make sure it does not contain gluten. The internet is rife with information about gluten-free diets, but this can be overwhelming and confusing to new patients. Both the National Institutes of Health and the Academy of Nutrition and Dietetics strongly recommend consulting with a registered dietitian upon diagnosis with celiac disease.
A celiac disease consultation will typically include an assessment, nutritional education and advice, and ongoing monitoring to ensure continued improvement. The assessment starts with a thorough review of the patient’s medical records and gastrointestinal symptoms, including blood tests, to look for nutritional anemias and vitamin deficiencies. The dietitian will also meet with the patient to determine any lifestyle issues that need to be considered. For example, a person who travels extensively and needs to eat out at restaurants frequently will have different challenges than someone who primarily eats at home and has greater control over the ingredients in their meal.
Following the assessment, the dietitian will write up a plan for a gluten-free diet, including any nutritional supplements or vitamins that are needed. This can include a gluten-free shopping list, weekly meal plans, and recipes. It is also important to be able to recognize the many ‘hidden’ sources of gluten, including artificial color, caramel color and flavoring, citric acid, dextrins, diglycerides, emulsifiers, food starch, stabilizers, maltodextrin and modified food starch, to name a few. The dietitian will provide advice on how to read food labels to ensure that the products are truly gluten-free.
Another problem for celiac’s is the potential for cross-contamination. This means that even though the food is gluten-free, it may be contaminated by contact with gluten products. A prime culprit is the toaster, where crumbs from regular bread can attach themselves to the gluten-free bread. Even a crumb of gluten can cause continued problems and inflammation for celiac patients. Other sources of cross-contamination include deep fried foods cooked in the same oil, shared jars of condiments, jam or peanut butter, and bulk bins at grocery stores. A dietitian can be extremely helpful in identifying the many types of cross-contamination.
Finally, a dietitian will offer ongoing monitoring and evaluation of your progress, and can request blood tests or lab work to confirm that unwanted gluten is not sneaking into your diet.
The Dietitians in Gluten Intolerance Disorders provides a list of dietitians and celiac resource centers at www.mnpgdpg.org, or www.glutenfreedietitian.com also offers dietitians listed by state.
Poorly Responsive Celiac Disease
Even after following a gluten-free diet, some celiac patients have persistent symptoms. Causes of this can include microscopic colitis, ulcerative colitis or Crohn’s and require a colonoscopy. Pancreatic insufficiency is another reason for continued symptoms, and leads to reduction in the digestive enzymes needed to digest food. Celiac patients also have a higher incidence of lactose intolerance. Treatment of poorly responsive celiac disease is highly individualized, and may require steroids or immunosuppresants, along with additional dietary modifications.
Living with Celiac Disease
Most celiac patients can expect to live a long and healthy life. The key is lifelong adherence to a strict gluten-free diet. However, this is not always easy to achieve. Here are some ideas to help you stick to the plan:
Plan in Advance
Work with a nutritionist to create a gluten-free shopping list for a week long meal plan. Then when you go to the store, you won’t have to spend time reading all the labels. The meal plan should include breakfast, lunch and dinner recipes, along with two gluten-free snacks per day. There are a wide variety of tasty gluten-free products available these days, so there is no reason to be bored with your meals.
Gluten-Free Camps for Kids
It’s hard to be a kid who can’t eat pizza! It can be extremely difficult to monitor everything that your child eats, especially during parties, sleepovers, and holidays. One way to combat this is by sending your child to a gluten-free camp, sponsored by the Celiac Disease Foundation. There they will get to learn more about their condition, while having fun and enjoying delicious gluten-free meals and snacks.
List of Gluten-Free Restaurants
Many restaurants (even pizzerias!) have expanded their menu offerings to include gluten-free items. Here are just a few national restaurants that have a gluten-free menu. Outback Steakhouse, PF Chang’s, Applebee’s, Claim Jumpers, Fuddruckers, the Melting Pot, Buffalo Wild Wings, and Pizza Hut. Check out our list of gluten-free restaurants.
Other Possible Sources of Gluten That Should be Avoided
Gluten can be found in things that you may not expect. You could find it in:
- Industrial products such as lipstick
Great care has to be exercised when dealing with things that can be ingested into the body through the mouth. When visiting the hospital for treatment of other diseases, it is good to let your doctor know if you have Celiac disease or not in order to be prescribed drugs that are gluten free. Sources of vitamins have to be checked to reduce the risk of risk of coming in contact with gluten. It is best to use fruits as a source of vitamins.
Various industries use food products to manufacture their products. A perfect example is lipstick manufacturers. It is a good practice to watch out for such. Some companies usually give warnings in their products. You should always check products before buying them for these warnings, for example watch out for such phrases as:
- “Modified food starch.”
- “Hydrolyzed vegetable protein.”
The Celiac Disease Foundation offers dozens of gluten-free ideas including recipes for breakfast, appetizers, salads, soups, dinner entrees, desserts, and special occasion meals. They even have a section for kid-friendly options. Check them out their gluten-free recipes. Another great source of recipes is provided by the Celiac Disease Foundation’s interns, who are young and living on a tight budget. Some of their latest recipes include Cheesy Ratatouille, Five Step Stir Fry, Brownie Cookies, and Mini Pizzas. Take a look at some of their great ideas for affordable and delicious gluten-free meals at www.youngandglutenfree.com.
A positive attitude is essential to living successfully with celiac disease. Consider joining a support group, or a celiac association and spend time with other people who are living with this disease. Start your own recipe exchange, and consider hosting gluten-free potlucks in your neighborhood. You’ll be surprised how many people share your condition, and will appreciate the opportunity to try new and delicious gluten-free meals. Educate yourself with the help of a dietitian, to make sure that you stay on track. Remember, the only treatment for celiac disease is strict adherence to a 100% gluten-free diet.