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“Gluten free.” It has quickly become the latest food fad, even for people without celiac disease. But for the estimated 3 million adults and children with the autoimmune disorder celiac disease, simply giving up gluten-containing products and choosing tasty alternatives isn’t enough. Patients diagnosed with celiac disease need expert care and guidance to help navigate their dietary and treatment options and manage the disorder, as well as associated nutritional problems.
Celiac disease has a genetic component, meaning that it can run in families. It can be triggered or becomes active for the first time after surgery, pregnancy, childbirth, viral infection or severe emotional stress.
In celiac disease, gluten – found in wheat, barley and rye – begins to affect the lining of the small intestine and predisposes you to malabsorption of nutrients and causes multiple symptoms, including abdominal discomfort. Over time, it can lead to bone disease and has been associated with several conditions, including osteoporosis, depression, thyroid disease and foggy thinking. In addition, people with celiac disease can develop a variety of health problems caused by uncontrolled damage and inflammation of the small intestine, and the inability to absorb nutrients from food. These include anemia, refractory celiac disease and very rarely, intestinal lymphoma.
Celiac disease can interfere with your life and cause many other conditions. It is crucial that you seek appropriate professional help if you are experiencing any symptoms. The Allegheny Center for Digestive Health Celiac Center offers the area’s only multidisciplinary center for the comprehensive management of celiac disease. Your care is coordinated care by a comprehensive team that includes:
- Gastroenterologist for diagnosis and medical care
- Registered celiac dietitian for supervised gluten-free diet plan and guidance
- Physician who specializes in nutrition
- Clinical psychologist for effective support services
- Celiac community support organization
Together, this group will work closely with you through diagnosis, dietary changes, genetic concerns, cancer risks and disease management of celiac disease.
Celiac Center: 412.359.8956
Erie residents call: 814.452.2767
Celiac disease has long been under-diagnosed because it can be difficult to recognize. Some of its symptoms are similar to those of other diseases, such as irritable bowel syndrome, chronic fatigue, inflammatory bowel disease and intestinal infections. However, diagnosis rates are increasing as a result of increased awareness, a better understanding of celiac disease and the availability of reliable blood tests and small intestine biopsies.
Celiac symptoms vary from person-to-person. Common digestive symptoms include:
- Cramp-like abdominal pain
- Chronic diarrhea
- Nausea and weight loss
Some patients may not have digestive symptoms, but instead experience unexplained:
- Bone or joint pains
- Bone loss
- Numbness in hands and feet
- Menstrual disturbances
- Mouth sores
- Skin rash
Tests & Diagnosis
To determine if you have celiac disease, a gastroenterologist reviews your medical history and will have you undergo any of the following tests:
Blood tests are used for screening to detect celiac disease even if you have mild or no symptoms at all. Elevated levels of certain antibodies (substances) in your blood indicate that you have an immune reaction to gluten. Your blood can be tested for IgA TTG-antibodies (tissue transglutaminase) or EMA (endomysium antibodies) for screening. There are a variety of other tests available for further evaluation.
Upper gastrointestinal endoscopy is a thin, flexible tube with a light and camera at the end of it that is fed toward your small intestine so that a physician can view the upper part of your gastrointestinal tract. The physician may also take tissue samples (biopsy) to analyze any damage.
Screening for celiac disease is beneficial because it can run in families. First degree relatives (parents, brothers or sisters, and children) have a 1 in 22 chance of also having celiac disease. It is recommended that first degree relatives be screened. Screening is done with a blood test for the IgA TTG antibody. If this is positive, then a biopsy is recommended. If it is negative, it should be repeated every three to five years after the blood test can be ordered by a physician at the AHN Center for Digestive Health or by your primary care physician.
There is no cure for celiac disease, but it can be controlled. A life-long gluten-free diet is the only proven effective treatment for celiac disease. Small amounts of gluten can trigger symptoms and damage your intestinal lining. We recommend that you work on a gluten-free diet plan under the supervision of a specialized celiac dietician, who can teach you about great-tasting products, what ingredients to look for on labels, shopping tips, how to choose meals at restaurants, and how to have a better quality of life. We want to help you live life without feeling like you have strict limitations.
About 80 to 90 percent of people who follow a gluten-free diet notice an improvement in their symptoms after a few weeks to a few months. However, healing of the small intestine may take months to years. When it does heal, inflammation of the intestine subsides, and it can absorb nutrients from food.
With a gluten-free diet, elevated celiac disease antibodies (TTG antibodies or EMA) start to trend down. To monitor response to your gluten-free diet, we check these antibodies approximately every six months until they become normal. For those who continue to have symptoms (and to monitor healing), a follow-up endoscopy may be done.
Additional support is sometimes needed because you may show no improvement on a gluten-free diet. Typically, this is because small amounts of gluten are still being consumed in hidden sources, such as modified food starch, preservatives and stabilizers made with wheat. Other food products, including corn and rice products are produced in factories that also manufacture wheat products and may be contaminated with wheat gluten.
One of the most important aspects of living with celiac disease is learning how to take care of yourself. Below are informational resources to help you transition to a gluten-free lifestyle.
ALWAYS tell the server that you are gluten-free. Don't assume that any food is fine. For example, breakfast restaurants may put pancake batter (which may contain gluten) in their omelets, but how would you know that? Also, ask if your food can be prepared gluten-free without cross contamination. For instance, your food can’t be prepared on a table where there if flour. Placement of your food there will contaminate it with gluten.
Ask about breading, sauces, etc. Let them know that you cannot have Worcestershire sauce, soy sauce and thickeners. If the server says, "Gluten free – what is that?" you may want to reconsider where you are dining. Urbanspoon.com can offer your “gluten-free” restaurant options in your area.
Staying with the plan
Managing celiac disease is a lifelong commitment. Here are ways to follow through:
- Get treatment. Without it, you can develop complications.
- Stick to your diet. The only treatment for celiac disease is a strict, gluten-free diet for the rest of your life.
- Consider getting involved in a local celiac disease support group.
- Take a daily gluten-free multivitamin
- See your eye doctor for regular exams on yearly basis.
- Inform all of your healthcare providers that you have celiac disease
- Avoid the use of NSAID’s (like aspirin, naproxen, ibuprofen etc.) as much as possible.
- Encourage family members to be tested for celiac disease.
- Get a pneumococcal vaccine. Some adults with celiac disease have a poorly functioning or nonfunctional spleen, which is a risk factor for developing a pneumococcal infection. For this reason, you should get immunized.
- Maintain adequate dietary vitamin D and calcium intake. Vitamin D3 or cholecalciferol is the best form to take as a supplement. Consult your dietician for specific details.