Frequently Asked Questions
Why is celiac so difficult to diagnose?
There are several reasons why celiac can be very difficult to diagnose. Often, it presents with seemingly unrelated symptoms – from fatigue and joint pain to anemia and infertility. It can also be confused with other conditions, such as irritable bowel syndrome, Crohn's disease, ulcerative colitis, bacterial overgrowth syndrome, intestinal infections, chronic fatigue syndrome and depression. Compounding the problem is the fact that many physicians simply were not educated on diagnosing celiac disease.
Is celiac usually diagnosed in children or adults?
You can be diagnosed with celiac disease at any age. In many cases, adults who are diagnosed have had the disease for years and not received a proper diagnosis. The Jefferson Celiac Center specializes in diagnosing and treating children and adults.
Can blood tests be used to diagnose celiac disease?
Yes, blood tests can be useful in diagnosing celiac disease. People with celiac have elevated levels of certain antibodies – that is, proteins that target the body's own cells or tissues. Blood tests can help determine if such antibodies are present. Antibodies include tissue transglutaminase, endomysial and giladin.
Another blood test that should be checked along with antibody testing is for IgA deficiency – something that occurs more commonly with celiac disease and can affect the reliability of the antibody testing.
Can blood tests alone confirm a diagnosis of celiac disease?
In a word, no. If the blood tests and symptoms suggest celiac disease, the next step is typically an upper endoscopy with small bowel biopsy – the best way to confirm a diagnosis of celiac. Through this procedure, tiny pieces of tissue are removed from the small intestine to check for damage to the villi (the tiny, finger-like protrusions of the small intestine). During this procedure, you are sedated, and the physician inserts a long, thin tube (endoscope) through the mouth and stomach into the small intestine. The physician takes a sample of tissue using instruments passed through the endoscope.
A biopsy is the best way to confirm the presence of celiac disease and to rule out other conditions that can mimic celiac disease.
What is the connection between the skin condition called dermatitis herpetiformis (DH) and celiac disease?
Dermatitis herpetiformis (DH) – an itchy, blistering skin condition – occurs in association with celiac disease.
The painful rash of DH may appear anywhere, but usually on the knees, elbows and/or buttocks. Interestingly, many individuals with DH do not have digestive symptoms of celiac disease. What's more, nearly half of those with DH do not test positive when their blood samples are analyzed. Even so, they almost always have the same intestinal damage as people with celiac disease.
DH is confirmed through a skin biopsy – the removal and testing of a small piece of skin near the rash. The presence of the IgA antibody confirms a diagnosis of DH and, by extension, celiac disease. Thus, if you have DH, you almost certainly have celiac disease. Though you would need to begin following a gluten-free diet, we would advise seeing our celiac disease specialists first, as additional baseline testing may be helpful for future management.
Who should be tested for celiac disease?
Among adults, the following individuals should be tested for celiac disease:
- Any person with dermatitis herpetiformis (DH)
- Any person with a first-degree relative with celiac disease (5 to 10 percent risk of celiac disease)
- Any person who has a related autoimmune disorder, even if there are no symptoms of celiac. Those disorders include insulin-dependent diabetes mellitus, Hashimoto's thyroiditis, Turner syndrome, Williams syndrome, Graves' disease and Sjögren's syndrome.
- Any person with Down syndrome.
- Any woman who has experienced recurrent miscarriages or infertility where no other medical cause has been identified.
- Any individual who has experienced persistent gastrointestinal symptoms, dental enamel hypoplasia, fatigue, bone density problems and other signs and symptoms.
Once you have been tested, is there ever a reason to be retested?
There are three factors that combine to cause celiac disease:
- An over-responsive immune system
- A genetic predisposition to the disease
- Elements of your environment
We know for certain that people are born with the genes that make them vulnerable to developing celiac disease. We also know that gluten – a protein found in wheat, barley and rye – is what triggers the autoimmune response. However, the environmental factors present some unknowns. Some individuals can consume foods with gluten for years or even decades before developing the disease. In other people, celiac disease can be "silent," so while a person is eating foods with gluten and appears to be fine, he or she is not, in fact, healthy. Finally, most individuals with the genetic predisposition for getting celiac disease – even if someone in their family has celiac disease – will never develop the disease regardless of their diet.
The bottom line: Celiac can develop at any time in people with the genes for celiac disease, in people with a related autoimmune disorder (namely, insulin-dependent diabetes mellitus, Hashimoto's thyroiditis, Turner syndrome, Williams syndrome, Graves' disease and Sjögren's syndrome), and in people with Down syndrome. Thus, it is important for such individuals to be tested regularly. An early diagnosis can help prevent the development of other autoimmune diseases, as well as a variety of other complications of celiac.
Is there a way to screen for celiac?
Most screening is done with antibody testing, but occasionally genetic testing is helpful. Genetic testing can help determine whether or not an at-risk person carries the genes responsible for celiac disease. It turns out that one-third of the U.S. population has at least one of these two genes. Therefore, having the gene does not mean you have celiac disease, but it does mean you have the possibility of developing it at some point in your life.
First-degree relatives – parents, children and siblings – of someone with celiac disease have a 5 to 10 percent chance of developing the disease themselves and should be screened. If the genetic screening shows the presence of the genes that make someone vulnerable to get celiac, regular antibody testing should be performed to determine if and when the disease becomes active. Between testing, it is important to see your physician if symptoms suggestive of celiac disease develop.
Though some countries offer screening at birth, such as Italy, currently there is no "simple" way to screen for celiac disease in the U.S. population at large.
If celiac disease is suspected, should a person do a "trial" of a gluten-free diet?
It is not advisable to initiate a gluten-free diet without a medical evaluation. After a few months on this diet, the opportunity to establish a definite diagnosis may be lost because both antibody tests and the small intestine biopsy become normal. Knowing whether or not you truly have celiac disease has lifelong implications for your care and that of your first-degree relatives. Thus, waiting a few weeks and seeing your physician before going on a gluten-free diet is strongly recommended.
What is colonoscopy?
Food passes through the stomach and is digested in the small intestine. Here, nutrients are absorbed, then waste enters the colon, also known as the large intestine. The colon absorbs excess fluid and the final result is a formed bowel movement, which leaves through the anus.
Colonoscopy is an examination of the lining of the colon to look for abnormal growths called polyps, inflammation, bleeding sites or ulcers. It is used to understand why patients have symptoms such as abdominal pain, blood in the stool, weight loss or a change in bowel habits. The procedure is also performed to detect polyps and cancer in patients without symptoms. Most often, colon polyps do not cause symptoms, and this is why screening is recommended.
Colonoscopy is diagnostic and can be therapeutic. That is, if a polyp is found, it can be removed during the exam and sent to the lab to see if it contains cancer cells. Most polyps are benign (do not contain cancer), but virtually all colon cancer begins as a polyp. Therefore, removing polyps at an early stage is an effective way to prevent colon cancer.
When polyps are found at an early stage they are usually removed easily and completely. Polyps can grow and eventually contain cancer. When colon cancer is found at later stages it is often fatal.
What does colonoscopy prep involve?
Prior to the test, the patient undergoes a colon preparation to empty the colon. This can take one or two days, depending on each patient. The typical prep at Jefferson involves staying on clear liquids the day before colonoscopy. At noon on the same day, two laxative pills are taken. At 5 p.m., the patient consumes 1 liter of Gatorade, which includes a laxative powder. At 4 a.m. on test day, a second 1 liter dose of Gatorade mixed with laxative is taken. This liter must be completely finished so that the patient takes nothing by mouth for at least 3 hours before the procedure. This is to avoid the risk of aspiration (or inhaling any stomach contents that might be refluxed) of any fluid into the lungs.
It is also important that the patient consumes several liters of fluid throughout the day before the exam to stay well-hydrated, because the prep leads to frequent stools and even diarrhea.
In addition, talk to your doctor to get explicit instructions regarding any medication you are taking on a regular basis before preparing for colonoscopy. If you are taking a blood thinner such as Coumadin, adjustments have to be made to decrease the risk of bleeding. Other over-the-counter medications that can also thin your blood and should be discussed include aspirin and pain relievers, such as Advil®, Motrin®, Aleve® or any form of ibuprofen.
How is colonoscopy performed and how long does it take?
Colonoscopy is an outpatient procedure. Sedation is administered by a certified nurse anesthetist. This "conscious sedation" makes a patient very sleepy and relaxed, but it does not involve general anesthesia. While lying on the left side on a comfortable stretcher, the thin flexible tube is inserted through the anus and the entire colon is examined. There is a small video camera inside the scope that gives the physician a clear view, and pictures can be taken of any abnormal findings. Most often, the exam takes less than 30 minutes, but sometimes longer if multiple polyps are found.
Is there any pain or discomfort after the procedure?
Following the procedure, the patient remains in the recovery area for about one hour to ensure that the vital signs are stable and that he/she can tolerate juice and crackers without getting sick. The colon is insufflated with air during the exam, so some retained gas is common. The patient may experience cramping or bloating, and may pass gas for several hours. The average patient is fully recovered and back to a normal routine on the following day.
The doctor will talk to the patient and review the findings of the exam. The nurse will again read and review written discharge instructions from the doctor before the patient leaves the Endoscopy Unit. In rare instances a patient may develop side effects and should call the doctor immediately if experiencing any of the following:
- Severe abdominal pain
- Rectal bleeding
Because sedation is administered, each patient must be accompanied by a relative or friend at discharge. The restrictions following sedation include no driving for 24 hours and no drinking of alcohol for 24 hours.
At what age should colonoscopy begin and how often should it be repeated?
Studies suggest that age 50 is the time to begin routine screening to look for early signs of colon cancer. However, there are certain risk factors that lead some patients to begin colonoscopy at a younger age.
- A patient is at increased risk if a first-degree (parent, sibling, child) relative has had colon polyps or colon cancer. The formula determining the first screening exam considers the age when the affected relative was diagnosed. For example, if a parent is diagnosed at age 50, then screening should begin when the patient is 10 years younger. Here, the new patient would begin routine screening at age 40.
- A personal history of colon polyps or colon cancer
- A personal history of inflammatory bowel disease including Crohn's disease or ulcerative colitis
- A personal history of uterine or ovarian cancer before the age of 50
When the colonoscopy is repeated will be determined by the findings at the initial examination. If a patient has no polyps and no family history or other risk factors listed above, they are often instructed to return in 10 years. The important point to remember is that a patient should call his/her doctor and return immediately if he/she develops new symptoms or signs such as rectal bleeding, change in bowel habits or abdominal pain. A patient might also need repeat colonoscopy sooner if a new diagnosis of colon polyps or colon cancer is made in a family member.
If a patient has no polyps or cancer, but they have a family history of colon polyps or cancer, they will likely be asked to return for colonoscopy every five years.
For patients who do have colon polyps found during the exam, they will be asked to return at a time interval depending on how many polyps are found, how large they are and the pathology report. Each case will be discussed in great detail with the doctor who performed the colonoscopy exam. If multiple polyps are found, the exam may have to be repeated in three years. If a very large polyp is found, colonoscopy may even be repeated within one year to ensure that all the polyp tissue was removed.
Is surgery the only treatment needed?
When a polyp is removed by colonoscopy, it is usually the only treatment needed.
For colorectal cancer, surgery is the normal treatment and is often the only treatment needed when the cancer is detected early. In some cases, your specialist can remove the cancer using colonoscopy. Often, an open surgical procedure will be required. Treatment may also include radiation therapy before, during or after surgery; chemotherapy after surgery; or immunotherapy to strengthen the body’s immune system so it can attack and destroy cancer cells. These cancer treatments may be given separately or in combination. Your doctor will recommend the treatment methods best for you, depending on the size of the tumor, the stage of malignancy and whether it has metastasized, or spread, as well as other factors
If I have colorectal cancer, will I have to have a colostomy?
Usually not. Surgeons can almost always treat colon cancer by removing the cancerous part of the colon and joining the remaining two ends together. Other times, a procedure called a colostomy may be needed. In this surgery, the cancerous part of the bowel is removed, after which the surgeon creates an artificial opening in the abdomen, bypassing the lower colon and rectum for the elimination of body waste. The waste is collected in a special bag attached to the opening.
Usually, a colostomy is only temporary, to give your bowel time to heal. In fact, thanks to new medical and surgical developments in recent years, the need for permanent colostomies has been significantly reduced. Today, even patients with rectal cancer, whose only choice in the past was usually a permanent colostomy, have other options. Preoperative radiation therapy and innovative surgical techniques can treat cancer in the lower rectum without jeopardizing the natural function of the muscles that control bowel habits, thereby dramatically reducing the likelihood of needing a colostomy.
Will I have to come back after treatment?
Once you have been treated for polyps or, especially, colorectal cancer or its precursors, you must remain vigilant. Your doctor will want to use blood tests, as well as other screening tests described above, to watch for any reoccurrence, suspicious areas or warning signs of any additional cancer.
What are polyps?
Colon cancer is believed to begin as a small growth called a polyp. The colon, also known as the large intestine, has several continuous areas, and the lowest portion is called the rectum. Colorectal polyps are bumps or growths on the inside lining of the colon or rectum. Most colorectal cancer develops in or at the site of polyps. Since 90 to 95 percent of all colon cancers stem from polyps, removing them helps to prevent cancer.
What does it mean if polyps are found in your colon?
There are two types of benign polyps that are related to colon cancer.
- Hyperplastic polyps are usually very small and were formerly thought to not increase the risk of cancer. Now there is evidence to show that there is an increased risk of cancer if a patient has more than 30 hyperplastic polyps at the initial exam.
- If the polyps found are adenomas, there is an associated risk of colon cancer, and these patients need to be screened at least every five years because they are definitely at risk for forming new polyps, and it is imperative that repeat colonoscopy be done on a regular basis.
According to the statistics about 75 percent of cases occur in patients who have no predisposing risk factors.
If your doctor finds a small polyp, he or she will usually remove it, often in the same endoscopic exam. Even if the polyp does not appear cancerous, it may become cancerous; therefore, it is normally taken out. The Hospital’s lab will examine the polyp to see if it has any areas indicating cancer.
If your doctor sees a large polyp, tumor or other abnormality, the first step may be a biopsy. The specialist takes out a small piece of tissue through the colonoscope. Examining the tissue helps determine if the area is cancerous or benign, or the result of inflammation.
Your medical team may use a follow-up colonoscopy procedure to remove small, limited areas of precancerous or early- cancerous tissue or discrete tumor. For more significant or established cancer (higher-stage cancer), abdominal surgery may be necessary.
Do I need a second opinion?
Polyp removal is a widely accepted preventive step; however, treatment decisions for actual colorectal cancer can be more complex. Before starting such treatment, patients might want another doctor to review the diagnosis and the treatment plan. Here are ways to find another doctor for a second opinion:
- Patients can call the Jefferson Cancer Network at 1-800-JEFF-NOW.
- Ask your doctor to suggest a specialist.
- Contact a local medical society, nearby hospital or medical school.
Are polyps common?
Colon polyps are common. Studies suggest that at least 30 percent of middle-aged people in the U.S. have colon polyps and others quote findings up to 50 percent of people over 60 years of age.
The risk of developing colon cancer is increased by the size and number of polyps found at the initial exam and following exams. If a polyp is larger than 1 centimeter, there is a greater risk that it contains cancer cells.
What is a gluten-free diet?
When following a gluten-free diet, you must avoid all foods and beverages that contain wheat (including spelt, triticale and kamut), as well as foods with rye and barley. The same holds true for any products that you might apply to your lips or mouth, such as lipstick, lip balms and even toothpaste. It is not unusual to feel upset about not being able to eat some favorite foods – such as bread, pasta and baked goods. However, there are many gluten-free bread and pasta options on the market today. And you can continue to prepare baked goods; just use bean, potato, rice or soy flour instead of wheat flour. Also, keep in mind that there are many healthful and delicious foods that are naturally free of gluten. Examples include plain meat, fish, rice, fruits and vegetables.
Does a gluten-free diet cure celiac disease?
There is no "cure" for celiac disease, but for most people with this condition, a gluten-free diet helps keep the disease in check. Over time, most people's bodies will gradually heal from the damage that gluten caused prior to their diagnosis and initiation of the gluten-free diet.
Will I feel better when I am following a gluten-free diet?
For most people with celiac, a gluten-free diet provides some important benefits – including alleviation of symptoms and a general improvement in their sense of well-being. Of course, everyone is different, and how quickly you experience positive changes can depend upon how severe and long-lasting your symptoms were.
Also, it can take some time to achieve a truly gluten-free diet. It can be challenging to learn – and begin to avoid – foods and beverages with gluten. You could experience some setbacks along the way. But over time, you will become a "pro" at following a gluten-free diet – and are likely to feel better as a result.
If I have celiac, can't I "cheat" and eat gluten – just every now and then?
Absolutely not! Even a small amount of gluten will trigger the autoimmune response and can lead to serious complications of celiac disease. Don't fool yourself; that damage occurs even if you do not experience any obvious problems or symptoms after consuming gluten.
If I have celiac and feel OK without dietary restrictions, why should I follow a gluten-free diet?
It is quite possible to cause serious complications without experiencing any "obvious" signs or symptoms. If you have been diagnosed as having celiac disease, following a gluten-free diet is the only way to reduce the chance of the serious complications and related diseases that can occur in the long term.
What if I try the gluten-free diet but still experience debilitating signs and symptoms?
There are several possible explanations for this outcome. The most likely explanation: You are still getting some gluten in your diet, or it is entering your intestines in some other way you did not consider. Some of those other ways include medicines, lipstick, lip balm, mints or snack foods containing gluten. Another common problem is cross-contamination, such as sharing condiments with others who are not following a gluten-free diet or using a pot or a pasta colander that contains traces of gluten.
Another possibility is that you have another condition that is associated or unassociated with celiac disease. Some common associated conditions include lactose intolerance, requiring discontinuation of dairy products, or microscopic/collagenous colitis, which is a colon disorder treated with specific medications. An intestinal complication of celiac disease may also occur and require specialized diagnostic tools and treatment.
Through the Jefferson Celiac Center, you will benefit from the availability of state-of-the-art technologies allowing previously unobtainable access to the entire small intestine. The most current radiologic imaging with MRI and CT and advanced endoscopic procedures – including capsule endoscopy, single and double balloon enteroscopy and spiral enteroscopy – are all available. These allow both visualization and biopsy of the small intestine.
Finally, you might not really have celiac disease. As awareness of celiac disease is increasing, some have been incorrectly given this diagnosis without proper testing. Many other diseases imitate celiac disease.
What are some of the small-bowel complications of celiac?
There are a number of small-bowel complications that can occur among patients whose celiac was previously well-controlled or among newly diagnosed patients who are not getting better. The most common such complications include:
- Refractory sprue that is not responding to a gluten-free diet
- Jejunoileitis – an inflammatory condition of the small bowel
- Lymphoma and other cancers
How can I eat out on a gluten-free diet?
If you are following a gluten-free diet, you must be vigilant about what you eat at home and when you're out. At a restaurant, it is important to ask for a gluten-free menu and don't be afraid to ask the server about specific ingredients in order to avoid the risk of cross-contamination.
At first, it can be overwhelming to know which foods you can and cannot eat. But, in time, you will become an expert at knowing which foods are safe to consume, and you will find that certain restaurants provide a variety of gluten-free foods.
Here are some tips when you're eating out:
- Diners - Eggs, salads, grilled chicken, broiled fish and burgers without the bun can be made to order without gluten. Watch for Whirl (butter on grills). Skip the soups and sauces; they're frequently made with gluten-containing thickeners. Ask for oil and vinegar to use as salad dressing and hold the croutons. Ask if the restaurant has a fryer that is dedicated to French fries. Make sure gluten foods are not cooked in same grill as gluten free.
- Mexican - Watch the seasoning. Just ask for 100 percent corn tortillas to be substituted for the flour ones. Salsa, sour cream and guacamole are gluten free.
- Chinese - Soy sauce is made from gluten; order steamed food ONLY.
- Japanese - Some cooked Japanese dishes are prepared with gluten teriyaki or soy sauce, but feel free to enjoy sushi or sashimi and simply bring your own bottle of gluten-free soy sauce.
- Italian - Risotto is a naturally gluten-free entrée. Choose potatoes or rice. Some restaurants make gluten-free pasta. For dessert, enjoy fresh fruit or sorbet.
Many restaurants now advertise gluten-free selections, and you can often view their menus online:
Where can I find a list of foods that are gluten free?
It's important to know not only which foods and drinks are safe or off-limits, but also to know about ingredients and additives that may contain gluten. To help you and your loved ones learn the gluten-free ropes, you may wish to explore the diet and lifestyle resources of the Celiac Disease Foundation.
Why would I choose a minimally invasive procedure instead of a traditional surgery?
In many cases, minimally invasive procedures offer some significant advantages. Those advantages include less trauma during surgery and fewer complications after. With minimally invasive procedures, you typically enjoy a shorter hospital stay (or none at all), a faster recovery and less scarring. In fact, with many of these procedures, surgeons use Band-Aids® for dressings!
Why should I choose Thomas Jefferson University Hospital for my minimally invasive procedure?
Jefferson surgeons have been performing – and pioneering – minimally invasive procedures for over a decade. Today, we have many of our surgeons have extensive experience in minimally invasive diagnostic and treatment procedures covering a wide range of medical specialties. We have experts in advanced endoscopy in our Division of Gastroenterology and Hepatology. We have leading urologists who routinely use da Vinci® Surgery for prostatectomy. And our Jefferson Hospital for Neuroscience team includes surgeons who use minimally invasive techniques to treat hard-to-reach tumors of the brain and spine using stereotactic radiosurgery, cranial base surgery and endoscopic neurosurgery.
What is the difference between laparoscopic surgery and keyhole or Band-Aid® surgery?
The terms "laparoscopic surgery," "keyhole surgery" and "Band-Aid® surgery" are interchangeable. All refer to a family of minimally invasive procedures that use small incisions and some kind of laparoscope, or high-tech camera, to guide surgeons in performing the procedures through the tiny openings. These techniques can be used for a number of procedures, including common operations like removal of the gall bladder, removal of part of the colon and removal of the kidney.
How have Jefferson operating rooms been updated for minimally invasive procedures?
Jefferson has a range of surgical suites that have been outfitted with the tools and technologies needed for minimally invasive procedures. Jefferson Hospital for Neuroscience, for example, has state-of-the-art equipment for stereotactic radiosurgery. Similarly, the Jefferson Minimally Invasive Cranial Base Surgery and Endoscopic Neurosurgery Center uses the latest digital operating rooms – the first of their kind in the Delaware Valley.