FAQ for Patients - Adults
1. What are the symptoms of Celiac Disease?
Celiac disease can appear at any time in a person’s life. Symptoms can occur in the digestive system or in other parts of the body. Symptoms also vary a great deal and can make a definitive diagnosis quite difficult. One person may have depression or irritability or mainly fatigue while another may have diarrhea or constipation, gas, bloating or abdominal pain. These symptoms sometimes first appear after an episode of gastroenteritis, severe emotional distress, abdominal surgery, pregnancy or childbirth.
Look for any of the following symptoms:
Bloating, gas or abdominal pain
Constipation or diarrhea
Significant unexplained weight loss
Chronic fatigue and weakness
Recurrent gas, bloating and abdominal pain
Premature onset of osteoporosis
Autoimmune thyroid disease
Autoimmune liver disease
Very itchy skin rash with small blisters
Irritability or behavior change
Tingling or numbness in hands or feet
2. How is Celiac Disease diagnosed?
Several blood tests are available to test for celiac disease. The major ones are the IgA tissue transglutaminase antibody (also known as the TTG), the IgA anti-endomysial antibody and more recently the IgA and IgG antibody to deamidated gliadin. While very useful for screening detection, the blood tests are not perfect and if positive, can be considered very suggestive of celiac disease. They are not meant to replace the small intestinal biopsy which is required to establish a definite diagnosis of celiac disease. Individuals should not start a gluten-free diet prior to having the blood test, and if positive, confirming the diagnosis of celiac disease by small intestinal biopsy. This is because the damage to the small intestine that is caused by gluten in patients with celiac disease is reversible and eliminating gluten from the diet before the biopsy is obtained can interfere with obtaining accurate test results. This can make it very difficult to obtain an accurate diagnosis in the absence of restarting a gluten containing diet. Currently, treatment for celiac disease is a lifelong gluten-free diet. As the gluten-free diet can be challenging and lifestyle altering, it is very important to undergo an accurate diagnostic work-up for celiac disease before starting a gluten-free diet.
3. When and how do you obtain a small intestinal biopsy?
If the blood tests and symptoms suggest celiac disease, the doctor should ask a skilled gastroenterologist to perform an upper intestinal endoscopy and small intestinal biopsies. The biopsy is obtained during a procedure called EGD (which is short for esophagogastroduodenoscopy). EGD is also called an upper endoscopy by some physicians. EGD involves swallowing a flexible tube containing fiber optics that is placed into the mouth. The tube is passed down through the esophagus and stomach and into the small intestine. It transmits images of the internal walls of the upper digestive tract to a TV screen. Biopsies are taken through the same tube from various areas of the small intestine and looked at under the microscope for evidence of abnormalities that suggest celiac disease. Adults are sedated during this procedure. A definite diagnosis of celiac disease requires upper intestinal endoscopy and biopsy.
4. I think I have Celiac Disease, but the blood tests are negative. What do I do?
While the blood tests for celiac disease are very good at detecting this condition, false negative and false positive tests do occur. False negative results (i.e normal test in someone with celiac disease) are more common with very mild disease or if you are already on a gluten-free diet. Some patients test negative for celiac disease and turn out years later upon repeat testing to have celiac disease. Repeating your blood test may be an important first step. Some individuals also take advantage of genetic testing to determine whether or not they have certain HLA DQ genes that are necessary for developing celiac disease. If you do not have these HLA DQ genes, your symptoms are likely related to a condition other than celiac disease. The HLA DQ genes associated with celiac disease are present in up to one third of the population, so the tests are only helpful in excluding celiac disease as a diagnosis. Small intestinal biopsy can be considered in some individuals where blood tests were not conclusive in diagnosing celiac disease and your doctor still strongly suspects the presence of Celiac disease. Biopsy specimens can be misread if the tissue is not handled properly or not seen by a pathologist expert in interpreting small intestinal biopsies, so finding a doctor who understands the diagnosis of celiac disease and how the tissue must be handled and interpreted is an important step in seeking help with your symptoms. False positive blood tests (abnormal test in someone who does not have celiac disease) are far more common when testing is used for screening populations with a very low likelihood of having celiac disease. Patients already eating a gluten-free diet may have negative blood tests (serology) if they have been on a gluten-free diet for a few months or more. Biopsy results can also revert to normal on a gluten-free diet. In those persons, testing for celiac disease should be repeated after restarting a gluten containing diet or ingesting a defined amount of gluten for a period of time. Some patients may have a problem with the immune system called IgA deficiency which can cause the blood tests for celiac disease to be normal. Special IgG based tests (e.g. IgG tissue transglutaminase antibody) should be ordered in this case to make sure that the diagnosis is not missed.
5. Should I get tested for food sensitivities? What about intestinal biopsies for food sensitivities?
There is a major difference between gluten sensitivity due to allergic reactions to wheat proteins and the immune reaction in the intestinal tract to gluten that occurs due to celiac disease. Other foods that may cause allergic reactions, such as most food dyes, caramel coloring and monosodium glutamate, are generally okay for people with celiac disease to consume. They do not contain gluten and do not usually cause intestinal immune reactions in celiac disease patients.
We do not recommend testing of stool samples for immune sensitivity to gluten. These tests have not been validated for diagnosing celiac disease. You should consult your physician to learn more about the blood tests that are most often used for testing. If the blood tests and symptoms suggest celiac disease, you should consider contacting the Wm. K. Warren Center for proper diagnostic testing and treatment of celiac disease.
6. How do you treat Celiac Disease?
The only known effective treatment is a gluten-free diet . Adhering to the diet will lead to healing of the intestinal damage in most people with celiac disease. The small intestine can heal completely in several months to years depending on the severity of an individual’s celiac disease and how long they had the disease prior to diagnosis.
People with celiac disease must avoid gluten for the rest of their lives. Eating even small amounts of gluten, as little as the amount in one bite of wheat bread, has the potential to cause intestinal inflammation and damage the small intestine. Small intestinal damage can occur in all people with celiac disease, even in those without symptoms.
7. Why should I meet with a dietitian?
A dietitian knowledgeable in the principles of the gluten-free lifestyle can help you identify hidden sources of gluten and any key nutrients you may be missing in your diet. The dietitian can help you understand the basics of food label reading and identifying hidden sources of gluten. They can make recommendations regarding the use of oats and other grains, nutritional balance, healthy grains to replace wheat, rye and barley and where and how to eat in restaurants and fast food outlets. They can also advise on how to avoid cross contamination of food with gluten and how to set up a gluten-free kitchen. They can even give necessary advice on gluten-free medications, vitamins and mineral supplements.
The Wm. K. Warren Center offers classes based on the latest information about healthy gluten-free living several times per year.
8. Where can I find more information on a gluten-free diet?
In addition to help from an expert dietitian/nutritionist, information on a gluten-free diet is available from your local celiac disease support group. Your local support groups and their websites can provide information on recipes, grocery stores that carry gluten-free products, local restaurants with gluten-free offerings, and on reading difficult-to-interpret food labels. Living gluten-free is becoming easier with the increasing awareness of celiac disease in the general population, and the increased availablility of gluten free products. This trend will continue with new food labeling laws requiring manufacturers to indicate if a product contains gluten.
9. I have no symptoms. A blood test was done on me because a family member has celiac disease, and the blood test was positive. Why should I see a gastroenterologist?
Only a small portion of affected people manifest the typical symptoms of celiac disease. Many others have atypical or mild symptoms or even no symptoms and often may not recognize that anything is wrong. Untreated individuals with celiac disease, who may be asymptomatic can later develop symptoms or complications from this disease including thinning of the bones (osteoporosis), anemia (low blood counts) and nerve damage (neuropathy) that you may not feel until it is too late to reverse the damage. Upper endoscopy with small intestinal biopsies (see Question No. 3) is recommended for diagnosis in those individuals with a positive blood test. Upper endoscopy is a specialized procedure that is done by gastroenterologists, who are trained experts in intestinal diseases. Some gastroenterologists, like those at the Celiac Center, specialize in seeing patients with celiac disease.
10. I have pain, bloating, and diarrhea as symptoms of Celiac Disease. When will they go away?
Intestinal symptoms of celiac disease reflect the immune-mediated damage to the small intestine. Severe damage can cause marked abnormalities in absorbing nutrients.
Dietary components that are not absorbed by the body can lead to increased fluid in the intestine and can also be degraded by bacteria leading to symptoms of bloating, pain and diarrhea. Once the immune-mediated process resolves, the damage will reverse and these symptoms will markedly improve.
It may take several weeks to months of eating a gluten-free diet before symptoms completely or almost completely resolve. If you continue to feel unwell, consultation with a specialist who handles many patients with celiac disease is recommended to make sure that you do not have a complication of celiac disease or another problem that is contributing to the symptoms.
11. Should I tell my friends and family that I have Celiac Disease?
In general, the more information you can share with people around you, the more help and understanding you will receive regarding your needs. One should not be embarrassed about having celiac disease. At times, due to the necessity of staying gluten-free, your diet will need to be modified. By letting people know about celiac disease and sharing as much information as possible about the condition, you will find people can be very supportive and understanding about the need to stay gluten-free. You may also help others to discover that they too may be affected by this disease.
12. If I have celiac disease, what is the chance that my family members will have Celiac Disease?
Celiac disease is a genetic condition, which means that immediate family members can share the same disease-causing genes. The frequency of celiac disease among siblings, children or parents (first degree relatives) can be as high as 10-15%, compared to the estimated 1% in the general population in the United States. The frequency among more distant relatives is lower. Given these high probabilities, we advise the screening of at least first degree family members for celiac disease. Serologic blood testing, and in some situations genetic testing, are a reasonable initial approach. If positive, these should be followed up by small intestinal biopsy.
13. I inadvertently ingested gluten, should I seek immediate medical care?
Individuals who inadvertently ingest small amounts of gluten most often will have no clinical symptoms. However, in a small number of highly sensitive individuals, even small amounts of gluten may cause symptoms. The best approach is to avoid further gluten ingestion and if marked symptoms occur or persist to contact your physician and ask for advice. It is important to remember that individuals with celiac disease can also experience other diseases and symptoms should not be ignored or assumed to be due to accidental gluten ingestion.
14. How can I participate in finding an alternative treatment for Celiac Disease?
Scientists are working to find alternatives to the gluten-free diet and alternative treatments for celiac disease. Progress in this area is not as rapid as many would like. This is partly due to the general lack of awareness of celiac disease in the private and public sectors and by many health care professionals. Thus, many have never heard of celiac disease and others often regard it as a rare, rather than common, disorder. It is also true that the gluten-free diet is safe and effective in most patients, whereas alternative treatments may have side effects and be most suitable for use in those patients who are not responding to a gluten-free diet. You can help raise awareness and support by participating in educational programs and fund raising programs sponsored by the Wm. K. Warren Center and your local celiac disease support group. You can help support the Wm. K. Warren Center’s fight against celiac disease by making a donation. Checks should be made payable to "Regents of the University at California", with the "Warren Medical Research Center for Celiac Disease" noted as a reference. Donations should be sent to:
Wm. K. Warren Celiac Center
University of California San Diego
9500 Gilman Drive, MC 0623D
La Jolla, CA 92093-0623
Your donations are very much appreciated and each donation is acknowledged by the Warren Center.