The Center for Celiac Research and Treatment at Mass General for Children provides programs and positive messaging to educate the public and debunk common myths about celiac disease.
Get answers to common questions about celiac disease.
What is celiac disease?
Celiac disease is a genetic disorder that can affect children and adults. People with celiac disease are unable to eat foods that contain gluten, which is found in wheat and other grains. In people with celiac disease, gluten sets off an autoimmune reaction that causes the destruction of the villi in the small intestine. People with celiac disease produce antibodies that attack the intestine, causing damage and illness. Finding the cause of this disease is a priority of the Center for Celiac Research.
Nearly 1 out of every 133 Americans suffer from celiac disease, according to a study by the Center for Celiac Research. The research indicates that celiac disease is twice as common as Crohn’s disease, ulcerative colitis and cystic fibrosis combined.
A blood test is now available to screen for the presence of specific antibodies. A biopsy of the intestine (before beginning a gluten free diet) is needed to make confirm and make a final diagnosis.
Untreated celiac disease can be life threatening. People with celiac disease are more likely to be afflicted with problems relating to malabsorption, including osteoporosis, tooth enamel defects, central and peripheral nervous system disease, pancreatic disease, internal hemorrhaging, organ disorders (gall bladder, liver, and spleen), and gynecological disorders. Untreated celiac disease has also been linked an increased risk of certain types of cancer, especially intestinal lymphoma.
At this time, there are no drugs to treat celiac disease and there is no cure. But patients with celiac disease can lead normal, healthy lives by following a gluten free diet. This means avoiding all products derived from wheat, rye, and barley.
Individuals with celiac disease cannot outgrow the disease since it is a lifelong autoimmune disorder like diabetes and rheumatoid arthritis.
Celiac disease is not a food allergy; rather it is an autoimmune disease. Food allergies, including wheat allergy, are conditions that people can grow out of. This is not the case with celiac disease.
What are the symptoms of celiac disease?
Symptoms of celiac disease include diarrhea, constipation, weight loss, abdominal pain, fatigue, weakness, headache, and other non-specific complaints. In children, the symptoms may include poor growth or poor weight gain, irritability, an inability to concentrate, diarrhea, constipation, and bloating. Further, people affected by celiac disease may experience extra intestinal symptoms that involve many systems and organs including bones (osteoporosis, arthritis, and joint pain), blood (anemia and bleeding), reproductive system (infertility and reoccurring abortion), nervous system (peripheral neuropathy, depression, dementia), and behavioral changes.
How common is celiac disease?
Nearly 1 out of every 133 Americans suffer from celiac disease, according to a new study by the University of Maryland Center for Celiac Research in Baltimore. The research indicates that celiac disease is twice as common as Crohn's disease, ulcerative colitis and cystic fibrosis combined.
How is celiac diagnosed?
A blood test is now available to screen for the presence of specific antibodies. A biopsy of the intestine (before beginning a gluten free diet) is needed to make a final diagnosis. Therefore a gluten free diet should never be started before consulting with a gastroenterologist.
What are the long-term effects of celiac disease?
Untreated celiac disease can be life threatening. Patients with celiac disease are more likely to be afflicted with problems relating to malabsorption, osteoporosis, tooth enamel defects, central and peripheral nervous system disease, pancreatic disease, internal hemorrhaging, organ disorders (gall bladder, liver, and spleen), and gynecological disorders. Untreated celiac disease has also been linked an increased risk of certain types of cancer, especially intestinal lymphoma.
What is the treatment for celiac disease?
There are no drugs to treat celiac disease and there is no cure. But celiacs can lead normal, healthy lives by following a gluten free diet. This means avoiding all products derived from wheat, rye, and barley.
What are the recommended blood tests to diagnose celiac disease?
There is a particular series of blood tests that measure your immune system’s response to gluten in the food you eat. The tests we use to evaluate for celiac disease include:
- Total IGA
- tTG-IgA or tissue transglutaminase-IgA
- EMA or anti-endomysial antibody- IgA
- For patients with a low total IgA level, DGP anti-deamidated gliadin peptide- IgG is recommended
While the presence of tTG antibodies is suggestive of celiac disease meeting with a gastroenterologist and confirming the diagnosis with an endoscopy while on a gluten containing diet is necessary.
How accurate are the celiac blood tests?
The current diagnostic tests for celiac disease are very accurate, particularly when tTG and anti-endomysial antibodies are elevated.
Are the villi permanently damaged in a patient with celiac disease and how long does it take for the villi to return to normal?
The villi are not permanently damaged. The intestine is an organ, which renews itself every three days. Therefore, if the damage is exclusively due to celiac disease, the villi will be begin to heal once on a gluten-free diet. The time for the villa to return to normal varies among individuals. Answering this question and understanding the underlying mechanism is part of our ongoing research program.
What is the meaning of HLA DQ2/DQ8?
As an autoimmune disease, celiac disease is the consequence of the interplay between genes, gluten, and the environment. We don’t know all the necessary genes to develop celiac disease; however, HLA DQ2 and/or DQ8 are absolutely necessary to develop the disease. Since up to 40% of the general population also have these genes, the presence of DQ2 or DQ8 does not imply that the person will develop celiac disease, rather, that they have a genetic compatibility with celiac disease. Conversely, the absence of DQ2/DQ8 almost certainly rules out celiac disease.
Is it necessary to have an intestinal biopsy to confirm the diagnosis of celiac disease?
The intestinal biopsy is the gold standard for the diagnosis of celiac disease, and therefore is considered essential.
Is it necessary to have an intestinal biopsy to confirm the diagnosis of dermatitis herpetiformis (DH)?
A skin biopsy is sufficient to confirm the diagnosis of DH. Dermatitis herpetiformis is the skin manifestation of celiac disease.
If a diabetic goes on a gluten-free diet, will their diabetes improve?
Not necessarily. The current literature suggests that once you develop diabetes, the course of the disease may not be changed by a gluten-free diet. However, there are some reports suggesting that a gluten-free diet can help to better control serum glucose levels.
Can a person with celiac disease on gluten-free diet give blood?
Yes, a person with celiac disease can donate blood.
Can a person with celiac disease drink wine?
Yes, wine is made from grapes. Conversely, beer is made from grains and cannot be consumed by a celiac. However, there are gluten free beers now available.
Can I outgrow celiac disease?
If you are a biopsy proven celiac, you will not outgrow the disease since celiac disease is an autoimmune disorder like diabetes and rheumatoid arthritis.
Do I need to repeat the biopsy once on a gluten-free diet?
We recommend repeating an intestinal biopsy in our adolescent and adult patients to ensure that intestinal healing has occurred.
Is celiac disease a food allergy?
No, celiac disease is not a food allergy; rather, it is an autoimmune disease. Food allergies, including wheat allergy, are conditions that people can grow out of. This is not the case with celiac disease.
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