What you need to know about celiac disease
Celiac disease is a chronic, autoimmune disease which is the result of an immune system response to the ingestion of gluten (a protein found in wheat, rye, and barley) in susceptible individuals. This response to gluten damages the small intestine, leading to malabsorption of nutrients and related health issues. To develop celiac disease, a person must inherit the genetic predisposition, be consuming gluten, and have the disease activated. Activation triggers include stress, trauma (surgeries, etc.) and possibly viral infections. Approximately 5-15% of first-degree relatives of those with celiac disease have the condition triggered in their lifetime. The disease is permanent and damage to the small intestine will occur every time gluten is ingested, regardless of whether or not symptoms are present.
Celiac disease affects about 1 in 100 individuals worldwide, or over 3 million people in the United States alone. Approximately 80% of those with celiac disease in the U.S. are undiagnosed.
Up to 200 symptoms have been associated with celiac disease. Those related to malabsorption of nutrients include diarrhea, bloating, weight loss, anemia and growth failure. Non-gastrointestinal symptoms include migraines, infertility, fatigue, joint pain, premature osteoporosis, depression and seizures. Many people do not have gastrointestinal symptoms, some may have just one symptom and some individuals have no obvious symptoms at all.
Initial screening for celiac disease is a blood test ordered by your physician.
Blood tests look for the presence of the following antibodies:
- Anti-tissue transglutaminase (tTG)
- Anti-endomysium (EMA)
- Anti-deamidated gliadin peptides (DGP)
Because no one of these tests is ideal, panels are often used.
If this screening test suggests celiac disease, a small intestine biopsy is the next step to confirming diagnosis. .A positive small intestine biopsy (showing damaged villi) is the “gold standard” for a diagnosis of celiac disease. In some cases a haplotype test for HLA DQ2 and DQ8 may be recommended prior to biopsy to confirm presence of the genes necessary to develop celiac disease.
Strict adherence to a gluten-free diet for life is the only treatment currently available. This involves elimination from the diet of wheat, barley, rye and foods made with these grains or their derivatives. Medication is not required unless there is an accompanying condition, such as osteoporosis or dermatitis herpetiformis. Thriving or showing improvement on the gluten-free diet is the second half of the “gold standard” of diagnosis. It may take several months or longer for the small intestine to completely heal. Improvement is measured by regular monitoring of the antibody blood tests used for screening, and by improved health. When you are on a gluten-free diet, blood tests should eventually come back to normal. This indicates good control of celiac disease – not a cure. You will always require a gluten-free diet until another form of treatment is discovered.
The gluten-free diet is a lifelong commitment and should not be started before being properly diagnosed. Starting the diet without complete testing is not recommended and makes later diagnosis difficult. Tests to confirm celiac disease could be falsely negative if a person were on a gluten-free diet for a period of time. For a valid diagnosis to be made, gluten would need to be reintroduced for at least several weeks before testing.
Generally excellent, if a strict gluten-free diet is maintained. The small intestine will steadily heal and start absorbing nutrients normally. You should start to feel better within days; however, complete recovery may take from several months to several years.
Questions to ask your doctor:
- Should I take nutritional supplements?
- Could I have associated food intolerances?
- Where can I have a bone-density study?
- What other concerns should I have?
- How can I find out about the diet?
- How often should I follow-up with the doctor? With the dietitian?
This article has been assessed and approved by a Registered Dietitian Nutritionist.