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Celiac Disease: Frequently Asked Questions
What is celiac disease?Celiac is a hereditary, autoimmune disease that damages the small intestine and interferes with absorption of nutrients from food. People who have celiac disease cannot tolerate proteins called gluten, found in wheat, rye and barley.
What are symptoms of celiac disease?
Symptoms associated with celiac may include gas, recurring stomach pain and bloating, constipation or diarrhea, weight loss, or gain, fatigue, unexplained anemia, bone or joint pain, osteoporosis, infertility as well as neurological problems to name a few. There can be over 200 symptom presentations. Children with celiac disease often experience delayed growth secondary to malnutrition. However, some people who test positive for celiac may exhibit no symptoms at all. These "silent celiacs" are at risk for the same long-term complications as other celiacs -- despite their lack of symptoms.
What is dermatitis herpetiformis? What does it have to do with celiac disease?
Dermatitis herpetiformis (DH) presents with an intense itch and blistering symmetrical rash, usually on the elbows, knees, and buttocks. It is a skin manifestation of celiac disease. Three-fourths of people with DH have some damage to the small bowel. It mainly affects adults and slightly more males than females. The average age of onset is around 50 years. The incidence of DH and celiac disease runs within families. The ratio of DH to celiac disease is 1:8. The incidence of DH is decreasing, where that of celiac disease is increasing. The treatment of choice for all DH patients is adherence to a strict gluten-free diet (GFD). In addition some may need to go on medications to help control the rash and itching.
Who does celiac disease affect?
Celiac disease affects 1% of the world's population and the number continues to increase; this means that at least 1 out of every 100 Americans has celiac disease. Many are currently undiagnosed or misdiagnosed.
What are the causes of celiac disease?
What triggers the development of symptoms in an individual who carries the genes for celiac disease is unknown. However, it is an autoimmune disease that has a known culprit - gluten. Research is looking at the role of the gut microbiome (bacteria that live in your gut) and prior viral infections as contributing to the development of celiac disease.
How is celiac disease treated?
While some drug treatments are currently in the research and development phases, there is no known medical or pharmacologic cure for celiac disease. The only way to treat celiac is to follow a 100% gluten free diet.
Attitude is everything when living a gluten free lifestyle. A positive attitude, rooted in the knowledge that living gluten free can eliminate symptoms and help one's body heal from the ravages of celiac disease, helps patients as they make the extra effort to become more educated, read labels, speak to restaurant staff and resist the temptation to "cheat" on the diet.
What are the long-term effects of untreated celiac disease?
In addition to damage of the small intestine, long-term effects of undiagnosed or untreated celiac disease include cancer, osteoporosis, miscarriage, an increased risk of fetal congenital malformations in pregnant women and delayed growth and short stature in children. While symptoms may show improvement when a gluten free diet is followed, more research is needed to determine long-term consequences of celiac disease and, ultimately, discover a cure.
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, in which the cell lining renews itself every three to five days. Therefore, if the damage is exclusively due to CD, the villi will be reformed once on a gluten-free diet. The time for the villa to return to normal varies between individuals.
Can I outgrow celiac disease?
If you are a biopsy proven celiac, you will not outgrow the disease since celiac disease is now considered to be an autoimmune disorder like Type 1 diabetes and rheumatoid arthritis.
Is there hidden gluten?
Yes, you should always be careful before ingesting anything. Take candy bars for instance. Snickers are gluten free, but they are not certified gluten-free. They do not contain any gluten ingredients, but the website cautions those with celiac disease. Medications may contain gluten or a derivative, so check carefully. Be careful of products that come in contact with your mouth (lipstick, lip balm) or hands. Always check ingredients.
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.
What about oats?
Many recent studies indicate that the protein found in oats may not be harmful to most people with celiac disease. The long-term consumption of oats by patients with celiac disease is safe and may improve quality of life. However, there is concern that the oats may be contaminated with wheat during the milling and processing. Please consult your physician or dietitian before adding oats to you or your child's diet.
Updated October 2022
References:- Aaltonen K, Laurikka P, Huhtala H, Mäki M, Kaukinen K, Kurppa K. The Long-Term Consumption of Oats in Celiac Disease Patients Is Safe: A Large Cross-Sectional Study. Nutrients. 2017 Jun 15;9(6):611. doi: 10.3390/nu9060611. PMID: 28617328; PMCID: PMC5490590.
- Pinto-Sanchez MI, Silvester JA, Lebwohl B, Leffler DA, et al. Society for the study of Celiac Disease position statement on gaps and opportunities in coeliac disease. Gastroenterology & Hepatology. 2021 Dec 18:875-884.
- Reunala T, Hervonen K, Salmi T. Dermatitis Herpetiformis: An update on diagnosis and management. American Journal of Clinical Dermatology. 2021; 22:329-338. Doi.org/10.1007/s40257-020-00584-2.