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What can I do about my celiac disease?

Asked by Patrick, Omaha, Nebraska

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How long does it take to feel the benefits of a gluten-free diet once diagnosed with celiac disease? I have been living gluten/casein free for over five years now and have yet to see much improvement.

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Diet and Fitness Expert Dr. Melina Jampolis Physician Nutrition Specialist

Expert answer

Hi Patrick. Since celiac disease affects approximately 1 percent of the population and is often undiagnosed until later in life, your question provides a great opportunity to educate people about this disease.

Gluten-free diets are essential for people who have celiac disease, a lifelong genetic condition in which the body does not tolerate the protein in wheat, rye and barley. When gluten-containing foods or products are consumed in those with the disease, the intestines are damaged, leading to inability to properly absorb vitamins, minerals and other nutrients.

Blood tests followed by intestinal biopsy are necessary for the diagnosis. Common symptoms include abdominal pain, bloating, diarrhea, fatty stools, weight loss and fatigue. Symptoms can also extend beyond the digestive tract due to nutrient deficiencies and include anemia, osteoporosis and neurological symptoms.

I'm not sure if you have casein allergy as well, but limiting dairy during the initial treatment can be useful as lactose intolerance sometimes occurs as a secondary consequence of the intestinal damage.

Celiac? To heck with that! Living gluten-free and well-fed

Without knowing what symptoms you have that have not improved, it is difficult to troubleshoot.

Most people will notice fairly rapid improvement after removing gluten completely from their diet, but it may take years for the intestines to fully heal. After five years, I would expect you to have noticed significant if not complete improvement. Here are a few possible reasons your symptoms may not have improved:

• Hidden gluten in your diet. It is shocking how many foods actually contain gluten in some form including things like hydrolyzed vegetable protein, starch, soy sauce, fillers and even binders used in pharmaceutical products and vitamins, according to the Celiac Disease Foundation, a great resource for those suffering from this disease. In addition, the National Institutes of Health has launched a campaign to increase awareness of celiac disease and its website is also a terrific resource.

• Refractory sprue. Some people have a less common form of the disease that does not respond to removal of gluten from the diet and requires stronger immune therapy. Your doctor would make this diagnosis.

• Nutrient deficiency. Due to the restrictive nature of a gluten-free/casein-free diet, you could be missing key nutrients, or you may have a lingering vitamin or mineral deficiency. I would highly suggest consulting with a registered dietitian with experience treating patients with celiac disease to fully evaluate your diet, and see your doctor for blood tests when appropriate.

• Associated autoimmune disease. In some cases, celiac disease may be associated with another disease in which the body attacks itself including thyroid disease, liver disease, rheumatoid arthritis and type 1 diabetes. See your doctor to rule out this possibility.

I hope this helps and that you start feeling better soon.

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