by Margaret Braae, MHSc, RD, CD, CSP
Pediatric Outpatient Dietitian
Although eating a gluten-free diet has become very popular, did you know that many people have to eat gluten-free because they have an autoimmune, genetic disease? This condition is known as celiac disease. Since May is Celiac Disease Awareness month I thought it would be helpful to discuss the specifics of this common disease.
What is Celiac Disease?
Celiac disease, also known as gluten intolerance or celiac sprue, is a genetic, autoimmune disease. An autoimmune disease is a condition that occurs when your immune system mistakenly attacks and destroys your body’s tissue. You might think that celiac disease is uncommon, but we know that it affects 1 in 133 Americans. This means that many people are walking around undiagnosed.
Symptoms are numerous and diverse and can include: diarrhea, constipation, weight loss or gain, malnutrition, anemia that is resistant to iron supplementation, abdominal bloating, short stature, infertility, weakness, seizures, and bone pain.
In celiac disease, gluten - which is a protein found in wheat, rye, barley, and most oats - attacks and destroys the lining of the small intestines. This reduces the area for absorbing virtually all nutrients. Celiac disease is a lifelong condition that can be diagnosed at any age.
People with gluten intolerance may also have dermatitis herpetiformis, a skin condition of itchy skin and skin eruptions. The treatment for dermatitis herpetiformis is also a strict gluten-free diet.
How is Celiac Disease Diagnosed?
If you or anyone in your family has any of the symptoms mentioned above, then the first step in getting a diagnosis is a screening blood test. This test measures antibodies to gluten in your blood. If this test is positive, then you need to have an endoscopy with biopsies.
If there are characteristic changes in your digestive tract, you will be diagnosed with celiac disease and should then schedule an appointment with a dietitian to ensure you understand what is involved with a gluten-free diet, how to read labels, avoid cross-contamination of your gluten-free food with gluten-containing food, and how to get nutrients you need to be healthy.
What is the Treatment for Celiac Disease/Gluten Intolerance?
The treatment for celiac disease/gluten intolerance is a diet without gluten. When you remove gluten from your diet, your intestines can heal. Healing time is different for each person.
You’ll have to stay on the gluten-free diet even after you feel well. If you eat gluten, it can:
- Damage your small intestine
- Cause nutrient deficiencies and malnutrition
- Make it so your immune system doesn’t work well. You won’t be able to fight infections as well.
- Make it hard for children to grow properly.
Many people also have lactose intolerance at diagnosis. The gastroenterologist who diagnoses you with celiac disease can tell you if your lactase enzyme levels are low and if you need to limit lactose intake or use lactase enzymes or Lactaid products. Lactose intolerance is generally temporary for most people. After you’ve been eating a gluten and lactose-free diet for a period of time (3-6 months), you can probably eat dairy products again.
Even if no symptoms return, if you don’t continue to follow the gluten-free diet other problems can develop. Some of these include osteoporosis, lymphoma, and other cancers. In fact, you have a 40% higher chance of getting cancer than a person without celiac disease if you do not stay on a gluten-free diet.
Keep in mind that adjusting to, and following a gluten-free diet can be challenging for many people. Sure, it can feel great to feel good and be healthy, but it’s often hard to give up favorite foods. Teens especially, can struggle with self-image issues, and with following a strict gluten-free diet. It’s hard to be different from your peers when you’re a teen. Children and adults also, can struggle with a diagnosis of celiac disease. Parents, caregivers, spouses, and friends can help by quickly recognizing when those they care about are having difficulties. Talking about feelings – both good and bad - that accompany a diagnosis of celiac disease is very important; so too, is obtaining professional counseling if the problems persist, or the child/teen/adult does not follow their gluten-free diet.
Nutrition Concerns on a Gluten-Free Diet
- At diagnosis – there are likely nutritional deficiencies from months or sometimes years of poor absorption because of damaged intestines.
- Many people consuming a gluten-free diet do not get adequate vitamins, minerals, and fiber.
- Most gluten-free grains are not enriched the way wheat flour is enriched.
How Do I Get the Nutrients I Need?
Along with a good diet:
- Take a gluten-free “complete” vitamin and mineral supplement. Generally the “gummi” vitamins do not contain enough iron and zinc to be worthwhile. Your multivitamin should not contain more than the recommended daily allowance of vitamins and minerals.
- Eat whole grain gluten-free flours such as brown rice, quinoa, millet, buckweheat, teff, amaranth, bean flours, and sorghum to help get the fiber you need.
- Eat plenty of fruits and vegetables, to get fiber as well as vitamins and minerals.
- Eat leafy green vegetables, orange juice, and legumes so you get the folate you need.
- Eat meats, chicken, fish, legumes, nuts, and seeds so you get the iron you need.
- Get your recommended number of dairy or milk-alternative servings daily to get the calcium and vitamin D you need. Take a calcium and vitamin D supplement if you do not get adequate calcium and vitamin D.
- Work with a Registered Dietitian who is familiar with Celiac Disease and the Gluten-Free diet to maximize your health and nutrition.
Know Your Numbers
Every year, or as your primary care provider recommends:
- Check you antibody levels to make sure you are following the gluten-free diet.
- Check for vitamin deficiency: thiamin, vitamin B6, folate, vitamin B12, and vitamin D.
- Check for anemia.
- Check for mineral deficiencies: iron, copper and zinc.
- Check liver enzyme levels.
- Check for osteoporosis and/or osteopenia. Teens and adults should get a baseline bone scan when diagnosed with celiac disease, and follow-up scans as recommended by your primary care provider.
After you are diagnosed with celiac disease, you will want to see a Registered Dietitian to ensure you maximize your health and nutrition while eating a gluten-free diet.
At Primary Children’s you have the option of either an individual appointment or a group class. Your insurance will most likely determine which option is best for you and your family. If interested, please call Margaret Braae at 801-662-5316 to discuss your options and to schedule an appointment.
