If you’ve just been diagnosed with celiac disease, you likely have many questions. Here are eight questions you might want to ask your doctor:
How bad was my intestinal damage?
In diagnosing celiac disease, the gastroenterologist takes samples of your small intestine lining to look for damage to your villi – tiny tentacles on the lining that absorb the nutrients from your food. Damage is ranked by a 0-4 scale called the Marsh score; Marsh score stage zero means normal intestinal villi, while Marsh score stage 4 means total villous atrophy, or completely flattened villi.
Damage doesn’t always correlate with celiac symptoms, but could correlate with nutritional deficiencies and other health risks. If your damage is severe, you and your doctor may decide you need screening for other health problems.
Should I be tested for nutritional deficiencies?
Newly diagnosed celiac disease patients often suffer from malnutrition because they haven’t been absorbing nutrients, even if they were eating a balanced diet. Nutritional status isn’t always obvious from symptoms, especially if your celiac symptoms themselves are severe.
Common deficiencies include iron, B vitamins such as folate and B12, calcium, magnesium, vitamin D and essential fatty acids. Your physician might consider testing to determine if you’re deficient in specific nutrients.
Should I be scanned for osteoporosis and osteopenia?
Osteoporosis is a disease where bones become thinner, more brittle and easily fractured. In osteopenia, meanwhile, bone density is lower than normal but does not yet meet medical criteria for osteoporosis. Both conditions are common in newly diagnosed celiac disease patients because celiac’s intestinal damage can prevent the body from absorbing calcium, magnesium and vitamin D – the building blocks of bones.
Bone density generally returns to normal within two years on a gluten-free diet, but a bone density scan can help diagnose thinned bones and determine whether you need supplements or even a drug such as Fosamax (alendronate) to build bone mass more quickly.
Should I take nutritional supplements?
Many physicians recommend their celiac disease patients take a multivitamin every day, and medical research supports this. Some physicians may prescribe additional supplementation to make up for nutritional shortfalls. But be careful supplementing without a physician’s input: The Celiac Sprue Association (CSA) cautions that celiac patients shouldn’t take supplements without consulting with their physician.
For example, the CSA warns that it’s possible to actually lose bone mineral density by taking too much vitamin D – which could happen if you’re trying to make up for having too little of the vitamin in your system by taking multiple supplements.
Can you recommend a nutritionist who understands celiac disease?
In many cases, newly diagnosed celiac patients benefit from consulting with a nutritionist who specializes in celiac disease. Cutting all gluten – obvious and hidden – from your diet can be a daunting task, especially if you’re someone who hasn’t been particularly conscious of food ingredients before.
A nutritionist can help you learn to read food labels while teaching you which foods are naturally gluten-free. However, it’s important to choose a nutritionist who knows the detailed ins and outs of the gluten-free diet; hopefully, your doctor can recommend someone.
Can I eat dairy products?
Many new celiac disease patients cannot tolerate dairy products that contain lactose, a type of sugar found in milk. That’s because lactose is broken down by an enzyme called lactase, which is produced by the tips of the intestinal villi. If your villi are eroded due to celiac disease, then you can’t make lactase and you can’t digest lactose.
Lactose intolerance symptoms include abdominal pain and bloating, diarrhea and gas. Testing can identify celiac patients who also are lactose-intolerant. Fortunately, lactose intolerance often reverses after you’ve been on the gluten-free diet for a while, since the villi heal and begin to produce lactase again.
What future follow-up should I expect?
Your celiac disease tests probably included blood work to measure antibodies to gluten, plus an intestinal biopsy to look for villi damage. Some physicians like to conduct follow-up celiac disease blood tests to recheck blood levels of gluten antibodies, which may be able to measure compliance with the gluten-free diet.
Your physician also might recommend a repeat endoscopy after six months or one year on the gluten-free diet to confirm that damage is healing properly.
Should my family be tested for celiac disease too?
Celiac disease is genetic, and once you’re diagnosed, experts recommend that all your first-degree relatives (parents, brothers, sisters and children) get tested, too. First-degree relatives have a 1 in 22 risk of celiac over their lifetimes.
A one-time test will not be sufficient to catch all celiac cases, either. For example, one study found that, of 171 family members who were negative when first screened, 3.5% tested positive on their second screening, even though most were asymptomatic. The study authors recommended periodic repeat testing of family members, regardless of symptoms.
Ann Cranney, Marion Zarkadas et. al. "The Canadian Celiac Health Survey." Digestive Diseases and Sciences 2007 April; 52(4):187-95.
Leon H. Rottmann, Ph.D. "Time to Review Safe Amounts of Vitamins." Celiac Sprue Association Lifeline 1997 Fall, XV(4):1.