8 Questions to Ask Your Healthcare Provider After a Celiac Disease Diagnosis

If you’ve just been diagnosed with celiac disease, you likely have many questions. Here are eight you might want to ask your healthcare provider.

A healthcare provider touching a person who is sitting in an exam room

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How Bad Was Your 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 on 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 healthcare provider may decide you need screening for other health problems.

Should You 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 healthcare provider might consider testing to determine if you’re deficient in specific nutrients.

Should You 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 You Take Nutritional Supplements?

Many healthcare providers recommend their celiac disease patients take a multivitamin every day, and medical research supports this. Some healthcare providers may prescribe additional supplementation to make up for nutritional shortfalls. But be careful supplementing without a healthcare provider’s input: The Celiac Sprue Association (CSA) cautions that celiac patients shouldn’t take supplements without consulting with their healthcare provider.

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 They Recommend a Dietician Who Understands Celiac Disease?

In many cases, newly diagnosed celiac patients benefit from consulting with a dietician 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 healthcare provider can recommend someone.

Can You 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 You Expect?

Your celiac disease tests probably included blood work to measure antibodies to gluten, plus an intestinal biopsy to look for villi damage. Some healthcare provider 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 healthcare provider 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 Your 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 risks 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.

4 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read our editorial process to learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
  1. Celiac Disease Foundation. Diagnosing of celiac disease.

  2. NHS. Complications celiac disease.

  3. NIH. What people with celiac disease need to know about osteoporosis.

  4. Goldberg D, Kryszak D, Fasano A, Green PH. Screening for celiac disease in family members: is follow-up testing necessary?. Dig Dis Sci. 2007;52(4):1082-6. doi:10.1007/s10620-006-9518-1

By Jane Anderson
Jane Anderson is a medical journalist and an expert in celiac disease, gluten sensitivity, and the gluten-free diet.