If you’ve just been diagnosed withceliac disease, you likely have many questions. Here are eight you might want to ask your healthcare provider.Maskot / Getty Images

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

Maskot / Getty Images

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

How Bad Was Your Intestinal Damage?In diagnosing celiac disease, the gastroenterologist takes samples of your small intestine lining to look for damage to yourvilli⁠—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 withceliac symptomsbut 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.

How Bad Was Your Intestinal Damage?

In diagnosing celiac disease, the gastroenterologist takes samples of your small intestine lining to look for damage to yourvilli⁠—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 withceliac symptomsbut 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 frommalnutritionbecause 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 Tested for Nutritional Deficiencies?

Newly diagnosed celiac disease patients often suffer frommalnutritionbecause 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?Osteoporosisis a disease where bones become thinner, more brittle and easily fractured. Inosteopenia, 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 Be Scanned for Osteoporosis and Osteopenia?

Osteoporosisis a disease where bones become thinner, more brittle and easily fractured. Inosteopenia, 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.

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 allgluten—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 toread food labelswhile 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 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 allgluten—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 toread food labelswhile 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?

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.

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-upceliac disease blood teststo 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.

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 SourcesVerywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.Celiac Disease Foundation.Diagnosing of celiac disease.NHS.Complications celiac disease.NIH.What people with celiac disease need to know about osteoporosis.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

4 Sources

Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.Celiac Disease Foundation.Diagnosing of celiac disease.NHS.Complications celiac disease.NIH.What people with celiac disease need to know about osteoporosis.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

Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.

Celiac Disease Foundation.Diagnosing of celiac disease.NHS.Complications celiac disease.NIH.What people with celiac disease need to know about osteoporosis.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

Celiac Disease Foundation.Diagnosing of celiac disease.

NHS.Complications celiac disease.

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

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

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