Celiac Disease FAQ

Celiac disease (spelled “coeliac” in the UK and Australia) is an autoimmune disease that’s triggered by consuming gluten and results in damage to the small intestine.

When a person with celiac disease eats gluten, the immune system begins to attack villi, which are small, fingerlike projections in the intestines that absorb nutrients. Damaged villi make it nearly impossible for the body to absorb nutrients, leading to malnourishment, among other issues.

Gluten is a storage protein found in wheat, barley and rye. Gluten can also be found in derivatives of wheat, barley and rye grains such as malt and brewer’s yeast. Gluten gives dough its elasticity, acting like a glue and giving bread its chewy, soft texture.

There’s actually no such thing as a gluten allergy. Someone may describe celiac disease as a gluten allergy—though that is technically inaccurate—when eating out to get staff to take the proper precautions when making their meal. Food service staff may not know what “celiac disease” is, but they usually understand food allergies, such as milk or peanut allergies.

Gluten is a protein found in wheat, barley, rye and the derivatives of these grains, including malt and brewer’s yeast. A gluten-free diet excludes all products containing these ingredients. Those who are gluten-free can still enjoy a wide variety of foods, including fruits, vegetables, meats, poultry, fish, beans, legumes, seeds, other grains and most dairy products, which are naturally gluten-free.

A strict, lifelong gluten-free diet is currently the only treatment for people with celiac disease. People living with non-celiac gluten sensitivity (‘gluten sensitivity’) also benefit from eating gluten-free.

There are 200–300 symptoms associated with celiac disease. It is sometimes called a “chameleon” disease by experts because it can be mistaken for many other conditions based on symptoms alone. Some people with celiac disease have no symptoms at all—this is called asymptomatic celiac disease.

Some of the most common symptoms of celiac disease include:

• Diarrhea
• Fatigue
• Anemia
• Headaches
• Dermatitis herpetiformis, an itchy skin rash

Typically, celiac disease testing starts with blood tests that look for antibodies to gluten. If these tests return positive results, they are followed by an upper endoscopy and biopsy to confirm the diagnosis.

It’s important to remain on a normal, gluten-containing diet before and while being tested for celiac disease. Going gluten-free prior to diagnosis may affect test results.

Ask your primary care physician to order the blood tests. They will then send you to a lab to have your blood drawn. If the blood tests return results positive for celiac disease, the patient is generally referred to a gastroenterologist (sometimes called a GI), a type of doctor more familiar with celiac disease, to discuss an endoscopy and biopsy to confirm.

It’s important to remain on a normal, gluten-containing diet before and while being tested for celiac disease. Going gluten-free prior to diagnosis may affect test results.

Is it important to continue to eat gluten in the weeks leading up to both the blood test and endoscopy and biopsy. If you go gluten-free, it could cause the tests to return incorrect results.

Aside from that, be sure to wear a short-sleeve shirt to your lab appointment so the technician can more easily access your veins. Endoscopy preparation will vary, but generally you will be required to fast for eight hours before the procedure and, since you will be sedated, arrange for a ride home after the procedure.

Doctors recommend eating three to 10 grams per day—two grams is roughly equivalent to a slice of bread—daily for six to eight weeks prior to an upper endoscopy.

However, recent findings suggest that if you are having too many symptoms and cannot tolerate a full six to eight weeks of gluten, it is still worthwhile to have a biopsy after as little as two weeks.

Celiac disease is epigenetic, which means that in order to develop it you have to have a certain gene and then experience something that “turns” the gene on. It is estimated that 30% of the population has one or both of the genes that are linked to celiac disease, but only 1% ever develop the disease. What triggers celiac disease in susceptible people is still a mystery, though research indicates that stressors such as illness, trauma, puberty or childbirth may play a part.

An estimated 1 in 133 Americans, or about 1% of the population, has celiac disease. However, recent screening studies point to a potentially higher prevalence than 1% in the United States.

A gluten-free diet excludes all products containing wheat, barley, rye and the derivatives of these grains, including malt and brewer’s yeast. Any foods not made with those ingredients are fair game, including fruits, vegetables, meats, poultry, fish, beans, legumes and most dairy products, as well as gluten-free grains like rice and corn.

Lots of candies are gluten-free! Reese’s peanut butter cups, Hersey’s kisses, and Laffy Taffy are all gluten-free, though you should always review the label or call the manufacturer before trying a product.

Many alcohols are gluten-free. Unflavored wine, vodka, and champagne are all naturally gluten-free, as are distilled liquors. Most beers are not, including “gluten-removed” beers. The only truly safe beers for those with celiac disease are those made from gluten-free grains like millet, sorghum and rice.

Yes, oats are gluten-free. However, many people with celiac disease avoid oats because of their high risk of cross-contact. People with celiac disease should only eat certified gluten-free oats. There is also a small percent of those with celiac disease who cross-react to oats because of a protein called avenin, which is structurally similar to gluten.

Many flours are gluten-free, including flours made from rice, potato, corn, coconut, sorghum, millet, as well as those made from nuts and beans, such as almonds and chickpeas.

Celiac disease was first named by Aretaeus Of Cappadocia, a Greek physician who was alive in the second century AD. In his writings he also described tetanus, pneumonia, asthma, and epilepsy, as well as giving diabetes its name. Celiac disease was then largely forgotten about until the 1800s, when Dr. Matthew Baillie and then Dr. Samuel Gee investigated diet as a potential treatment for this condition.

No, currently there is no cure for celiac disease. The only treatment for celiac disease is a lifelong gluten-free diet. However, researchers are trying to develop additional treatments and even a cure.

Currently there are no FDA-approved medicines for celiac disease. The only treatment for celiac disease is a lifelong gluten-free diet. However, researchers are trying to bring a treatment and cure to our community.

Yes, you may have non-celiac gluten sensitivity (NCGS). It has similar symptoms to celiac disease, but there is no internal damage or immune system response.

No. This is a lifelong, autoimmune condition. It is not something you can grow out of, like a sensitivity or allergy.

Celiac disease itself is unlikely to kill you, but side-effects from untreated celiac disease, such as malnourishment, osteoporosis, chronic anemia and the potential for developing certain types of cancer can lead to a premature death.

Yes. Because there is a genetic component to celiac disease, you’re at higher risk of developing celiac disease if a relative such as a sibling, parent, or child has this condition. If one person in the family is diagnosed with celiac disease, first and second degree relatives should also be tested.

You may be immunocompromised if you have untreated celiac disease.

The immune system of someone with celiac disease responds to gluten when it shouldn’t, therefore it is over-active rather than suppressed. If celiac disease is in its active stage and a strict gluten-free diet is not observed (as in the case of those who are undiagnosed or those who continue to have accidental or intentional gluten exposure), the immune system is over-activated by the presence of gluten, and may make a person more susceptible to viral infections.

On a strict, gluten-free diet, a person with celiac disease should have a similar immune system response to viral infections as those without celiac disease.

You may be immunocompromised if you have untreated celiac disease.

The immune system of someone with celiac disease responds to gluten when it shouldn’t, therefore it is over-active rather than suppressed. If celiac disease is in its active stage and a strict gluten-free diet is not observed (as in the case of those who are undiagnosed or those who continue to have accidental or intentional gluten exposure), the immune system is over-activated by the presence of gluten, and may make a person more susceptible to viral infections.

On a strict, gluten-free diet, a person with celiac disease should have a similar immune system response to viral infections as those without celiac disease.

Drink plenty of water and replenish your electrolytes by drinking a sports drink such as Pedialyte. Unfortunately, there are no pills or treatments you can take to make you feel better or “break down” the gluten—just rest and time.