Grain Drain Celiac Disease Presents a Stern Dietary Challenge

To go gluten-free or not? The answer to that question, Dr. Barry Hirsch said, often comes down to rolling the dice on one’s long-term health.

He was talking to HCN about celiac disease, a gastrointestinal condition triggered by consumption of the protein gluten, which is found in foods containing wheat, barley, or rye.

People with celiac disease who eat foods containing gluten undergo an immune reaction in their small intestines, similar to a food allergy, resulting in an inability to absorb certain nutrients, such as calcium, vitamin D, and iron, and potentially causing damage to the intestinal wall, said Hirsch, who works in the Pediatric Gastroenterology Division at Baystate Medical Center.

For some people, celiac manifests with diarrhea and abdominal pain, often serious. Others may experience anemia, joint pain, muscle cramps, rashes, or even depression, and children may undergo growth delays. But some patients with celiac may experience no symptoms at all — yet, the disease poses a small risk of cancer or osteoporosis, which brought Hirsch back to that dice roll.

“This malabsorption of nutrients could result in short stature, growth delays in children, and osteoporosis in adults because they’re not absorbing calcium and vitamin D properly, as well iron deficiencies and anemia because they have trouble absorbing iron. Most concerning is the risk of intestinal cancers in people not on the diet,” he said.

According to Dr. Jeffrey Scott Cooley, an attending gastroenterologist at Cooley Dickinson Hospital, “the primary manifestation of celiac disease in adults is iron deficiency and anemia; in severe disease manifestations, diarrhea and weight loss also can be be significant. There’s a problem with absorption of nutrients, especially iron, calcium, and vitamin D, so people can also get osteoporosis.”

In severe cases, he noted, “people can get profoundly dehydrated, and there is an increased risk of cancer.”

However, Hirsch noted, a diet rich in red meats and fried foods poses long-term health risks as well, including some related to cancer, yet people eat those foods all the time, “so can we say with any confidence that the risk is any greater for people with celiac who are asymptomatic?”

Even that word ’asymptomatic’ is problematic, Hirsch noted, because many people have dropped gluten from their diet for other reasons and found they felt much better; they had no idea that would happen because they had been so used to eating a certain way.

“There are people with irritable bowel syndrome who don’t have celiac disease but who clearly feel better on a gluten-free diet,” he said. “Most of us get away with enjoying it, but some cultures don’t eat a lot of glutens at all. For instance, in Mexico, everything is based around corn, and wheat is not a big part of their diet.”

For many with celiac disease, there’s no question about making dietary changes, since the symptoms are far too obvious and uncomfortable. But for others, it’s not such a clear choice.

Villi Defied

According to the Mayo Clinic, the small intestine is normally lined with tiny, hair-like projections called villi, which absorb vitamins, minerals and other nutrients from food. Celiac disease damages the villi so that the body is unable to absorb necessary nutrients, such as fat, protein, vitamins, and minerals, which are instead eliminated with one’s stool.

“For some reason, your immune system senses these proteins and reacts inappropriately to them, and it damages the lining of your small intestines, and as a result, you’re unable to absorb food. It can present in a variety of different ways,” Hirsch said.

“The classic presentation is a toddler who has a distended belly, is irritable, malnourished, has a rash, and is just a very uncomfortable child,” he added. But because of the inconsistency in symptoms, “a lot of people are walking around not realizing they have celiac disease.”

Left untreated by dietary changes, celiac disease can lead to several complications, including:

• Malnutrition. This can occur in spite of what appears to be an adequate diet. Because vital nutrients are lost rather than absorbed in the bloodstream, malabsorption can lead to anemia and weight loss, as well as stunting growth and delaying development in children.
• Loss of calcium and bone density. The malabsorption and loss of calcium and vitamin D may result in osteomalacia, a softening of the bone also known as rickets, as well asosteoporosis, a loss of bone density that leaves the bones fragile and prone to fracture.
• Lactose intolerance. Because of damage to the small intestine from gluten, even foods that don’t contain gluten may cause abdominal pain and diarrhea. Some people with celiac disease aren’t able to tolerate lactose, a milk sugar. Some patients who stay gluten-free long enough for their intestine to heal may eventually be able to return to milk products, but that’s not always the case.
• Neurological complications. Celiac disease has also been linked to disorders of the nervous system, including seizures.
• Cancer. As stated earlier, people with celiac disease who don’t maintain a gluten-free diet have a greater chance of getting one of several forms of cancer, including intestinal lymphoma and bowel cancer.

Better Diagnosis

The diagnosis of celiac has risen sharply over the past few decades, and the reason has everything to do with identifying the disease in people without obvious symptoms, or mild symptoms that mimic other conditions, from ulcers to anemia to Crohn’s disease.

“It used to occur in 1 in 8,000 to 9,000 people, and the primary symptom that led one to suspect it was weight loss and diarrhea,” Cooley said. “However, with careful study, recognition now occurs in 1 in about 130 patients. It’s much more common. The reason is because people are looking for it more frequently; also, a blood test can be used to look for the disease, and it’s not that invasive.”

That test came about some 20 years ago; previously, the only way to diagnose celiac was to perform an intestinal biopsy — “several of them, actually,” Hirsch said. Both tests are used in tandem today, he added, and doctors are more aggressively looking for celiac disease outside of patients with the classic presentation such as in short-stature clinics, or among children with diabetes. “They’ve found that about 5{06cf2b9696b159f874511d23dbc893eb1ac83014175ed30550cfff22781411e5} of all diabetics have celiac disease.”

Cooley said doctors talk about celiac as an iceberg. “Many years ago, people were diagnosed only at the tip of the iceberg. More subtle forms of the disease were not diagnosed, and it could take up to eight years to make a diagnosis of celiac from the first synmptoms. Now, symptoms are recognized more frequently.”

The condition — which is immunogenetic in nature, meaning family history is a key risk factor, can also occur at any stage of life, he said, noting that 20{06cf2b9696b159f874511d23dbc893eb1ac83014175ed30550cfff22781411e5} of cases are diagnosed after age 60.

“The cure is a gluten-free diet,” Cooley said. “That puts people into remission, and within several years, they should return to a totally normal life, with a normal risk of cancer, and have normal bones and blood work. But for the rest of their lives, they need to be on a gluten-free diet.”

That means constantly checking food labels for the presence of glutens in foods ranging from cakes and pies to breads and cereals; cookies and crackers to pastas, soups, and sauces; even salad dressings and beer can be dangerous.

There’s still plenty of debate over whether oats are harmful for most people with celiac disease, Hirsch said, but the Mayo Clinic generally recommends avoiding oat products unless they are specifically labeled gluten-free. Fortunately, celiac patients have plenty of options for safe grains, including corn, buckwheat, rice, and quinoa, as well as a wide range of meats, fruits, vegetables, potatoes, and even a growing number of breads manufactured and advertised as gluten-free.

“Many stores and restaurants offer gluten-free products, because 1 in 130 people is a significant number,” Cooley noted. “So it’s markedly easier for patients than it used to be.”

Knowledge Is Power

Doctors still have plenty to learn about celiac, Hirsch said, and it’s important that they do, considering that it can lead to serious complications if left untreated.

“Years ago, someone figured out the connection between wheat and celiac, but there are a lot of confusing parts of the diagnosis,” he told HCN. “Complications come up when someone has a positive blood test but a negative biopsy. It’s not clear what to do with these people.”

Fortunately, for those clearly diagnosed, once they’ve removed all gluten from their diet, the intestinal inflammation begins to subside, usually within several weeks, though they may start to feel better in just a few days. Complete healing and regrowth of the villi may take several months, or as long as two to three years; this healing in the small intestine tends to occur more quickly in children than it does in adults.

For celiac sufferers who aren’t … well, suffering, at least not with obvious symptoms, it comes back to that question of whether they want to completely change their eating habits in exchange for greater peace of mind.

“With children, it’s a little easier; you don’t want to risk short stature and bone development,” he added. “But for adults, it’s a little harder to change their whole life, everything they’ve been eating, based on a potentially small risk.”

He stressed, however, that those risks, while often small and hard to measure, are real, and cancer is a scary prospect for anyone. “So how do you take someone who feels perfectly fine and ask them to make a tremendous change in their life due to risks that may be small?”

It’s a question that, for an increasing number of people, can be difficult to digest.