Being free of gluten - and easing celiac woes

For those with celiac disease, changing diet is more than a fad

July 29, 2013 Updated: July 29, 2013 10:43pm

For Lynn Opp, life was rarely lived in the absence of some sort of ache or pain.

A headache subsided, but a stomachache soon followed. Bloating would resolve, then she would later develop a kidney infection. In her 20s and 30s alone, Opp, now 53, suffered through more than 50 urinary tract infections.

For no apparent reason, she was always, as she put it, "low-level ill."

"I just thought that was normal," recalled the Concord resident. "It just was part of my life."

Then, at 47, she was struck abruptly by constant, throbbing joint pain. Sometimes it would wake her in the middle of the night. A blood test revealed the likely source of the pain, as well as a lifetime spent feeling decidedly less than great.

She has celiac disease, an autoimmune disorder in which the gluten proteins found in wheat, barley and rye cause the body to turn against itself, attacking the small intestine.

"The diagnosis changed my life," she said. "My pain went away."

The disease is thought to affect more than 2 million Americans. Though only a sliver of that population has been formally diagnosed, an increased awareness of celiac in recent years has inspired many to self-diagnose, striking all things gluten from their diet in a quest to cure whatever ails them. Many of those people do not actually have the disease, medical specialists say.

"It is estimated that 1.6 million Americans follow a gluten-free diet without a diagnosis of celiac," said Dr. Arnold Han, a gastroenterologist at Stanford. "Of that 1.6 million, the vast majority don't have celiac."

Wave of devotees

The ranks of gluten-free devotees - including a slew of celebrities who have endorsed the gluten-free way of life - are only bolstered by popular culture assessments of the diet, proclaiming it will do everything from help people shed pounds to keep cholesterol under control.

There aren't specific health risks associated with eating gluten-free without medical instruction - it's just unnecessary. The real risk is an assumption of celiac when it might be something else.

To confirm a diagnosis, most patients, like Opp, undergo a blood test that looks for antibodies to gluten, followed by a biopsy that examines whether the small intestine has been damaged.

If a suspecting patient has already eliminated gluten from his diet, though, the tests are ineffective. A separate test can identify whether the gene for celiac exists, but its main purpose is to rule out celiac as a diagnosis. The majority of those with the gene don't actually have the disease.

Patients who suspect they have celiac and have slashed gluten from their diets are then faced with either resuming gluten consumption for several weeks, or even months, in order to be tested, or simply continuing with a gluten-free course of therapy on the assumption that they do.

Something else

Dr. Amy Burkhart, a celiac specialist in Napa, said about half of her patients come in already on a self-imposed gluten-free regimen. "Once that happens, we are stuck not knowing whether they have celiac or something else," she said.

That something else, it turns out, might be a lot of things. They might have a wheat allergy or something called non-celiac gluten sensitivity. Or something else entirely.

The treatment might end up being the same, but the distinctions are potentially important.

For instance, non-celiac gluten sensitivity is a mouthful of a condition that doctors understand very little about. Whereas doctors understand both the trigger for celiac and the disease's associated risks, non-celiac gluten sensitivity is essentially a set of symptoms without a conclusive cause or consequence. The trigger might not even be gluten, it could be another wheat protein entirely.

"It's quite complicated, and we don't even really understand what it is," he said.

The complications that can arise from untreated celiac disease are severe, including anemia, osteoporosis and, in extreme cases, lymphoma. Those who are eventually diagnosed often have suffered for years.

Gluten resistance

Despite the importance of diagnosis, Burkhart said that of her patients who come in having already gone gluten free, almost no one agrees to resume eating gluten for the sake of a firm answer.

Brian Schardt, of Castro Valley, cut gluten out of his diet in the fall 2011. For more than a decade he had suffered from issues such as bloating in his abdomen, foggy thinking, joint pain and severe diarrhea - some of the many symptoms of celiac.

Eventually, a friend's girlfriend mentioned celiac. He made the gluten-free jump, and a few weeks later, he reported, he woke up one day and "just felt better." A test confirmed that he had the gene, but it's still uncertain whether he has the disease. But not to him.

"It's a logical conclusion that that's what I have," said Schardt, 31, a PG&E project manager. "I cut (gluten) out of my diet and I instantly felt better within weeks."

Han, the Stanford gastroenterologist, recently led a small study that examined in part a diagnostic method that wouldn't require patients to go back on gluten for so long.

The study, published last week in Proceedings of the National Academy of Sciences, found that certain classes of immune cells appeared only in patients with a celiac diagnosis. Those cells showed up in blood tests after previously gluten-free patients ate white bread for only three successive days.

A hopeful step

The study is a promising preliminary step toward separating those who actually have the disease from those who just think they do.

A simpler diagnostic procedure might also help to raise the profile of the disease, which is often overshadowed by gluten-free, the diet fad.

For Opp, the gluten-free way of life has not necessarily been easy.

She was initially apprehensive about getting the intestinal biopsy to confirm the results. Her doctor encouraged her to get the test.

"He said, 'It's an impossible diet, so if you don't have it, you would want to know,' " she said.

She went on a two-week gluten binge - doughnuts, pizza, fried chicken, pasta. It was wonderful, except that she felt terrible.

The biopsy was clearly positive. Her small intestine had incurred significant damage from probably decades of self-imposed attacks. Her symptoms disappeared within a month of going gluten-free.

It's not a diet she would pick by choice, but it's also one, she says, that has probably saved her life.


Kristen V. Brown

Technology Reporter

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