Gluten-related medical conditions can be difficult to diagnose

Karen Koelling, an Asheville resident who was diagnosed with celiac disease as an infant, experiences extreme skin eruptions and rashes if she encounters even the tiniest bit of gluten. She is a part of the Celiac Support Group in Hendersonville as well as the Asheville Gluten Intolerance group, which she recommends to anyone needing support and resources.

While people with celiac must be hyper-vigilant about the food they eat, Koelling says that increased awareness has made things easier, especially in the last five years. “This is one of the very few autoimmune diseases where the trigger is known, and that’s very helpful. There are lots of autoimmune diseases where the trigger is not apparent,” she says. “There’s no medication, but really if a person stays on a gluten-free diet very carefully, they will have no symptoms. Their body will heal, and they will be just fine.”

Celiac disease has a long list of symptoms — 300, in fact, says Ingles dietitian Leah McGrath. That long list, which includes everything from weight loss to weight gain, eczema and depression, makes the condition an especially difficult one to diagnose. “To be honest, the medical community is lagging behind in recognizing the symptoms,” says McGrath. “For example, maybe someone is anemic and they’re treated by their family practice doctor for anemia. … And then they go to their gynecologist for chronic yeast infections, so maybe they get treated with Monistat, but they also have chronic migraine headaches, and somebody refers them to a neurologist. Well, all those things can be symptoms of celiac disease, but no one puts them together.”

Some people, however, may have gluten sensitivity even if they do not have celiac disease. But what do we really know about gluten sensitivity? Found in grains like wheat, gluten is the mix of proteins that help grains maintain their shape and give them elasticity. But in some cases these proteins cause crippling, chronic pain and illness.

While celiac is a widely acknowledged condition, science is still catching up with the issue of gluten sensitivity, and it remains controversial. McGrath notes an Australian study in which people who self-identified as gluten-sensitive were given gluten-free foods as well as foods containing gluten, and there was no difference in their reactions. This suggests that some people are needlessly cutting gluten from their diet.

Dr. James Biddle of Asheville Integrative Medicine sees plenty of patients who are concerned that they might be gluten-sensitive. Unlike celiac disease, which is diagnosed via intestinal biopsy, gluten sensitivity is confirmed by a simple blood test and is defined by the presence of certain antibodies in the blood. “It used to be thought that gluten sensitivity was no more serious than any common food allergy,” says Biddle. “But recent studies show that it’s just as serious as celiac disease, with the same long-term health risks.”

A classic indicator of a gluten sensitivity is weight loss, but Biddle says that is not always the case, and about a third of people actually gain weight. “One of the big things that people see is emotional disorders like depression and anxiety,” he says. “They might also experience skin disorders, such as eczema, or fatigue, but really it tends to show up wherever the person’s weak link is. For some people, it could be joint pain.”

For children, gluten may present a different problem. Biddle has worked with parents who opt for a gluten-free diet for their children with ADHD and autism. “Some of that is because a certain percentage of any population is going to have gluten sensitivity,” he says. “But specifically in younger people, there’s a different problem, in that the incomplete digestion of gluten creates a morphinelike compound called gluteomorphine, which causes brain dysfunction. So when these kids are eating gluten, they’re essentially tripping on morphine, and when they aren’t eating gluten, they’re experiencing morphine withdrawal.”

On the other hand, tests for gluten sensitivity may be inaccurate, says Biddle, citing another report. “In this study, they took a bunch of people with chronic illnesses, and they did the biopsy for celiac disease and the blood test for gluten sensitivity, and everyone who tested positive, they took out of the study. So you have a bunch of people who were chronically ill, who tested negative for gluten sensitivity and celiac disease and put all those people on a 100 percent gluten-free diet. About half of them had significant improvements in their health. So that shows that our testing is not so good yet.”

Biddle recommends that patients put themselves on a strict, gluten-free diet for six weeks. Assuming they don’t change anything else about their diet, it will be very obvious whether gluten is the problem, he says.

Some people, however, insist that getting rid of gluten simply makes them feel better, whether or not they have been diagnosed with celiac disease or gluten sensitivity. And for others, going gluten-free is about (not always successful) weight-loss strategy.

Of course, it can be difficult to cut out gluten and not change one’s diet dramatically, considering that many foods contain it. McGrath notes that a person might feel better on a gluten-free diet simply because they’re eating healthier. “The important thing to remember there, we don’t always know where their starting point was,” she says.

“I run into a lot of people who say, ‘Oh my gosh, I went gluten-free, and I feel so much better.’ You start really talking to them, and you realize their diet wasn’t optimal to begin with,” McGrath says. “They were eating things like pastas and beer and breads, and they start substituting more fruits and vegetables. Maybe they’re eating more lean meat, and their diet is just better overall. It might not be the gluten at all.”

Eating gluten-free doesn’t always mean making healthy choices, she adds. There are plenty of gluten-free options that are high in calories and not necessarily more nutritious than their glutinous counterparts.

Especially in Asheville, where gluten-free alternatives are readily available and resources are abundant, making healthy choices is becoming easier for people with gluten sensitivity and celiac disease.

Koelling recommends that those with gluten sensitivities seek support and information in their own communities. “Many times a person has been recently diagnosed … and they don’t know what to do,” she says. “The doctors aren’t always helpful because they don’t have nutrition backgrounds. So these support groups can help explain the other [symptoms] they might be experiencing that may be connected to gluten sensitivity, where to go for information. There are lots of websites and resources for where to find gluten-free food, which of course is paramount.”

Diagnosing gluten-related conditions: a clarification

Xpress’ June 24 Wellness article, “Gluten-related medical conditions can be difficult to diagnose,” elicited a fair amount of feedback. As the headline of the article suggests, gluten sensitivity is a complicated and even controversial diagnosis. With the help of our readers, we realized that a clarification is warranted.

The article stated that gluten sensitivity can be diagnosed by way of blood testing. In fact, there are three blood tests that can detect celiac-related gluten sensitivity. Experts warn that these tests are not sensitive, in that there are often false negatives.

It is important to note that these blood tests are for celiac-related gluten sensitivity. To date, there is no existing non-celiac gluten sensitivity test, which is why the diagnosis is a difficult one to confirm. One reader mentioned that people who feel better after eliminating gluten from their diet may actually be reacting to different compounds found in many gluten-containing foods known as FODMAPs. It may be the case that those who eliminate gluten are actually sensitive to these short-chain carbohydrates, which are also found in wheat, barley, rye and many fruits and vegetables. A breath hydrogen test for lactose malabsorption and fructose malabsorption can help identify this disorder.

Yet another reader pointed out that while an elimination diet is the only scientifically proven way to diagnose non-celiac gluten sensitivity, it is crucial to test for celiac before eliminating gluten from one’s diet. Once patients are on a gluten-free diet for as little as three weeks, the blood tests for celiac disease become less accurate, further complicating the diagnostic process for celiac disease.

As always, we welcome reader responses and discussion. Gluten sensitivity is an important topic in Asheville and beyond, and it is encouraging that so many local wellness providers are able to provide insight and guidance on the topic. Special thanks for their input go to: clinical dietician Laurie Steenwyk of Pardee Hospital, dietitian Leah McGrath of Ingles Markets, Sheila Horine, branch manager of the Gluten Intolerance Group of Asheville, Dr. James Biddle of Asheville Integrative Medicine for their input and Karen Ingraham of celiacgirlri.com.

For those interested in learning more, Ingles will be hosting its 11th annual Gluten-Free Education Event and Vendor Expo on Saturday, Oct. 31, at the Doubletree hotel in Biltmore Village.