Our editor interviews a longtime expert on celiac disease about how, why, and when to go gluten-free.
[Updated July 12, 2017]
Stefano Guandalini, M.D., medical director of the University of Chicago Celiac Disease Center and one of the world’s leading experts on celiac disease, talks with Gluten Free & More editor Alicia Woodward about this often misunderstood and vastly undiagnosed genetic disorder.
Q: Most people aren’t aware that certain neurological conditions are related to celiac disease. What can you tell us about this link?
A: If you look at neurological disorders—idiopathic epilepsy (epilepsy without a known cause), ataxia (unstable gait, clumsiness), peripheral neuropathy (tingling or numbness in the hands or feet), or even recurrent headaches—you’ll find a higher than expected percentage of these patients have celiac disease. Some syndromes, like epilepsy with calcification in the brain, are definitely linked to celiac disease. Patients and their doctors should know that certain chronic neurological disorders are due to celiac disease. Unfortunately, there’s a lack of awareness about this in the medical community.
Q: What about psychiatric symptoms and celiac disease?
A: Awareness is lacking even more in regard to psychiatric disturbances. Hallucinations, depression, anxiety, suicide ideation—they’re all associated with celiac disease. It’s well documented in medical literature.
Years ago, I treated an 8-year-old girl with celiac disease who was admitted to the hospital with profound depression and hallucinations. A blood test revealed that her gluten antibodies were incredibly elevated. Apparently, the parents had been giving her cookies on the weekends. I explained to her parents that a gluten-free diet means a gluten-free diet. When I saw the girl again, she was back to normal. This little girl had no GI symptoms and that’s what led the parents to believe that not sticking to the diet was okay.
Celiac disease can also present as autistic-like behavior. Autism and celiac disease are distinct, unrelated entities but some autistic-like behaviors, especially in young children, are associated with celiac disease. An undiagnosed celiac child may, in fact, appear sad, introverted, unwilling to socialize or communicate even with his or her parents or the child may be cranky and excessively irritable. Fortunately, all these symptoms, including depression, anxiety and hallucinations, promptly regress on a gluten-free diet.
Q: So patients can have these sorts of symptoms with no accompanying gastrointestinal symptoms—and have no villi damage?
A: That is correct. These neurologic, psychiatric, emotional and autistic-like manifestations have been described in celiac patients who show minimal or no GI symptoms and no damage in the small intestine.
Q: With no intestinal damage, a biopsy would be negative. Is the disease diagnosed with a blood test?
A: Yes. The anti-tissue transglutaminase screening test, or tTG, is valid in these circumstances.
Q: Would you recommend that anyone with neurologic or psychiatric symptoms of unknown origin that persist regardless of treatment be screened for celiac disease?
A: Yes. These conditions should be considered among those that require screening.
Q: There’s also new information about breastfeeding and its protective role in celiac disease. Can you tell us about it?
A: In the mid-1960s, there was evidence suggesting that prolonged breastfeeding was protective against celiac disease. “Prolonged” means that breastfeeding continues for at least two to three months after gluten is introduced into a baby’s diet. Today, there’s little doubt that prolonged breastfeeding, particularly if the baby is breastfed at the time gluten is introduced, has a protective role. What remains unclear is whether it prevents the onset of celiac disease or simply postpones onset to later years. We need more long-term studies to answer this question.
Q: What’s your advice about introducing gluten?
A: Not too early and not too much. Feeding gluten to a baby within the first three to four months of life actually favors developing the disease. Delayed introduction seems to postpone it. There’s a large, multi-center study now ongoing in Europe and we’re about to set up a similar study in this country to address this question. Preliminary data shows that gluten introduced later, in the second half of the first year of life, may be better but it’s still not clear at this time. What is clear is that gluten introduced within the first three or four months of life is detrimental and that the amount of gluten ingested during the first several weeks of introduction should be kept low, in the order of just a few grams per day.
Q: Let’s go from infants to elders. Suppose a chronically ill 85-year-old man has celiac symptoms but has never been tested. Several relatives have celiac so the disease runs in the family. At his age, is it worth it to disturb a lifestyle by changing the diet?
A: Absolutely, yes. There is no question that anyone who fulfills the criteria for celiac disease—at any age—should be tested for the disease. You can’t impose the diet on anyone, of course, so this gentleman may choose not to go gluten free. From a medical standpoint, however, he should be tested and be allowed to make that choice.
Q: It’s sometimes challenging for celiacs to stay on the gluten-free diet, especially when traveling or eating out. Is it okay to cheat occasionally?
A: No, it’s not okay. Celiacs must avoid gluten. Ingesting gluten activates an autoimmune response that keeps a mild degree of inflammation ongoing. Indiscretions are equivalent to eating a gluten-containing diet.
Q: We have readers who don’t have celiac disease but feel much better on the gluten-free diet. They’re gluten sensitive, right?
A: Years ago, I was skeptical about so-called gluten sensitivity. Today I’m very respectful of individuals who don’t have celiac disease but who report a real benefit from the gluten-free diet. Improvement in health can be coincidental to starting the diet or it can be due to a placebo effect—but certainly not in every case. There’s a lot of research going on in this area, including in our lab at the University of Chicago Celiac Disease Center. The data is preliminary but suffice it to say that research is now revealing that changes do occur in the intestines of gluten-sensitive patients when they ingest gluten. More will be uncovered about this in the future.
Let me strongly emphasize here that people should not try the gluten-free diet before they’ve been screened for celiac disease. Once someone has been eating gluten free for several weeks, it’s difficult, if not impossible, to accurately diagnose the disease. Then down the road, the patient thinks he or she is not a celiac and starts eating gluten again. That can set the patient up for all the risks of the disease, including malignancy and higher mortality rate. Again, it is not in the best interest of the patient to do a gluten-free dietetic trial before he or she is screened for celiac disease.
Q: Any news on a cure for celiac disease?
A: There are promising developments on the horizon. Clinical trials are advancing on loratizide acetate (formerly known as AT-1001), a substance developed by Alessio Fasano, M.D., and his team of researchers at the University of Maryland School of Medicine’s Center for Celiac Research. It’s hoped that this drug can improve the intestinal barrier, thereby limiting the amount of gluten that may cross the mucosal barrier and activate the immune system in the gut. This isn’t a cure but it would limit intestinal damage in celiacs who unwillingly ingest very small amounts of gluten.
There’s also advanced experimentation on a mixture of bacterial enzymes that, when ingested with gluten-containing meals, may be able to completely digest the gluten before it enters the small intestine. This approach (known as glutenase), developed by a group of researchers led by Chaitan Khosla, PhD, at Stanford University, appears quite promising, as well. It would limit damage caused by gluten ingestion in celiac patients but, again, this is not a cure.
In terms of a cure, there’s work in a few laboratories around the world, including our own at the University of Chicago, to develop a vaccine. This is a very ambitious project based on recreating a reliable model of celiac disease in a mouse and then finding ways to induce gluten tolerance in such a system.
Q: So children could be vaccinated like they are for, say, polio?
A: Yes, children with genetic disposition for celiac disease could be vaccinated. In addition, the immune systems of individuals who already have the disease could be tweaked to induce tolerance to gluten. Hopefully when this work comes to fruition, perhaps in eight to ten years, it will be the cure for celiac disease.
Pediatric gastroenterologist Stefano Guandalini, MD, serves as professor of pediatrics at the University of Chicago and is Section Chief of Pediatric Gastroenterology, Hepatology and Nutrition at the University of Chicago Medical Center. For more about celiac disease and research for a cure, go to celiacdisease.net.