From Allergic Living’s magazine Fall 2012 issue.
IT WAS the itch that wouldn’t quit. Melinda Dennis had developed a painful skin rash that turned out to be dermatitis herpetiformis , a sure sign of celiac disease.
But this was 1990 and back then so little was known about celiac disease and its symptoms that Dennis thought she’d just picked up the nasty rash from a germ-infested yoga mat. She then got the proper diagnosis and began the long journey of teaching herself about the foods that contain gluten, a protein in wheat, barley and rye products, which her immune system treats like an invading enemy.
Dennis learned to scour ingredients labels on foods and to be diligent eating outside her home. With vigilance, the rash soon disappeared. It was reasonable to assume that the gastric symptoms – bloating and alternating diarrhea or constipation – would go away, too. But oddly, they didn’t.
Dennis, who was 25 at the time, knew that she’d worked hard to be gluten-free  – it had to be something else. She squared her shoulders and began to experiment, eating small amounts of different foods to gauge her body’s responses. Dairy was definitely causing her to feel bloating. It turned out that, along with celiac disease, she’d become lactose intolerant, which meant she was unable to properly digest the sugar found in dairy products.
“I could eat yogurt and get away with hard cheeses,” says Dennis, a dietitian who holds a Master of Science in nutrition and health promotion and helped to found the celiac center in 2004 at Boston’s Beth Israel Deaconess Medical Center. But in those early months, Dennis had to cut most dairy products out of her diet.
She is not alone. One out of every 100 people in North America is thought to have celiac disease while Dr. Peter Green, the director of the Celiac Disease Center at Columbia University, says that between 10 to 20 per cent of those with the autoimmune disease also have differing degrees of lactose intolerance – creating a double diet whammy to manage.
Gluten’s Internal Toll
While research on the relationship between celiac disease and lactose intolerance is scant, an intriguing Italian study was published in the journal Digestion in 2005. In it, researchers screened 54 people who had tested positive for lactose intolerance but showed no other symptoms for celiac disease, and a control group of 50 blood donors.
Those who had the antibodies associated with celiac disease underwent further intestinal biopsies to see if there was damage to the villi, the finger-like projections that line the intestinal wall and act as gatekeepers for nutrients to enter the body.
The findings were startling: 24 per cent of the patients with lactose intolerance had damaged or atrophied villi, a sure sign of celiac disease, compared to a mere 2 per cent of the control group. Today, Dr. Peter Green says there’s a “very sensible recommendation” that all patients who test positive for lactose intolerance should be examined further for celiac disease before they are placed on a dairy-free diet.
He is concerned, however, that too many doctors and dietitians automatically advise lactose intolerant patients to avoid dairy – a knee jerk response that fails to take into account that celiac disease may be the real culprit.
By shortening or completely flattening the villi, celiac disease disrupts the uptake of life-sustaining nutrients, and can lead to other serious conditions – from malnutrition to anemia, osteoporosis and even cancer. The villi also contain lactase, the enzyme necessary to process lactose, the sugar in dairy. So when the villi are damaged, dairy intolerance is often the result.
The difficulty digesting milk products that stems from celiac damage is called secondary lactose intolerance. Green says the good news is that once you eliminate gluten from your diet (the only current treatment for celiac disease), your small intestine begins to heal and eventually, you may be able to have dairy products again. This was the case for Dennis, who today only abstains from dairy because it makes her feel congested.
Green notes that it may take six months or longer on the gluten-free diet for celiac patients to develop tolerance, and you may not tolerate dairy in the same quantities as before.
“Try a bit of hard cheese or some yogurt and see how that goes. If that works, try something else,” he says. “Try a lactase tablet to help digestion. Some people find that’s all they need.”
Lactose intolerance may not be the only other digestive issue. At the Columbia center, most of Green’s patients have persistent symptoms after they go gluten-free. “We go through a checklist with them because there are a number of possible causes for this, from lactose or fructose (fruit sugar) intolerance to bacterial overgrowth, where bacteria are present in the small intestine when they shouldn’t be,” he says.
Get the Breath Test
Green stresses the need for a breath test to confirm lactose intolerance. It is a simple procedure, like a really long roadside breathalyzer in which the patient drinks a beverage that contains lactose and then blows into a small, narrow plastic bag every 15 minutes or so over two to three hours.
The bag is then attached to a machine that measures gases such as hydrogen and methane, which are not supposed to be in the small intestine. If they are, it’s proof that the digestion of the lactose molecule has been ever so rudely interrupted.
The importance of a breath test is underscored by the fact that the form of lasting intolerance, primary lactase deficiency, is also common, especially in older adults. Prevalence studies have had varying results, but the National Institutes of Health estimates that between 30 and 50 million Americans have lactose intolerance.
Next: May not mean complete dairy avoidance
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When it comes to the primary deficiency, Green sees a fundamental digestive issue at play: humans are the only mammals to continue to drink milk after they’re weaned. In Africa, Asia and the Middle East, he says, dairy products are not common to the diet so that when they are introduced into it, the body is not prepared.
As well, as people age, their digestive systems tend to become more sensitive in general, reacting to spicy foods or dairy products with some level of burping, bloating and discomfort.
Fortunately, replacing or reducing dairy has become easier these days and lactose intolerance seldom requires complete avoidance (as is the case with milk allergy). Dennis, who is co-author of the book Real Life with Celiac Disease:  Troubleshooting and Thriving Gluten Free, says that if you need to replace cow’s milk, try a milk alternative made from almond or hemp. Some people will be able to tolerate whole (cow’s) milk.
Other foods rich in calcium include fish such as salmon and perch, leafy green vegetables like kale and spinach and sesame seeds, while vitamin D is found in fatty fish (think salmon again), beef liver and egg yolks. And don’t forget vitamin and calcium supplements.
“You need to make sure that you’re making up what you lack, especially when you’re talking about kids,” Dennis says. “While their guts will heal much faster than do those of adults, they’re also growing and need the protein, vitamin D, calcium, phosphorus and calories to thrive.”
“The good thing,” she continues, “is that we know so much more today. When I was diagnosed, I had a sharp learning curve to follow all on my own.”
Dairy: Not All or None
Many people who are lactose intolerant can to eat hard cheese and yogurt without symptoms. Others may have to take a lactase pill to aid digestion.
Consult with your doctor if you suffer with the following after eating dairy-based foods:
• abdominal pain
• bloating or nausea
A breath test, simple and non-invasive, may be recommended.
Case Study: Living with No Gluten, Little Dairy
When she was diagnosed with celiac disease 18 years ago, Lee Graham, the president of a Massachusetts celiac support group called Healthy Villi , did what she was supposed to: she cut gluten from her diet and waited to feel better. When she continued to have abdominal symptoms, she temporarily cut dairy out, too, waiting a good half year before testing what milk products she could, and could not, eat.
“I can have small amounts of yogurt, ice cream and milk with cereal, not every day, but every so often,” says Graham. “If I had something like yogurt every day, I’d have problems.”
Sherry Condo, a hospital clerk and fitness buff who makes her home in Kahnawake Mohawk Territory south of Montreal, already knew she was lactose intolerant when she was diagnosed six years ago with celiac disease. She has changed her diet, save for the few times a year she that she succumbs to the siren call of Peanut Butter Parfait from Dairy Queen despite the hot fudge sauce and the milk.
“I know I should never do it but sometimes, I have such a craving,” the 48-year-old admits. “It’s not something I do on the spur of the moment, like, ‘Let’s go to Dairy Queen and be bad.’ I have to plan it all out because I know that the next day I need to be safe in my house near a bathroom.”
Her gastroenterologist, whom she sees every six months for blood work and a colonoscopy, can tell when she has been cheating.
“He’ll put his hand on his hips, shake his head a few times and scold me. But I’m doing really well. I had to have iron transfusions three times in the month after I was diagnosed with celiac disease and I never want to be in that position again.”
And then, there is Margie Sweeney, an obstetrician/gynecologist just outside of Boston who suffered from severe fatigue, bloating, severe itching and joint swelling before she eliminated first gluten and then dairy from her diet. These days, she doesn’t touch either, for fear of reliving symptoms that once caused her to double over in pain.
“If I miss anything, it’s cheese. I would take eating cheese over gluten any day,” she says.
“But I don’t spend too much time thinking of the things I can’t eat and really try to focus on the things that I can and enjoy. I remind myself how much better I feel.”
Celiac Disease’s Toll on Your Teeth