About two-thirds of those on the gluten-free diet for more than five years who responded to the questionnaire survey were frustrated with others feeling sorry for them, while a quarter felt embarrassed by their dietary needs. Nearly one-third of participants felt as though they were a burden to others.

An astonishing 40 percent still had trouble with family members or friends thinking “just a little” gluten wouldn’t be harmful. Overall, frustration and isolation were the most common negative emotions expressed, even after five years of living gluten-free.

“To think after five years people are feeling isolated is very, very sad. That’s not an easy thing,” says Marion Zarkadas, lead author of the study and a retired member of the CCA’s advisory board. “If you can’t eat out with your friends or your family when away from home, that’s very isolating.”

Information was also gathered from individuals who had been on a gluten-free diet for fewer than five years. In that group, negative emotions tended to be even stronger. For instance, a greater proportion felt a burden to others, and those new to going gluten-free had difficulty asking others to accommodate the diet.

Researchers also discovered that emotional difficulties such as feelings of embarrassment and neglect, dropped significantly with time on the diet. This suggests that it does become more manageable as time goes on.

“The people who really need help are the newly diagnosed,” says Zarkadas. “They need to know what the problems are and how to solve them, and they need to know early on.” She thinks the information gleaned from this survey could be incorporated in support groups and sessions for the newly diagnosed.

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Gluten in Makeup: New Debate on Celiac Safety

Remember that first heady discovery of makeup? The memories flash back like a psychedelic slideshow: pastel lip gloss, electric blue mascara, hot pink blush and black kohl eyeliner that, intemperately applied, made one look like a raccoon. Then, there were the body products – lotions, toners, shampoos – that smelled of cotton candy and chemicals: who knew what they contained? Most of us didn’t care.

But what if, years later, it turns out you have celiac disease and there’s gluten in your new lipstick and more fashionably muted eye makeup?

So far, studies have suggested that such products don’t pose a risk because the gluten molecule is too large to be absorbed through the skin; it needs to be ingested. That’s why most gastroenterologists advise their celiac patients to take care when buying cosmetics that come close to the eyes and mouth, like mascara, which flakes, and lipsticks because they are easily licked off. But don’t worry unduly about gluten in lotions and shampoos, they say. There is one caveat: Dr. Alessio Fasano, director of the University of Maryland Center for Celiac Research, cautions against using gluten-containing products near broken skin.

Yet the risk to celiac patients from makeup and personal products is not black and white. No large study has been done that specifically looks at the consequences of those with celiac applying products on the skin that contain gluten, the protein in wheat, barley and rye that triggers an autoimmune reaction and leads to a disparate array of symptoms, from stomach bloat and diarrhea, and longer term conditions like osteoporosis. How often does accidental ingestion of these products occur? We have yet to learn.

What is more apparent is the number of patients who report symptoms. From British Columbia to Colorado, Kentucky and New York, Allergic Living has received comments from people with celiac disease who link their use of personal products to skin rashes or intestinal issues. The products range from eye makeup to foundation, face creams, shampoos and conditioners.

While such reports are only anecdotal, a case study that was published in late 2011 and presented at the American College of Gastroenterology’s annual meeting is causing a flurry of debate in the celiac community, among doctors and patients.

Next: Lotion case causes a stir

Check out Allergic Living’s roundup of celiac disease events taking place in May 2013:

This travelling celiac expo stops in Philly on May 18. Admission is $10, but children under 10 enter for free. Meet medical experts and watch a cooking demonstration on the Rudi’s Gluten Free Bakery Stage, while sampling gluten-free products from dozens of local and national companies.

Click here for more information and to register

Each Monday this May, the Canadian Celiac Association is partnering with Turtle Jack’s Muskoka Grill for their Right to Safe Food fundraiser. After downloading a coupon from the CCA’s website, participants can bring it to a participating Turtle Jack’s location and have 25 percent of their bill donated to the CCA’s Right to Safe Food program.
Click here for more information

So Delicious Dairy Free will donate $1 to NFCA for every Facebook like they receive during Celiac Awareness Month, up to $5,000. So get liking!

So Delicious Facebook page

Laura Hahn, winner of NBC’s “Next Local TV Chef”, will reveal her secrets to gluten-free cooking. In two hours, participants will learn how to make an entire Vietnamese meal that’s both delicious and gluten-free.

Click here for more information and to purchase tickets

Researchers from Italy and the United States have analyzed the entire genome, or DNA structure, of the grain and have shown it to be free of gluten on a molecular level. This confirms earlier reports, studies and successful food challenges which all suggested the cereal contains no gluten and is considered safe for those with celiac disease.

Because the sorghum genome was only recently published, until now scientists had no way of proving on a molecular level that the grain was safe for people living with celiac disease. Allergic Living reminds, however to always check the label in case of potential cross-contamination.

In the West, sorghum has traditionally been used as feed for livestock, while in Africa and parts of Asia it has been used as a food for people for a long time. Farmers have developed ‘food-grade’ sorghum, which is meant for human consumption and is already used in a variety of products including some tortillas and flours. It can even be popped, like popcorn.

The researchers note in their report that in addition to being gluten-free, sorghum is nutritious, making it an ideal option for those with celiac disease. Previous studies of sorghum have suggested it may have a wide range of health benefits, including slowing the growth of tumors, reducing cholesterol levels and having higher levels of anti-oxidants than other grains and fruits. Other benefits as a gluten replacement include its low cost and neutral taste.

As Allergic Living previously reported, the actress, who has celiac disease, parted company with the CBS network in a dispute over her work schedule for the TV hit show Blue Bloods. The dispute arose after Esposito asked for a reduced workload due to health concerns related to her celiac disease.

But now Esposito has recast herself in the role of gluten-free baker, and appears excited to be offering New Yorkers her gluten-free baked goods – with a side of celiac disease advocacy. As a bonus, everything in the bakery is also made without soy, peanuts, dairy and refined sugar. Some products are also promoted as nut-free, yeast-free, and/or vegan-friendly.

Esposito is no newcomer to creating good gluten-free food. She has been blogging and sharing celiac recipes on her website jennifersway.org for some time, which also hosts the bakery’s site. Esposito was only diagnosed with celiac disease a few years ago after suffering with a long list of mysterious symptoms:

“It was years of trying to figure out what was wrong, to the point where I lost a tooth, my hair was falling out, I couldn’t stand up, I had such severe panic disorder”, she told NBC’s Today.

Esposito can still be found on TV, too. She and her bakery are part of a reality show called Playing with Fire, which follows chefs trying to succeed in New York City. The show premiered on The E! Network in March.

In 2012, Allergic Living reported that Esposito’s job dispute involved her request for a reduced work schedule because of her need for vitamin IVs and general exhaustion related to her recovery from the health toll of the years of undiagnosed celiac disease. CBS first put her on unpaid leave, saying that her part-time schedule made her “unable to perform the demands of her role”.

Since leaving the show, Esposito has said that she considers the bakery and her advocacy efforts to be a new, rewarding chapter in her life.

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 autimmune 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 kneejerk 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.

Next: Understanding secondary lactose intolerance

After Michelle B. was diagnosed with celiac disease in early 2009, she made sure to tuck all nine of her extracted teeth into her handbag when she was referred to the Celiac Disease Center at Columbia University in New York. She wondered if the dental problems with which she had been plagued since her early twenties – repeated cavities, root canals, infections and extractions – could possibly have something to do with celiac disease.

“I kept all my teeth because I just knew something wasn’t right,” explains the 37-year-old resident of Maplewood, New Jersey.

The clinic examined them and found they all had abnormalities associated with celiac disease, like enamel defects, structural defects and calcium deficiency.

“I knew something bigger was wrong than just my teeth, but I was still shocked by the link.”

Celiac disease and teeth? Really? If that’s news to you, you’re not alone – it’s quite possible that your doctor, dentist and hygienist have never heard of that link either. Among celiac disease’s curious mix of symptoms, oral health problems have only recently been shown to be one of them.

The first American study that looked at a connection between celiac disease, dental enamel defects and canker sores was published in The Journal of Clinical Gastroenterology in 2009. Meantime, the very first clinical guidelines for dentists that outlined celiac disease and dental problems was published in 2011, in the Journal of the Canadian Dental Association.

It’s hard to pin down the number of celiac patients affected by oral health issues – the studies have been generally been small – but the 2009 study found that dental enamel defects were found in 87 percent of the children with diagnosed celiac disease compared to 33 percent of non-celiac kids, and that 42 percent of celiac patients, both adults and kids, had frequent bouts of canker sores, versus 22 percent of the non-celiac patients.

Why is it happening?

Just why celiac disease can do a number on your teeth and mouth is, like so much else associated with the frustrating condition, far from clear. “We don’t know what the exact mechanism is, but there are two theories,” says Dr. Peter Green, a gastroenterologist and director of the Celiac Disease Center, who co-authored the 2009 study.

First, because celiac disease means that the body has trouble absorbing key nutrients, including vitamin D and calcium, that could translate to poor tooth enamel formation in childhood.

Next: Antibody Theory