Doctors say you have to ingest gluten from cosmetics to get symptoms. The question is: does this happen more often than we know?
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 in 2012 has led to a flurry of debate in the celiac community, among doctors and patients.
Next: Lotion case causes a stir
Dr. Marie Borum, director of the division of gastroenterology and liver diseases at George Washington University, is the co-author of the paper in question, about a 28-year-old celiac patient who had been on a gluten-free diet for about five years. The woman came to Borum’s office with a recurrence of her gastrointestinal issues and she had developed an unsightly rash that turned out to be dermatitis herpetiformis , one of the symptoms that is linked to celiac disease.
Borum and the patient exhaustively reviewed what the woman had been doing differently. Was she cheating on her diet? Was she dining at restaurants or being careless while eating at friends’ homes?
“It was none of those,” the gastroenterologist says. “This woman is hyper-conscious and responsible about what she puts in her body, whether it is food, vitamins or any prescriptions she is given. She read labels and actually called pharmaceutical companies to find out what was in any product she was prescribed.”
Mystified, they continued to explore – when Borum asked her about lotions, soaps and detergents, the woman remarked that she had recently switched to a moisturizing lotion that was advertised as having “all natural ingredients“.
“Stop using it – now!” Borum told her, even though the very idea of this seemed at odds with everything Borum knew about the disease. It turned out the lotion’s ingredients included oats (which often get cross-contaminated with gluten). Once the patient gave up the lotion, her symptoms were gone within a month.
Since gluten couldn’t penetrate the skin, the only plausible explanation seemed to be that the woman applied the lotion, then her hand had touched her face and mouth. After all, that’s something people do all the time, unconsciously, as a nervous tic or simply when putting a hand to the mouth to express: “You’re kidding me!”
At the ACG meeting, Borum was caught off guard by the response to this case. She had presented other papers too, but all people wanted to talk about was cosmetics and celiac disease. While not familiar with Borum’s case, Dr. Peter Green, head of the Celiac Disease Center at Columbia University, notes that a controlled study of more than a single patient is needed before drawing conclusions.
That seems a good idea, especially since that one case has led Borum’s office to receive many more calls from people with similar stories who are seeking appointments. “One of the good things that has come from this paper is that these people feel they have a place to turn,” Borum says.
Dr. Daniel Leffler, director of clinical research for the Celiac Center at Beth Israel Deaconess Medical Center in Boston, says he keeps an open mind when his celiac patients complain of reactions to cosmetics.
“It’s not a traditional celiac-type reaction, but it may be that some people have a higher likelihood of being hypersensitive or they have other food intolerances that are undiagnosed,” he says. “You can’t be 100 per cent certain it’s a reaction to gluten but does it really matter? You still tell them to stop using the product.”
There is infinite variability in human disease, too – perhaps other conditions that share similar pathways to celiac disease. “We diagnose people all the time with conditions that don’t have a name or a reason but that doesn’t stop us from prescribing a reasonable treatment for it,” he continues. “That is the bottom line.”
Kelly Courson, a New York holistic health coach who founded the CeliacChicks.com  blog, had horrible bouts with dermatitis herpetiformis before she learned 16 years ago that she had celiac disease. When she continued to have the occasional similar outbreak after she cut gluten from her diet, she did her own detecting.
“I linked it to vitamin E oil, which unbeknownst to me, can contain wheat derivatives,” she says. “The point is, you have to listen to your own body. Be more conscious about your choices. It’s a good thing!”
Next: Sourcing gluten-free cosmetics
If you decide you want to avoid gluten in most of your cosmetics, it won’t be easy. While some lines – Afterglow, Red Apple Lipstick and Gabriel Cosmetics to name a few – are gluten-free, you won’t find them in the aisles of your friendly neighborhood pharmacy, supermarket or department store. And finding out what is in the ingredients of the more readily available products can be daunting, as Borum and her colleague Dr. Pia Prakash discovered.
Spurred by the experience of Borum’s patient, the two doctors surveyed 10 of the top cosmetics companies in the United States to determine how easy it was to get information about which of their products contain gluten. In a time when one in 100 people in North America has celiac disease, considerably more have gluten sensitivity and the number of gluten-free food products in the marketplace has exploded, they wanted to find out what these companies did to meet a growing demand.
It turns out: not much. Prakash and Borum conducted their research, not as experts with recourse to company reports, but as regular consumers who happened to have celiac disease and wanted to know if a product they might purchase contained the protein. They surveyed websites, looking for phone numbers and keying the words, “gluten” and “gluten-free” into search engines, but the usual response was “0 results found.” Only two companies provided detailed product information, but even they did not mention gluten specifically.
“It was so frustrating,” Borum says. “With a growing market, with more awareness about the range of gluten sensitivities and intolerances, with public demand for more clarity about ingredients in food and increasing knowledge about clinical hazards, no matter how remote, shouldn’t these companies be more committed to marketing products that are safe to a particular – and large – group of consumers?” (Allergic Living’s attempts to get product information from some big cosmetics companies were also met with silence.)
The research of the two doctors was conducted for the consumer who shops in a pharmacy, department store or supermarket and wants information about a mass-market product, not the person who already goes to small specialty boutiques or Whole Foods Markets for cosmetics that are specifically labeled as gluten-free.
The findings resonate with people such as Lynne Grawemeyer Wagner, a retired physical therapist in Louisville, Kentucky, who was diagnosed with celiac disease seven years ago. She prefers to stick to gluten-free personal products after a run-in with a skin rash and a suspicious shampoo.
“Really, how difficult would it be for companies to say, ‘This product may contain gluten’? It’s simple, straightforward and can help people avoid unnecessary grief.”
While the jury may still be out on the degree of risk that gluten in personal care products presents, this much is certain: if you prefer to keep your beauty regime gluten-free, look to the specialty products, especially online. Most of the glossy mass-marketed products have yet to catch up.
What’s your experience been with gluten in beauty products? Let us know at email@example.com .
Next: Shopping advice and gluten-free finds.
Wondering whether gluten is in your lipstick? Tricia Thompson, known online as the Gluten-Free Dietitian, and a colleague undertook a study earlier this year on four lip products and two lotions. Their results, published in the Journal of the Academy of Nutrition and Dietetics, showed gluten levels so negligible that they couldn’t be quantified.
But Thompson notes that a much larger study has yet to be done. Until that time, she offers these tips to celiac individuals looking to avoid inadvertent gluten ingestion:
1. Read the ingredients listed on cosmetics. Look for any mention of wheat, barley, malt, rye, oat, triticum vulgare, hordeum vulgare, secale cereale and avena sativa. Those are ingredients to avoid.
2. If the product is too small to contain a complete list of what is in it on the label, look for what is known as an “off-package ingredient list.” This is required by law in the U.S. for all cosmetics sold on a retail basis. It must be conspicuously placed so that it is easy to read before you buy it, either on an information panel or as an attached tag, tape or card.
3. Contact cosmetic manufacturers and ask whether makeup products or lotions contain any ingredients derived from wheat, barley, rye, or oats.
4. Look for cosmetics that are labeled as gluten-free.
Gluten-Free Finds: Makeup