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Patients Write a Social Media Diary of Living with Gluten Exposure

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People living with celiac disease sound off on the realities of trying to live 100% gluten-free. 

Phone on table open to the Beyond Celiac Facebook Page

By Amy Ratner, Beyond Celiac Medical and Science News Analyst

One celiac disease patient describes the abdominal pain she feels after unintentionally eating gluten as being worse than childbirth.

Another says she keeps two sets of clothes – one for normal days and another in a larger size for the days when her stomach is so distended by the bloating that follows gluten exposure.

A third reports developing a rash after eating gluten that was so itchy she thought it was shingles.

Others have come up with their own vocabulary for talking about symptoms they experience. “Gluten gloom” sums up the anxiety, depression and mood swings common after eating something that was thought to be gluten-free only to discover it probably wasn’t. “Bathroom situation” is code for the diarrhea that forces many celiac disease patients to have a mental map of every restroom location.

These are the stories patients told on social media when Beyond Celiac asked a series of questions about gluten exposure and how it affects daily life. Taken together, the more than 600 comments paint a picture of frequent, severe and confusing symptoms even when patients are committed to maintaining a strict gluten-free diet.

Worry about these symptoms sometimes causes social isolation and almost always makes eating out difficult and fraught with anxiety.

Sharing on Facebook

The social dialogue with Facebook followers, while informal, increases understanding of what’s happening in the real world in relationship to gluten exposure, as patients are free to share experiences and opinions with the larger community in their own words in a way that’s comfortable to them.

Through its Facebook community of nearly 140,000 followers, Beyond Celiac regularly engages in social listening to encourage a dialogue about patients’ needs, wants and ways of managing celiac disease and the gluten-free diet. Patient input on Facebook and other kinds of social media is increasingly recognized as a valuable source of information and data that impacts consumer health. Social listening has been described as the world’s largest focus group.

The Facebook dialogue on gluten exposure was touched off by recent research that showed celiac disease patients are frequently exposed to gluten even when on the gluten-free diet and often don’t realize it until symptoms occur.

“We have celiac disease patients attributing symptoms to gluten, and one of the challenges is that there is no real tool available to tell them if they really had gluten,” says Jocelyn Silvester, M.D., one of the authors of the gluten exposure study published in the journal Alimentary Pharmacology and Therapeutics.

“Attention to gluten exposure is an important new development that fills a major gap in celiac disease research, drug development and patient care, say Ciaran Kelly, M.D, medical director of the Celiac Center at Beth Israel Deaconess Medical Center and Beyond Celiac Scientific/Medical Advisory Council Member.  “I expect that it will become the norm in all of those areas.”

For now, measuring and understanding gluten exposure remains a challenge for both researchers studying celiac disease and patients themselves, who have difficulty knowing when they’ve been exposed, by what, to what degree and what kind of damage they may be suffering as a result. The fact that some patients have no symptoms even when they have intestinal damage adds another twist.

Diary of life with celiac disease

Overall, those who responded to the Beyond Celiac questions about gluten exposure said they suffer a wide range of symptoms severe enough to impact their daily function and their jobs after they have been exposed to gluten. Most common and troublesome of these were diarrhea, joint and abdominal pain, brain fog, anxiety, depression and mood changes, migraines, vomiting, nausea, canker sores and rashes.

Many reported daily on-going gluten exposure, saying that although they are following the gluten-free diet, they live in households where other family members eat gluten or work in locations with lunch rooms where others consume gluten-containing foods. Others reported weekly or monthly exposure, usually when they ate out in a restaurant or in someone else’s home.

Those who said they were only occasionally or rarely exposed to gluten noted that they significantly minimize the number of times they eat out. Those who have celiac disease and travel frequently also reported more frequent gluten exposure.

“If I want to be 100% sure I'm not getting gluten I must eat at home.”

Most patients said it’s difficult to track down just where gluten comes from when it gets into the diet.  Some of those who got sick after eating in a restaurant noted that they do try to identify the source. They said they want to know if it came from an ingredient in food that was supposedly gluten-free or from cross-contact in the kitchen via shared surfaces, utensils, fryers or human error. This information helps them decide whether to return to the restaurant. Additionally, a conversation with the restaurant manager or server can help fix the problem for others seeking a safe gluten-free meal.

But for others, once symptoms begin, the source of the gluten exposure becomes irrelevant. And once they’ve had a bad experience they are unlikely to return to the restaurant.

Some patients accept the risk of restaurant dining as part of living a normal social life. While they take as many precautions as possible, they are not surprised when they get symptoms but refuse to let this stop this from enjoying dining out with friends and family. Overall, those with celiac disease highly value the limited number of restaurants they’ve found that consistently provide safe meals, some of which are completely gluten-free.

Despite the perils of dining out, many people who have celiac disease said they still attend weddings, dinner parties and family events. Even those who have largely given up on restaurant dining try not to miss these social gatherings.

They cope by eating ahead of the event or treating themselves to a safe meal on the way home. And they take a snack along to get through the day. Many said they feel it’s their responsibility to make sure they have something to eat, not the host’s. If they know the host well enough, some celiac disease patients ask for a gluten-free meal or offer to bring something. But even then, complications come up, for example, if the host makes something gluten-free and then there is cross-contact in the kitchen or when it’s being served. 

Improved treatments needed  

This varied diary of life with celiac disease makes it clear why greater understanding of gluten exposure is so important. Additionally, it lays out the reality that improved treatments to protect against and tests to measure gluten exposure are needed for patients.

Current blood tests used to monitor how patients are doing on the diet, primarily the anti-tissue transglutaminase test (tTG), were, in fact, designed to diagnose celiac disease and are only being used to monitor the condition because no test for that purpose has been approved.

Researchers know these tests are not very accurate for disease management, says Daniel Leffler, M.D. director of research at Beth Israel Deaconess Medical Center and Beyond Celiac Scientific/Medical Advisory Council Member. At the same time, they don’t know if patients who have high tTG levels are at risk for long term complications of celiac disease, an issue that needs further study, he notes. “It would be very helpful both in clinical practice and for research if we had an easy, non-invasive test of intestinal health,” Dr. Leffler says.

To Peter Green, M.D., president of the North American Society for the Study of Celiac Disease (NASSCD), gaps in the care of patients and the lack of treatments to address their needs are at the root of the misunderstanding of gluten exposure and resultant symptoms and damage.

“It's a full-body reaction that lasts up to two weeks, but in the first hour digestive distress leaves me curled in the fetal position on the floor sweating bullets and trembling in pain.”

“Patients are not getting their symptoms evaluated. They may not be seeing a doctor, and if they are, the doctor may not be addressing the symptoms,” he says. “The care of celiac disease patients is substandard. We need a standard of care to be developed and implemented to lead to real change.”

Patients’ role in advancing research

Doctors who treat celiac disease and scientists who study it are increasingly aware that the gluten-free diet alone may not be as complete a treatment as once thought. The role those who have celiac disease can play in advancing research towards better disease management and treatment is also getting greater recognition.

A lively discussion about patient experiences, symptoms and what the real world is like outside the doctor’s office is an important conversation.

“It’s helpful for patients to know that what they experience is real,” says Jennifer Sealey-Voyksner, Ph.D., chief scientific officer for ImmunogenX, a clinical stage biopharmaceutical company focused on the treatment of autoimmune and gastrointestinal diseases. Sealey-Voyksner is also a celiac disease patient who was diagnosed in 2002. “Learning about others’ experiences with gluten exposure is beneficial on many accounts. Because the amount of gluten needed to trigger a flare of symptoms can be so small, it’s sometimes hard for patients and family to understand that inadvertent exposure is more common than we think.”

ImmunogenX, one of several of companies working on drug treatments for celiac disease, is developing Latiglutenase, an enzyme mixture that breaks apart gluten proteins before they can interact with the body’s immune system.  It’s designed to be taken with a meal to help celiac disease patients who are trying to follow a strict gluten-free diet to combat the negative effects of inadvertent gluten exposure, Sealey-Voyksner explains. ImmunogenX last year acquired assets of Alvine Pharmaceuticals, including Latiglutenase.

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