'It's emotionally draining': Living with coeliac disease, the gluten-free fad
Priyanka Chugh was out for dinner and playing trivia with her friends, but she didn’t eat anything; and not by choice.
Instead, she said she waited until dessert and had ice cream while her friends enjoyed sandwiches, nachos and giant brownies and cookies in a skillet for dessert.
Chugh is a sufferer of coeliac disease, a disease that affects one per cent of people in the European Union (EU) and nearly one per cent of people in the United States (US). It affects more people in the US than Alzheimer's does; yet, the general public and doctors are misinformed about it.
Coeliac disease is an inherited autoimmune disorder that affects the digestive process of the small intestine, according to the University of Chicago Medicine Celiac Disease Center.
Its symptoms vary from immediate responses from the gastrointestinal tract such as:
Abdominal pain
Constipation
Diarrhoea
And leads to other autoimmune diseases and complications such as:
Infertility for women
Iron deficiency anemia
Osteoporosis
Said Dr Ritu Verma the Section Chief, Pediatric Gastroenterology, Hepatology, and Nutrition Medical Director at the University of Chicago Medicine Celiac Disease Center.
Gluten is a protein that is found in these grains, according to Coeliac UK:
Barley
Bulgar wheat
Couscous
Durum wheat
Einkorn
Emmer (also known as faro)
Khorasan wheat (commercially known as Kamut®)
Pearl barley
Rye
Semolina
Spelt
Triticale
Wheat
Gluten-free is a phrase that you have most likely heard over the recent years. However, for one in 100 people in the EU and one in 133 people in the US, it’s not just another trendy diet like keto, whole 30 or Atkins, it’s a lifestyle requirement.
And that is where the frustration lies among those with coeliac disease, like Chugh, when she cannot eat any food at a restaurant because the kitchen staff is either uneducated about what foods gluten is found in or do not offer any gluten-free options.
As a result of this, coeliac sufferers are not taken seriously when eating out; and it takes a toll on their social and mental health.
Psychological and social effects of the disease
Chugh is 27-years-old and was diagnosed with coeliac disease 15 years ago, so she is comfortable with not eating a restaurant when she is with her friends, she said. But when she is with a group of people whom she isn’t as comfortable with, it’s “emotionally draining,” she said.
““It’s like you keep coming out of the [gay] closet. We eat food three times a day or more, so to have that conversation constantly is very exhausting,””
@CeliacsAnonymous is an Instagram account with over 20k followers, and is dedicated to providing “humor for the celiac and gluten-intolerant's soul,” according to their bio.
They conducted a poll on 12 May asking their followers, “do you get nervous to ask about gluten when out?”
Credit: @celiacsanonymous
81 per cent of 1119 people who participated in the poll said yes, according to @CeliacsAnonymous.
The psychological burden of coeliac disease in families is higher than the psychological burden in families on the kidney transplant list, Dr Verma said, referencing a study conducted by Dan Leffler, MD, the director of research at the Celiac Center at Beth Israel Deaconess Medical Center.
The difficulty of eating at restaurants for coeliacs
The social effects of the disease stem from the psychological effects of eating out.
Due to the lack of options of gluten-free foods and the high risk of cross-contamination at restaurants and places that are not your home, coeliacs’ social life with their friends and family are negatively affected.
“Eating out is always a risk but at the same time, am I just going to sit at home in a bubble [and not have a social life]? It’s a balance and it’s tough,” said Laura Boone, the development manager for the Celiac Disease Foundation US.
One in 100 people worldwide, according to the Celiac Disease Foundation US, battle that balance daily when they cannot control how their food and drink is prepared.
Brianna Evers has walked out of a restaurant before because the servers and kitchen staff didn’t understand what she was telling them about her coeliac and cross-contamination, said Evers, the development and communications coordinator at the Celiac Disease Foundation US.
Like Evers, people with coeliac explain to servers that it’s an allergy to communicate the seriousness of the side effects. Even though, “it’s not an allergy, coeliac is autoimmune,” Callahan said. But it needs to be taken as seriously as an anaphylactic reaction from a food allergy would be.
So that’s why coeliacs say it’s an allergy, “to keep [the servers and kitchen staff] on their toes,” Welstead said.
Even though coeliacs try their hardest to communicate their dietary needs while at restaurants, some servers still “roll their eyes,” Welstead said. To which she responds, “Great; we can get more autoimmune diseases if we keep eating gluten,” she said.
The servers do this because of people who have an intolerance to gluten or who are on the diet without feeling any side effects. Sometimes those people “eat gluten-free and then drink a beer,” Chugh said.
“It drives me freaking crazy. Have a beer in your own home, but not in public,” she said.
Cross-contamination
Aside from non-gluten-free food options, cross-contamination is a huge risk that oftentimes is overlooked by those with coeliac, because “it may not cause any obvious damage,” Dr Verma said. “But it may cause some damage in your intestine,” she said.
Cross-contamination is when foods that are supposed to be gluten-free are prepared and cooked on the same surfaces and with the same utensils as foods that are not gluten-free. Therefore, when cross-contamination occurs, even gluten-free foods are not truly gluten-free.
For example, french fries should be naturally gluten-free because they are potatoes. However, they aren’t gluten-free when they’re fried in the same oil as something battered with wheat, or, the fries themselves are battered with wheat.
Moreover, a small bread crumb from a knife, cutting board or a toaster stays in your system at length and causes damage to your small intestine. This leads to other health complications.
The risk of cross-contamination is the reason why Chugh did not order any food that evening out with her friends.
But when she does eat out at a restaurant that is not certified as gluten-free or does not serve any certified gluten-free menu items, she always questions the kitchen staff.
The main questions Chugh asks servers and kitchen staffs about at restaurants:
Shared fryer
Shared cooking surfaces
Talks to the chef
However, there are restaurants that are certified as gluten-free by the Coeliac Foundation UK and the Gluten Intolerance Group in the U.S.
The trend of being gluten-free
The list of the social side effects do not stop at restaurants and gluten-contaminated surfaces; people with gluten intolerances, people on the trendy gluten-free diet, and Instagram bloggers are in the mix, too. This has led to negative and positive social and wellbeing effects for those with coeliac.
When someone is gluten-free, they are one of three things: have coeliac disease, are intolerant to gluten, or eat gluten-free foods without any negative bodily symptoms.
A gluten-intolerance is when someone simply feels better by not eating the foods that gluten is found in. “It’s not an allergy, it’s just an intolerance,” said Julia Callahan, a registered dietician.
However, it doesn’t minimise the negative effects that it has on that person’s body and should be taken seriously. “[Eating gluten] increases the number of migraines I have and the arthritis symptoms in my joints,” said Kristine Stewart, a Pharm.D., BCPS, clinical pharmacist who has an intolerance to gluten.
The gluten-free trend is taking over the coeliac and gluten-free community because 80 per cent of people who eat gluten-free are doing so without being diagnosed, according to the Mayo Clinic.
And this has become a problem.
“Because everyone is on this fad of a gluten-free diet, [people with coeliac disease] can’t justify that [they’re] going to get sick. Even if [they] don’t get a belly ache right now or throw up, in the long run, [it] is a problem,” Dr Verma said.
These people assume eating gluten-free foods is healthier, even though, it’s not.
“If you’re eating fresh foods and vegetables, that is healthy. But if you’re replacing your pizza and cookies with gluten-free alternatives, often times they are more caloric. They have more sugar and fat to try to make up for the bad taste,” Boone said.
The desire to be gluten-free can stem from being around coeliacs, especially in families with coeliac disease.
For example, Chugh and her brother have coeliac, however, their sister does not. And she wanted to have it to “fit in” with her siblings, Dr Verma, their mother, said.
The genetic disposition of the disease
Chugh was diagnosed without any symptoms due to the mandate of family screening because her brother was diagnosed, Dr Verma said. Approximately five to 15 per cent of people who have an immediate family member with coeliac will develop the disease within their lifetime, according to the Gluten Intolerance Group.
“The disease is genetic; you either “have [the gene] or you don’t. And if you have it, then you’re gluten-free for life,””
The gene can be triggered from stressful and traumatic events such as pregnancies, surgeries, personal environmental changes, and more.
Lori Welstead, a registered dietician at the University of Chicago Medicine Celiac Disease Center, has treated a patient in his eighties for coeliac whose gene was turned on after his knee surgery, she said. He thought his diarrhoea was from his post-surgery medications, but it wasn’t; it was symptoms of digesting gluten.
You can imagine the frustration when someone goes from living part or more than half of their life ordering whatever they want at a restaurant and having a pleasant experience with the wait staff, and then has to live with the struggles of their disease not being taken seriously.
This is in part due to the trend of people eating gluten-free when they don’t medically need to.
“Eating gluten-free wasn’t always the “cool” thing to do”
But now, it is. And a positive tradeoff from the negative effects of the trend is that by more people eating gluten-free, there is a higher demand for gluten-free foods and self-care products.
Gluten-free food products are tested for gluten at a minimum of 20 parts-per-million in the UK and US
However, you can’t talk about the increase of the demand without giving some credit - good and bad - to the #glutenfree and #celiac Instagram influencer community.
#glutenfree and #celiac Instagram
Social media is growing in every aspect of your life; whether it’s for fun, your job, or to be a part of a #glutenfree, #celiac and #celiacdisease Instagram community.
In the US, almost the entire population of over 300 million people use Instagram stories daily, according to the Reuters 2019 Digital News Project.
On Instagram, #glutenfree has 26M posts, #celiac has 918K and #celiacdisease has almost 400K as of 8 May 2019.
So it’s no surprise that gluten-free food and self-care products have big name #glutenfree and #celiac bloggers like @glutenfree.followme with 116K followers, @beckyexcell with 61.7K followers and @goodforyouglutenfree with 22.6K followers advertise (#ad) their products.
But just because the Instagram community of gluten-free and coeliac bloggers has soared into popularity, it doesn’t mean that they are always promoting the truth about gluten-free products and coeliac disease. Like every other aspect of the disease, there are myths and positives and negatives that come with the gluten-free Instagram blogging community.
Gemma Buckle, a woman with coeliac and a part of the coeliac Instagram blogger community has, “loved developing [her] Instagram, @lifewithoutloaf for gluten-free because [she’s] talking to other people who have coeliac disease, and [she feels] like [they] understand. It’s difficult to talk to people who don’t have it; they don’t get it,” she said.
Buckle isn’t a big-name blogger yet, however, the influencers who promote #glutenfree and #celiac living tips, ideas and more, are where the pushback from experts in the coeliac community lie.
“Overall, I do think it’s great. I’ve always loved seeing the new products they would find; even if it was a sponsored post, I don’t care. They get on an individual level for people; they seem more relatable. They post, ‘hey, I’m traveling to Dallas this week, here’s [the gluten-free food] I found in Dallas’. I think that’s a really cool part of their job,” said Michelle Spano, the communications manager for the Gluten Intolerance Group.
On the other hand, you see a person with “10K followers and [think] they must know what they’re doing,” Boone said. “It’s detrimental to the coeliac community; especially for someone who is newly diagnosed and is trying to figure out what’s fact and what’s fiction,” she said.
““It’s hard because some of these bloggers [say to], ‘eat this, eat that’, and they don’t necessarily have a [health] degree. I think some of these influencers sometimes don’t have people’s best intentions, they’re just [trying] to make more money,” ”
Gluten Intolerance Group approved #celiac and #glutenfree Instagram accounts, according to Spano
Chugh is too, a part of the #celiac and #glutenfree Instagram community, with her account @antiwheatgirl.
Overall, she appreciates the #celiac and #glutenfree Instagram community because it has shown her that she is “not alone,” and that there are other people who “get [her struggles],” she said.
However, she feels like “there is now an eliteness to the coeliac community,” she said, where coeliacs feel like they are the only group among the people on the gluten-free diet who should be taken seriously. Not those that are on it for their intolerance or the fad.
“Maybe someone wants to eat gluten-free because they feel better. I have no issue with that,” she said.
However, regardless of if true coeliacs notice any symptoms from digesting gluten, they have no choice but to eat gluten-free for the rest of their life.