Understanding Coeliac Disease
Coeliac disease has a huge impact on people’s quality of life, not only those who live with the disease but also their families.
Coeliac disease is an autoimmune condition characterized by an intolerance to gluten, a protein found in wheat, barley, and rye. Coeliac disease is a chronic condition that affects approximately 1% of the population worldwide.
When someone with coeliac disease eats gluten, their body’s immune system attacks their tissues causing damage to the lining of the gut. This can be from as little as a breadcrumb.
It often remains undiagnosed or misdiagnosed, leading to prolonged suffering and complications. The primary treatment for coeliac disease is a strict gluten-free diet.
Stirling Forth Valley Gluten Free Fortnight campaign aims to increase awareness of the disease and of safe gluten free food preparation practices among hospitality venues in the region and in effect position the region as a destination with a good & safe food offering for coeliac customers.
The need for an increased awareness & understanding of coeliac disease and its impacts among hospitality staff is evident and needs to be addressed.
There’s no better way to truly grasp and empathise than by hearing a personal account from someone living with coeliac disease. This case study delves into the life of a coeliac, Stacey, and her partner, Francine, and sheds light on the physical, emotional, and lifestyle impacts the disease has had on both the coeliac and their closest ones.
Stacey’s coeliac disease is particularly severe, so it’s important to recognize that not everyone with the disease experiences its impacts to such a degree. However, for anyone intolerant to gluten, the condition can progressively worsen, if gluten is ingested regularly.
The Nightmare Journey to Diagnosis
Francine and Stacey had been in a relationship for half a year when Francine started noticing significant changes in Stacey’s health. Stacey experienced frequent bloating, weight loss, and severe stomach pain, which raised concerns, particularly considering her history of colon cancer. Francine recalls one night when Stacey’s bloating became so bad, she looked heavily pregnant.
The couple doesn’t recall making any significant changes to their diet at the time before diagnosis and that’s why the possibility of it being a coeliac disease didn’t cross their minds.
The most common symptoms of coeliac disease include diarrhoea, stomach pains and lethargy. However, coeliac disease is known as a ‘multi system’ disorder – symptoms can affect any area of the body.
Symptoms differ between individuals in terms of type and severity, which is why it can be hard to pinpoint according to Coeliac UK.
Months Spent in Hospital
Alarmed and concerned about Stacey’s health, Francine insisted on seeking medical attention. This led to numerous hospital visits and investigations, tests, which stretched over a period of almost one year.
Initially, the doctors suspected lesions in Stacey’s bowel. However, the initial investigations failed to provide a definitive answer and so they continued in their search for a diagnosis.
Stacey spent weeks in and out of the hospital under the influence of morphine and Hydrocodone to relieve her severe pain. Francine remembers that during one of her visits, Stacey was under so much pain medication that she was not able to string a sentence together. In Francine’s words: “she could hardly wake up when she was awake”. Francine has never witnessed Stacey in such a terrible state and had to instruct the hospital staff to not give Stacey any more morphine.
Despite Stacey’s numerous hospital stays, her health kept deteriorating without a diagnosis in sight. At times, Francine recalls Stacey leaving the hospital in a worse condition than when she was admitted.
Some of the symptoms were pointing towards pancreatic cancer and one of Stacey’s CT scans also showed a mass on her pancreas. The anxiety of waiting for a conclusive diagnosis and the fear of a potential cancer diagnosis added fear to an already distressing journey.
Stacey’s journey to diagnosis involved two endoscopy attempts to obtain stomach lining samples for examination. The first one went wrong, leading to pancreatitis and further delays in reaching a diagnosis.
During this period, Stacey had to rely on a feeding tube for sustenance, unable to consume solid foods for nearly four months. The significant weight loss as well as pain took a toll on her overall health, leaving her fatigued and unable to carry out her regular activities. She also could not work at all and was off from work for 8 months.
When Stacey was finally diagnosed with coeliac disease, the doctor said to her that it was one of the most severe cases of coeliac that they had ever seen and that she had almost no lining left at all on her stomach. It’s also been concluded that the mass on Stacey’s pancreas is linked to the coeliac disease as it started to shrink following the diagnosis. Stacey also developed a bone deficiency which is linked to coeliac disease.
Stacey believes she should have been diagnosed years ago but instead was diagnosed with irritable bowel syndrome (IBS). Had she been diagnosed earlier, she would be in a better state.
Stacey’s road to diagnosis can only be described as a nightmare. Usually, coeliac disease is diagnosed by doctors using a few different methods. First, they will do a blood test to check for certain antibodies that are often higher in people with coeliac disease.
If the blood test suggests coeliac disease, the next step is an endoscopy. During an endoscopy, the doctor will take tiny samples of tissue from the small intestine to see if there are any changes that are typical of coeliac disease. If the tissue samples show these changes and the blood test is positive, the doctor will diagnose coeliac disease.
Health System Shortcomings
The delayed diagnosis of coeliac disease for Stacey raises questions about the healthcare system and the need for increased awareness. Stacey had experienced bloating and other symptoms for years, but it wasn’t until her condition deteriorated significantly that hospital visits became necessary.
Stacey was looked after by multiple doctors who were giving her conflicting information during her stay at the hospital which is why she requested to see her medical records. However, she was refused the right to read her file in the hospital which further diminished her confidence that a diagnosis was in sight. The hospital’s defensive approach prompted Francine to submit a written request to the NHS to request access to Stacey’s medical records. Eventually, after a dragged out process, the couple received a copy.
Furthermore, the hospital Stacey stayed in did not provide gluten free meals. To feed Stacey, Francine prepared soup and then she would heat it up on a stove outside the hospital during visitor hours.
Living with Coeliac Disease after Diagnosis
Lifestyle Changes
Stacey’s coeliac disease has greatly impacted her overall quality of life. Her diet must not include any barley or wheat and even the smallest amount of gluten causes her serious health complications. This means she has to be very careful of what she eats, constantly checking food labels and planning ahead.
Despite Stacey’s avoidance of gluten, she continues to experience pain on most days and life under the influence of morphine has become her daily reality.
The diagnosis prompted a series of lifestyle changes in the couple’s household. Shortly after diagnosis, they decided to move houses and seize the opportunity to create an environment that can guarantee Stacey’s safety.
All possible measures were implemented to prevent cross-contamination. They have separate chopping boards, toasters, and double ovens. They both have their dedicated cupboards for gluten free items and non-gluten free ones on opposite sides of the kitchen.
Navigating Gluten-Free Challenges Together
Francine witnessed the toll that coeliac disease took on Stacey’s health and offered unwavering support to Stacey throughout her diagnosis and helped her transition to the gluten-free lifestyle. She went on a mission to find recipes they could cook at home to enjoy together and GF food products that Stacey would enjoy because gluten free food hasn’t got the best reputation when it comes to taste.
Francine now tries to eat gluten free food as much as possible. Her decision to follow a mostly gluten free diet also means she doesn’t eat as much food she enjoys anymore and instead eats things she would not traditionally eat which has resulted in her gaining weight.
Due to the couple’s varying work schedules, It’s hard to keep a normal family routine and they often end up preparing food and eating separately which is not ideal for their relationship.
The couple finds themselves increasingly frustrated with the limited availability and high cost of gluten-free options. They are dismayed by the disparity between the abundance of choices for individuals following specific dietary preferences like vegan or vegetarian (in hospitality settings and supermarkets alike), compared to the scarcity of options for those with specific food intolerances who had no choice in the matter.
Eating Out when You’re a Coeliac
For both Stacey and Francine, eating out has become a stressful event that takes out the enjoyment of eating out. If Stacey digests gluten, her stomach immediately swells up.
The potential risk of cross-contamination is always on their mind and the limited availability of gluten-free options means Stacey might not find anything she likes. This is why the couple very rarely goes out and never spontaneously anymore. If they do go out, they mostly choose places they’ve visited before and know they can trust. Even then, they plan their visits in advance. Stacey’s dietary restrictions have taken a toll on the couple’s social life.
Visiting the same hospitality venues means Stacey often has to stick to the same menu choices, which can be tedious and restricts her dining experiences.
The Bad Experiences
The couple have encountered numerous instances where staff members were not knowledgeable about coeliac disease or failed to accommodate Stacey’s dietary needs and made her feel like she was being ‘the pain in the arse’, which had a further negative impact on their confidence to eat out.
They also often see hospitality venues calling their menus ‘gluten free’ when in fact they are ‘gluten friendly’, which means it’s prepared without ingredients containing gluten but the restaurant is unable to guarantee the food’s complete safety due to the possibility of cross-contamination during the preparation & cooking process (for example by the use of a shared fryer).
This makes it risky to go and eat out anywhere. For a coeliac to find out if the food is at risk of cross-contamination, they need to ask specific questions about the meal’s preparation process and trust the front of house staff is giving them accurate information and that the kitchen staff follows correct food safety preparation practices.
Stacey recalls one specific special dining-out occasion that left her feeling disheartened and disrespected and put her off eating out for a long time. Despite making a reservation and informing the staff about her dietary requirements in advance, upon arrival the waiting staff had no awareness of her dietary restrictions and were unable to give her a separate gluten-free menu.
Stacey was left with only a few limited options from the regular menu with no dessert option. The wait staff provided incorrect information about the content & preparation of the dishes and she ended up being served a starter that contained gluten and an unsatisfactory main dish that she had to send back to the kitchen. The staff did not offer any alternative or hadn’t shown any concern in trying to remedy the situation. The manager even confronted Stacey’s party and accused them of dishonesty when they raised their concerns.
Seeing the impact such experiences have on Stacey makes Francine extremely angry. She wishes the staff appreciated just how serious this condition is and that a small breadcrumb can mean a week in the hospital for Stacey spent in agonising pain.
The Good Experiences
However, Stacey and Francine have also had positive experiences. They regularly visit their local cafe where the owners and staff take great care to accommodate Stacey’s dietary needs. The café goes above and beyond to ensure no cross-contamination occurs, and they are attentive to Stacey’s specific requirements.
Finding Hospitality Venues Serving Gluten Free Food
Stacey and Francine mostly rely on social media and online resources to find reliable information about gluten-free options and restaurants in their area. They have found these platforms to be much more helpful than the official website of Coeliac UK, which they believe has navigation issues and limited options in their local area which might be caused by the fact that there are a limited number of venues that hold Coeliac UK accreditation.
Coeliac Working in Hospitality
Stacey works as a manager in a restaurant that manages allergen safety very well and she also had an input in employee training. Her personal & hospitality experience help her deliver positive dining experiences to individuals who suffer from the same health condition. She finds it comforting knowing that she can deliver a safe experience to her coeliac customers and they can have complete confidence in her.
When asked what hospitality venues need to do better, Stacey emphasises the need for intensive staff training on dietary requirements and allergens and a greater focus on coeliac disease awareness.
She believes that all staff members should receive thorough training to ensure they understand the severity of dietary restrictions and the potential consequences of cross-contamination.
Trust Is Everything
Stacey & Francine’s story of living with coeliac disease is a powerful testimony to what it’s like living with the disease and why it is so important to make sure that hospitality establishments do their absolute best to train their staff to deliver safe gluten free dining experiences.
The ability to meet coeliacs’ dietary needs and earn their trust can turn them into loyal customers and the venue’s ambassadors.