Dealing with the Stress of a Celiac Disease Diagnosis
Published April, 2021
Are you feeling stressed out? If so, you’re not alone. Many things in life can create stress, and when we are stressed, our brains release hormones like cortisol into our bloodstream. While you can usually adapt to “short term” stress, long term stress – like what you might experience when you have a chronic disease – can be have negative effects on your health.
According to the National Institute of Mental Health, chronic stress can disturb our immune, digestive, cardiovascular, sleep, and reproductive systems. No wonder we can feel physically ill when we’re mentally stressed out.
Being chronically ill can be stressful, and so can getting a diagnosis of illness. Getting a celiac disease diagnosis, for example, can cause stress in a number of ways:
Emotional Stress: Hearing that you – or someone in your care – has been diagnosed with celiac disease can bring up a myriad of emotions. You might feel fearful of what is happening to your body that is out of your control. You could be annoyed or frustrated that you have to change your diet and other habits to get well.
Physical Stress: Getting to a proper diagnosis can take time, and meanwhile, you could be experiencing discomfort and even pain, from mild to severe. Even after a diagnosis of celiac disease, it may take weeks or months to feel relief, and even longer to heal any intestinal damage caused by gluten.
Financial Stress: Going gluten-free, particularly for health reasons, can be expensive. According to a report from the Celiac Disease Center at Columbia University Medical Center, gluten-free foods can be 183% more expensive than conventional foods. The added long-term financial burden of maintaining a gluten-free diet can be extremely stressful.
Not all of your emotions around a celiac diagnosis will be negative, says Alyse Bedell, PhD, GI Health Psychologist and Assistant Professor of Psychiatry & Behavioral Neuroscience at The University of Chicago.
“When a person has been experiencing unexplained symptoms for a long time and then they receive a diagnosis that explains their symptoms, this can be followed by a sense of relief. It can also instill a sense of optimism if they are now presented with a treatment option that can help relieve those symptoms,” Bedell explains. “On the other hand, receiving a diagnosis of a chronic illness can be tough to wrap your head around, and for celiac disease, especially, because the treatment requires significant, lifelong changes in order to be effective.”
Bedell, who treats patients with celiac disease as part of her work, recommends that anyone who has received a celiac diagnosis should take some time to notice all of the thoughts and emotions that they are feeling.
“Try to reserve judgment about whether those responses are ‘right’ or ‘normal,’” says Bedell. “It is normal for it to take some time to adjust to major changes such as a diagnosis of a chronic condition.”
Mental Health Effects of Celiac Disease
Celiac disease can affect different people in different ways. Whether you are male or female can also play a role in everything from symptoms to diagnosis. Bedell points out that some research has shown that women experience greater impacts on quality of life and lower wellbeing following a celiac disease diagnosis when compared to men, although it is not clear why.
Bedell continues, “In Western societies, women are more likely to be diagnosed with mental health conditions like depression and anxiety than men, so this might be more related to overall differences between how women and men express themselves – or the degree to which they talk about their mental health – than it does the celiac disease itself.”
Bedell points out that mental health, or psychosocial concerns like depression, anxiety, and fatigue, can commonly occur with untreated celiac disease.
“This might be because of more biologically-driven mechanisms due to the disease as well as the mental health consequences of suffering with uncomfortable physical symptoms,” says Bedell.
Tips for Handling a Celiac Disease Diagnosis
Dealing with all of the steps you need to take after a celiac disease diagnosis can feel overwhelming. Part of dealing with difficult and stressful situations is to take actions that can help reduce your stress. We outline a number of simple, but effective, stress-reducing activities in 5 Ways to Reduce Stress When Living Gluten-Free.
Here are some other ways to manage the stress of being diagnosed with celiac disease.
1. Get Informed
As the saying goes, “Knowledge is power.” The more you can learn about celiac disease, the less scary or mysterious it will seem. Read articles, listen to podcasts, watch videos, and attend virtual events to hear from trusted experts.
While there are many blogs online written by people sharing their personal stories about celiac disease, start with resources from national nonprofit organizations like the Gluten Intolerance Group and advocacy groups, as well as reliable medical sources. Everyone‘s celiac disease journey is different, and a person’s experiences – good and bad – can inform their focus.
When you’re first diagnosed, getting access to science-based, medically sound, factual information sets a solid foundation for reducing the stress of “not knowing.” You’ll find plenty of useful information from medical sources like the Celiac Disease Center at University of Chicago Medicine, Celiac Disease Center at Columbia University, and the Celiac Center at Beth Israel.
“Your gastroenterologist or other members of your treatment team are usually great resources for this,” says Bedell. “It’s important to make sure that the source of information is high-quality since the internet also has the potential to be full of inaccurate and unhelpful information.”
2. Get Connected
Bedell says that getting connected with other people who have celiac disease is a good idea, but she recommends that you be thoughtful about what types of ways you connect and how it impacts you.
“While online support groups can be a great source of emotional support and information, sometimes they can be overwhelming and can even tend toward more negative content,” she explains. “Try out a few different ways to get support. Get connected to someone else with celiac disease who you can talk to for emotional support or helpful dietary tips, attend a patient support group either online or in-person, look at websites, and decide what works best for you.”
GIG Support Groups are a valuable resource and way to connect to the gluten-free community. Each GIG Support Group has its own style or focus, but all of them provide access to information about gluten-free eating and recommendations of gluten-free products. Some groups swap favorite gluten-free recipes and places to eat, as well as travel tips. Other groups are actively involved in their communities, participating in events, from health and wellness expos to holding monthly meetings or events (currently online due to pandemic protocols). Learn more about GIG support groups and find one near you.
3. Get Additional Support (As Needed)
Bedell notes that people with celiac disease can continue to struggle with issues like depression and anxiety, even after maintaining a gluten–free diet, so getting help at any stage is important.
“People with CD who are struggling with longstanding depression or anxiety would likely benefit from medication and/or psychotherapy aimed at addressing these symptoms,” she says.
Bedell says one way to get specific support after a celiac disease diagnosis is to work with a gastrointestinal health psychologist or GI psychologist, like herself, to help you adjust to the diagnosis, make changes to your diet, and to help with any emotional distress you may experience even after you’ve adopted a gluten-free diet.
If a GI psychologist is not available in your area, find a psychologist, or other type of therapist, who has experience working with people with medical conditions – even better if they’ve worked with celiac disease patients before.
“While many people find that their symptoms resolve once they eliminate gluten, it is possible to continue to experience GI symptoms, and this is likely due to changes in the communication between the brain and the GI tract,” Bedell explains. Bedell says she has seen patients respond very well to treatments like cognitive behavioral therapy (CBT) for GI disorders. While CBT has been studied extensively on patients with irritable bowel syndrome and other GI disorders, they are not yet well studied on CD.
Bedell also says sometimes people with celiac disease can experience difficulty adjusting their diet, resulting in “disordered eating,” a term that often means that a person is overly restricting the amount or types of food that they are eating. When severe, disordered eating can result in a clinical eating disorder. If a person with celiac disease is struggling to maintain a healthy body weight or feels that food is completely controlling their life, they might benefit from working with a GI psychologist, or potentially an eating disorder specialist, for help changing these behaviors.
No matter where you are in your celiac disease journey, being informed, connected, and supported is key to tackling the challenges that may come your way. Sometimes, simply asking for help can be an important first step to reduce the stress of a celiac disease diagnosis.
Disclaimer: The information on this website is for educational purposes only. Consult your healthcare team when considering this information.
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