Advice for family and friends

Having a friend or family member diagnosed with coeliac disease can be a challenging and uncertain period. On the one hand, you may be relieved that someone you care about finally has an explanation for the way they have been feeling. On the other hand, you may feel uncertain or anxious about what their diagnosis means for their health and happiness moving forward. The impact of coeliac disease is not limited to the person diagnosed but can also affect their friends, family members, and partners. Activities like grocery shopping, cooking habits, and eating out are likely to change in ways that take some time to adjust to.

It is important to remember that you, as a friend, family member or partner, can have a significant positive impact in their life. Providing meaningful support can be challenging, especially if you know little about coeliac disease. It helps to extend empathy and patience during the adjustment phase, when the person is still learning how to navigate the challenges of the gluten free diet and may be nervous about accidental gluten exposure.

Consider the following suggestions as a place to start:

• Lend an ear. Actively listening to the person and their concerns is a good way to show that you care. It is also a good way to gain some insight into their condition in a way that is not intrusive, that is, letting them disclose their thoughts and feelings about their condition, rather than asking them unprompted (potentially bringing their attention to their condition when they prefer not to think or talk about it).
• Spending time with them or accompanying them to their medical appointments. Having can feel isolating, especially so if the person prefers to keep their illness and symptoms to themselves. Sometimes just being present with the person can make them feel supported.
• Developing your own knowledge of coeliac disease. Going to the effort of expanding your coeliac knowledge can foster a sense of care and commitment for the person diagnosed. It can also clear up any questions, concerns, or misconceptions you have about the condition. This website, as well as many others, offers free information and support on coeliac disease. If you are unsure about the accuracy or credibility of an information source, then raise this with your doctor.
• Be wary of offering advice. It is not uncommon for people diagnosed with coeliac disease and other gastrointestinal conditions to be swamped with advice and recommendations. Although it is usually well-intentioned, receiving unsolicited treatment advice can be frustrating –even more so when the advice pertains to ‘cures’, myths or misconceptions that have been debunked.

Taking care of yourself

Having someone close to you experience this condition can take an emotional toll on you, especially so if the person is dependent on you or if you are setting your own feelings and needs aside to help them. Remember to ‘check in’ on your own emotional health regularly. Chronic emotional distress can develop into a more serious mental health issue if ignored. Do not feel guilty about reaching out for your own support, whether it be to friends/family/partners, or a mental health professional.