Coeliac Disease Emotional Well-being and Needs

Coeliac disease emotional well-being and needs. About coping with coeliac disease psychologically. 

When there is so much to take on board as a newly diagnosed coeliac – the food-labelling rules, the new food and diet regime, the various physical implications and so on – the psychological impact of your diagnosis may take a back seat. As so much of your time is occupied with the practical implications of your condition, it’s easy to neglect your emotional health. So what problems can manifest themselves – and what are the possible solutions?

Coping with the diagnosis of coeliac disease

Some people welcome their diagnosis. Perhaps after having suffered for years, with doctors unable to get to the root of the problem easily, it can be a relief to be told that the problem isn’t all in their heads and is real, and that a gluten-free diet (GFD) should put them on the road to recovery.

But others don’t cope so well. ‘Why me?’ you may wonder. ‘Is it something I did wrong?’ Remind yourself that nobody is to blame for coeliac disease (CD): you, or your child, just got unlucky. It was genetics combined with a trigger over which nobody had control.

In an ideal world, as a new coeliac you would react 100 per cent positively, take the diagnosis on the chin, arm yourself effortlessly with a wealth of knowledge on the condition, and experience no emotional hiccups in making the transition to a gluten-free (GF) lifestyle.

But this is real life, and most people, through no fault of their own, find the road to acceptance a bumpy one, much like a bereavement.

Shock, anger, disbelief

You may feel fury that your body has let you down, perhaps that you’re still young, that it shouldn’t be ‘failing’ you already. You may find the diagnosis difficult to believe, and the implications too huge to contemplate: ‘It cannot be true!’ Perhaps you feel anger at the situation in which you find yourself, anger at how much you’re going to miss out socially and food-wise, anger at the glutenous society, filled as it is with newly banned foods such as pizzas and cakes, which have suddenly become unavailable to you. You may take your frustration out on loved ones.

Letting your feelings show can be beneficial in the short term. It is normal, and it will usually pass quickly, and those close to you will, it is to be hoped, understand.

Denial and indifference

‘I don’t have to worry about reading labels or watching what I eat – my partner or mother will make sure I eat the right things.’

‘I know I’ve got to cut down on gluten – but I can still have a few biscuits with my tea in the afternoon.’

‘I’ve managed fine up till now. I can put up with the diarrhoea, take some Imodium, and will just carry on as before. It can’t be very serious.’

Do you recognize any of the above attitudes? Passing the buck for your care on to others, not taking the diagnosis seriously, adopting a reckless attitude towards your well-being – these are all possible initial responses that need to be tackled, especially if they linger.

Self-pity

A brief period spent feeling sorry for yourself can do you good: if you’re overwhelmed with your diagnosis and its implications, having a short ‘shut down’ for a few days could be just what you need, and is perfectly normal. Allow yourself time off work. When you emerge from the gloom, as you begin to accept your situation, you will probably find yourself ready to face the task head on.

Ongoing problems

Some people take coeliac disease in their stride. Others experience occasional or chronic psychological difficulties, and it is vital to be aware of these.

Depression

This is a symptom of undiagnosed coeliac disease, but one study found that diagnosed coeliacs on a gluten-free diet were more likely than the general population to be depressed. A short period of mild depressive withdrawal can act protectively. But when this stretches on indefinitely, the situation becomes serious.

Older people, a group in which diagnosis rates are rising sharply, may be particularly susceptible to the ‘coeliac disease blues’. You may be feeling doubly fragile at a time when your body might already be showing other signs of ‘wear and tear’. This vulnerability can be much more debilitating than the practical implications of suddenly having to avoid wheat. Feeling ‘set in your ways’ and unable to make adjustments may also bring you down.

Symptoms of depression include:

  • indifference, including to pleasurable activities
  • reduced appetite or reduced interest in food
  • lethargy and tiredness
  • disordered sleep patterns
  • poor concentration and motivation
  • feelings of inadequacy or hopelessness
  • loss of self-confidence.

Complacency

This is a sign that denial could be creeping back. Ask yourself these questions:

  • Have you taken to being cavalier with checking food labels?
  • Are you beginning to take risks with products carrying ‘may contain’ warnings?
  • Have you started to catch yourself wondering, ‘I’ve been healthy for ages – how much can it hurt, just this once?’
  • Do you increasingly avoid telling people about your condition when you should?
  • Have you skipped appointments with your doctor or dietitian?

A ‘glutening’ episode can act as the wake-up call in this situation, but it is preferable to identify any slide towards complacency, and nip it in the bud.

Lingering denial

‘I’ve been gluten-free for three months, so I deserve that piece of cake.’

‘I wasn’t very ill. My body will have recovered now and I’m young and healthy so it doesn’t matter if I stray every now and then.’

The problem with ongoing denial about the realities of coeliac disease is that it can, clearly, lead to cheating on the diet and exposing your gut to gluten. Naturally, it’s tempting. You may desperately miss bread. You may get offered a piece of birthday cake in the office and want to enjoy it with everyone else. It’s very, very hard.

Embarrassment

Sadly, many coeliacs feel ashamed of their condition, and embarrassed at feeling as if they’re ‘making a fuss’ at social events. People are not always understanding or sympathetic: because the gluten-free diet is undertaken by some people as a means through which to lose weight or ‘detox’, you may be treated sceptically as a dieter or faddy eater. Coeliacs can react to this in one of two ways: either they avoid social situations and isolate themselves, or they expose themselves to risks by not speaking up.

Anxiety and stress

Even if you were relieved at your diagnosis, that relief may be short-lived: the stress of not knowing what was wrong and perhaps trying to convince your doctor that something was amiss may have been lifted, but now it has been replaced with the anxiety of an uncertain future. How are you going to cope? Can you cope?

Some underlying anxiety is OK: you need to be alert to possible danger and ready to respond. For instance, it is vital that you maintain a low, constant level of vigilance to avoid gluten, so don’t look upon stress as all bad.

That said, chronic stress can be debilitating: it is often felt in the gut – the last place you want disturbance as a coeliac – and is a sign of a problem that needs to be addressed. Symptoms of anxiety include: a dry mouth cold or hot sweats changes in eating habits inability to work or concentrate sleep disturbance sexual disinterest or dysfunction obviously untrue negative thoughts.

Eating disorders

A possible association between coeliac disease and eating disorders such as anorexia nervosa and bulimia nervosa has received very little attention.

The causes of eating disorders are difficult to pinpoint, but biological, environmental and psychological factors are all likely to be involved. They are more common in younger women, but are not exclusively seen in this group.

You are more susceptible if you are anxious or depressed or have low self-esteem, or have experienced a stressful event. Some researchers think the Westernized ideal of thinness and the obsession with weight loss and celebrities or models can be a contributing factor. It would not be implausible that the weight gain in response to a gluten-free diet that many coeliacs experience could be a potential triggering issue for some women.

It is also possible that the great care that coeliacs need to take with their diets may, in vulnerable people, gradually slip towards hyper-obsessiveness, increasingly restricted diets and then anorexic behaviour.

Becoming obsessed with diet or size, being disturbed by minor weight gain, depression, social withdrawal, and excessive exercise are all signs of a problem.

Schizophrenia

Schizophrenia is a mental health illness, affecting thinking, feeling and behaviour. Age of onset is typically in the teenage or young adult years. Schizophrenia may involve disordered thoughts, delusions, hallucinations, apathy and lack of emotional response and interest.

A link between coeliac disease and schizophrenia is controversial, but has been the subject of speculation since the 1960s, when a researcher made the observation that it was rare in communities that consumed no wheat. The link is suspected by some, but if it exists the true nature of it remains unclear, although autoimmune mechanisms may be involved.

Studies have found around a third of those with schizophrenia have high levels of antibodies to gluten in their blood, and the basis for gluten as a trigger to some cases of schizophrenia is being explored.

Some people with schizophrenia may benefit from a gluten-free diet.

Self-help

So what can you do? Although there are plenty of ordinary people, specialists and groups who can help, there’s one person who is undoubtedly the most important in your own emotional care and personal journey towards acceptance of your coeliac disease. You.

Positive learning

Learn everything you can about coeliac disease, and approach your fact-finding mission positively; your aim is to eliminate the anxiety which ignorance breeds. If there is something that you do not understand about coeliac disease, a niggling query that is bothering you, then resolve to find the answer – if this website, an internet search or coeliac disease books can’t help, ask a health-care professional, or contact Coeliac UK. Getting on top of issues about which you’re unsure is empowering.

Positive thinking

Remind yourself that your condition, despite being serious, is manageable. Focus on the positives: think of the foods that you can eat (there are hundreds), not those that you can’t (there are only a handful); think of how your health will improve, not worsen, on a gluten-free diet. Positive thinking also helps your self-esteem and self-confidence, vital when facing the gluten-containing world as a coeliac.

Exercise and activity

Good for you physically, but super on a mental level too. You don’t have to join a gym. Don’t run if you hate running. Merely resolving to take more walks is effective. Instead of focusing on the ‘exercise’ aspect, do something you love that involves activity and energy – such as amateur dramatics or DIY. Your body was designed to be active through living.

Fun and laughter

Humour is subjective, and what makes you laugh may make someone else scratch their head, but take part in fun activities, watch your favourite comedy shows to cheer you up, and share a joke with fellow coeliacs – whether it’s over a dodgy coeliac tummy or the silly things that ‘wheaties’ (non-coeliacs) say.

Laughter is not the best medicine – nutritious gluten-free food is – but it’s still a very good one . . .

Pride

Why not? What’s the alternative – shame? Most people avoid certain foods. This can be for any number of reasons – ethical beliefs, religious beliefs, cultural beliefs, food allergies, food intolerances, unpalatability, health concerns. You don’t eat gluten for a very good reason – and it’s as valid as others’ reasons for not eating peanuts, dairy or pork, for example. Have the same pride and confidence in your restriction as anyone else. And if you don’t want to always wear your ‘coeliac hat’? That’s OK too. You can be discreet – as long as it doesn’t compromise your health.

Relaxation and breathing

Many people say they’re unable to relax, but there is more to unwinding than just willing yourself to do so. Pampering – a hot bath, aromatherapy oils – can help, as can a massage from a willing partner. Meditation, prayer and chanting are deeply relaxing if they are right for you personally, as are forms of yoga and healing martial arts such as t’ai chi. Find what works for you, and remember that relaxation takes practice.

For instant stress relief if you’re feeling uptight or nervous, try a technique of ‘expanding’ your peripheral vision. Find a point opposite you, just above eye-level, and keeping your eyes on that point, begin slowly to broaden your field of vision to notice more of what’s on either side of the point, so that eventually you’re paying attention to what is visible in the corners of your eyes. You should begin to feel your breathing moving lower in your chest, slowing down and becoming deeper, and your facial muscles relaxing. Very calming.

Indeed, learning to breathe correctly is of enormous value to stress relief: inhale deeply and slowly into the belly to the count of three, exhale evenly to the count of three, then pause for one – and repeat. Yogic breathing while seated and focusing on a lit candle is soothing.

Volunteering

Helping yourself by helping others can work wonders. Volunteering gives something back to the community, and will also strengthen your character and prove fulfilling.

Coeliac UK is always looking for volunteers to help with campaigning and research or to boost local support group membership and activities. The charity also supports members in organizing fundraising events. You could also get involved in educational activities: giving a demonstration of gluten-free baking at your local school to kids, parents and teachers, for instance.

Volunteering can put you in touch with other coeliacs who can offer moral and practical support too.

Another option might be to volunteer to be a media ‘case study’: medical journalists often require these to illustrate articles in lifestyle magazines and newspaper health sections. Coeliac disease is a popular subject, partly because it is so underdiagnosed, and there is a constant need for new case studies. They offer a chance to share your story: this can be therapeutic, and perhaps help readers to solve their own health predicaments. All that is usually required is a short telephone conversation with a journalist, and possibly a photograph.

Writing

Putting your anxieties and fears down on paper is an excellent way of clearing your head, unburdening yourself, understanding your problems and charting your emotional progress.

An alternative to keeping a private diary is keeping a public one – or a ‘blog’, which can be an online web diary of your experiences with coeliac disease and, well, anything you like. Coeliac blogs are very popular, and many coeliacs share their tips, recipes and thoughts online, and invite you to add comments. You may find your blog attracting attention from coeliacs worldwide. Comment on others’ blogs and they’re more likely to comment on yours.

Friends and family

The role of loved ones in your emotional care should never be underestimated. When you’re first diagnosed, assess your support network and ‘rally the troops’ – your core group of partner, friends and family, who care for you and who you know can help you to come to terms with your condition.

The good guys

You need around you positive people who can offer practical advice and emotional support, who can lift your gloom and bring laughter into your life when you feel there is none, and who make you feel understood. The most valuable are the people who know your needs, the implications of your illness, who don’t make you feel like a burden, who can act as your personal ‘bodyguards’ should you be tempted to cheat – and who don’t make demands in return.

You also need people who are unafraid to give you difficult truths when they apply – to point out that you are foolishly taking risks with certain foods, or that you may benefit from seeking professional help with your mental health, for instance.

Shutting people out is a never-win situation. Most who care for you will want to help in any way they can, so don’t be too proud to ask for practical help or a shoulder to cry on. You may feel you want to protect family members from the difficulties and implications of your coeliac disease, but, again, most prefer to be involved – even if it’s just by helping you out with the gluten-free groceries.

The not-so-good guys

Understand that not everyone you meet, work with or are friendly with will be helpful or supportive, often through ignorance not malice. Some people simply will not ‘get’ coeliac disease, refusing to believe that something as innocuous as wheat can make you so ill, and will insist that ‘allergies are all in the mind’ because an article they once read said so. Upsetting as this may be, this will probably always be the way to some extent, and arguing the case may not always prove fruitful, or make you feel better.

All friends have strengths and weaknesses, and much-valued confidantes may not necessarily be the right ones to turn to when you’re suffering problems related to your coeliac disease; for instance:

  • those who enjoy the ‘fuss’ of your coeliac disease, making an exaggerated issue of it at restaurants, for example;
  • those who trivialize your condition and say you shouldn’t take it so seriously; or
  • those who ‘hijack’ your coeliac disease with their health problems less serious than your own.

Be aware of different people’s reactions and be alert to those who make you feel worse. There’s no shame in taking a step back if you need to. You must come first. That said, remember too that people are more likely to be understanding and supportive if you demonstrate that you take your coeliac disease seriously. If you’re a little reckless with label-reading or if you ‘cheat’ occasionally for a special occasion, people are understandably more likely to be sceptical.

Support groups

Occasionally, you may feel more comfortable seeking the support of strangers.

Charities

The Coeliac UK helpline (0845 305 2060) is staffed by knowledgeable people who can offer emotional as well as practical support. Other support lines of potential value include:

  • Samaritans – 08457 909090
  • Stress Anxiety Depression Helpline – 01622 717656
  • beat (Eating Disorders Association) – 0845 634 1414

Even if you don’t volunteer, taking part in local activities organized through Coeliac UK’s support networks will relieve the isolation you may be feeling as a newly diagnosed coeliac.

Online support groups

Chat forums dedicated to those with coeliac disease – or other food-related sensitivities – can be supportive. People who live in secluded areas and feel isolated, those who are disabled, or single parents of young children, are among those who find these groups of particular value – but they can help anyone who perhaps is shy or has difficulty with face-to-face contact, and prefers the anonymity the internet offers.

Although groups can be encouraging, choose one with a knowledgeable moderator, who will remove suspect, offensive or dangerous postings. It is best to use them for matters such as emotional support, advice on food products, sharing recipes, tips on where to eat – rather than for medical advice.

Professional help

Sometimes, stubborn psychological problems need to be referred a step further.

Your GP or family doctor

Doctors are your first port of call if you’re suffering symptoms of stress, depression, anxiety or are concerned with other areas of your psychological health. Doctors are trained to see signs of emotional difficulties in their patients, and ideally placed to advise on possible private treatments or referrals. Do make use of your GP or family physician; many have good counselling skills and unburdening yourself to your GP may be all you need. He or she may also identify a need for a short course of anti-depressants, if relevant.

Your dietitian

If you’re anxious about gluten avoidance or about nutrition, your dietitian can help fill the gaps in your knowledge and offer guidance and reassurance. Dietitians may also have a role to play in identifying and helping resolve possible eating disorders. Tempted to cheat? Missing bread? They can support and advise here too.

Your gastroenterologist

Your most complex queries can almost certainly be answered by your gastroenterologist. The more knowledge you demonstrate, and the more questions you ask of specialists, the more likely you will be given greater detail and reassurance.

If you feel burdened by not knowing whether or not you are improving on a gluten-free diet, a consultant can arrange a biopsy to check for gut recovery. If you feel tempted to cheat, a gastroenterologist can remind you of the seriousness of the damage you risk – that there’s only so much recovery your gut can take, and that you’re increasing your long-term risks of complications, such as osteoporosis and malignancies.

Life coaches

Increasingly popular, a life coach can help with motivation to change your lifestyle to benefit your health, give you confidence to talk to people about your dietary needs, and set goals towards making important changes fast, and less urgent ones gradually over time.

‘Talking’ therapists

If your doctor feels that you need more specialized help, referral for counselling or psychotherapy may be suggested. There are few specialists working in these fields in the NHS, so a private referral may be required.

There are few differences between the talking therapies, even though counselling sounds – and is – gentler and less demanding than psychotherapy. Both involve face-to-face meetings with a trained therapist to reach any number of end goals, depending entirely on the patient, such as the reduction of psychological distress and the promotion of emotional health.

Counsellors will listen to you, aim to identify with you and your dilemmas, help you to clarify them in your mind, and perhaps give advice – although generally their aim is to guide you to discover your own answers to your problems through carefully guided discussion. Counsellors can, for instance, help patients to cope and come to terms with difficult events like diagnosis.

Psychotherapists, of which there are many kinds, work similarly, but use more analytical approaches and explore difficulties in greater depth. They may work with those suffering from depression, anxiety and addictive behaviour disorders, those who are finding it difficult to adjust to their illness, and those whose condition is having an impact on many areas of their life.

Make sure you have an assessment session, and discontinue any therapy with a specialist with whom you feel uncomfortable – being at ease with your counsellor is vital. Remember too that counselling is not easy, or a magic wand: expect positive changes but not miracles. Some people approach therapy expecting their stresses to be entirely removed, but therapists will not do this: they will arm you with coping mechanisms, not seek to abolish all your responses.

Cognitive behaviour therapy (CBT)

CBT is an objective psychotherapeutic approach that is less interested in what caused your emotional or psychological difficulties, and more concerned with how you handle your dilemmas. It challenges negative thought patterns, helps you to identify and understand them, equips you with coping skills, and implements changes to unhelpful thinking or behaviour. The therapy is structured, practical and result-focused, unlike counselling, which usually involves ‘freer’ conversation and a greater rapport with the therapist.

CBT might be right for those looking for help with a specific issue. It is useful for depression, phobias or stress, for example, where the emphasis may be on cognition or thinking; while for eating disorders, predominantly behavioural issues will be tackled.

Hypnotherapy

This is a psychotherapy that uses hypnosis – a state of deep relaxation and heightened awareness, which makes the mind more receptive to positive suggestion. It can help those suffering from low self-esteem and anxiety, to name but two.

The road to acceptance

  • Resolve to take positive action – learn to scrutinize labels, ask questions, learn everything you can about coeliac disease …
  • Focus on everything positive – there are lots of new foods to enjoy, remember how much healthier you feel on the gluten-free diet, remind yourself you are on the road to recovery …
  • Forgive yourself – if you make mistakes, if you feel grumpy, if you need some time to yourself …
  • You are never alone – spend fun time with loved ones, talk to fellow coeliacs, call a support charity if you need one.