Chapter 18
In This Chapter
Identifying negative feelings
Confronting denial
Dealing with mistakes
Looking at the big picture
Staying on track
L ook as hard as you like, but you won’t find too many best-sellers at the bookshop with titles like How to Cope with Extreme Good Fortune. No, you really need help only when you’re facing challenges. And some people feel that a gluten-free diet is one big doozy of a challenge. Some of that has to do with why they’re going gluten-free in the first place.
You may have decided yourself to go on a gluten-free diet — you think it looks like a really healthy diet, a lot of people are trying it, you think it might be fun, or it may improve a problem with your health — and because you’ve made that choice yourself, you’re really keen to try it all out. If you find it too hard or you can’t always get gluten-free food, it doesn’t matter too much if you break the diet from time to time, or even give it up after a few weeks. If, on the other hand, you’ve been diagnosed with wheat or gluten intolerance and advised to avoid or cut down on wheat or gluten, the choice isn’t yours entirely and you may feel a bit pressured. But the sky won’t fall in if you eat a bit when you have nothing gluten-free around, because occasional small amounts of a problem food may not cause symptoms for people with food intolerance.
It’s an entirely different kettle of fish when you’re diagnosed with coeliac disease or dermatitis herpetiformis. You’re told to remove gluten entirely from your diet, for the rest of your life. No two ways about it. No cheating. In this case, you don’t get a choice at all.
No prizes for guessing who’s going to have the hardest time dealing with this new diet. Everyone likes the freedom to choose how to live their lives.
In this chapter, we discuss many different ways you can break out of the negativity and see things in a more positive light. Yes, for some people this is a difficult transition in life . . . but, ultimately, you’ll be better for it.
Some people just take the whole change to gluten-free in their stride with only a slight change of pace while they make adjustments to their diets and routines. Others really struggle to cope.
The reasons living gluten-free can be difficult from an emotional standpoint are vast:
In this section, we talk about some of the common emotions people experience when they hear they have to go gluten-free. You won’t experience them all, because everyone is different.
If you’ve ever seen a teenage girl who can’t find her mobile, you’ve seen panic. For some people, changing to a gluten-free diet also causes shock and panic.
On one hand, it all seems so sudden. You’re in the doctor’s surgery talking about your bowel movements or lack thereof, and the next thing you know, you’re branded with a condition you’ve probably never heard of that will change the way you eat for the rest of your life. Yet in some ways, it’s not sudden at all. You’ve probably been having health issues for years. And now it has a name. And a treatment. Both of which can stun you.
You’re numb — you’re in shock. Have you ever had fingers that were so cold they were nearly frozen? But when they began to thaw, they throbbed and felt like you’d just run them through a shredder. That’s when the reality of the words ‘diet for life’ begins to sink in and you start to panic. What will you eat? How will you do it? Where will you find special foods? Can you do it?
Rest assured that these feelings are normal and they do pass. Over time you’ll work out what you can eat and your panic will subside as you become more comfortable with the diet. The learning curve is steeper for some than others, but you will discover the process and the panic will wear off.
The shock and panic have subsided (refer to preceding section), and you’re beginning to feel more comfortable with what you can and can’t eat. But something’s getting at you. You realise you’re miffed. Peeved. Furious and agonisingly frustrated!
It doesn’t matter who or what you’re mad at — some people in this situation are mad at their parents for giving them a ‘defective’ gene; others are mad at themselves for passing the gene on to their kids; some are mad at their partner for not being more understanding; most are mad at the major cereal manufacturers who feel it’s a Universal Cereal Manufacturer’s Law that they must put malt flavouring in every cereal they make; a few take it out on God for ‘thinking up’ this crazy condition in the first place.
The why-me-I-haven’t-done-anything-to-deserve-this syndrome kicks in and you look around at the rest of the human race and feel victimised.
Anger is a healthy emotion and learning to deal with it is one of the most valuable lessons you can learn in life. Taking your anger out on those closest to you is tempting, especially if they’re adding to the frustration by being less than understanding about your new diet. But don’t lash out, especially at the people closest to you, because they’re not to blame and they can be immensely supportive when you need it most. Feelings of anger are natural, but you won’t change a thing by staying angry. In fact, life just isn’t fair no matter how much we think it ought to be. It’s not fair when tiny babies get leukaemia. It’s not fair when tsunamis wipe out your home, your town and your entire family. You’ll feel a whole lot better when you accept the situation and recognise that it could be far worse.
Are you grieving? Do you feel like you’ve lost your best friend? In a way, you may have. Food, your control over what you eat, and even the simple act of putting food into your mouth can soothe you and bring you comfort. When you’re forced to give up your favourite foods (if they weren’t your favourites before, they will be after you give them up), the change can make you feel sad, depressed and quite isolated.
If your child is going gluten-free, those feelings of grief can magnify. You dream that your children’s lives are carefree and ideal; having to deal with dietary restrictions that prevent them from eating what other kids eat isn’t usually part of your plan.
Some people reach a point of desperation or despair. They find the diet to be cumbersome and confusing and they keep making mistakes. Then they start to think if they can’t do this right, they may as well not do it at all and they give up. Grief and despair are normal emotions, but don’t give in to them. You’ll get over your feelings of sadness and loneliness, and this lifestyle doesn’t have to be in the least bit isolating or depriving. As for doing it right, give it your very best effort — truly 100 per cent — and you’ll get it. Dealing with a mistake from time to time is better than giving up and not trying at all.
You may feel loss in several different ways when your doctor tells you that you have to go gluten-free. You may lose your favourite foods — and what about the social situations that seem to go hand-in-hand with them? You miss pizza and beer during Friday night football, or Grandma’s famous chocolate chip biscuits that everyone dives for before they remember to hug Grandma. Not to mention that great staple of the Aussie diet, the humble meat pie. (Okay, we’ll stop with the reminders now.)
Many of your favourite foods, at least in the form you know them, are a thing of the past. At first the social situations may not seem the same without them — and they aren’t just the same. They’re the same but different and that’s okay. Remember when you attend these events that they’re not really about the food — they’re about the socialising. Also remember to take along foods that you love — and follow the golden rules of going out gluten-free that we cover in Chapter 16.
Another kind of loss people feel is a loss of convenience. These days, many foods are prewashed, precut, precooked, prepackaged, pre-resealed, and practically pre-eaten and pre-metabolised into tummy fat before you even get them home from the shops. Convenience foods come as a complete snack or meal, in various combinations to please any palate. Yes, these foods are convenient — and sometimes, when you pluck them from the aisles of the produce section, they’re even good for you and gluten-free. But many of them, for you, are a thing of the past. So for most people, it’s true. You do lose that convenience. You’ve also lost a bit of spontaneity. You can’t suddenly decide to go off somewhere for the day or weekend, or change your plans without thinking, What will I eat? or What food will I take? Okay, so giving up gluten isn’t as convenient — and you miss your old faves. We’ll give you that — you can feel a sense of loss. But look what you’ve gained. Your health! The gluten-free diet is your key to better health, and that’s priceless.
Occasionally, people get so overwhelmed with the whole concept of their medical condition and the gluten-free diet that they feel an impending doom and they experience depression to one degree or another.
After you’re on a gluten-free diet, accidentally — or intentionally — eating gluten can sometimes make you feel depressed. Some people before they’re diagnosed (and some even afterwards) are accused of ‘making up’ their problems, or they’re told the symptoms are all in their head. The accusations can be so hurtful and frustrating that they cause the person to go into a state of depression.
And you also feel, of course, the restrictions, grief, sense of loss, anger and other emotions we discuss in this chapter. All of those can lead to depression.
Unfortunately, depression caused by illness can create a vicious cycle. The physical symptoms lead to suffering and depression, and then the depression makes the physical symptoms worse. If you’re feeling depressed, make sure your diet is 100 per cent gluten-free so you know that what you’re feeling isn’t a symptom of gluten ingestion.
It walks like a duck. It quacks like a duck. It even lays duck eggs. But you’d like to believe it’s a golden retriever. Your mind spins into triple somersaults to explain away the reality that you don’t want to accept. Denial comes in all sizes and shapes — some types affect you, other types affect those around you.
When you hear you have to give up gluten because you have coeliac disease, deciding to run, not walk, to the nearest sandpit to start digging a hole for your head is quite common. Denial is a big problem for some people. This section covers a few phases of denial, starting with the most immediate.
For some people the denials start as soon as the idea of gluten is mentioned.
Your initial reaction is a common one: I can’t have that condition; I’ve never even heard of it; I’m too fat to have that; I’m too old to have it; I’m too (insert adjective that will support your denial) to have that. After all, bread is the staff of life, and humans have been eating it for centuries.
You can deny until the cows come home (where were they, anyway?), but that doesn’t help your health at all. What does help is getting on track as fast as you can, because you have improved health to look forward to.
Another type of denial settles in after you’ve been gluten-free for a while and you’re feeling great. In fact, you feel so good that you start to think maybe nothing was really wrong with you, and you can’t really remember ever feeling all that bad.
Of course, this is about the time the reality of doing this for the rest of your life starts to set in and you’re tempted to cheat — but it’s not cheating if you don’t really need to be gluten-free now, is it? So begins the battle in your brain, where good and evil don’t see eye to eye.
The good half of your brain is telling you, ‘Mmmmm, this is the yummiest gluten-free cracker I’ve ever had!’ But the demon-in-denial side is saying, ‘Look, I feel fine. I must have been going through a bad patch. Probably had nothing to do with gluten. One little slice of pizza won’t hurt.’ Step away from the pizza box. This is a period of ambivalence, in which you’re hoping beyond hope that you don’t really have to give up gluten and are ‘proving’ it to yourself by ignoring red flags (and your conscience).
The biggest problem with denial is that it justifies eating gluten. If you have this epiphany, ‘realising’ that you don’t need to be gluten-free, it’s tempting to run, not walk, to the nearest bakery.
Resist the temptation. If you’ve been gluten-free for a while, then yes, you feel great, but that’s because of the diet, not in spite of it. The danger in testing your little theory is that you may not have any immediate reaction when you do and then you’re likely to jump to the obvious (by which we mean ‘desired’) conclusion that you never needed to eliminate gluten in the first place.
If you’re still not sure that you really should be gluten-free, here are some steps you can take that may clarify things for you:
The most common type of denial that others exhibit occurs when they have all the symptoms themselves and refuse to admit it. Why is it so hard for relatives to believe they may have this? Problems with coeliac disease, after all, run in the family and many times family members have classic symptoms. Gluten intolerance of one type or another is a common condition — yet often they say, ‘I don’t have that’. The bottom line is that they don’t want to have it.
The other sort of denial develops out of ignorance. People don’t always ‘buy’ what you’re telling them about your condition or the fact that a gluten-free diet is essential for your good health. They also don’t always understand how strict you really need to be in sticking to the diet. Danna’s been accused on more than one occasion by more than one person of being neurotic about trying to avoid gluten. Doctors have told her she’s going ‘overboard’ because she checks the ingredients in a ‘tiny’ pill. Loved ones have accused her of being obsessed about gluten and making sure food is gluten-free. Margaret has endured the rolling eyes and dismissive headshake of waitresses and had a stranger lean over from the next table at a restaurant to announce, very loudly, ‘A slice of bread never hurt anyone!’ And we’re guessing more than one waiter has muttered something about being high-maintenance as he walked away.
It would be great if we had advice on how to handle the ‘others’ in your life who don’t believe you about your condition or won’t accept that they, too, could have an intolerance to gluten. You have no way to force them into testing or trying the diet, which is sad — because those steps may dramatically improve their health. Being positive about the gluten-free diet and enthusiastic about all the delicious products and clever recipes now available may help your relatives to lose their fear of being a coeliac. If they realise it’s not really such a big deal, perhaps they will be more likely to see a doctor and have the tests.
We agree that some difficult emotional challenges arise when you go gluten-free. You’ll need to make quite a few changes to your eating patterns. But overcoming those challenges and getting back on track to enjoying life and all it has to offer — far beyond food — are important.
If you don’t take control of this diet, the diet will control you. Part of the reason you sometimes feel out of control when you’re told to go gluten-free is because you’re afraid. Afraid of messing up. Afraid of believing inaccurate information. Afraid of letting go of your habits and favourite foods. Afraid you’ll feel deprived. Afraid of being different. Afraid of trying new foods. Not to mention the confusion you experience when you realise how much gluten is hidden away in unexpected places. How will you ever remember all this labelling stuff? (We unpick the labelling mysteries in Chapter 4.)
The only way to get beyond the fear is to try new things. Be creative — explore new foods — tantalise your tastebuds with all the gluten-free goodies you can think of. Arm yourself with accurate information. Be prepared when you’re out and about. Taking control of the diet — and giving your kids control of theirs — is the key to living and loving the gluten-free lifestyle.
Many people embarking on a gluten-free diet hear some pretty scary words being bandied around. Words like disease, chronic, restrictions, lifelong, malabsorption, intestinal damage and intolerance are all part of the gluten-free lingo.
Although it’s easy to be somewhat stunned by the heavy implications these words have, looking beyond them is important. You may have a chronic disease, but of all the chronic diseases up for grabs, one that can be so successfully managed by diet alone has got to be the best. Thinking more about the fact that your health will improve, you’ll feel better, you’ll reduce the likelihood of having long-term complications and you’ll have more energy can help shift your perspective in a more optimistic direction.
When the only food you can eat is gluten-free, every menu item begins to look like a croissant. Wanting what you can’t have is the essence of human nature. Tell someone he can’t juggle machetes and he’s likely to have a sudden urge to juggle machetes.
Biting into an explosive rice cake topped with tomato, gluten-free ham and shredded lettuce (and beetroot if you like to live extra dangerously), compared with munching the equivalent fillings in a fresh focaccia or sandwich? It’s a tight contest.
It’s perfectly normal to feel your choices are limited (they’re limited but not limiting) and to pine for freshly baked garlic bread. It’s also normal to peruse a menu and feel like the only thing you can order is a salad without the dressing — or to stare at your pantry and see only rice cakes.
Vegetarians make pretty good role models for improving your perspective. They don’t whine about the fact that they’re missing out on greasy pork chops and T-bone steak. Quite the contrary: They revel in their diets, usually celebrating their meat-free lifestyle.
When it comes to your dietary restrictions, you will, most likely, encounter people who appear unconcerned, uninterested, thoughtless and sometimes even downright rude. From time to time you may have hurt feelings and may even feel ostracised. Other times you’ll find that people do care but forget about your needs, or just don’t ‘get it’ and serve foods you can’t eat.
Keep in mind that you’re probably gaining an entirely new respect for food and a heightened awareness of what having dietary restrictions feels like. And you’re probably much more aware of other people’s restrictions and sensitivities.
Meanwhile, the rest of the world is unenlightened about the intricacies of the gluten-free lifestyle and may actually be ‘thoughtless’ enough to suggest you join them for dinner — at your (former) favourite pizza place.
Don’t be annoyed or offended. People are busy and sometimes so focused on their own fast-paced lives that they can’t possibly remember to accommodate yours. Most of the time they’re not being rude or thoughtless (okay, sometimes they are); they’re just unaware. Be glad they asked you to dinner and either bring something you can eat, order the salad, or suggest a different restaurant. Save the negative energy for something that really matters — like the kid next door who feels compelled to practise the drums at midnight.
At those times when you’re really low, you can actually change the way you feel by making yourself think positive. It’s hard, but it works. Creating optimism is easier for some people than others, because everyone falls on different parts of the Optimism Spectrum to start with. You have the ohmygosh-those-are-the-most-incredibly-beautiful-mosquitoes-on-the-planet types, and then the I-find-her-chirpy-perky-optimism-downright-depressing types. Where you fall doesn’t really matter; you, too, can do some positive thinking and see how it lifts your mood.
Attitudes spread like germs through a nursing home — and, like germs, you can’t see them, but if you catch the bad kind, they can make you feel pretty nasty.
Sometimes humans are like germs, silently spreading crummy attitudes to unwitting victims. If you’re unhappy about having to adopt a gluten-free diet and haven’t found some of the tips in this chapter to help shake your anxiety, at least don’t spread your misery around. Some people still aren’t all that familiar with gluten, the gluten-free diet and the medical conditions that benefit from it. You may be the first person who’s teaching them about it.
If you feel compelled to whine about the foods you miss or express excessive feelings of deprivation and despair, people will feel sad and sorry for your ‘misfortune’. Do you really want to be an object of pity? Try instead to portray being gluten-free to others as a great lifestyle, a positive event in your life and a healthy way to live so they can feel that way, too.
If your doctor has diagnosed you with coeliac disease or intolerance to wheat, you may feel different about yourself. Your diet is different — but in the big picture, your restrictions are no different from those of people, such as vegans or people with peanut allergies, who have other diet restrictions.
Sometimes people let their condition define who they are. Try not to do this. Is having this condition a disappointment? Maybe — maybe not (we hope after you finish this book, you don’t think so!). You will at times feel cheesed off about it and that’s okay.
What you’re not is a victim, a martyr, or a sick person. In fact, you’re on the road to recovery and amazing health. Many people have some kind of adversity in their lives and they deal with it — you can, too. You can use the suggestions later in the chapter to help you find your own way of coming to terms with this change in your life.
Force yourself to remember that the gluten-free diet is the key to your better health, and focus on the great thing you’re doing for your body by being gluten-free. Here are a few more tips that may help you beat the blues:
You have approximately 4.2 gazillion diets to choose between — low-fat, high-protein, low-carb, low-kilojoule, low-glycaemic and everything in between. The thing they all have in common is that people cheat on them. It’s a fact. People cheat on diets.
But you can’t cheat on this one if you have coeliac disease or dermatitis herpetiformis. No, not even a little. ‘Everything in moderation’ and ‘a little won’t hurt you’ don’t apply here.
Resisting the temptation to cheat starts with understanding why you want to cheat.
You may want to eat forbidden foods for lots of reasons and, if you hope to resist the temptation, it’s important to work out what’s driving your desire. Here are some of the more common triggers for temptation to cheat on the gluten-free diet:
Although the factors in the preceding list are powerful in enticing you to go for the gluten, overcoming the temptation is important. The key to saying no is taking another look at the consequences.
One of the tough parts about looking at the consequences of your actions is that if they’re not immediate and drastic, you sometimes feel that they don’t matter.
If you have coeliac disease, though, the consequences can have serious adverse effects on your health and, if you cheat regularly, those effects are cumulative. For some friendly reminders about how much damage you could be doing when you cheat, refer to Chapters 2 and 3. If you have an intolerance to wheat or other gluten-containing grains, you will not be damaging your gut, but you will probably suffer the usual reactions and you could be compromising your good health.
After you realise why you want to cheat and you remind yourself of the consequences, you have to finalise the deal by just saying no. Here are a few things you can do to make this a little easier:
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