I’ve talked a lot about food and other aspects of having celiac disease and going gluten-free, but the truth is that having celiac disease affects every single part of your life—your family, your love life, your job, your social plans, your travel plans, even your mood and your attitude. The trick is to figure out how to live with it. In this chapter, I want to talk about your life beyond food. I want to tell you what I know about supplements, exercise, heavy metal toxicity, and all the little things you can do to feel better today. This is a chapter full of tools I hope you will use, to make your life better right now, to help you find your way. You’ve been through a lot, and you deserve information that will actually make a difference in your life. Here are tips I’ve picked up along the way that have helped me start to feel better, have more energy, and get along in the world more easily. It’s never easy, but it can be easier.
Resting and Stress Management
Getting rest and keeping stress at bay is huge. Stress has an enormous impact on the immune system, and many studies have clearly linked lack of sleep with stress, and stress with autoimmune disease. It’s a 1-2-3 punch.
Stress remains my biggest problem with my health. It will take me out every time. Sleep, true restful sleep, is so necessary because it gives the body time to heal and detox. Make sure sleep is a major priority for you, and you will feel noticeably better during the day. Don’t watch TV or stare at any kind of screen within an hour of bedtime, to calm your brain and thoughts, and stay quiet and mellow in those last few hours. Then, go to bed early most of the time. Anything you might have done instead of sleeping is probably not as worthwhile as sleeping.
Also, consider meditating again before bed, to calm your mind and body in preparation for sleep. It’s also a good idea, in the morning, to start your day out on a calm and peaceful note. Try it—it might change your life. Just sit quietly, with no distractions, and check in with yourself. Here’s one simple method:
1. Get into a comfortable position, close your eyes, and just listen to your breath.
2. When a thought comes into your mind, or you start thinking of all the things you have to do, just come back to focusing on your breath.
3. Keep practicing! It’s difficult at first, but the more you do it, the easier it gets, and the better you will find your brain working.
Meditation does wonders for your stress level and brain fog. With celiac disease, your insides are struggling all the time. This gives your mind, as well as your organs, a few minutes to just be. If you are having trouble getting started, silently thank your gut and heart and liver and pancreas and immune system for working so hard for you. Feel grateful. Gratitude is an instant calmer.
I am close to someone who pretends she is okay all the time, for her family. She takes chances with what she eats because she doesn’t want to make the kids feel bad, and she doesn’t want to bother her husband with the inconvenience of her disease. When she is practically fainting from fatigue, she refuses to take a moment for herself to lie down. She doesn’t want to burden anyone. For this reason, she is ill more often than she has to be. Now she has been diagnosed with Hashimoto’s disease as well as the celiac disease she has been denying. I’ve seen this firsthand, over and over again. I hear people apologizing all the time for their illness. I still catch myself doing it, and it’s time to stop. A woman recently came into the bakery with her son. I was in the back, and I heard her ask, “Is Jennifer here?” I came up front, and she just stared at me, then she started to tremble. At first she couldn’t speak. Then she started to cry. Her son looked absolutely humiliated, and I could tell this woman didn’t normally express her feelings. It was very sad. We need to honor ourselves and our bodies, and you don’t help anyone around you by lying about how you feel or hurting yourself so you don’t inconvenience others. It robs your family of their mother, father, wife, husband, sister, or friend when you aren’t yourself. Part of who you are is celiac. It’s part of the package.
Having celiac disease isn’t easy on anybody, but if your family and friends love you, and you don’t keep your feelings from them by saying, “No, I’m alright” all the time, then they could be part of your healing rather than inadvertently making you worse. They don’t mean to do it, but if they don’t know what’s really going on with you, they will. Is it easy on them? No. But your husband or wife or lover, as well as your children, would rather see you feeling good than feeling ill. They would rather have your energy and happiness than watch you keep pushing yourself into more pain, or suffering in silence, or just being too sick or anxious or depressed to be an active family member. How can you be there for them if you aren’t even there for yourself?
It’s okay to say, “I’m having a bad day today, do you mind going without me?” or even “I really need to take a nap right now. Can you all manage?” It’s okay to do that. You have a disease. It’s okay not to be okay.
But it’s not okay to insist that you can still be “normal.” You can’t be. There is no more dangerous assumption for a celiac. Celiac disease will not go away if you pretend it isn’t there. On the contrary, it will only get worse. So can we all stop trying to be normal, whatever that is, especially in front of the people who love us the most? Can we all agree to do that? Admit that you can’t just dash into a store and grab something to eat, that you can’t take off for a road trip without any thought, that you have to take extra care about where you’re going and what you’re doing, and how you’re eating, and when you’re sleeping, and what kind of stress you are under. Admit when you need to rest, when you really can’t do one more thing. This is your reality now, and that’s okay, unless you refuse to accept it.
The only way to be well is to face this head-on and understand what it is, and make plans for it. You have to get up every day and think about where you’re going to be, and what you’re going to do, and whether or not you’ll be able to find clean, safe food. And if you think you might not be able to, then you need to pack a lunch for yourself, right along with the lunch you might have to pack every morning for your kids. Their health depends on your health, so you have to make yourself a priority.
As for your partner, in particular, whether it’s a spouse or boyfriend or girlfriend, that person deserves some great appreciation because loving someone with celiac disease does inhibit life in some ways. You can’t always be spontaneous and your partner has to be an understanding person. But people who really love you want to see you healthy.
And if this causes problems in your relationship? Then you need to work through it, or think seriously about your options. You didn’t choose this, and you can’t cure yourself, so if someone wants to be in your life, celiac disease has to be part of the relationship. You may not like that, but when everyone accepts it, you will feel a huge burden lifted from your shoulders. And then you can get on with more important things than hiding your symptoms or wasting energy telling everybody you’re “just fine.” I hope you never have to say that again.
If you are with someone who doesn’t accept you and isn’t understanding, the only thing I can say is that maybe you need to think about that relationship. I’m sure it causes you a lot of stress, and that’s not good for you. But if you aren’t honest with your partner, eventually resentment will build up on one of the ends, if not both. Or, you’re going to get worse. If your partner or spouse doesn’t want to live that way, you might have to be fine with that, but they should always respect the fact that you need to live this way. They don’t have to understand it completely. In fact, they won’t ever understand it completely because unless they have celiac disease, too, they simply can’t.
You can’t force people to understand, but do give them the chance to support you. You should absolutely discuss it and explain what you’re dealing with because that also educates people, and you never know who you might help with your words. But with a spouse or partner, don’t expect them to get it completely because that is impossible. What they can do is give you the support you need to take care of yourself. And if they won’t? It’s better to end a relationship in which neither party will compromise than it is to spend your life suffering needlessly.
As for kids, that’s a whole other universe. I don’t have children, so I’m not really qualified to say too much about it, but here’s the bottom line: if your child has celiac disease, whether you do or not, there is no question about doing what you need to do to get that child healthy again. No question. You just do it. Your house is pure. Gluten is off the menu. It doesn’t matter if other family members want to eat those things. They can do it on the outside. Your house is a safe zone, period. If you can get your child healthy before he or she reaches adulthood, you’ve given a huge gift and saved your child from years of anguish. So you do it, like a parent would do anything to rescue a child from suffering. If you need more support, there are many online forums and sites devoted to raising a child with celiac disease. I hope you will visit them. You’ll learn a lot, and once you’ve got more experience, you can help other parents newly struggling with their questions.
My biggest tip: try to eat together, and eat the same foods. No matter how tired I am at the end of the day, I come home and cook for my boyfriend every single night, and I make things that are delicious for both of us. I always involve him in what I’m doing, and he loves eating the way I eat because I make it delicious and fun. If you have kids, get them involved in shopping, meal planning, and cooking, too. It’s a great family activity, and you will be setting them up to be their own advocates in the future, with skills to feed themselves safely.
Dating with Celiac Disease
Maybe you’re still in the market for a partner and you’re wondering how you’re going to get somebody onboard with you and your celiac disease. A lot of single women, and even teenagers, ask me, “What about dating?” Of course, when you have celiac, dating is a whole different bag of tricks. How do you explain to someone you just met and are supposed to be having a casual, fun, get-to-know-each-other dinner that you really can’t eat anything and you really can’t drink very much? And if that person goes to kiss you? “Sorry, you were just eating gluten, your kiss could send me to the bathroom for days.” I remember going on one date and trying to explain, in my usual passionate way. We were at a restaurant, and I was talking about how I would need to order, and he said, “Well, maybe you shouldn’t talk about it as much as you talk about it. Maybe you should just try and live your life and not discuss it all the time. Get your mind off it. Stop thinking about it constantly.”
And I thought: Wow. Genius. I wish I could do that. What he didn’t get is that every meal could potentially be going to harm you, so, unfortunately, you have to think about it every day, every meal, pretty much all the time. Not only do you have to think about it, but you have to feel it. All the time. It’s tough, I’m not going to lie. I’m fortunate to be in a relationship right now with someone who is very understanding, but it took a long time to find him. You have to be so hyper-vigilant that if someone has been eating gluten and goes to kiss you, you have to say no. You can’t just let it happen. You have to be strong and let it be known when you need something or when you can’t do something, and that’s not easy to do, especially when you’re trying to make a good impression on someone new.
So, this is how I did it. Remember, this book, and my bakery, are called Jennifer’s Way because this was the way I chose. It may not be for everyone. First of all, my boyfriend and I were friends for years prior to being together, so there was a comfort level with him that I didn’t have with people I just met. That helped. But even with him, I was afraid to reveal everything right away. I think that’s fine, for awhile. It’s natural to be hesitant to show your vulnerability. God knows I have a problem with this!
But be honest. Tell the person you have celiac disease. You don’t have to go into all the details about diarrhea, and constipation, and neuropathy, and your legs giving out, or whatever your symptoms are. Nobody wants to hear that stuff. But I’m not telling you to lie. Just because you don’t go into the gory details doesn’t mean you can’t be honest and say, “Look, I have this disease, and sometimes I can’t do things other people do, so I want you to understand that up front.” I’m telling you to put your best foot forward, but not to accept a dinner date or a lunch date or some other situation that you know is going to create problems for you. Instead, simply say, “No, I have celiac disease, but let’s meet up in the park and go for a walk, or get a glass of wine, or a potato vodka, or a juice, or a soda.”
I also recommend knowing someone pretty well and trusting them before you give them too much of your personal history. If you give people too much, then the questions come rolling out, and they may be questions you don’t want to answer, or comments that will sting. I think I’ve heard them all: That I don’t eat because I’m on a diet, or I want to stay skinny, or I’m vain. That I don’t eat this or that, so I must not know how to have fun. That I should just eat the topping off the pizza or scrape the breading off the chicken.
It’s no way to live, so get to know the person for a few dates before you really go into it. Even then, you might have a hard time. Two of the girls working in my bakery right now are celiacs. One is a young girl trying to navigate the dating world. A guy dumped her because of it. He said, “You’re just not fun. You don’t want to go out.” She was recently diagnosed and she’s dealing with a lot. Sometimes, she doesn’t feel good. She can’t go to most restaurants and she can’t be carefree. And that’s devastating, especially when you are in your early twenties. That’s why there are dating sites for celiacs—another target for jokes that totally miss the point.
Being with someone who has celiac disease can be really hard. You can try to understand and be supportive, but you can’t feel what that person is feeling, and you can’t actually know what it’s like unless you have celiac disease, too. You can’t help that person you love, or save her, or fix him, and you can’t take the pain away. Some people can’t deal with that for very long.
It is what it is. I really do hope that if you are celiac, or you think you might be, and you are dealing with this disease that people don’t understand, that you will give them this book. Maybe they’ll read it and gain a new perspective on what you are going through.
So, with dating, you may need to try a few times. The first few relationships might not work out. Early on, maybe three or four months after my diagnosis, I told the person I was seeing everything, and when it ended, he admitted that it wasn’t fun to be with me. He said, “It’s hard to have to be so careful.” Damn right it is! That’s when I realized I didn’t want to be around him, either. I understand—it’s okay. It is hard to have to be so careful, and everyone has a right to an opinion.
But you also have a right to say good-bye. You deserve someone who has patience and compassion for your situation, even though he or she will never completely understand.
Dealing with Friends
Unfortunately, even your closest friends may not get it. Will you start to see who your real friends are and aren’t? Yes, I think you will. Celiac disease may cause you to lose some friends. I’ve found it very hard to maintain certain friendships. A few friends have been great and have tried to understand as much as possible. Some have seen me at my worst, and they get it a little more than the ones who haven’t seen how bad things can get. But there are always those others who don’t get it at all, no matter what they see.
When I was losing my eyelashes and hair, and my eyes were swelling shut, I remember saying to one of my girlfriends, “Do you see my eye starting to blow up? I can feel it. Do you see a rash?” I could actually feel the eyelashes coming out because my eyelid would tingle. I knew I was having an allergic reaction and I was frantically trying to figure out how to stop it. And I just wanted to be able to talk about it with a friend.
But this friend, who was a very old friend and knew all about my disease, just kept saying, “Oh Jennifer, it’s age. You’re just getting old. We all are.”
Age? I was so offended by that. So, this is all vanity? This is just me being shallow because I want eyelashes? And it bothers me that I’m losing my hair and my eyelashes because it means I’m getting old and I don’t look good anymore? Is that it? All I really wanted was for someone to listen to me and hear what I said. I didn’t need her to fix it or justify it or explain it away, because nobody can explain it away. I just wanted a witness, because sometimes even I don’t believe what’s happening to me. I just wanted someone to listen and witness what was happening.
You don’t have to lose friends with celiac disease, but you should definitely cultivate some new ones so you have people in your life who really, truly understand what you are going through. This is why I believe it is so important to reach out to the celiac community. We are all in the same boat, and we are all willing and wanting to express ourselves and help each other. If you are feeling isolated and alone, or even if you are just trying to figure out if you might have celiac disease, go on my blog at jennifersway.org. You will always find someone on there who will get it. Always.
Celiac Disease and Your Job
How celiac disease affects your job has a lot to do with what your job is. Some jobs are flexible, but getting sick frequently is going to be a problem at most jobs. As you know, I had a very hard time with this on my last job. Sometimes, the way employers handle someone who is frequently ill goes beyond a refusal to empathize. It can even be illegal. The Family and Medical Leave Act (FMLA) says employers with more than fifty employees must give you up to twelve weeks off in a twelve-month period if you are incapacitated by a serious health condition (or need to care for a family member with a serious health condition). However, there are a lot of ways employers can get around this law, including by proving that if you are gone too often, you are not eligible for the position.
It’s a difficult subject. Celiac disease isn’t on the list of conditions that qualify a person for Disability benefits (although some of the complications and associated conditions are, including extreme weight loss due to a “digestive disorder” and inflammatory bowel disease). There are ways to get around this too, but it can be complex and stressful, and you might need legal help.
For most celiacs, however, once gluten-free, symptoms are generally manageable except for flare-ups related to gluten-exposure or other issues caused by malnutrition. I’ve certainly been through periods where I couldn’t work, but after almost 20 years of being an actress, I can name three times that I was out due to illness. Those with flexible, understanding employers are the lucky ones. The best thing I can tell you to do is to be completely open with your employer, explain the situation, explain that you sometimes get ill because of the disease, but that you are doing your best to manage it.
And that brings me to another very important point: your responsibility, as a celiac.
Being a Good Employee (with Celiac Disease)
I am now on the other side of the employer/employee situation because I employ two celiacs as bakers. They both used to work in regular bakeries and were sick constantly. They came to me because they love baking, but they want to be in a safe environment and be able to taste the food they are making. They are both so happy to be in a place where they can actually eat what they are baking, and feel good about what they are putting into the finished product.
But I can’t say it hasn’t been frustrating when they get sick and can’t come in to work. One of them gets sick quite often. I understand, and I would like to think that I am a human being first and an employer second. This is what I hope I get from others, even though it hasn’t happened very often. Does the job need to get done? Yes, it absolutely does. But do you need to be a human being first? I say yes.
But I do have an important requirement. The only thing I require from my celiac employees is that they must be taking care of themselves. If you’re going to tell me that you went out to a carnival and the sign said “gluten-free zeppolis,” and you thought, “Hey, that sounds like a great idea, I’m going to eat some of those,” then I’m sorry, but I’m not interested that you got sick the next day. You still have to show up for work. If you are taking risks and chances, then you have to pay the price for that and I can’t help you. It is your responsibility as an employee (not to mention your responsibility to yourself and your own health and well being) to nurture your health, take care of yourself, and not do stupid things like eating carnival food or anything else you’re not sure about. If something happens by accident, that’s one thing. If you’re doing everything you can to be as healthy as you can be, then I will be understanding.
I strive to be healthy every day. I watch everything I eat. I do everything I can to get enough rest, I try to meditate every day, and I really work to keep stress at bay. And that’s what I expect from my employees. It’s what your boss has every right to expect from you. Not to be perfect, but to be diligent and vigilant about your health. If you want to have a job, then this is part of it. Full disclosure, and making sure you eat really clean. If you want people to understand, you have to meet them halfway.
Restorative Exercise
That first year after my diagnosis, I could barely exercise, but what I could do was take my bottle of Xanax and drag myself down to a yoga studio right under where I lived. They had a restorative yoga class, and I would get into a completely supported position with bolsters and blankets that let me relax while opening my chest, and I would just lie there and try to breathe. This was one of the few times I felt real relief, because my chest, gut, and pelvis could open and truly let go in that supportive position. It was such a relief to get air into the deeper places in my lungs, which was hard when I was walking around or sitting because I was so inflamed.
You can do this at home with yoga bolsters, or just with pillows and cushions. Prop yourself up with cushions under your hips, back, and chest, so you are reclined but still sitting upright, at least at a forty-five-degree angle, in a way that you don’t have to hold any part of yourself up. Let your arms rest out to the sides on pillows, and cross your legs loosely with pillows under your knees. Then, let gravity take over. Relax and let your chest and pelvis fall open. A wonderful book to take a look at: Yoga as Medicine, by Timothy McCall, MD.
Once you start feeling better, you might want to try a gentle yoga class, or just start walking, at whatever pace you can, for just long enough that it feels rejuvenating and not exhausting. Work up from there, at your own pace. Exercise is good for you, but keeping stress low and your energy up are the most important things at first. Mild to moderate exercise will improve your energy, but pushing yourself too far will only deplete you. Stay tuned-in to how you feel and give your body what it needs.
Rebounding (jumping on a mini-trampoline) is another great exercise. It strengthens your muscles gently, improves your circulation, exercises your heart and lungs, helps your body detox, strengthens your organs…and it’s fun! It’s also extremely beneficial for your lymphatic system, which runs mostly vertically through your body, and helps balance and vitalize your immune system and detoxify your body of viruses, infections, heavy metals, and other waste, so you can continue to heal. Mini-trampolines are inexpensive and fold up for storage, so they won’t take up a lot of room in your house, and jumping on them will remind you of when you were a kid.
About Your Attitude
You have been on a difficult path. You’ve suffered a lot, in a way totally unique to you. Nobody’s experience exactly replicates yours, and sometimes you feel very alone. But now, you have knowledge you didn’t have before because you are learning more about celiac disease and your own body every day.
Whether or not you know for sure that you have celiac disease right now, I’m betting that you are on a journey to feeling better. And once you’ve gotten off gluten (and I hope, dairy) and started to take care of yourself and listen to your body and give yourself what you need, things will begin turning around. You can start healing yourself right now, and you are the only one who can do this, so it’s up to you. Speak up for yourself. Get what you need. Eat what will heal you, rather than hurt you. Be patient with yourself, and don’t beat yourself up for not healing fast enough, or doing well enough, or “handling it.” And, most importantly, remember that no matter how hard it is, how often people don’t understand, how hurt you feel, you are not alone. Get online and find us. We’re out there.
As I leave you to go about your life, I hope you will come back to this book, and my web site, often. For hope, for encouragement, and for ideas. You can trust me not to look on some non-existent bright side or make clever jokes. All I want is for you to know what you’re dealing with so you can get on with your new normal. The truth will lead you down a better road, and I believe in the truth.
Finally, you need to honor how you feel. This disease can affect your mood, your brain chemistry, your outlook, everything about you. When I get down, I get mad at myself, but that’s useless. Many times, a poor mood is an absolute physical response, and it’s not your fault. Why make it worse for yourself by beating yourself up about it? I say this, even though I do it myself. We must be kinder to ourselves! I know, at least for me, when I start to balance my blood work and nutrients, and start taking my vitamin D regularly, my mood lifts. Things start to look bright, and it makes me realize just how dramatic an effect this disease can have on my mood. This still happens to me. For the last few months, I felt like I was wearing a thousand-pound, wet tarp on my spirit, my personality, and my outlook. It’s been horrible. But all I had to do was start taking care of myself again, with vigilance, and that tarp began to roll off.
So, I hope you can go forward every day and just value how you feel, and let that be what it is. You don’t have to ignore it or make a joke out of it. Just let it be. Just explain it, if you need to. Say, “I’m not having a great day, I’m not. I try my hardest, and right now, it’s not good enough, and I’m having a bad day.” And let it be.
I had a great acting teacher in school, and he used to say that when you’re in a scene and you’re nervous, and you’re feeling a certain way, that if you try not to feel that way, if you try to feel another way, like how you think the character would feel, you throw everything off. You are not present when you try to feel something different than what you actually feel
I remember thinking how interesting this was, and I took that idea through life. When you’re not focused on what you are doing in the moment, when you are too focused on trying to be some certain way, or not to be some certain way, then you miss the whole moment. You miss it all. I have stopped trying to be what I wanted to be or what I thought I should be. I have stopped trying to look like how I think I should look. I embrace what is. Some days, it’s shitty. Some days, it’s glorious. But every day, every moment, it is what it is.
If you know what you have, and you know who you are, and you respect how you feel, and you live in tune with your body, and you stand up for yourself and give yourself what you need, then even though today may be bad, the next day will be better.
I leave you with this final wish: that you live in the moment, not of what you believe the moment should be but of what it actually is. That you are who you are, and that you let yourself feel what you feel. That you find your way. This is how you will finally get to your new normal, no matter what disease you might have, and learn to live again.
Be Well,
Jennifer Esposito