Newly diagnosed? Caring for the new celiac you

by Seguin on 11/01/2011

The first weeks after being diagnosed with celiac disease are intense. There’s often some combination of confusion (What’s gluten?), emotional relief (I’m not crazy! I don’t need surgery!), hope (I can feel better?) and sadness (I can’t eat anything anymore).

Keep in mind whenever you can that you will feel better soon, if you can completely avoid eating gluten.

Most people with celiac disease feel better within a week of taking gluten out of their diets. When I was diagnosed in 2003, I felt significantly better within thirty-six hours of my diagnosis, and after a month of gluten-free living I had more energy than I had ever had in my life. Activities which had been impossibly exhausting became easy. I have heard of many similar experiences. It’s important to keep this in mind, because making effort now to eat nutritious gluten-free foods can make everything feel easier in the near future.

Yet, despite the obvious benefits following a completely gluten-free diet is demanding and can be stressful. No matter what the circumstances of your life, going gluten-free changes your daily routines, relationship with food and social life.

So how can you stay sane?

Change what you can, grieve what you can’t, and be grateful for what you’ve got.

Being a sane and joyful celiac depends on being organized and planning whenever possible, and being flexible when that’s not enough. Each of us develops our ways that suit our preferences and circumstances. First learn the basics and then, as you feel better and learn more, you can fine-tune your gluten-free living.

What you can change:

Change your kitchen. To become a healthy gluten-free celiac, your kitchen must have food that you really enjoy.

If at all possible make your whole kitchen a gluten-free zone. This means you won’t have to worry about gluten contaminating your food at home and it also gives you a safe place to relax the necessary vigilance that being a healthy celiac requires.

If you share your kitchen, and your family or housemates have not accepted your diagnosis yet or they insist that they must have gluten foods in the house, make sure your food is not cross-contaminated and that food you can safely eat and that you like is plentiful and visible to you.

Why? Because constantly having to resist temptation is exhausting and tends to increase feelings of resentment. Celiacs deal with enough temptation in a world that can look like giant pastry shop. For someone newly diagnosed it can be especially difficult, so experiment with making home a sanctuary where no food is suspect or forbidden for the house celiac.

If possible, give yourself a gluten-free haven at home.

Change your habits.

Joyful celiacs tend to be organized, and they know how to cook for themselves and others. I’ll come back to the cooking skills in a minute.

First, figure out how to eat and don’t run out of your staple foods.

Always have a plan for how you’re going to eat before you leave the house. Bring a snack or a picnic with you everywhere. Being hungry tends to lead to taking risks that can lead to gluten exposure.

I know if I’m already hungry and there’s something delicious-looking that’s probably gluten-free, it’s a lot more likely that I’m going to gamble. If I have a bag of gluten-free nuts with me or a yummy picnic, I won’t even be looking at a menu or pre-packaged meal and wondering if it’s safe.

If you’re invited to a social gathering, bring food for yourself and enough to share.

Now, regarding cooking. If you’re someone who primarily eats in restaurants or eats frozen meals most days, if you don’t own a sharp knife (or know how sharp your knives are) and you don’t have at least one well-seasoned pan, then this is going to be your opportunity to learn to cook. Being confident in the kitchen is the key to your health and happiness for the rest of your life.

Why? Because if you don’t make it yourself, you don’t know what’s in your food. You will eat out again. More people are asking for gluten-free options and restaurants across the US have been responding. However, many places aren’t as careful or aware as celiac patients need them to be. If you depend on restaurants or packaged foods for most of your meals, it’s very likely that even if the restaurant is using gluten-free ingredients, you are getting exposed to gluten through cross-contamination in the kitchen. Cross-contamination is pretty difficult to avoid.

I eat out sometimes and have a short list of restaurants where they have very clean kitchen practices, have either gluten free kitchens or at least an alternative gluten-free menu, know what celiac disease is, and know me. I assume that I getting some small gluten-exposure whenever I eat anywhere where they use gluten ingredients and I don’t go to restaurants very often. You may decide you’re willing to risk greater exposure than I am right now, but depending on restaurants is still pretty limiting. Being able to make food that really excites you can help prevent your feeling deprived or victimized by wheat-centric world.

Learning to love to cook is empowering. I’ll be writing more about ways to start cooking, and adding links and tips. Think knife skills.

Change your communication skills.

No one can take care of you except you. Help other people help you.

Should this be difficult for you, learn and practice ways of communicating clearly to others what celiac disease is, what gluten is, and what foods you can eat.

If your feelings and reactions are getting in the way being able to access gluten-free food or talk with family and friends, get emotional support from people you trust and find local resources on the internet. If you’re stuck, write to me.

Grieve what’s lost.

If you must have a life-threatening chronic illness, celiac disease is the best one I can think of. Many of us have complications due to late diagnosis or co-existing conditions, but as inherited diseases go, celiac disease is comparatively good. No drugs, no surgery, no side-effects. We simply avoid ingesting a particular protein. Of course, the problem is that the protein is embedded in much of the world’s food.

Following a gluten-free diet results in small annoyances, minor sadnesses, and wistful longings for particular foods. Certain kinds of convenience and many forms of gratification are now things of the past. Most people have favorite remembered foods, and many of these are tied to a nostalgia places and people. I won’t list the mourned foods. We all know them and we see them daily. Travel, domestic and international, becomes complicated.

There’s bigger grief, too. Being diagnosed with celiac disease and adhering to a strict gluten-free diet brings up painful emotions. Eating is at the center of social relationships and sharing food is part of connectedness. Sometimes being unable to eat the same food as other people can feel like being cut off from love.

People describe feeling afraid they will be disbelieved or that others will be repulsed by their needing a special diet. Sometimes these things do happen. Eating in restaurants or at other people’s homes where one might accidentally eat gluten may provoke intense anxiety. There are dreams and nightmares about food.

Frequently celiacs express a sense of being singled out for deprivation. These kinds of feelings can evoke unexpected issues or old feelings of abandonment, rejection, or poor self-regard. This can be particularly rough for those who have other serious illnesses or chronic pain in addition to celiac disease.

Let yourself feel what is true for you. We carry many assumptions about who we ought to be or what we ought to feel. Being diagnosed with celiac disease may require developing more acceptance and compassion for ourselves, and when we can find open-heartedness toward ourselves, it tends to benefit everyone in our lives. Letting yourself feel what is actually happening for you doesn’t have to mean drowning in anguish. When we feel them and let them move, emotions come and go, rarely sticking around that long. Unacknowledged pain and the unfelt grief can develop into more lasting depression. Letting yourself feel grief, minor sadness and deep loss, might mean taking time in a quiet place, talking with a trusted person, free-writing, or just letting yourself cry when you need to.

Be grateful for what you’ve got. Focus on what you can eat.

People unfamiliar with celiac disease and the existence of gluten, are often shocked by the restrictiveness of a gluten-free diet. They often respond, “But what do you eat? You can’t eat anything!”

While it seems this way at first, it’s so far from true. Gluten-Free Girl and The Chef, Gluten-Free Mommy, and Simply Gluten-Free, are just a few the hundreds of resources displaying the diversity of gluten-free food that it is possible to make at home. It’s true that I can’t eat much in the average airport, at most restaurants or at work gatherings. But that doesn’t stop me from enjoying every meal.

I have lived gluten-free since 2003 and I love food. I cook, my partner cooks gluten-free too, and we eat well. For example, last night we ate sautéed Japanese eggplant with a miso sauce, wilted ginger-dressed spinach and grilled salmon. That’s a typical, and typically delicious, dinner for us. I eat a lot of colorful kale-based salads, omelettes, berry-topped nut crumbles and innumerable iterations of seasonal stir-fry. For days when I don’t make time to cook, I have ingredients on hand for assembling satisfying quick meals that don’t require much preparation.

When you cook at home you can enjoy your ingredients and appreciate all the incredible food that is naturally gluten-free. Some things I always keep in the house: fresh ginger, cinnamon, coconut flakes, many kinds of seaweed, almond butter, gluten-free miso, dinosaur kale, canned crushed tomatoes, coconut oil, butter, nut flours, sea salt, frozen berries, fresh vegetables, and eggs.

Focus on what you can eat.

Grow your experience of gratitude.

Noticing what we do have, what is working, what doesn’t hurt, and what we can eat changes our experience. Gratitude lists draw our attention to the positive things in our lives and this actually makes improves mood. People who intentionally cultivate gratitude feel happier. Daily exercises involving noting neutral and positive experiences, in addition to negative personal events, are central to effective mindfulness-based cognitive therapies for depression and chronic emotional dysregulation. (See the Resources page for research citations, more information on mindfulness skills.)

Some people have an easy time noticing what they’re grateful for and they enjoy writing down their positive thoughts and experiences, other people find it artificial and annoying.

Try keeping a gratitude list of at least five things per day, for a month. Consider making a commitment to doing every day for a month whether you want to or not, as an extra support while adjust to your celiac disease diagnosis.

Some people post their lists for select people on Facebook, or give them to friends.
Writing your list down and giving it others may encourage yourself to keep looking for things to appreciate, but you don’t have to do either. The important thing that you’re willing to notice your daily experiences, to feel something different or not, and to look for even small things that promote neutral to positive feelings. Writing them done helps make positive things more visible, so I suggest actually writing your lists and keeping them in one place if possible. Can’t imagine what to be grateful for right now? When you’re feeling stuck Google “gratitude list” and you’ll find other people sharing their gratitude lists.

I’ve heard from people who felt grumpy and resistant to writing gratitude lists when they started, but experienced real changes in their mood and outlook. People have told me they were amazed by the improvement because they’d actively disparaged the exercise as silly or a waste of time while they doing it! The same people who were initially annoyed by practicing gratitude later reported feeling more connected to other people, less anxious and less irritable after making a daily list for several weeks.

Here’s the recap:

1) Make your kitchen, or some part of it, a well-stocked safe gluten-free haven.

2) Make a plan for how to eat reliably gluten-free food whenever you leave your house.

3) Make a plan to improve your cooking skills.

4) Practice communicating clearly to others about what celiac disease and gluten are.

5) It’s normal to feel loss and grief about having celiac disease and the many changes it requires.

6) Let yourself feel. If this is overwhelming, talk to trusted people, find a therapist or email me.

7) Grow gratitude. Notice what is working, everything that feels and tastes good during your day, and appreciate others. Write down five things a day that your grateful for the next month.

Change what you can, grieve what you can’t, and be grateful for what you’ve got.

Previous post:

Next post: