A few months ago, I was in a local health food store and saw a sad but familiar sight: a woman with an utterly bewildered expression standing in the gluten-free aisle. I asked her if I could help her find something, and she said, “I don’t know! The doctor told me today that I have celiac disease and that I’m never going to be able to eat pizza again! What do I do?”

Many chronic illnesses require lifestyle adjustment, but the ones that affect what we can eat really hit us where we live. When we don’t feel well and are out of spoons, all we want to do is chow down on comfort food and escape for awhile. Then, when we are told we can no longer eat what we please, the future seems very gloomy. But this is NOT the end of the world.

Over the past 14 years, I have developed not one but several ailments that affect my diet. First, there is Sjogren’s syndrome, which causes dryness of my mouth, throat and bowels. If I eat something that is not moist, like overcooked meat, it can get caught. I have nearly choked to death twice. Next, I have gastroparesis, which is paralysis of the stomach muscles. I was initially told I’d be on nothing but baby food and rice for the rest of my life. That turned out to be a bit of an exaggeration, but I do have to eat easy-to-digest foods at certain times of the day and must be on a liquid diet for part of each day. Third, there is celiac disease, the only treatment for which is complete avoidance of wheat, rye, barley and oats. Fourth is my diabetes, which requires small meals at regular intervals containing a certain amount of protein and carbohydrates. I also have gastroesophageal reflux disease, which I attempt to manage by limiting certain spicy or acidic foods and avoiding others altogether. Foods containing MSG or aspartame give me migraines, so I don’t eat them. And if all that weren’t enough, last month I found out that my eight-year gastroparesis diet, which is low fiber, was beginning to have serious bowel consequences, so somehow I must figure out how to increase my fiber intake without jeopardizing my ability to get it past my non-working stomach. Handling all this simultaneously is a bit like juggling knives while riding a unicycle on a tightrope with no net, but I do manage it, every day. Food is one of my favorite things in the world. I survive, and so can just about anyone on a medically necessary diet.

When the doctor diagnoses you with a disease that is helped by altering what you eat, fight the urge to panic. Instead, take a deep breath. Focus on exactly what the doctor is telling you. Sometimes, the reality of dietary change is a lot less of a disaster than what our imaginations can dream up. If your particular ailment is something you’ve never heard of, ask the doctor to write it down for you. Find out if there are any handouts or brochures in the office that you can take home with you. See if there are any websites the doctor recommends that you can visit to learn more.

If you have a complex ailment or a combination of illnesses that require special diets, inquire about nutritional counseling. Many health care plans cover courses for diabetics if your doctor refers you. In some cases, you can get one-on-one time with a dietitian. Even one session can be beneficial, as I discovered when I visited with one last month.

When you look up your illness on the internet, start with doctor-recommended websites only. If you simply type the name of your ailment into a search engine, you risk not only information overload, but data that might be incorrect and/or very harmful. If your medical problem is known to be incurable, steer clear of any website that claims otherwise as it is very likely a scam. In the absence of a recommendation from your doctor, begin with sites from reliable sources such as the Mayo Clinic or the National Institutes of Health. Should you find yourself getting confused or overwhelmed, shut off the computer and regroup, perhaps calling your doctor with any questions you might have.

Before you begin shopping for food, make some notes. Focus on what you CAN eat rather than what you can’t.  You might think at first that there is nothing good, a very common reaction, particularly if your new diet is very restricted, but if you start writing down foods you know to be safe you may be surprised how much there is available. What are your favorites? If they don’t violate your restrictions, by all means keep buying them. If your favorites are no longer allowed, see if you can modify them slightly to make them safe for you. For instance, if you love pizza but have celiac disease, you can buy gluten-free pizza dough mixes, pre-made frozen crusts, whole frozen pizzas, or even delivery pizza in certain locations.

Will you need to shop at a specialty store? Perhaps not, depending on your restrictions. Try visiting your regular grocery store first. Many now carry organic foods and have either separate health food sections or specialty products mixed into the regular aisles. Some will put color-coded labels for gluten-free, low sodium or other special designation on their shelves to make them easier to find. I buy the majority of my food at the grocery store because it is cheaper (or, rather, my husband does as I don’t have enough energy to shop most of the time), and I visit the health food market perhaps once a month for a few items the grocery store doesn’t carry. If you live in a remote area with no access to specialty foods, you can often find what you need online and have it shipped to your home. 

One thing to be said in favor of health food stores is that you can often get help deciding what to try. Most of the specialty stores I have frequented have employees that are knowledgeable about the products they carry. They may even be on restricted diets themselves, or have at least tried items in the store. 

With some diets, the type of food is not in question but rather the portion size, what you eat it with, the time of day you eat it or how often it is eaten. If you are not in the habit of reading labels, take a look at some of the food already in your home to get a general idea of where it falls within your guidelines. For those who need to track portion size and/or intake of contents like fiber, protein, carbohydrates, fat, etc. I highly recommend acquiring a digital food scale. Some foods can be deceptive; one serving of pasta, for example, is much smaller before cooking than after. Diabetics can keep much better control over their glucose levels when they know precisely how much they are eating. Keeping a food diary or list of glucose levels will also help you stay on track. You may find that some foods are unacceptable in large quantities but are okay in small bits. For instance, I should not eat an entire candy bar in one sitting, but I can get away with a daily square of extra dark chocolate, approximately one-quarter of a serving, and I find it satisfies my craving for sweets without elevating my glucose levels or activating my reflux.

When you begin your new diet, keep it simple at first: broiled plain meats, fresh fruits and veggies, plain rice, or whatever is appropriate for your condition. Do this for a few weeks while you get acclimated. If you can avoid restaurant and special occasion food during that time, it might be easier. It is said that it takes at least two weeks of adherence to a new way of eating for it to start becoming a habit. You may get frustrated and grumpy while you are learning, which is normal, but you will gradually gain confidence if you stick with it. Should you make a mistake, don’t let it be an excuse to give up. Make your very next meal a good one. Once you’ve gotten the hang of it, then start looking into eating out, trying new recipes, etc.

If you have a partner and/or kids at home, should they change their diets too? It would save you spoons if you only have to cook a single meal for everyone, and if you have a food allergy, you definitely would have to declare the kitchen an allergen-free zone. Certain diseases, like diabetes and celiac disease, tend to run in families, so your children may be healthier eating as you do. But if what you can eat is extremely restrictive, having the whole family change might be an unreasonable expectation for them. In that case, perhaps your partner would be willing to cook “normal” food for everyone else to save you spoons. My husband prepares his own meals most of the time, and once or twice a week, I make something we both can eat with enough leftovers for a few days.

When you are ready to venture out into the wonderful world of restaurant food, keep in mind that some places may be more likely than others to accommodate you. If you know ahead of time where you will be going, see if they have a website containing nutritional information or ingredient lists. Some have special menus or charts listing allergen information, which is very handy. Take their information with you. If the restaurant takes reservations, when you call them, mention that you are on a medically necessary diet. You may want to talk to the manager and/or chef ahead of time so that they can make appropriate arrangements. Some chain restaurants use prepackaged food, and the staff may have no idea what’s actually in it. If this is the case, you might be better off avoiding the restaurant, or, if it’s a special group occasion, eat ahead of time and just sip on a safe drink during the meal and socialize. You may find that restaurants that use all natural ingredients prepared fresh daily are a better choice. An example would be Indian food for a person with celiac disease as most of the sauces are gluten free which means a larger selection of safe meal choices than a sandwich place. When dining out, portion sizes tend to be rather large, so you might consider sharing with someone else or taking some of your meal home with you. If a restaurant does a good job accommodating you, be sure to express your gratitude and remember to tip well.

In certain social situations like church potlucks and parties at someone else’s home, unless you have been assured ahead of time that there will be something safe to eat, you will probably want to take responsibility for your own meal. Bring a dish to share that you know you can have, or just bring enough for yourself if your diet is very restrictive. Even if you’re pretty sure you’ll be fed, carry something with you just in case. There have been occasions where there was so much going on at an event that the host forgot to make anything safe for me, so I was able to grab a protein bar from my purse and keep my glucose levels stable until time to go home.

Another situation where you may want to bring your own food is when you are traveling. Airports don’t typically have a lot of specialty food choices, and even if you ate before you left the house, there is always the possibility your flight might be delayed several hours or get cancelled. You may even find yourself stuck for a few hours in an airplane waiting to take off. On long flights, you might be able to request a special meal, but a backup is still a good idea. A few years ago, I was on an eight-hour flight to Hawaii, and the gluten-free meal I was supposed to get wasn’t there. I was given a chicken breast sitting on a pile of whole wheat pasta, and when I explained to the flight attendant that I couldn’t eat that, she shrugged and walked away. I ended up eating a bag of corn chips that came with my husband’s sandwich, and I never again traveled without my own stash of food. To make it easier to get through security, bring a note from your doctor with you stating your medical condition.

For those of you diagnosed with an actual food allergy, obtain and fill a prescription for an Epi-pen. Take it with you EVERY place you may come into contact with food. Better to have it available and not need it than to risk a potentially life-threatening situation.

A medically required diet may result in some health benefits, depending on the condition and what choices you make. If you can no longer order from the fast food drive through, you might lose out on some convenience, but you may also be gaining an opportunity to replace it with more nutritious items. For instance, a diabetic who avoids processed products and switches to frequent small meals consisting of lean proteins, fresh fruits and vegetables and whole grains may end up needing less medication than someone who continues to eat the typical American diet. Less medication means less of a burden on the kidneys and liver. Heart disease and high cholesterol may become less of a factor. You could achieve a healthy weight range. Your energy levels could become more consistent or even increase. Think about what you have to gain the next time you find yourself craving your old diet.

You may also find your diet to be an excellent opportunity to try foods that are new to you. Since 2003, I have incorporated into my diet foods containing the whole grains teff, amaranth, flax seed, quinoa and buckwheat (which despite the name does NOT contain wheat). I was also surprised to discover that I like Greek yogurt, soy milk, and tofu made into stir fry or chili. Trying out new allowed foods and being creative will make your diet seem less of a chore and more of an adventure.

If your diet must be so restricted that nutrition is of concern (gastroparesis can be an example of this), you might benefit from supplementation. But please check with your doctor before trying anything, even a generic over-the-counter multi-vitamin. It is important to make sure you don’t take something that might interfere with your prescription medications or exacerbate your illness.

Do not let well-meaning friends or relatives tempt you into eating something you know you shouldn’t. At some point, you will probably hear something similar to the following: “Just this once!” “But it’s a holiday/wedding/birthday!” “Come on, one little bite won’t kill you!” Some people might mistakenly think your new diet is a fad or that you are just being picky. Sure, your condition might allow an occasional indulgence, but it can be easy to let one indulgence lead to several, and that could undo any progress you might have been making. For instance, a person with celiac disease who has some gluten-filled cake at a party might not end up in the emergency room, but they could end up too ill to leave their home for multiple days afterward and damage their intestines, which could take months to heal. Consider the possible consequences of cheating on your diet before you go back for seconds on Thanksgiving or before you reach for a food your doctor has warned you against.

Here are some links to websites and pages I have found useful:

http://digestive.niddk.nih.gov/index.htm   The National Digestive Diseases Information Clearinghouse. Part of the National Institutes of Health. http://gicare.com/Diets/diets-main.aspx   Jackson Siegelbaum Gastroenterology’s list of 37 specific diets. Their gastroparesis diet has been recommended to me by three different doctors. http://www.celiac.com/   Celiac.com has helpful and informative articles, a monthly e-mail newsletter, recipes, a message board, lists of safe and unsafe foods, and an online mall where you can order gluten-free products. http://www.livingwithout.com/   Living Without, the magazine for people with allergies and food sensitivities. Recipes, articles and tips. http://www.wehealnewyork.org/healthinfo/dietaryfiber/fibercontentchart.html   A list of the average fiber content of various food, in alphabetical order. http://www.food.com/recipes/diabetic  Diabetic recipes via the Food.com website.

Medically necessary diets may not initially be our idea of a good time, but they are definitely doable.
 

Article written by staff writer, Karen Brauer

Karen Brauer is a happily married woman in her forties living in a little house on the prairie. Her passions include: photography; classic and some modern literature; classic, foreign and some modern film; and music of all kinds. Her blog is called “browser life”: http://browserlife.blogspot.com/