Being diagnosed with celiac disease is daunting in so many ways. Maybe you will be glad, or feel relieved. But then the questions start. You will have many, many questions about your health, and every time something goes wrong, you will wonder if it’s related to celiac disease. (Chances are, it will be.)
You might also be angry. Crying, screaming, feeling like wailing “Why me!” is all okay. I feel like people always try to look at the bright side of situations, and while this is great and can be quite useful, you also must be allowed to feel your feelings first, without thinking you have to edit yourself or put a brave face on. You need to be kind to yourself, and that might involve letting yourself get angry so you can get it out of your system. You’ve come through a difficult time and you have a hard road ahead, so give yourself a break. If you want to be angry, be angry! If you want to be sad, be sad. If you want to mourn for your past life, before you knew you had an incurable disease, or for the days when you could eat cookies and bread and pasta without giving it a second thought (not knowing it was hurting you), then do that without shame. The simple fact is that this disease stinks and you are allowed to think so.
But there is another side to this: I also want you to recognize that your life is not over. You may never be “normal” again, the way you once thought of “normal,” but you can find a new normal. There is a life out there for you that is perfectly normal, for you. You need to make a shift, and that can be painful, but once you do it, you can find peace again. Until then, however, life doesn’t stop. You’ve got a major adjustment period ahead, and it will affect not just the foods you eat and the products you use, but everything about your life. It will affect your family, your friends, your schedule, and your social life. It will affect your work and your leisure time, and it will affect how you think about things on the most basic level. But let me repeat: Life isn’t over. It’s just going to change. A little bit or a lot, depending on you, but change is happening.
Your doctor may not tell you about the detox period, which may be mild for some and harsh for others—it was certainly harsh for me. Your body was used to limping along on gluten, and gluten is addictive. It releases opium-like chemicals in your body so you want to keep eating it. Giving it up is not only hard, but painful. Plus, your body is healing and you still aren’t nourished enough, so when you shift the balance by getting rid of gluten, there will be physical protest. When my sister told me that she almost felt better eating gluten than she did not eating gluten, I understood that, and you might understand it, too. But don’t give up! You have to get through the detox. Eventually, your brain will clear up, your stomach will settle, and you’ll realize how people are supposed to feel when they are healthy. But you have to be patient. It’s going to take some time to get there, and the best thing you can do for yourself is to nourish and support your body through this crisis.
You’ll have an emotional adjustment, too. There’s no going back to the way you believed you were before your diagnosis. And that’s okay. In fact, it’s good, because eventually, you’re going to start feeling better. Not today, maybe not tomorrow, but it will happen, if you do what you need to do to help your body heal. This chapter will give you the tools you need.
So let’s talk about that. What do you do now? The next order of business is to transform your kitchen into a safe haven. It’s time to get the poison out.
Your Kitchen Makeover
It’s time to get gluten out of your kitchen, completely. If you share a kitchen with gluten-eaters, you will need your own part of the kitchen. Ideally, you would have your own refrigerator, but this can be difficult in many situations. Maybe you can get a small one. If you are the cook in the house, then you can keep your kitchen gluten-free and let your family get their gluten on the outside. This is no time to be selfless. Your own kitchen should be the one place where you are guaranteed no cross-contamination. Remember, just 1/8 of a teaspoon of gluten-containing food can destroy the villi in your small intestine and make you very ill. If you live with your family, your life will be much easier if everyone goes gluten-free.
This isn’t as difficult as it sounds. There are good gluten-free versions of things like bread and pasta that you can make for your kids, and there are plenty of great foods you can cook with no gluten. It’s just that we’re a very gluten-intensive society, so right now, you probably have a lot of gluten-containing foods in your kitchen. It’s time for them to go.
Get a garbage bag, enlist some help if you can, and start purging. Here is what to toss (or give to a local food bank):
1. Anything containing wheat: bread, pasta, pizza crust, flour tortillas, bagels, English muffins, breakfast cereal, doughnuts, crackers, pretzels, matzo, cookies, muffins, cupcakes, cake—pretty much all snack foods, baked foods, and pastries, and most frozen meals, from diet frozen dinners to microwave burritos and frozen pizza. This is probably going to be your biggest category. While you’re at it, throw away the magnet on your refrigerator with the number of the pizza delivery guy. It’s time to part ways.
2. Anything containing barley. Sorry, but that includes beer.
3. Anything containing rye.
4. Anything containing “cousins” of wheat: einkorn, emmer, spelt, kamut, and triticale.
5. Anything labeled “multi-grain.”
6. Anything containing oats or oatmeal. All conventional oats (unless certified gluten-free) are contaminated with gluten during processing.
7. Anything containing wheat starch, wheat bran, wheat germ, cracked wheat, or hydrolyzed wheat protein.
8. Anything containing carrageenan. Carrageenan doesn’t contain gluten, but for people with compromised gut issues, it can cause gastrointestinal distress.
9. Pet food. If you handle it or your pet licks you after eating, this could affect you. Look for a gluten-free variety of pet food. Your pets don’t need gluten. It’s just a filler.
Other weird foods you wouldn’t think would contain gluten, but do:
Breading and anything with breading, including panko and cornmeal breading (which usually has a base of wheat flour)
Brown rice syrup
Bouillon cubes
Candy and chewing gum, many types (like red licorice, malted milk balls, and many candy bars)
Canned baked beans
Canned soup and soup packets
Cheese spread or any processed cheese
Chocolate (some types may be gluten-free, but many types contain traces of wheat, so beware)
Chocolate syrup
Coloring, unnamed flavoring agents, fillers, thickeners, and extenders, including malts, starches, and dextrates. That includes anything containing: dextrin or any derivative like maltodextrin (usually from corn, but could be from wheat), hydrolyzed plant protein (HPP), hydrolyzed vegetable protein (HVP), texturized vegetable protein (TVP).
Creamed and sauced foods
Flavored tofu (plain tofu is okay if you can eat soy)
French fries (often dipped in batter before they are fried)
Fried foods (Even if they don’t contain gluten, how do you know that the oil in which they were fried didn’t first fry something in gluten?)
Frosting or icing
Gravy and most sauces
Ice cream and frozen yogurt, many flavors
Imitation crab sticks
Ketchup, mustard, and mayonnaise
Malt vinegar
Marinade
Nut and snack mixes with seasoning
Pickles
Rice mixes with seasoning and sauce
Salad dressing
Sausage and cold cuts, like salami, bologna, and hot dogs
Seasoned or sauced frozen or canned vegetables
Soup stock
Soy sauce
Sushi rice (usually contains wheat starch)
Syrup (pure, real maple syrup is okay for you, but not the fake stuff)
Tea bags (they are sometimes sealed with wheat starch!)
Tortilla chips, taco chips, or flavored potato chips with seasoning
Turkey if it is self-basting or injected with any seasoning
Veggie “meats” like veggie burgers, veggie hot dogs, and veggie nuggets (these often use wheat gluten because it has a chewy consistency that resembles meat)
Worcestershire sauce
If you aren’t sure about something, read the label. If you still aren’t sure, toss it. It’s not worth the risk. Remember that “wheat-free” does not mean “gluten-free” because there are non-wheat sources of gluten. Wheat has gluten, but a lot of things have gluten that don’t have wheat. If you want to get well and heal your villi so you can start digesting food and absorbing nutrients again, you can’t play it fast and loose here. You’ve got to be strict and puritanical about this, even when people think you are being obnoxious or picky or overreacting. You are not overreacting when it comes to avoiding gluten. Let me repeat this because I want you to know it and believe it: You cannot overreact when it comes to avoiding gluten. Other people won’t always understand, but you need to be an advocate for yourself so you can heal and feel well again. When in doubt, throw it out.
Now, what about your cooking tools and surfaces? Scrub everything down, and if you can, give away pots and pans and start fresh with cooking appliances and tools that have never touched gluten. If you can’t do this right now, just clean them extremely well. Toasters are cheap, and I highly recommend getting rid of your toaster and buying a new one that will never touch gluten, because it’s almost impossible to clean all the gluten out of a used toaster (if you’re sharing a space with someone who eats gluten, keep two toasters). I also recommend a fresh set of baking equipment. Cookie sheets, baking pans, muffin tins, and wooden spoons are cheap at discount stores.
After this little exercise, you may find that your refrigerator and cupboards are pretty bare. That’s what happened to me. I sat in my empty kitchen with the bare cupboards practically echoing and wondered what the heck I was going to eat. Just hold on, we’ll get to that. But first, we have more work to do.
Your Bathroom Makeover
Drag out another garbage bag because we’re not done purging yet. You don’t want to eat gluten, but you don’t want to put it on your skin, either, and a lot of personal products contain gluten, or might contain gluten. This can affect you seriously and severely. Five years after I went gluten-free, I was suffering from terrible burning on my scalp. Then I read the ingredients on my shampoo. Sure enough, it contained gluten. I switched to a gluten-free shampoo (I really like the Acure organic shampoo brand), and the burning completely disappeared.
There are some really high quality, gluten-free personal products, but one of my favorites is plain old coconut oil. It’s a great moisturizer for the skin (unless you have an allergy to coconut).
Fortunately, more non-food products are now being labeled “gluten-free,” but if you aren’t sure, read the ingredients list for suspicious ingredients, and toss it. Products that may contain gluten include:
Baby powder
Bath salts
Body lotion
Body wash
Body, hand, and face lotion
Bubble bath
Conditioner
Cough syrup and cough drops
Lipstick, lip gloss, and lip balm
Makeup
Mouthwash
Oatmeal products (like oatmeal bath products or lotions for itchy skin)
Shampoo
Sunscreen/suntan lotion
Toothpaste
Vitamin and mineral supplements
Many types of medication, both prescription and over-the-counter (OTC). Your medication won’t have a label so you will have to ask the pharmacist. Never rely on generic brands, which often contain gluten. You will have an easier time getting a straight answer about the gluten-containing status of a name-brand medication. Even if a medication didn’t have gluten before, find out again if you see anything like “new and improved” or “better tasting” or “new formula.” That means something has changed. Here are some of the ingredients in medications that could contain gluten because they definitely contain starch, and the source may not be identified:
Any starch derivative (other than corn, rice, potato, and tapioca, which are okay for you—if the starch is unnamed, don’t risk it.)
Caramel coloring
Dextrate, dextrin, maltodextrin, or dextrimaltose
Sodium starch glycolate
Here are some words to watch for in personal products that could signal gluten:
Barley
Gliadin
Gluten
Grain
Hordeum
Oats
Secale
Triticum
Wheat
THE REST OF YOUR HOUSE
Many other household products can contain gluten. Sometimes it’s obvious, if the ingredients say something like “wheat starch,” but often, products don’t have to contain ingredients, so always check with the company or look on the web site to be sure, for any product that will go in your mouth or on your skin. Consider that these household items may contain gluten:
Charcoal (the quick-light kind contains gluten and will contaminate any food grilled over it)
Cleaning products
Detergents
Envelopes, postage stamps, and stickers—the glue often contains gluten
Paint
Play-doh
Some people might quibble with these lists. They might say that this or that thing “probably doesn’t” contain gluten, or even that they know it doesn’t. How do they know? I’m not paranoid but I am careful, and when it comes to something processed in a factory where I don’t know for sure the conditions, I’m suspicious—and I urge you to be suspicious, too. Just be on the alert. Keep your food and products pure and simple, with minimal ingredients, and you’ll have the best chance of healing.
Stabilizing
Now that your home is safe for you, there are some things you can do to stabilize and nourish yourself. You haven’t been getting the nutrition you need, and it’s time to heal. The basics below are ones that worked for me, hands down. Of course, you should follow your own doctor’s advice, but here’s my list of basics that helped get me on the path to feeling better:
1. Get your vitamin and mineral levels checked. Ask your doctor to test your levels so you can get a good idea of where you are deficient. This can take a slew of blood work, but it’s so worthwhile to know exactly what you need so you can take the supplements you need the most. You might be severely deficient in any number of things, but you won’t know how your body is reacting until you test. Nobody wants to take a hundred pills every day; testing allows you to target your supplementation. Right now, you just want to take what you really need. Then, you can work up to more, when your gut has healed.
2. Up your Vitamin D intake. Most Americans, let alone most celiacs, are deficient in this important vitamin, and this is the number-one deficiency in celiacs. Vitamin D is produced in your small intestine, and since that is damaged, you may not have enough. You need vitamin D—it is essential for your bones, and a lack of sufficient vitamin D has been linked to depression, joint and muscle pain, chronic fatigue, skin pigmentation, and possibly even Alzheimer’s disease! Most people who’ve just been diagnosed need to start replenishing it immediately.
The problem is, if you can barely digest food, you certainly can’t digest horse pill-sized vitamins. I found that taking vitamins in liquid or powder form made it as easy as possible for my damaged digestive system to take in those nutrients. Consult with your doctor on what dosage is right for you.
You can also eat vitamin D-rich foods, like fish (especially herring, catfish, salmon, trout, halibut, sardines, and mackerel), fish liver oil, egg yolks (if you aren’t allergic to eggs), and foods that are fortified with vitamin D (like some non-gluten grains and dairy products, although I recommend you avoid dairy products). However, since celiacs don’t absorb nutrition very well, the very best way to get vitamin D is to take a liquid or powder supplement, at least until your levels are stabilized. Your doctor can do an easy test to check your levels whenever you go into the office.
You can also get vitamin D by putting your skin in the sun for about fifteen to twenty minutes per day without sunscreen, but the vitamin D from the sun isn’t the same as the kind produced in the small intestine. Your body needs to convert it, and since all things nutrient related aren’t working so great for you right now, you probably also need a supplement. In my case, I couldn’t get vitamin D from the sun until I got back into balance. My body didn’t know what to do with that vitamin D, and started attacking my skin. Remember, you have an autoimmune system so your body gets confused. You need to be gentle and do what works for you. Cover your bases. A gentle powder or liquid multivitamin and extra vitamin C for a more balanced immune system may also really help you, as long as it doesn’t upset your stomach.
3. Add acidophilus. The bacterial balance in your gut is almost certainly off and a probiotics like acidophilus can help to correct the situation. Mega-doses of acidophilus helped me to replenish my gut with beneficial bacteria as I was healing. Your doctor may be able to recommend a good probiotic supplement, but in the meantime, you can just get some acidophilus. It won’t hurt you.
4. Get some glutamine. This amino acid helps heal the intestinal lining. It’s great if you have celiac disease, as well as for leaky gut syndrome. Find an easily digestible powder and take it according to the package recommendations. You can also make bone broth by boiling bones (any kind) for a few hours with onions, garlic, and a little sea salt, and drinking the broth.
5. Try UltraInflamX. This is a medical food formulated to provide specialized nutritional support (it’s easily available online). I really benefited from this at first, when my entire digestive system was inflamed. It is a powder you use to make a smoothie. Try it for breakfast.
6. Boost your digestion with digestive enzyme supplements. These help you to digest your food better than you have been because they add the enzymes your intestine can’t make when it is damaged, and that helps break down the food so the nutrients are more available to you. There are many types available in the supplement aisle, or your doctor may be able to recommend a particular brand.
7. Try sprouting. Help yourself along the road, especially in the early stages after diagnosis, by sprouting all the gluten-free grains, seeds, nuts, and beans that you eat. Sprouting eases these foods into your body by getting the enzymes going in the food and dissolving some of the toxins that naturally occur in these foods (plants manufacture these to protect themselves from predators). Sprouting will also help these foods to be less gaseous and bloating for you. You can sprout them yourself, or buy sprouted grain products (find these in health food stores). To do this at home, just put the amount of gluten-free grain, seeds, nuts, or beans you want to eat or need for a recipe into a glass jar and fill with clean water to cover them, plus about an inch or two more. Use any size jar or even a glass or Pyrex bowl. Cover the jar or bowl loosely with plastic wrap or a plate or saucer over the top and soak at room temperature for at least four hours, preferably twenty-four hours. It’s easy to set up everything before you go to bed at night. The next evening, drain everything and lay it out on a towel to dry. The next morning, you can cook it or store your newly soaked nuts, seeds, grains, or beans until you need them. Drain the water and rinse well. The grains will get softer and mushier from soaking, and they will cook more quickly. If you like your nuts and seeds crunchy, dry them in the oven or in a food dehydrator after soaking.
As for beans and legumes (like black beans and lentils), I eat these now, but I don’t recommend them when you are first diagnosed because they are always difficult to digest, even with soaking and sprouting. Once you are feeling better, they are a good source of nutrition, especially if you soak them first. After soaking, cook them with a bay leaf to decrease gas even further. I like to soak foods the day before I want to eat them. Just let them soak overnight, drain and rinse in the morning, and they are ready to go.
8. Know your allergies. Many people with digestive diseases are also extremely sensitive to other foods. Pay attention to how you feel after eating various foods, and if you react negatively, try cutting them out of your diet for a few weeks, then reintroducing them, to see if you notice a difference. It’s best if you do this one at a time, so you can really pinpoint the source. Dairy is a common one, but soy and egg allergies are frequent, too. However, there are many uncommon allergies and intolerances, so there is no way to predict what yours will be. Some doctors will give you food allergy tests, but others say there is no solid evidence that these tests are accurate. Taking a food out of your diet and then reintroducing it after several weeks is the very best way to determine whether you are allergic or intolerant to that food. However, if you want to do a food allergy test to confirm what you think is a problem for you, this can help you be more motivated to keep that food out of your diet. Just be aware that your insurance probably won’t cover the test, and they can be expensive.
9. Consider a rotation diet. Because I wasn’t rotating my foods, I ate a few foods I thought were safe far too often, and now I am unable to eat eggs or almonds, and I can’t even eat rice very often. Not everybody has the sensitivities I have, but I found great benefit in rotating my foods. When you are in a heightened sensitive state, as you are if you have an autoimmune disease, you can develop an intolerance simply by eating a food every day, even if it was safe for you before. If this sounds like you, try never eating the same food more than once every three or four days. Rotating your food also forces you to get more variety into your diet because you have to keep thinking of new things to eat, and that can help you to be better nourished, which you desperately need right now.
10. Go alkaline. Eating a diet full of alkaline-rich foods, like fruits and vegetables, is highly beneficial for anybody with a chronic disease. Eating a more alkaline diet can make a big difference in how you feel, how much inflammation is happening in your body, and how sensitive you are to your environment. At first, don’t each too much raw because that’s hard to digest. Gently cook greens, root vegetables, berries, and orchard fruits, or add them to smoothies. A lot of water is acidic, so you should test it. Squeezing a lemon into your water will make it even more alkaline—believe it or not, lemons are alkaline, not acidic. The more alkaline foods you get into your diet, the better you will feel. You can also test yourself to see how acidic or alkaline you are. You can buy inexpensive testing kits at health food stores. The best book about the alkaline diet, in my opinion, is The pH Miracle.
11. Get the Metal Out. You may not need to tackle this right away, but it’s something to keep in mind as you get stronger. Get rid of heavy metals. Heavy metals, especially mercury, are highly toxic and kill the friendly bacteria in your gut, which can cause a cascade of other health and immune-related problems, making your celiac disease worse. Heavy metals bind to proteins, which the body then attacks, and that itself can lead to an autoimmune disorder. Heavy metals also increase free radicals and acidity in the body, leading to chronic inflammation, hormone issues, chronic fatigue, weight gain, thyroid issues, depression, nervous system issues, and more. Most of us have heavy metals, but if you have celiac disease or any other autoimmune disease, you want to reduce these as much as possible because your system is extra sensitive and easily damaged. Some supplements that can help gently detoxify your body from heavy metals: glutathione, cilantro, burdock, blue-green algae (also called chlorella), and selenium. Also, eat lots of onions and garlic, which contain many properties that can help to detoxify you.
Try some or all of these things, and see how you do. Now, let’s talk about what you can eat!