- Making Your Household Gluten-Free Friendly
- Setting Up Your Kitchen to Avoid Cross Contamination
- Ensure Your Non-Foods Products Are Gluten-Free
- Using Gluten-Free Arts and Crafts Products
- Learning to Shop Gluten-Free
- Learning to Cook Gluten-Free
- Eating Gluten-Free in Social Situations
- Learning to Dine Out in Public on a Gluten-Free Diet
- Attending Parties and Gatherings on a Gluten-Free Diet
- Learning to Travel on a Gluten-Free Diet
- Tax Deductions for Celiac Disease Patients
Celiac Disease. You get the diagnosis, and for many of us, it comes as a complete shock. Maybe you knew something was off in your body, but didn’t think the answer would be that it is caused by the foods you are ingesting. Maybe you had one of the several common celiac symptoms from anemia to weight loss to fatigue. Or maybe you were someone who has a family history of celiac disease and were just waiting for the official diagnosis to get on the road to healing. People are diagnosed at all ages, from the infants to the elderly.
Even if we were half expecting it, it is a complete life change that one cannot really comprehend until you are forced to experience it yourself. It seems the common story is that once you get the celiac diagnosis, either by blood work alone or via endoscopy (which looks at the villi lining the intestines for damage) your doctor will tell you to follow a gluten-free diet from now on and simply send you our way.
Many doctors, including numerous gastroenterologists, are still under the belief that celiac is an uncommon occurrence and have a lot to learn about the disease and the many ways it can present itself. If we are lucky, we may get a handout about the disease, told we need to stay away from gluten, or maybe get a referral to see a dietitian to go over some of the basics of the gluten-free lifestyle. If you find yourself in this situation, this is a good time to ask about what vitamins and supplements you should take, since many of us with celiac have low levels of one or several essential vitamins.
The first thing you’ll learn is that celiac disease is a genetic disorder caused by the body’s immune response to gliadin, a protein found in gluten, which is found in wheat, barley, rye and even some oats. Therefore, it is found in many processed foods, personal care products, medications and even arts and crafts. According to the University of Chicago Celiac Disease Center, a prominent international organization of experts in the field, celiac disease is, “an inherited autoimmune disease that effects more than 3 million Americans”. It is believed that 1 in 133 people in the United States have the disease but only 10% actually know they have it, with rates being higher if one has a first degree relative with the disease. It is also found that there are higher rates of the disease in people with European ancestry, although people from around the globe are known to have it as well.
The adjustment to the gluten-free diet is a major lifestyle change. If you are someone new to food allergies and intolerances, a celiac diagnosis can be extremely overwhelming and initially upsetting. However, it is extremely important to be strict with eliminating gluten from our lives. Studies have shown that neglecting the gluten-free diet can lead to the development of additional autoimmune disorders, osteoporosis, increased risk of some cancers and even higher mortality rates. All of us feel the effects from gluten differently; some won’t feel any effects while others will have physical repercussions for weeks, making it is necessary to completely eliminate the gluten no matter what your discomfort level. The gluten is damaging your body whether you feel the effects or not; therefore, some say it is easier to actually feel the after-effects to know if you have accidentally ingested gluten.
Now that you know you must embrace the gluten-free lifestyle, how do we move forward and get started? Take a breath, it really does get easier.
One of the most important aspects of being gluten-free is to be able to feel comfortable in our own home, especially since anytime we are out of our comfort zone we will have to be super aware of what is coming into contact with our bodies. For some people it may be easier to eliminate gluten completely from your home and create a dedicated gluten-free home. For others who share a home with gluten-able family members it may be more difficult to achieve this, resulting in the need to establish a shared household.
When starting on the daunting task of de-glutenizing our homes it can seem overwhelming, but just take it one step at a time. Your phone will become one of your most valued tools in this process, especially one with web access. Calling a company directly is sometimes the best way to find out if a product is gluten-free, or going to their web site and looking in the ‘FAQ’ or ‘About Us’ section. There is a lot of misinformation on the internet about which products are safe or not, so it is important to know you are getting information from a trustworthy source.
The most obvious room where a significant adjustment is needed is the kitchen, so let’s start there. Cross-contamination is probably the biggest challenge that someone with celiac disease faces in their daily life. Cross-contamination is when food particles on one item are transferred to another item via direct contact. This can happen in three ways, ranging from shared use of utensils, gluten-filled food touching gluten-free food, or people with gluten on their hands touching gluten-free food. Someone who opens a package of standard flour next to a gluten-free item will likely contaminate that item from the spray of flour. Similarly, you want to avoid cutting items on cutting boards that have had gluten items on them, and removing croutons from a salad does not make it gluten-free, the items that touched the croutons are already contaminated.
- First, go through the obvious culprits, the flour (yes, white flour is derived from wheat), breads, pasta, candies, cookies, crackers, and then look into the ingredients of other items. Gluten is found in everything from spice blends, sauces, soy sauce, canned items, rice mixes, soups, salad dressing, juices, flavored milk, malt vinegar, ice cream, beer, liquor and the list goes on. Basically anything that is edible other than fresh fruits and vegetables is suspect. In the United States it is mandatory to list wheat in the ingredient list, but it is not necessary to list rye, barley and oats, so this is where the problem lies. There are many times gluten is hidden in the flavorings in the form of barley malt and seen as ‘natural flavorings’ in the ingredient list. When you see this, it is important to confirm exactly where that natural flavoring comes from, not all are gluten-derived but many are. ‘Modified food starch’, is another one, again in the US wheat is supposed to be disclosed in the ingredient list, but if it does not list exactly what food starch is used, it is a good idea to confirm, especially if the food product is sourced from outside the country, as every country has different requirements for listing food ingredients. It is a good idea to give away the food products you will no longer be using to friends or food banks. If you are living in a shared household, you can designate an area of the kitchen or specific containers to store gluten products and contain the gluten items in those spaces. Examples include cabinet space, drawers and counter tops.
- Once you have a handle on the food, move on to kitchen tools, such as toasters, cutting boards, strainers, wooden and plastic spoons, non-stick pots and pans and waffle makers. It can be quite painful to have to part with that fancy waffle iron that was given as a wedding present, but it will be more painful to continue contaminating yourself with gluten. Anything that has scratched or porous surfaces should be discarded and replaced. That lovely high quality wooden cutting board unfortunately has to go, as well as the cheaper plastic ones. And a toaster once used for gluten bread will now be completely unsafe. For a shared kitchen keep these items in the gluten space. After sorting through the kitchen tools, clean all surfaces used for gluten-free preparations. Clean out all drawers, cabinet spaces, counter tops. You don’t want to eliminate all potentially dangerous utensils only to place newly purchased utensils in drawers with flour or crumbs sprinkled throughout. Other things to consider in the kitchen is the sugar bowl, and the possibility that a spoon in the sugar bowl may also have been used to spoon flour, the same would be true for a bag of sugar or other baking items and spices that could be subject to cross-contamination. Oats are also to be removed unless they are gluten-free oats. The process of growing, harvesting, transporting and handling oats leads to contamination. Some even debate whether any kind of oats are suitable for someone following a gluten-free diet as they contain a protein that will cause some celiac patients to react. If you are concerned or experience problems you’ll want to consult your doctor how to proceed regarding oats.
- Let’s not forget your medications and vitamins. Fortunately, many vitamins today list the common allergens and whether or not they are gluten-free. When purchasing over-the-counter and prescription medications it is always necessary to confirm that they are gluten-free, and if not, what a suitable substitution would be. With a shared household be sure to prepare food items in separate designated areas. If you live in a gluten-free house, it may be easier to tell guests to only bring drinks, and you will handle the food. The last thing you want is a carefully de-glutened home to become contaminated by outside food. However, this is a very personal decision, so use your own preference to determine how to handle gluten in your home.
Next, we move to the bathroom. Personal care products are another major source of gluten. Any item that can potentially be ingested is an item worth replacing, including toothpaste, soap, shampoo, conditioner, lipstick, lip balm and make-up. All of these items have the potential to be ingested especially after moisturizing your hands only to grab and apple to eat as a snack…cross-contamination. Oats are a common ingredient in these types of products, which is sometimes listed as ‘avena sativa’. The fragrance in items may also contain unlisted gluten. This is problematic for those who experience Dermatitis Herpetiformis (DH), a form of celiac disease that manifests on the skin in addition to the normal celiac symptoms.
In addition to personal care products, it is also important to investigate all household products such as dish soap, dishwasher detergent and laundry detergent.
It is also important to check all arts and crafts products, including finger paints, glues, stickers and even play dough! Anything that can be touched can eventually end up being ingested when something edible is being handled, especially by young children who often place their hands in their mouths.
With what seems like so many restrictions there are actually many foods that are naturally gluten-free, even in most mainstream grocery stores. Despite the rumors, not all gluten-free foods are costly. Usually if it says ‘gluten-free’ it is going to be more expensive than mainstream items that have always been gluten-free. Give yourself some extra time on your first few visits to the grocery store after your celiac diagnosis. You will need to read every label carefully to get the hang of what is safe and what is not. Again, be sure to have your trusty cell phone. Food manufacturers are also frequently changing ingredients or changing how they are sourced, so even if something was safe at one time, it is a good idea to check the ingredient list every time.
Fresh fruits and vegetables should not be a problem, as with meats and fish as long as they are not marinated or cooked next to marinated meats. The deli area can be tricky, and you want to make sure if getting cheese or meat that you know the product itself is gluten-free and that they use clean gloves and a clean slicer. Bulk bins should be avoided as there is a large chance for cross-contamination with bins being unclean, spoons going in the incorrect bins and flours floating into the air.
It is more common these days to see products in the mainstream being labeled as gluten-free such as Chex cereals and Betty Crocker mixes/frostings. Some companies have started going out of their way to earn the business of those on a gluten-free diet and will label any source of gluten on their packaging even though it is not required. Recent examples include products from Kraft, McCormick, Unilever, Hain-Celestial and General Mills. General Mills has gone as far as placing ‘gluten-free’ on their products. It is definitely a growing trend with the increased awareness. There are also many food manufacturers that cater to the gluten-free community and only produce gluten-free items. These usually tend to be a bit pricier, but give you the piece of the mind that they are manufactured in a dedicated facility and that they are knowledgeable about being gluten-free.
Some companies will disclose that items are produced in shared facilities or shared manufacturing lines. It is up to you to decide what you feel comfortable with and how sensitive your body is.
There are also specialty stores and bakeries in many major cities that will have large gluten-free sections, or sometimes even be exclusively gluten-free. Again, these tend to be a bit more expensive but you will be able to find the harder-to-find gluten-free items.
Note: If you live in the United States, you may also want to consult our gluten-free groceries page for more information about grocery stores and supermarkets which carry gluten-free products.
Having a diagnosis of celiac disease does not mean you need to trash your favorite cooking books and stop subscriptions to your favorite food magazines. With time you’ll find that some simple adjustments can allow you to easily convert your favorite recipes into gluten-free recipes. For pasta dishes, simply substitute in gluten-free pasta. If soy sauce is being used, be sure to use wheat-free soy sauce. Of course if wheat is being used to thicken, use a substitute such as arrowroot, bean flour or cornstarch.
Baking while following a gluten-free diet is a little trickier, but again, once you get the hang of it, you can easily take a gluten recipe and transform it into a wonderful gluten-free baking treat. There are also many gluten-free baking cookbooks to learn how to make baked goods!
Now, that you have the basics for how to handle food and cross-contamination at home, what happens with you decide to leave the house? Once we feel safe at home it can be a little intimidating to leave the house and venture out to where we have to rely on someone else’s ability to keep us from getting “glutened”.
One must keep in mind that when dining out, unless at an exclusively gluten-free restaurant (which do exist in some places) there will always be the risk of cross-contamination. There are definitely more and more restaurants aware of the concerns of people following a strict gluten-free diet, but nothing is guaranteed. There are already many large chains that offer gluten-free menus, but this does not mean that restaurants without gluten-free menus are out of the question. It is possible that dishes you would order anyway could be naturally gluten-free. Some ethnic cuisines are going to be more likely to serve gluten-free dishes than others, such as Indian and Middle Eastern foods where a lot of bean flours are used. However, it is always a good idea to do a little planning before eating out. Check the restaurant online, do a search of the restaurant name with the terms ‘gluten-free’ to see if anything comes up about it. You can also look up the menu, call and speak to the manager and ask questions, and ask questions to your server.
When at the restaurant, it is always a good idea to mention to your server that you have an issue with gluten and explain the seriousness of cross-contamination. If they know your concerns they are more likely to take careful precautions in the kitchen, such as cooking your steak in a separate pan or away from items that may contain gluten to minimize your risk. If you plan on having something fried, such as fries, you want to be sure they are fried in a dedicated fryer devoted to that product. The concern being that breaded products such as onion rings or chicken fingers would be cooked in the same fryer and contaminate the fries. You will also want to ask about all sauces, marinades and dressings. Even the corn chips at a Mexican restaurant may contain wheat flour or have been fried with flour tortillas, so it is important to make sure cross-contamination hasn’t occured. It may seem intimidating at first, but as long as you are gracious to your server they are more than likely to bend over backwards to make sure you have an enjoyable experience.
Unfortunately, not everyone one in the restaurant industry is knowledgeable about the gluten-free diet or has even heard of it. In my own personal experience, I have found it easier, sometimes, to say that I have a wheat allergy (even though that is clearly not the case). When a server hears food allergy they understand the seriousness of the situation and will often take extra care when handling your food.
Eating out is never a sure thing, and you are always taking a risk, but it is good to come prepared and continue to live life. Some companies provide dining cards, such as Triumph Dining. These cards clearly list what is not allowed on a gluten-free diet and what is safe, so that you can pass this card to your server and in turn they can take it to the kitchen to confirm your food will be as safe as possible with the chef. There are also iPhone applications that provide cards on your phone in several different languages so that even when you don’t speak the same language you can convey your specific needs to your server. I have also found it is much less stressful for everyone involved when dining at non-peak times. The kitchen and servers are less hurried and it makes it easier for them to fulfill your needs, and may also give you the chance to speak to the chef personally.
What happens when you go to a pre-determined meal, a sit-down meal at a wedding or attend a business meeting? I would say the best thing to do is to do a little planning ahead of time, and always carry a back up snack. For a situation such as a wedding, you may want to contact the bride or the groom a few weeks beforehand and see if they could convey your needs to the reception facility or if you could contact them directly. When attending a function such as a sit down performance, you can call the venue directly, express your needs and see if they can work with you. Many times they will be happy to help and have a special meal on hand for you when you arrive. The thing not to do is to come unprepared and to ask them for a special meal on the spot. Meals have already been made and they are running around to get everyone served, and will not have the time to dedicate the attention you need.
Some people would rather not have to deal with the complications of eating out and worry about communicating with the servers and risking cross-contamination, but it is possible and you can continue to go out socially and live your life just as you did prior to your celiac diagnosis. If you are extremely cautious of eating in restaurants you can eat beforehand or bring your own food. The same idea can be applied when for example, you are eating at a Mexican restaurant, but you know the chips are not gluten-free. Just be sure the salsa is safe, and do not share a salsa dish with people dipping gluten chips. You can do the same with bringing bread to a restaurant that does not have gluten-free rolls or bread. It is always nice to ask ahead of time, but most likely they will be courteous about it.
As previously mentioned, it is a good idea to carry a snack on you at all times. You never know when you will be in a situation when you will be starving with nothing close by to eat. Something with protein is a great idea, such as a bag of nuts, energy bar or dried fruit so that you can have something nutritious that will hold you over until you can get a proper meal.
Note: If you live in the United States, you may also want to consult our gluten-free restaurants page for more information about restaurants that offer gluten-free menus in your area.
One of the most stressful situations for someone with celiac has to be going to a party or gathering. Food is coming in from all different people from different kitchens with different ideas as to how to handle food intolerances, if any at all. Serving spoons are dipped into the non-intended dish, and it could be a buffet of cross-contamination waiting to happen. The way I navigate this type of scenario when at someone’s house is to bring my own dish to pass and serve myself first, or make a separate container for myself. I will assume nothing else is going to be safe unless I talk to people beforehand, and be sure I bring enough for myself to eat. When it is only one person doing the cooking, I will talk to them beforehand and plan what I can and cannot eat. If I am at a BBQ, I will ask for my food to be grilled on foil so not to touch the grill, which may have gluten remnants on it. I won’t use condiments that other people have placed spoons or knives into that can likely have crumbs inside. Even though butter is gluten-free, it may have leftover crumbs from the host’s morning toast. It can seem tedious at first, but I will ask to see the spices, dressing and food packages used so I can assess my risk. The important thing is to ask questions, lots of questions and only then can you make an informed decision. And don’t forget the phone, if you want to quickly look up an ingredient, a brand or call a food manufacturer. My phone has been invaluable in these situations. And always try to serve yourself first.
Most beer contains gluten, unless it is marked gluten-free. Most ciders, wines and liquors are safe, but always double-check. If the liquor has been distilled it will be safe, but if it is flavored after the distillation process, the flavoring should be questioned as it could contain gluten.
Social situations can seem the most awkward because you don’t want to stick out of the crowd and seem ‘difficult’, but you also want to feel comfortable and safe and not end up sick by the end of it. You just need to be your own (or your child’s) advocate and be knowledgeable and have a backup plan with food or snacks that you bring yourself. I have gone to business meetings with my own lunch and it may have seemed awkward at first, but I left feeling great and didn’t have to worry about cross-contamination.
The same ideas for eating out and social situations often apply when traveling on a gluten-free diet. In addition, it is always a good idea to bring gluten-free snacks from home if you are not sure what resources will be available while traveling and always research gluten-free options available at your destination. You can find a large number of gluten-free tips and other travel information on our gluten-free travel page.
When tax season rolls around, if you have been diagnosed with celiac disease you may be happy to learn that you are able to deduct gluten-free foods and the costs to acquire them on your taxes as medical expenses. This can be done on publication 502 as long as your medical expenses are greater than 7.5% of your adjusted gross income (AGI).
Gluten-free deductions include the added cost of having to buy a gluten-free alternative, for example, if you buy a loaf of gluten-free bead that is $5.50, and the gluten equivalent is $2.50. In this situation you can deduct the difference of $3.00! You can also deduct specialty gluten-free foods, such as xantham gum and rice flour, the gas it took you to get to the specialty store which carries the product as well as shipping costs if you mail-order them. Of course it is important to keep all receipts that include gluten-free items. These do not need to be submitted with your taxes, but should be kept in case of a future audit along with a doctor’s note confirming you (or your child’s) diagnosis with celiac disease.
In addition to tax deductions, if you have an flexible spending account (FSA), check with your plan provider to see if gluten-free food is covered. The in-house administrator may not know of all items covered so it is a good idea to go to the source and find out the correct answer if you don’t get the approval from your administrator.
There are also numerous resources available online with a wealth of information, including here at Celiac-Disease.com. However, most sites are run by people with celiac disease rather than doctors so keep that in mind. For a point of reference, there are definitely some web sites that are more credible than others, which you can read more about that here. In addition to all of the sources about celiac and gluten-free diet, there are also countless blogs where fellow people with celiac share their wonderful gluten-free recipes.
The gluten-free lifestyle may not have been a personal choice and may seem extremely overwhelming at first, but take comfort in the fact that it does get easier over time! It is not all doom and gloom. It is possible to live a long happy, fulfilling life on the gluten-free diet. Over time you’ll find that many people with celiac disease have fully embraced the gluten-free diet and would never go back. Just follow your instincts, do what makes you feel comfortable, take a deep breath, and in time you will thrive!