Celiac.com 04/09/2010 - Receiving a celiac disease diagnosis or being told you need to be on a gluten-free diet can be an overwhelming experience, and it is certainly not for the faint of heart. Most people get frustrated with the transition, and many don't know where to begin. While eating gluten-free can improve your health, I must emphasize that it is not recommended to attempt a gluten-free diet without a doctors supervision, as there are many potential health risks involved with making drastic changes to your diet, which can be avoided with assistance of a qualified doctor and/or nutritionist. If you suspect gluten-intolerance to be the culprit for your health problems, get examined by a doctor and get tested for celiac disease before initiating a gluten-free diet. It is very important to continually consume gluten while you are undergoing testing for celiac disease because many of the tests require you to be consuming gluten to get accurate results.

Prescription: A Gluten-Free Diet

Now that you have your diagnosis and need to eliminate gluten, you can make the transition to a gluten-free diet with confidence. The following information is a guideline of what you will need to know to get started. I must emphasize that this is only a guideline, and you will need to do your own research and consult with your doctor for more detailed information on a gluten-free diet. It is also a great idea to get involved in local support groups. Support groups will have members that understand what you are going through and they can help direct you to beneficial resources:
Create New Habits
To begin, if you are accustomed to doing things your own way, you will have to throw out many of your old habits. To avoid gluten poisoning you must keep all gluten away from your mouth. You will need to evaluate everything you ingest very carefully. Gluten can come in a variety of unexpected ways, including a kiss from a loved one, and any gluten that comes into contact with your mouth is a potential source of contamination. Cross-contamination can occur when a meal is prepared on cooking equipment shared with gluten-containing foods. It can also come from touching anything that has come into contact with gluten. It is therefore important to gluten-proof your house and to keep everything you eat separate from gluten and gluten residue. If you eat at restaurants, it is important to only eat at places that you know are safe. To help you avoid accidental gluten ingestion, please follow your instincts and use the following guidelines and avoid potential health hazards. Please remember that these are only guidelines--if you still have questions, please consult with a medical professional.

What does "Gluten-Free" Actually Mean?

Since gluten is found in wheat, rye and barley, it is obvious that you will need to avoid these grains. Less obvious however, are the myriad of products that contain gluten as a hidden ingredient. The Food and Drug Administration (FDA) has not yet regulated the use of "gluten-free" on a food label, but it does require manufacturers to declare wheat if it is used as an ingredient in a product. Unfortunately the regulations do not require companies to disclose ingredients that are made from barley or rye, which unfortunately requires you to learn to read and understand ingredient labels. Many additives, natural or artificial, can contain gluten. Sometimes companies label products as "gluten-free" or the ingredients are naturally gluten-free, but the product may have be contaminated if it was manufactured on shared equipment. You will have to decide if you want to include such products in your diet. It is also important to remember, for reasons just mentioned, that “wheat-free” does not mean “gluten-free.”

Batch Testing:
According to current FDA proposals, products testing at less than 20 parts per million (PPM)  for gluten will likely be allowed to be labeled "gluten-free," and, according to them, are considered safe for people with gluten-intolerance or celiac disease. There are several organizations that offer gluten-free certification for companies who follow their guidelines and batch test their products. Check out the link below for more information on gluten-free certification and labeling.

Gluten-Free Shopping

Shopping will likely take much longer for you than it used to. Don't rush. It is important to read all ingredients carefully. If you are in a hurry, you run the risk of overlooking a key ingredient that might contain gluten. I find it helpful to plan my meals in advance. There is nothing worse than coming home from work hungry and realizing that you have nothing to eat (and it isn't like you can go to the first drive-thru you find). So planning my meals on the weekend and doing my shopping in advance, cuts my stress level down considerably and keeps me from going hungry. Check your products against your gluten-free guidebooks, and contact the manufacturer if you are unsure about something. The following links will help you take the guess work out of shopping for gluten-free products:
As mentioned, there are also many products that are naturally gluten-free that are not labeled "gluten-free," and there are some very helpful books that can help you find these foods when you are shopping:

A Gluten-Free Kitchen

A gluten-free kitchen is very important. If you can have an entirely gluten-free kitchen, that is ideal, but it may not be an option for many households. Therefore it is especially important to keep your house clean and free of gluten contaminates.  It is also important to dedicate special kitchen supplies for gluten-free cooking. I bought a new cutting board that is dedicated only to gluten-free cooking. You may also want to have separate kitchen utensils such as sponges, toasters (a dedicated gluten-free toaster is highly recommended), sifters, bread machines, etc. This is especially important if you use utensils that are made of wood, plastic, or other porous materials that could harbor gluten and possibly contaminate your gluten-free food. If possible use an electric dishwasher to clean your dishes.

If everyone in your household is going gluten-free it is important to clean out and empty all of the gluten products from your kitchen. If you share a kitchen with gluten eating family members, it is a good idea to store their food products separately from your gluten-free products, and to clean off all surfaces before you prepare your gluten-free food. Dedicating gluten-free cupboards and refrigerator shelves is a great way to start.

Here are some important links that will help you cook gluten-free meals with ease:

Kitchen Checklist - Possible Sources of Contamination:
  • Bread-machine
  • Toaster
  • Sponges & cleaning pads
  • All kitchen supplies & utensils
  • Colanders
  • Cutting boards
  • Door handles
  • Soaps
For more information on maintaining a safe kitchen environment, click the link below:

Dining Out Gluten-Free

Dining out presents a challenge for most people on a gluten-free diet. Depending on your level of sensitivities, you may have difficulty eating out at all. Even if the restaurant offers a gluten-free menu, it is always important to find out what safety precautions the restaurant uses to avoid cross-contamination, and to make sure all the ingredients in your food are gluten-free. This may require you to modify your order, and also may mean talking with the chef about their kitchen practices. You may also benefit from utilizing a guide to safe restaurants which can be found below:
Here is an additional article that may be helpful to your situation:

A Gluten-Free Bathroom

Believe it or not, your bathroom is another place where you might be getting sick from gluten contamination, and not even know it. There are many products in your bathroom to watch out for as many body products contain wheat and/or hidden gluten ingredients. Most celiacs can use body products without a negative reaction, though some people experience rashes and other unsavory reactions from gluten body products. However, if you are using face or body products that contain gluten, it is very important not to ingest them. I find it difficult to avoid getting shampoo or makeup near my mouth, so I don't take any chances. I use gluten-free soap, shampoo, conditioner, face-cleaner, toner, make-up, toothpaste; basically nothing goes onto my body that contains gluten. Using gluten-free body products allows me the freedom to worry less about accidental contamination, and gives me more time to enjoy my life. Many gluten-free body products are not labeled gluten-free, so it is important to read ingredient labels carefully and check with the manufacturer if necessary.
Bathroom Checklist:
  • Toothpaste
  • Shampoo/conditioner
  • Make-up
  • Lip-stick, lip-liner, lip-gloss, cosmetics, etc.
  • Lotion
  • Sunscreen

Gluten-Free Medications (Prescriptions and Supplements)

Most people with celiac disease or gluten-intolerance also suffer from malabsorption and sometimes malnutrition. Your doctor may prescribe pain, anti-inflammatory, digestive or other medications or supplements to help assist with your recovery. It is very important to note that some medications and supplements can contain gluten. Do not assume that just because your doctor knows you have celiac disease or gluten intolerance that the medications or supplements they may prescribe for you are gluten-free.  Be your own advocate and read the ingredients and contact your pharmacist and/or the manufacturer and find out if your prescriptions, vitamins and supplements are gluten-free.

Additional Concerns

Children with Celiac Disease
Raising children with celiac disease or gluten-intolerance is no easy feat. Your kids will have to deal with immense  peer pressure and there will be a great deal of temptation for them to eat gluten-containing foods. Talk to the staff at their school and help them to understand your child's special needs. The more support you have, the better off your child will be. There are many support groups that advocate for children with celiac disease, and it is important to get involved and learn everything you can to help support your child.
Pets
Your pets present another source of potential contamination, especially if you have pets like mine that love to smother you with unexpected kisses, sometimes on the mouth. What your pet eats can affect you too. Handling your pet's food, cleaning your pet's dishes and having young celiac children in a house where they may eat dog or cat food are all legitimate concerns. I decided to switch my pets to gluten-free pet food. Most pet food is not labeled gluten-free, so it is important to read ingredients carefully. I found grain-free, all natural pet food to be a great alternative to gluten-containing pet foods, that way I don't have to worry about accidental contamination or getting kisses from my pets--and it's healthier for them too!  It is also important to check all other pet products that you come into contact with for hidden gluten ingredients, like shampoos and soaps. It is of course always important to talk to your veterinarian before making any dietary changes for your pet.

Other Food Sensitivities
Most people who begin a gluten-free diet experience almost immediate relief from their symptoms. However, many people experience gluten-like reactions to other foods, and often suspect that their food was contaminated by gluten. As it turns out, many people who experience such reactions may in fact have additional food sensitivities. Some of the most common food sensitivities include, dairy/casein, soy, corn, sugar, nuts, shell-fish and processed or fatty foods. While many people report that they are able to add these foods back into their diet after they have established a gluten-free diet for many months, and after their intestines have had time to heal, it is up to you and your doctor or nutritionist to determine which foods may be causing you trouble. The 'elimination diet' is often recommended for determining what additional food sensitivities you may have. Ask your doctor if the elimination diet is right for you.
Food Diary
It is important to keep a food diary, especially when first initiating a gluten-free diet. Making notes of the foods you eat and the reactions you have to the foods you eat, and how you feel that day, can give you more insight as to which foods are hurting you and which foods your body can easily digest.

Final Thoughts

Be Picky
Having a gluten intolerance means taking pride in your body, but not being too proud to say, "no, thank you." Don't worry about appearing too picky to others, you simply can't take care of yourself and worry what others think of you at the same time. You have the right to eat what you want; if something doesn't look, smell or taste right to you, or if you just don't feel right about eating something, don't eat it! It is better to come across as too finicky, than to spend the night in the bathroom or worse yet, the emergency room. Everyone has a different level of gluten sensitivity and you will have to find out through trial and error what works best for you.

Be Prepared
As a former Boy-Scout, my high-school teacher used to always say, "Be prepared".  I cannot emphasize enough the importance of this statement. It is important to be prepared and think ahead. Keep gluten-free snacks on hand at all times, because you never know when you are going to get hungry somewhere that doesn't offer gluten-free food. Keep shelf-stable snacks in your car, office, purse, and anywhere you spend time. It is better to have gluten-free snacks on hand, then to get hungry and make a bad decision to eat something you might later regret.

Gluten-Free Quick-Check:
  • Read all labels carefully
  • Call the manufacturer whenever necessary
  • Avoid cross-contamination at all times
  • Keep your hands clean
  • Check personal-care products for hidden gluten
  • Check all vitamins, supplements and RX prescriptions for hidden gluten
  • Make sure your pets are gluten-free
  • Maintain a food diary
  • Get involved-join a support group
  • Rule of thumb-if you think it's possibly contaminated, don't take any chances. It's better to go hungry than to suffer later.
  • Above all, trust your body
Additional Resources:
As always, Celiac.com welcomes your comments (see below).