A Celiac Disease diagnosis changes your perspective in many ways. First of all, it is a relief to have a name associated with what's been ailing you. It's amazing that seemingly unrelated symptoms, such as leg cramps and digestive disturbances, canker sores and depression, are all part of one syndrome. People diagnosed with Celiac disease often endure years of suffering before finding out the reason for so many painful symptoms.
Though the diagnosis provides relief, the treatment is overwhelming. You can't take a pill and get better. The only known treatment for Celiac disease is strict life-long adherence to a gluten-free diet.
Gluten is the sticky-storage protein found in wheat, barley, rye and some oats. Food producers use gluten in ways you'd never suspect. Who would imagine that buttermilk can contain food starch? I recently bought a quart. I discovered, after I arrived home, that food starch is an added ingredient. Spices, sauces, toothpaste, medicines, and so many other products can contain gluten. Food starch is everywhere, so those who have Celiac disease must learn to recognize it.
Even tiny amounts of gluten cause an autoimmune reaction and damage to the small intestine. There's no tapering down or cheating once in awhile. The offending grains must be eliminated. Many formerly favorite products are poison to a Celiacs system.
Following are tips for getting started on a Gluten-free diet. It's difficult at the onset, but after a few months of practice, avoiding gluten becomes easier.
~Choose Foods Carefully~
When in doubt, eat only fresh meat, poultry, fish, vegetables, fruit, rice, and dairy products with no added ingredients. When you go shopping, try to buy foods labeled gluten-free on the packaging. Such labeling makes it so much easier to shop. All of Wal-Mart's store brand products are labeled gluten-free, if they are. Remember that ingredients used to produce familiar foods often change. If you are not sure about a product, call the manufacturer.
Health food stores and the health food section in grocery stores carry some gluten-free products. 100's of new products are added every year. Many manufacturers specialize in gluten-free convenience products such as cookies, bread, cake mixes, pasta and cereals. I find these products useful, on occasion, but they frequently lack nutrition. They can cause considerable weight gain if used too often. I try to stick to whole foods as much as possible, though a treat once in awhile helps lessen feelings of deprivation.
~Learn the Language of Labels~
Many products that are gluten-free are not labeled as such. Begin to learn the language used on labels. Terms such as malt, bulgur, hydrolyzed vegetable protein (HPV), natural and artificial flavors, mono and diglycerides, and spices, indicate the product is or may be unsafe. Sometimes products are processed in a facility that also processes wheat products. Gluten-free products can be contaminated through the shared use of machines, or even from flour in the air. Click here to get the information you need to effectively read food labels.
~Find a Support Group~
Many communities have a Celiac Disease Support group. A support group is a good way to learn about Celiac disease, a place to meet others with the same disease, and a way to get involved in Celiac awareness activities, if so desired. It helps to share ideas and to recommend favorite products. I recently learned about gluten-free rice tortillas at a support group meeting. They taste great and allow me to have my favorite Mexican food without getting sick. Click support group to find one in your area. Scroll down the page. You'll find a heading in the green section titled, "Celiac Disease Support Groups, Organizations & Contacts."
~Join a Celiac List-Serv~
A list-serv is like an internet group. People from all over the country sign up to be part of the list-serv. You can ask questions there and receive answers from many people. Click here to join a Celiac list-serv. When you arrive on the page, scroll down to "celiac" and click again. You will be directed to a page where you can join. Over 3,000 people with Celiac disease belong to the list-serve. They are ready to help you, via internet, with any questions or concerns that you have.
~Find a Doctor~
Finding a doctor that knows about celiac disease is difficult. Medical schools give very little attention to this condition. Though 1 out of 133 Americans are intolerant to wheat and gluten, most are undiagnosed. The disease is still viewed, by the medical community, as rare in the United States. More and more people are diagnosed every day, so hopefully medical schools will give Celiac disease more attention in the future.
There are several ways to find a doctor:
* Ask your gastroenterologist for a referral.
* Click here for a list, by state, of recommended doctors. Scroll down the left-side column until you see the heading "Celiac- Disease Doctor Listing."
* Ask members of the list-serv for recommendations.
* Ask members of your local support group for recommendations.
The National Institute of Health (NIH) held a conference in 2004 that focused on management of Celiac disease. Click here for their guidelines. All of the information on this page is useful. For "What is the Management of Celiac Disease," scroll down to topic #5. This is a good document to print and to take to your doctor. It can help your doctor develop a treatment plan for management of Celiac disease.
It's helpful to provide a list of gluten-free drugs to be stored in your medical file. Your doctor can refer to this list when prescribing medication. Click here to print a copy of "Gluten-Free Drugs." You can print an alphabetical listing, or print according to the type of drug needed, e.g. antibiotics. It's important to make a new copy of the list once a year. Just as food ingredients can change, so can the ingredients used to make drugs.
~Choose Restaurants Carefully~
Most people enjoy eating out on occasion, but people with Celiac disease have to make sure that they are eating safely. The Gluten-Free Restaurant Awareness Program, founded by the Gluten-Intolerance Group, is a useful site for locating restaurants that have agreed to follow the guidelines necessary to safely serve a person with Celiac disease. Click the link above to learn about the "Gluten-Free Restaurant Awareness Program."
Most restaurants have websites that can be useful in determining their ability to provide a safe meal. Some sites list gluten-free meals. Others dont, but a phone call to the manager, at non-busy times. is usually welcomed. They can answer any questions you have.
If no questions have been asked before going to a restaurant, be prepared to communicate your needs to the server. Be considerate. Try to avoid eating out at peak times, when staff is overloaded.
A gluten-free restaurant card, which helps identify dietary restrictions, is available through the Gluten-Intolerance Group, for a small fee, or click here for a free restaurant card. This site asks for a donation, but doesn't require one. You can give this card to the server, who takes it to the chef. The chef usually offers a couple gluten-free entrees for you to choose from.
Be sure to ask questions if you have any concerns. I discovered that the vegetable garnish served with a gluten-free meal at Bone Fish Grill is not gluten-free. Another time I ordered lettuce wraps from a gluten-free menu at PF Changs. When they arrived via a second server, I said, "Gluten-free, right?" He looked sheepish and said he better get a new batch from the kitchen. Mistakes can be made, so be "on your toes" when eating away from home.
~Handling Social Events~
Social events, such as potluck dinners, buffets, and company dinners are the most difficult aspect of having this disease. People can become easily offended when you do not want to eat whatever is offered. I do not like being put in the spotlight, or asked questions, or given advice by people who do not understand my food limitations.
It's easy to avoid such occasions, but I do not recommend doing that. Usually there is something safe to eat. Salad without croutons is a good choice, when the dressing is served on the side. Sometimes I bring my own food, though that makes me feel conspicuous. It's just hard. Do whatever makes you comfortable and remember to enjoy the company of others more than you miss the food!
I hope this information is helpful. All the linked sites have good, clear information. How fortunate we Celiacs are to have the internet and so many devoted people willing to assist us. Take advantage of the experience of those who came before you. Before long, you'll know enough to help the people diagnosed after you.